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DIARIES => Post op diaries (>300 posts) => Topic started by: LighthouseFan on January 29, 2007, 01:32:26 AM

Title: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on January 29, 2007, 01:32:26 AM
Hi All -

Sorry it has taken me so long to post anything.  I had MPFL Reconstruction (using cadaver ligament - so no harvest site to deal with  :)) and LR surgery on Jan.18, 2007.  Ended up staying in hospital overnight (unexpectedly) and have been recovering at my grandmother's house since then (unfortunately she does not have internet access so I can't post anything while I am there  :().  I am visiting my parents for a little while today so I will try to post some of the post-op diary notes I have been keeping and will finish updating the post next time I visit parents (may be next weekend or so until I can do that).  I will be staying with my grandmother for at least another week (since she has told me I can stay with her longer and she does not have many steps to get into her home and I live in a second floor apartment).  Anyways . . . Here's the info:

Surgery Day
7:30 am - arrived at hospital.  Met with nurse, anesthesiologist, OS, etc.  Discussed concerns with anesthesiologist to make sure pain meds would be on board when I woke up from surgery.  OS assured me they would make sure I had been given pain meds before I go to recovery.  IV antibiotics were started and my grandmother was allowed to come back to wait with me.  OS came in to try to examine my knee before surgery.  Too much pain so OS couldn't complete exam to see how unstable kneecap was.  OS said he would examine it more under anesthesia.  He said either way he would do a lateral release, but that if the knee cap didn't go out completely and was only moderately unstable he would advance the muscle and tighten up the ligament instead of doing the reconstruction.  I also told OS that the R knee had subluxed multiple times the last few days (so he would realize that it was also loose in case he tried to use it for comparison during the surgery).  OS stressed how major this surgery and recovery is.

Surgery was scheduled for 8:30am.  They are running late.  Taken to OR at 9:15am.  Given anesthesia in OR.  Woke up in recovery shortly after 11:30am.

Pain medicine on board prior to waking up, but pain still 6/10.  Given more pain meds, but pain continued to increase.  Given more pain meds.  Pain sometimes decreased slightly for a few minutes, but would go up again.  :'(  Pain fluctuates significantly with meds.  Crying at times dur to pain.  At times pain was 9 1/2 out of 10.  Meds given: Fintyl (spelling?) in OR & in recovery, 60mg Toradol, 2 Percocet, 20mg Morphine, 1 Oxycontin.  Nurses were calling anesthesiologist to request orders for pain meds 1st few times, then anesthesiologist told nurses to call OS.  OS ordered Morphine and siad he would check on me when he gets out of surgery.  Pain still bad (along medial side of knee and under knee cap).  OS said he was admitting me to the hospital overnight to get pain under control, that he'd prescribe a patient controlled morphine pump and another course ofIV anitbiotics since I was staying.  OS said he would see me tonight.  Recovery room nurses set up morphine pump.

Around 4:30pm - taken to room in Orthopedic wing of hospital.  Family visited  :).  Ate dinner (pretty good for hospital food  ;)).  Talked with roommate (very nice lady) who had TKR 4 days ago.  Nurse told me to push button to activate morphine pump every 8 minutes until pain got down to 3 or 4/10.  Then to use pump PRN to keep pain contolled at 3 or 4/10.  After a few hours, got pain down to 4/10 so spread out time between pump activations.  Saw OS at 7:50pm when he was done in OR.  OS said that the knee was a "real mess".  OS did lateral release and MPFL Reconstruction.  OS said there was cartilage damage (I think OS said it was along Trochlear groove) from each time kneecap dislocated, but that there isn't much that can be done for it.  OS said he will see me tomorrow morning.  OS said he was glad to see I was in less pain that before (I was crying when he saw me in recovery) and that tomorrow they will wean me off pump and see how I do with Oxycontin and Percocet.  After OS left, I talked with roommate some more.

Pain began increasing again.  Just at time I was going to press pump, the pump began beeping, saying morphine was low.  Nurse replaced morphine cartridge and pump began beeping a few minutes later.  Turns out the tubing was shredded & leaking  :'(.  Nurse called to get help replacing tubing. About 25 minutes later I could use pump again.  3 hours later - still had not gotten pain back under control (it was 6/10).  Nurse gave me 2 Percocets.  About 20 minutes later, pain had increased to 7/10 & pain started along midpart of shin.  Nurse said she would check back in about 1/2 hour.  Pain pump low again.  Nurse increased morphine dose when refilled pump.  Pain still 7/10.  Itching -  began on arm with IV and ankle of L leg, spread to entire body.  No orders for Benadryl.  Nurse was calling to try to get an order.  Dr. did not write orders for Benadryl.  Just trying to keep self distracted from itching.  Nurse increased morphine pump dosage @2am and again @4am.  About 5:30am - pain got down to about 4 1/2 out of 10.  So finally got about 20 minutes of sleep.  About 6:15am pain is at 4/10 - now just need to keep it down!

Day 1 Post Op (Jan.19)
- Still can't lift own leg  :(
- Haven't gotten out of bed since surgery.  Due to difficulties with pain control, not even allowed out of bed to go to bathroom (have to use bed pan  :-\)
- Saw OS in hospital - OS said knee was "really messed up".  OS said surgery went well.  OS said every time knee dislocated it damaged cartilage in trochlear groove, but there's not much OS can do about it.  OS said he hopes that it doesn't cause me too much problems down the road.  OS asked about pain level: about 4/10.  OS asked if I had been taking pain meds at home before surgery.  I explained that I had been taking Vicodin for pain, but stopped taking it when I found out I would be having surgery and took Ibuprofen instead.  I stated that when I went for pre-admission testing, nurse told me I couldn't take ibuprofen for a week before surgery and that I should take the Vicodin if I needed to for pain.  I stated that I had managed to only take 3 Vicodin that week before surgery.  OS said that taking Vicodin before surgery could explain the pain management difficulties I was having after surgery, but that he did not think taking 3 pills the week before surgery should have caused that much of a problem.  OS said he was changing my orders for meds when I go home (add Celebrex & increase Oxycontin).  OS said to stop morphine pump and take Percocet this afternoon to see what pain level is with pills alone.  OS said I have to keep immobilizer on and use crutches, that I can do ankle pumps at home if able to do so with not too much pain, and that he was prescribing Oxycontin (2x/day), Percocet (2 pills every 4-6 hours), Celebrex daily, and 1 baby aspirin/day.
- My previous PT assistant stopped in to see me.   :)  She was working at hospital that day & had patient get discharged so she had time in her schedule.  She knew I wasn't supposed to be admitted to hospital, but she saw me on hospital PT list (so she knew I was admitted).  It was good to talk to her for awhile about surgery and how I was doing.
- Late morning - got up for 1st time to go to bathroom.  Lightheaded.  Blood rush to leg was painful.
- Nurse bathed me in bed.  Interesting  :-[.  1st time for everything.  No modesty after this surgery (bedpan, bathed in bed, etc.)  :-\
- Pain was controlled at 4/10 prior to PT.
- Dizzy at PT.  PT at 11:30am to practice walking on crutches and doing stairs.  Extra tough when still can't lift own leg.  WHen doing stairs, crutch (L one) slipped off step and full weight came down on op-leg (L).  :-\ :'( I was seeing stars, crying instantly!  I originally only had 1 PT (stood behind me holding my gown to help balance me), but when this happened, by time had full weight shifted to good leg there were 3 other PT's at my side.  I managed to get back to wheelchair, crying whole time.  Pain primarily @ MPFL Reconstruction site & under kneecap.  I worried I may have "undone" reconstruction.  PT asked if I wasnted to try walking again.  I said "No" (too much pain & just wanted to get back to room).  PT sat me in another room to wait for transport.  My previous PT assistant came over to see how I was doing.  I told her about slip/fall and she helped to calm me down some.  PT told me she would call my floor nurse to tell her what had happened.
- Back in room, nurse gave me ice & graham crackers so I could take more Percocet.  Pain @ 8/10.  Expressed concerns about slip/fall to nurse.  OS not back in office until after 1pm.  Nurse spoke w/OS later.  OS not concerned about checking knee before I go home.  Said knee is stable (& since I had immobilizer on and and just landed standing on that leg {instead of falling and hitting knee cap on something, etc.}) and I couldn't have damaged or "undone" knee.  OS stated that he knew knee would be/is very painful and instructed nurse to give me pain pills and see how they do.  Eventually pain went down to 4 1/2 out of 10.
- Ate lunch & let pain pills kick in.  ROommate discharged and asked me to keep in touch with her.
- I was discharged at 4:30pm.  Aunt and grandmother picked me up.  Dropped off prescriptions @ pharmacy on way home.  Dad picked up meds on way home from work.
- Got to grandmother's house and was more than ready to lay down with leg propped on pillows.  Had to use bathroom 1st (interesting figuring out how to do on own).
- Took pain pills & went to sleep.
- Parents visited.  :)
- Ate sandwich for dinner (not hungry for much of anything but knew had to eat so could take pain meds).
- more meds, TV, & sleeping (trying to catch up for not sleeping more than 20 minutes night before)
- scheduled cell phone to go off and tell me which meds to take each time for the rest of night and tomorrow.


That's all I have time to post now.  Will try to catch up on getting posts to current day next time I have internet access (probably will be next weekend or so before I can do that).  I need to get back to grandmother's house and get knee elevated.  Swelling quite a bit and painful right now, but is tolerable with pain pills at this time.  I hope everyone is doing well.  Please know that you are all in my thoughts and prayers, even though I can't read your posts and send messages most of the time at this point.  Take care.

- Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 01:00:27 AM
Hi Fellow KneeGeeks -

Sorry it has taken me so long to get back to posting.  I didn't have internet access until this week and this week has been a very rough week.  I'm going to get caught up as quickly as possible (in the next day or two) on posting all of the notes I have been keeping.

Day 2 Post-Op
- Pain kept at 3 or 4/10 through night by taking meds every 4 hours (waking up in middle of night to do so).
- kept leg propped up on 3 pillows all night (per OS instructions)
- spent most of day/evening reclining in an electronic lift chair with leg resting on pillow.  Iced knee periodically.  Decided best way to ice knee is to unstrap immobilizer (trying not to move leg at all when immobilizer is not strapped) & lay ice pack on top of ace bandage.
- Even through wrap, leg appears to be somewhat more swollen today.
- Ace wrap was sliding down towards ankle, so with help of mother & grnadmother we unwrapped & re-wrapped knee.  Mother help ankle to elevate (so I could get wrap under leg) and help keep leg straight.  Grandmother help side of immobilizer out of the way while I unwrapped leg.  Quite a site/ordeal seeing it take 3 people to get my knee unwrapped and re-wrapped.
- Incisions don't look as bad as I expected.  Mother & I took pictures (will post once I get back to my apartment and can get connector for digital camera to computer).  Looks like OS stitched incisions with fishing line & glued skin together.
- Will be glad to see OS on Monday to see how I can change dressings.
- Although MPFL incision area has been most painful, LR site was somewhat sorer today.  Muscle is more sore going up thigh (both sides, but more so on LR side).
- About 1/2 hour before can take next dose of pain meds, pain increases to 6/10 (ocasionally 7/10) even though leg is still elevated at the time.  Pain was usually 4/10 throughout day & evening.  Could definitely feel painful blood rushes each time I had to get up.
- Still itching all over (but no rash) so need to ask OS on Monday to see if side effect of meds.
- Annoying when knee is itchy under ace wrap & I can't scratch it because I can't unwrap it & can't see exactly where incisions are to know if I can scratch there.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 03:18:43 AM
Post-Op Day 3
- Pain kep around 4/10 through the night with getting up in middle of night to take meds on schedule (every 4 hours).  It would be so nice to get a longer chunk of sleep, but I'm afraid to not stay on top of the pain meds.  I don't want to let the pain get out of control like it did at the hospital.
- With all meds OS has me on (& with taking multiple meds at the same time), I am taking meds 8x/day.  :-\
- knee is itchier today.  Hopefully it just means that it's healing.  ::)  I didn't unwrap the knee, but took a peak from one edge of the bandage.  No obvious signs of infection or rash from what I could see.  However, looks like I may have an extra arthroscope/portal than what I had been told to expect.
- Ace wrap still sliding down inside immobilizer.  Tried to pull it up/adjust it without unwrapping it.  Not very successful.  I'm not supposed to do anything with the bandaging until I have the 1st post-op follow-up appointment with OS.
- See OS tomorrow morning at 10am.  I made a list of questions for the OS so I wouldn't forget what I wanted to ask him.
- Muscle (primarily lateral side thigh) has been twitching/jumping more today. More painful with the muscle twitches.
- With meds & ice, pain is about 4/10, but goes to 6 or 7/10 when the muscle twitches repeatedly.
- Leg soreness area seems to be spreading and leg seems more swollen today.
- I still get painful blood rushes when I get up to go to bathroom, etc.
- Basically spent day on recliner in grandmother's family room.
- Can't do quad contractions.  Difficulty lifting leg.  Doing ankle pumps, painful but know I need to do them.

Post-Op Day 4
- Saw OS today for 1st Post-op follow-up visit.  OS said the knee was more messed up than he had expected and that there was a cartilage defect in the trochlear groove.  Each time knee cap would go back in after dislocation it scraped cartilage.  OS smoothed cartiliage out as best as possible and said nothing else can really be done for it.  OS stated that cartilage defect can lead to early arthritis, but that it's like "looking into a crystal ball" to say it is will cause problems down the road.  OS stated that hopefully it will be a long time down the road before it causes problems.  OS stated that this incisions were closed internally with bio-absorbable stitches and that OS will cut "fishing line-type thing" at a later appointment.  OS used a bio-absorbable screw in the femur and 2 bio-absorbable anchors in the knee cap so there will be no need to have hardware removal down the road.  I can also now leave my incisions uncovered and can shower.  YEA!!!  :) I've just got to figure out how to do that without putting any weight on the leg.  I'm supposed to ice the knee one hour on and one hour off.  I start PT this week 2x/week for 6 weeks.  OS gave me a detailed description/protocol to give to PT (since no one in this area has had MPFL recon done before) with specifics: "Achieve normal flexion (equal to opposite side)" and "no focus on strengthening until achieve full motion".  OS also gave me home stretches to do 3 times daily for 15 minutes each time.  I also was told that I no longer need to wake self up in middle of night for pain meds unless pain is what wakes me up.  OS told me that the biggest thing I need to watch out for/be careful of is to make sure not to fall.  OS stated that falling would be the worst thing I could do right now because a fall could undo surgery or break knee cap.
- Pain was about 4/10 with meds.  However, pain was 7/10 during and shortly after stretching exercises.
- It's snowing today and I was very careful not to slip when I was out to go to OS appointment.
- Got 1st shower since surgery.  It was awkward, but felt great!  :)

Post-Op Day 5
- Pain worse this morning.  I would have thought that pain should have been getting a bit better by now.  Didn't wake up in middle of night to take pain meds.  Leg is swollen (brace feels extra tight), even though kep leg elevated all night.  Knee throbs when got up to go to bathroom.
- Pain is 7 or 8/10.  With pain meds got pain down to 4/10.
- 1st PT visit today.  Glad I got the PT I requested.  Session was tough, but PT is nice and understanding.  I can barely bend knee.  PT manipulated knee cap (very small movements).  PT said knee cap was very stiff and contributed to difficulties bending knee.  Painful and scary to have PT manipulate knee cap, but PT was gentle.  PT lifted leg to bed knee as much as was bearable (very little bed, only a few degrees).  PT originally said he was going to do 10, but saw how much pain I was in and so only did 7 & then gave me a break.  PT then said he was going to do another 10, but stopped at 8 when he saw my pain.  I told PT that I still can't lift my own leg (I reach down and pull on strap on immobilizer when I need to lift leg for something) & PT said that's OK and it will come along slowly.  He told me not to worry about it.  PT used electrical stimulation & ice for 20 minutes to decrease swelling and wake up muscles.  PT told me that I should come in for PT everyday.  I told him that I would not be able to have a ride in to PT daily.  PT told me to decide how often I could have transportation to PT and let him know.  OS originally prescribed PT for 2x/week, but PT said he could fax request to OS for new prescription for PT more often.  PT said it shouldn't be a problem & that OS's usually ok more frequent PT.  PT was surprised and commented that I have excellent health insurance benefits when he saw that my insurance covers unlimited PT sessions.  (Great to know that I have such good insurance . . . PT session coverage should make recovery a bit smoother  ;))  PT told me that it's important for me to come to PT as often as possible so I can get ROM back as quickly as possible.  He said the longer it takes for me to get ROM the less likely it is that I will ever get full ROM back.  OS sent a very specific prescription for PT.  I had told OS yesterday that previous PT Assistant had said they would need detailed prescription because they did not know that type of rehab protocol to follow for MPFL reconstruction.  OS wrote prescription for PT stating that main goal is to achieve full ROM (full flexion), "push to fexion" want same as opposite side, no focus on strengthening until achieve full motion.     I told PT I could come in 3x/week (preferrably in the morning since that works best for grandmother to drive me in).  PT and other PT's/Assistants in the office kept looking at my OS's handiwork commenting that it looked pretty good and that the scar shouldn't be too bad.  They also wondered why OS left such long pieces of "fishing line" coming out each end of the incision.  I told them I didn't know, but that OS said he would cut them at a later appointment.  PT joked around and told me that I should put beads on them to decorate it  ;).  From talking to PT, other PTs/Assistants @ PT office, & hospital staff it sounds like I may be the first one in this area to have this surgery done here.  People are curious about this surgery, what was done, what recovery will be like, etc.  PT is focusing on OS's specific directions & is gentle/understanding about pain, but will push me to make sure I work through pain to do what I need to do to get through recovery.  PT said reason I should come to PT as often as possible is because knee cap is stiff and I can't manipulate my own knee cap properly & because PT won't be as nice about exercises (pain) as I will be to myself during home exercises.  We scheduled for 3x/week.  I'm glad I'm working with this PT.  Hopefully, I can get ROM back quickly enough so OS won't do MUA.  OS says I'm not even allowed to walk until I get full ROM back.  Anyways . . . PT was big event of the day.
- Did 2 sets of home stretching (instead of 3 since had PT today).  Harder to bend knee today than yesterday,  2nd set considerably harder (less bed) and more painful.
- knee is very hot (even after icing, most of knee remains very hot).
- Knee has multiple numb spots on skin.  Hopefully they will go away over time.
- Scope holes seem fin, but MPFL incision is very itchy.  Trying super hard not to scratch incision, sometimes scratch around incision or gently rub over incision with palm of hand.  I think glue is what's making leg extra itchy.  Incision is mainly covered by steri-strips, but there are places where glue is on skin not covered by Steri-strip.  Itching in those areas stopped when I scratched glue off skin.
- I hate having to ask someone to do things for me or to drive me anywhere I have to go.  I don't like feeling like I'm imposing on someone or making someone do something I know they don't want to do.
- I'm also frustrated by people making comments that downplay what I'm going through or the recovery road that lies ahead of me.  They just don't understand.  :'(
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 03:53:27 AM
Post-Op Day 6
- Slept a bit better last night.  :)  Only woke up once - knee hurt some, but I was very stiff.
- Pain has remained about 4/10, but fluctuated more today than in the past few days.  Exercises (bending & extension) are more painful today than yesterday.  I make sure pain meds are in full force before I do my exercises, but after I finish exercises pain remains at 7/10 for awhile.  I ices & pain goes down to 5 or 6/10.  It takes about 2 hours before pain goes down to a 4/10.
- My ankle seems to be a bit swollen.  Not sure what I can do about it since I already keep my leg elevated almost all day (basically anytime except when I have to use the bathroom or shower).  My mom came over to have dinner tonight (brought McDonalds) with my grandmother and I.  Mom took picture of my knee for me and said she thinks knee is more swollen than it had been.
- Thigh muscles are extra stiff and sore today.  Not sure it that's from the surgery, from wearing the immobilizer, or from sitting around with leg elevated.  Hopefully, it's nothing serious.  If it keeps up, I may say something to my PT next time I see him.  I have PT tomorrow but will be working with a PT Assistant because my PT is not working tomorrow.
- This evening my grandmother offered to let me stay with her for an extra week.  I thanked her & told her I would take her up on that offer.  It's nice to have the company and definitely makes things easier for me (she makes meals and gets ice or drinks for me when needed).  I try not to ask her for too much (in fact, she's usually the one asking if I need ice or anything).  I am very thankful for her and her willingness to help me out during recovery.   :)  I have definitely been blessed! ;D

Post-Op Day 7
- Leg feels swollen, throbbing, and painful when got up this morning.  Pain is 7/10.  Took pain meds and pain decreased to 5/10.
- While waiting for PT, a lady in the waiting room asked if I had surgery and then what I had done.  I told her LR and MPFL recon.  She asked about scar & how it's going.  She told me her daughter is scheduled for MPFL recon in February.  We have same surgeon.  We talked for awhile & I gave her web address for KneeGeeks and my screen name in case she or daughter wants to talk with someone who has gone through same thing.
- PT today.  painful.  Tried new exercises to gain flexion.  Tried TENS unit to decrease pain while doing exercises (helped some).  Knee more swollen today.  Active ROM = 37-degrees; Passive ROM measured at 42-degrees (PT was being generous - it was closer to 41-degrees).  PT asked me again today if there was any way that I could come in everyday.  I told him I could only aske my grandmother to bring me to PT 3x/week.  I told him the only way I could come in more often is if I can come on weekend or evenings after parents get off work.  My PT said he is working at hospital this weekend, so he scheduled me for a session with him on Saturday at the hospital.
- Lateral side of thigh is extra sore and tight.
- I've gotten multiple Charley Horses (big cramps) in calf muscle today (very painful).
- Leg continues to get stiffer and more sore each time I bend the knee.
- Got a Get Well card from bosses and co-workers today (totally made my day)!!!!  ;D
- Took shower tonight.  I would have thought that it would get easier each time I took a shower (figuring out logistics of showering while standing on one leg and not putting any weight on op-leg at anytime).  However, it was harder to get shower tonight than Monday night (post-op day 4).  After shower, (within 5 minutes) I was sitting with my knee elevated with ice on it.  Knee hasn't hurt this much since I came home from the hospital.  :-\ :'(

Post-Op Day 8
- Knee swollen, throbbing, painful when got up this morning.  I wear my immobilizer and keep my leg elevated with 3 pillows (as per OS's specific instructions).  I don't know what else I can do to reduce swelling and pain in monring.  I'll have to ask PT today to see if he has any ideas.
- I definitely still feel blood rushes when I have to stand up for something.
- Maneuvering with crutches and figuring out how to do some basic things (like getting dressed, putting on shoes, using bathroom, etc) has gotten easier that it was earlier this week.  Showering and trying to carry some things are still very difficult.
- I am so thankful & fortunate to have a family that helps me out.  My grandmother is spoiling me  ;D (cooking, doing laundry, buring foods that I'm hungry for), but I hate asking for things & don't want to be making her do so much stuff for me. 
- Called OS's office to get another prescription of Percocet.  I am trying not to take so much pain meds, but was worried that I may run out of Percocet before I could get refill on Monday or Tuesday.  Dad was supposed to be picking up script from Dr. at lunch and dropping it off at pharmacy.
- PT today.  PT showed me some new things to do at home to stretch knee.  PT used TENS unit to decrease pain while he bent my knee.  PT also rubbed knee or scratched knee where I told him it was painful while he bent my knee.  It helped because rubbing the skinn or scratching it gave me a different sensation to focus on instead of pain there while stretching the knee.  PT measured ROM (assisted) at 41-degrees at beginning of PT and ROM (assisted) was 62-degrees at end of stretching.  :) It was painful, but made some progress.  PT joked around that he was wearing his "mean hat" while he was pushing to bend my knee further, but he is pushing me because we both want to avoid me having to have MUA by the OS.  PT said only other thing he can think of to try to decrease swelling I have when I wake up is to try using an ace wrap under brace when I sleep.  We'll see how that goes.  PT loaned me a TENS unit to use at home to decrease pain and to hopefully aid in allowing me to bed knee more (by decreasing pain while I do so).
- TENS unit helped to decrease ain some and allowed me to bed knee more during home exercises (less pain = more bend  ;))
- While shaving tonight, I accidentally cut off fishing line thing on upper end of MPFL incision.  :-\ Only about 1/2 cm of fishing line is still sticking out of incision.  I'll call OS Monday morning to make sure there's no problem with this (also want to make sure OS doesn't need to do anything with it before skin heals over it).
- Dad didn't get to OS office before office closed for day.  :-\  Dad will pick up script for Percocet first thing Monday morning.  He said he hopes I have enough meds to get me through the weekend.  He also went to my apartment to see if I had any Percocet left in cabinet from injury earlier this year.  Thankfully I had 4 Percocet left from earlier injury.  I feel a little bit better that I should have enough meds to get me through weekend.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 04:13:50 AM
Post-Op Day 9
- Had knee wrapped in ace bandage (under immobilizer) overnight and kept knee elevated.  Woke up with knee still painful and throbbing, but not quite as swollen as other mornings.
- MPFL incision site is more painful and itchier than last few days.
- PT this morning.  PT really pushed me to bend my knee further.  So painful I almost climbed off table at one point.  Although painful, by end of bending/stretching, ROM = 73 degrees (with PT bending the knee).  PT says our goal is 110-degrees by end of next week.
- I'm ready to tead Steri-Strips off.  Very itchy.  Tore off 2 strips, but trying to leave other 4 strips on and deal with itchiness.
- Still have numb spots on knee (same as has been since surgery).
- More muscle twitches (some bad enough to cause leg to jump - knee extends enough to lift lower leg & foot off of pillow).
- Took off rest of steri-strips.  Couldn't stand the itching anymore.
- Emotions have been up & down dealing with knee (especially since the surgery).  I'm stir-crazy, frustrated/bummed at lack of mobility and pain.

Post-Op Day 10
- Knee remains swollen, throbbing, and painful when wake up in morning.  Ace wrap helps some, but not much.  Don't know what else to do (wrap ace bandage on knee, wear immobilizer, take pain meds before bed, sleep with leg elevated on 3 pillows).  I'm FRUSTRATED!!!!
- Visited with family at parents' house today.  Mom's family came in from out of town.  1st time they've seen me since surgery.  They were very curious about my knee (surgery, scar, rehab, pain, etc) especially when I had to hook myself up to the TENS unit & do my home stretching exercises.  Grandmother (not the one I'm staying with) brought me a beautiful plant.  I have no idea with kind it is, but it has bright red little flowers at the top of long straight stems, at base of stems the plant is full of green & white variegated leaves.  As I said, it's a beautiful plant & very cheerful to look at.   ;D Just brightens up the room.  I basically spent the afternoon plopped on the sofa with leg resting on coffee table right in front of me.  Watching 9-month old nephew made me laugh.  He just started walking 2 weeks ago.  He was exploring, getting into everything, talking to everyone, and very interested in trying to play with (& chew on) my crutches.  The smiling and laughting were good medicine for the day.  I'm been trying to remain positive & cheerful, but it's been getting much more difficult to do (frustrated, bouts of feeling down or sorry for myself, upset when people downplay how major or difficult this surgery and recovery are or doubt that I can be in as much pain as I am).  Anyways, watching my nephew play was very helpful in combatting the negative feelings.
- Mom painted my toe nails today.  Strange as it might seem, having my toe nails and fingernails painted helps me to feel better (emotionally).  To anyonw who might be reading this post and going through recovery or approaching surgery day . . . I highly recommend pampering yourself when possible.  Try to think of small things that typically help you feel better (physically & emotionally).  Make a list of those things that you could do for yourself (when mobility is limited or painful) and that you could ask someone to do for you (if you can't do for yourself).  Sometimes small things to pamper oneself can go a long way towards improving mood and making things more tolerable.  That has been my insight for the day.
- Throughout the day pain remained abut 3/10 (lowest of any day so far  :)), but tonight pain increased to 6/10.  Specific points on and under knee cap really started hurting (pain is constant, but gets worse when touched).  This is a new pain.  Not sure what this is from.  Also, lateral side of thigh muscle is very sore (medial side of thigh is also getting more sore).  Not sure why this is happening.  Muscle twitches have gotten stronger and more frequent.  Quad is still pretty much shut down.  Don't know when to expect quad to wake up.  Trying not to worry about it.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 04:36:50 AM
Post-Op Day 11
- Knee contineus to wake me up in middle of night (3x's last night) and still swells overnight (but ace wrap appears to help some).
- Iced knee prior to PT.
- PT today.  ROM = 75-degrees after PT really pushed me and bent my knee (painful).  PT commented that it looks like my incision is healing nicely & that scar should look pretty good.  PT began to gently massage incision area to staart loosening the scar tissue.  PT said he will more aggressively massage scar area once incision is completely healed.  When I asked about lateral thigh muscle soreness, PT said he has had other patients who have had lateral release done & had muscle soreness afterwards, but not as far up thigh as I do.  PT said that if a tournicate had been used during surgery (& PT's not sure it if was or not) that could explain muscle soreness being further up thigh.  PT remarked that knee does not look as swollen today.
- I'm frustrated that I've only gained 2-degrees ROM between Saturday and today (Monday).  I need to gain ROM more than that and more quickly than that.  I'm trying to avoid have OS do an MUA.  I have visit with OS on Feb.13.  OS didn't say if he expects full ROM by Feb.13 or what ROM he expects by then in order to avoid MUA.  OS said I need to get full ROM ASAP & I have to get full ROM before I ma allowed to learn to walk again or do any strengthening exercises in PT.  OS didn't say how long he would give me to work on ROM before doing MUA if full ROM not achieved.  Anyways . . . don't know, so all I can do is work as hard as I can at PT and with home exercises.
- After PT, I sat in car while grandmother visited my great-aunt in hospital (grandmother said she would only be a few minutes and she didn't think I should hassle with trying to get in and out of the car again).  Then we went home (I'm still staying with grandmother).  I'm surprised by how tired I am after PT (especially considering I am not very active @ PT and most of the time is spent with PT bending my knee or manipulating my knee cap.  Just getting in and out of car is tiring.
- It amazes me how many things I took for granted before (get up & go whenever I wanted, walking through a store, getting in and out of a car easily, etc).  Now I appreciate the small things much more (esp. those things related to mobility).
- Quads still haven't woken up.
- Lost of muscle twitches in multiple different muscles/locations on leg.  Some twitches are severe.  All are painful.
- After icing knee in evening, I noticed a lump of swelling on lateral side of thigh about halfway up thigh.  Not sure what caused it.  Painful.  I'll keep an eye on it.  If it keeps happening or gets worse, I'll ask OS about it on 2/13/07.

Post-OP Day 12
- Knee not as swollen as it has been , still swollen some but not as much.
- Painful, but not the throbbing sort it had been.  Blood rushes are a little less painful (but worse @ night).
- Pushing myself to stretch/bend knee as far as I can (very painful), feels like there are specific spots that are bruised under knee cap.
- Have strange hard bumps near MPFL incision and at multiple places around and on knee cap.
- Still have lump on later side of thigh (painful) but thigh is more painful further up the muscle on the later side.
- Sat on side of bathtub to wash up and shave tonight.  Didn't bend knee, put weight on it, or do anything else that I'm not supposed to do.  However, by time I was done a few minutes later, my knee hurt badly enought that I felt sick from the pain.  Within 5 minutes, I was sitting down with leg elevated, icing knee.  5-10 minutes later I took another pain pill and ate a little snack (so I wouldn't get sick from meds).  It took about an hour for pain to become more tolerable.
- I'm not sure what is causeing so much pain when I'm following OS instructions, didn't fall or put weight on leg, didn't bend or twist knee, etc.  So I'm not sure how to prevent the pain, because I can't avoid showering, bathing, shaving.  :-\
- Found a comfortable position to sit with leg elevated and then out of the blue a specific spot on my knee cap sharted hurting quite a bit (lower edge lateral side).
- Muscle twitches continue, increasing in frequency
- Sill not sleeping through the night.  Knee wakes me up multiple times each night.  Haven't found comfortable way to sleep (still using 3 pillows to elevate leg) and have to sleep on back (makes shoulders & upper arms hurt).  Occasionally try to sleep on side with pillows under leg (wake up with knee throbbing and arm numb from laying on it).
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 10, 2007, 04:58:38 AM
Post-Op Day 13
- Painful, but not as swollen as had been.  Later side of mid thigh is swollen and rather painful though.
- PT this morning.  After PT assistant worked with bending my knee I got to ROM = 78-degrees (painful).  PT said he wanted to be the one to manipulate my knee cap.  I expressed to PT my frustrations/concerns about getting so few degrees of increased ROM this week.  PT said he doesn't feel a hard stop when bending my knee, that it's stiff but it's basically the pain that's preventing further knee bend at this time.  PT expressed this as being a positive thing because ROM can progress over time as I work through pain.  PT then bent knee some more, pushing even harder.  PT said he was trying to get me more degrees of bend so that I could feel better about the numbers.  FInal measurement for today's sessions was ROM = 85-degrees with PT pushing knee (I practically jumped off the table on the verge of tears).  I'm glad to have a PT who will push me because that's how I'm going to make progress through the pain.  However, I don't know how I can deal with it if pain has me on verge of tears at each PT session.  Iced knee before leaving PT. 
- Knee rather painful on way home.  Even though wearing an immobilizer, knee was painful with each bump on the road.
- Iced knee as soon as I got back to grandmother's house.  Wished I could take pain pill, but it hadn't been long enough since I took pain meds before going to PT.  Sat in recliner with knee elevated, trying not to think about how much knee hurt.
- Ate lunch.  TOok more pain meds and waited for meds to kick in.
- 1 1/2 hours lager - knee still hurting - pain especially around MPFL incision and under knee cap.
- Muscle twitches continue and are increasing in frequency & severity - causes leg to jump and/or twist - painful.
- I'm so tired.  I know a side effect of pain meds is that they can make me drowsy, but I don't feel like that's enough to explain how tired I am.  I wake up multiple times through the night due to knee pain.  However, I feel so tired that doesn't seem to account for it completely.
- After bathing, while dryign off, I moved a very slight amount to the side but instead of heel sliding on floor, heel got caught but rest of leg tried to move an inch or so.  DIdn't have immobilizer on since I was still drying off.  Felt something pop  :-\ on lower, lateral side of knee cap, felt strange sensation (pulling with a vibration sort of thing) from location of "pop" across knee cap to medial side of knee cap.  Within 10 minutes I was sitting with knee elevated icing it.  Upper medial side of knee cap began hurting (sharp pain).  Tried resting knee in a slightly different position, elevating knee, icing knee, etc, but none of it helps ease pain.  Can't take pain meds because it's too soon since I took previous dose.  UGH!!!  :'(

Post-Op Day 14
- Knee not as swollen as initally, but still swollen at least 2x's as big as other knee.
- Snowed last night.  Not enough to amount to much of anything, but enough to coat everything and make it a bit slick for walking.  I took it very slow and careful, but was worried that I might fall.  Thankfully, make it everywhere I had to go without incident.
- PT today.  Told PT about something popping/snapping in knee last night.  PT massaged scars and manipulated knee cap.  PT said popping/snapping may just have been scar tissue breaking loose.  PT pushed/bent knee (painful) and got knee to 86-dgrees ROM at which point I was ready to climb off of table due to pain.  I expressed frustration at only gaining 1-degree of ROM today after lots of painful bending/stretching.  PT said that at least it's 1-degree in the right direction and that I didn't loose 1-degree.  I told PT that I thought that the goal he set for me to reach 110-degrees by the end of this week was unrealistic.  PT said to shoot for the mood and you'll land among the stars.  PT revised expectations and said to aim for 90-degrees by Monday's PT and 100-degrees by the end of next week.  PT tried to convince me to come in for PT again tomorrow, but I told him there was no way I could get a ride in.  He told me to work extra hard over the weekend.
- Knee hurt more after PT than it did before PT.  When I got back to grandmother's house, I say with knee elevated while icing it.  Too early to take more pain meds.
- Later in the day, knee more swollen than has been in past few days.  Spots on knee (lateral and medial sides) that hurt during last night's popping/snapping incident are hurting more this afternoon and evening.  I'm hoping it was just scar tissue, but am worried that it may have been something else.
- Even though have been keeping up on pain meds, knee is hurting worse this evening (5 or 6/10).
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 11, 2007, 02:21:28 AM
Post-Op Day 15
- Knee is no more swollen than it has been for the last few days, but is definitely more painful than has been the last few days.
- Woke up 3x's overnight due to knee pain.
- Multiple specific spots that are particularly painful including: spots that hurt in popping/snapping incident, upper lateral edge of knee cap, various points along incision, patellar tendon below knee cap, various spots beginning at knee cap and going in a line through incision and continuing to point on medial side of knee at bottom of thigh.
- Frustrated and down today (started crying a few times  :'(, but stopped myself within 2 or 3 minutes).  I wanted to cry a whole lot more but would not let myself.
- Found out short-term disability claim is approved through 2/28/2007, but disability company needs more information from OS to justify why I need to be off work for longer than that (OS has told me to expect to be off work for 3 months after surgery).  The disability company does not understand the reality of the job that I do (working with behaviorally challenging children and children on the autism spectrum).  Person from the disability company stated that OS put on form that it is expected I would need to be off work until April 7, 2007 and disability company does not understand why I would need to be off work for more than 6 weeks.  Guess this will be another point of discussion to bring up to OS at appointment on Feb.13, 2007 and see what can be done about it.  I'm going to have another form that I'll need the OS to fill out after the appointment to explain why OS thinks I need to be off work for that long.  Trying to look on a positive note - at least disability has been approved through the end of this month, so I can pay my bills for another month.
- I really want to get back to work (love my job  :), miss the people  :'(, and am going stir-crazy  :-\).  However, I don't want to risk returning to work too soon and doing damage to knee or injuring something else (due to compensating for op-knee), etc.  I want to follow Dr.'s orders to the letter so that I can have the best/fullest recovery possible.
- I'm going to pray about the situation and try not to worry about it because there is nothing else I can do until I talk to OS on Feb.13 at follow-up appointment (I've already talked to my employer about getting more accurate job info to the disability company and so that is being taken care of).  Other than that, I'm just going to focus on doing what OS and PT tell me to do and on getting well.
- At home stretching exercises are painful but I'm doing them.
- I'm having trouble thinking of positive things today.  Will try to do better in days to come.

Post-Op Day 18 & 19
- Ended up in ER today due to vomiting.  So sick can't even keep down water.  I could deal with being sick, except that I'm so sick I can't keep down any of my meds and my knee urts so bad I want to scream and cry.  Got IV fluids (I was dehydrated), anti-nausea meds thru IV, and pain meds thru IV.  Feel much better after IV fluids and meds.  ER Doc not sure what caused me to get so sick so quickly.  I had spent some time around my nephew a few days ago who had a strain of the neurovirus that people get on cruise ships (however, no one had been on a cruise ship in years).  We thought he was all better and not contagious by the time I was around him (he was up playing like nothing was wrong - he's only 10 months old so hard to know for sure).  Hoping, I didn't catch what he had.  Although my mother expressed concern to ER Doc that my pain meds may have caused me to get sick, ER Doc told me to continue with current meds (he didn't think I got sick from the meds because I had been on them for so long with no problem and sickness came on so suddenly) until I could contact OS office next morning.  ER Doc also gave me script for anti-nausea pills before sending me home.  Came home and slept rest of day and night.  Didn't feel like really sick next day (took anti-nausea pills on schedule like clockwork), but didn't feel like eating much of anything either.  However, made self eat some chicken noodle soup and that stayed down alright.  Called OS office and was told to stop taking Oxycontin and Percocet and start taking 800mg of Ibuprofen.  However, I was told that I could continue to take 1 Percocet before going to PT and before doing home stretches/exercises.

Post-Op Day 20
- PT today was extra painful (may have been due to decreasing pain meds - only allowed to take 1 Percocet before PT).  By end of PT ROM = 87-degrees.  Frustrated about only 1-degree ROM increase since last PT (6 days ago).  PT reminded me that it may have been due to having been almost a week since I had a really good stretch.
- Frustrated and down lately.  Don't feel like doing much of anything except sleep.  :'(

Post-Op Day 21
- Around midnight chest started hurting (whole way around chest at level just below shoulder blades).  Difficulty breathing (hurts really bad to take a deeper breath).  Very painful to lay on back or on either side.  Felt like someone had put a band around my chest and kept tightening it.
- Went to ER around 1:30am.  Bloodwork (felt like a pin cushin due to lots of tests being done and IV started.  To make matters worse - nurse could not get IV started and had to try multiple sites so now I have a fairly good size green bruise on my arm), X-Ray, CT scan.  Lots of tests done to see if I had a blood clot in my lung (due to chest pain and recent surgery).  Thankfully, no blood clot was seen.  ER Doc didn't see anything obvious or acutely wrong.  However, ER Doc said that there are many things that could cause it, but that it could be from using crutches for this length of time.  (I didn't say this to the Dr. but I'm not sure that I believe it's from using the crutches.  I've been on crutches for this long before.  Also, if it's from crutches I would think that my chest would hurt more when using the crutches).  ER Doc gave me IV fluids, pain meds (IV) and anti-nausea meds (IV) at ER.  Sent me home with pain meds script (Vicodin) to take for the chest pain.  I don't want to keep taking pain meds  :(.  I want Dr. to figure out what is going on!  :( ??? :-\ :'(  Hopefully, I won't end up back at the ER anytime in the near future and whatever this is, just goes away.
- Got home around 6:45am.  Slept most of the morning and early afternoon.  Chest continues to hurt, but not nearly as bad as when went to ER very early this morning.  Knee not hurting much today.  Maybe pain sensors were overloaded with the chest pain.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 11, 2007, 02:32:31 AM
Post-Op Day 22
- Hit ROM = 88-degrees at PT today (with PT pushing leg to bed it).  I don't get anywhere near that on my own.  Hoping to hit at least 90-degrees ROM by Monday.  See OS on Tuesday and I know OS won't be happy with that ROM.  However, I'm hoping OS won't be displeased either.  I'm hoping that if I can get to 90-degrees ROM by time I see OS on Tuesday that OS won't tell me that MUA needs to be done.
- PT tried to encourage me by reminding me that it's another degree in the right direction and that once someone gets 90-degrees, gaining ROM seems to go easier after that.  PT gave me another stretch to do at home and encouraged me to work doubly hard over the weekend so that we can get at least 90-degrees on Monday.  I'm really thankful for the PT that I have, as he does push me through some pain but is encouraging and jokes around also.  My mood is definitely not always the greatest, but my PT does try to keep things light.  Strange as it may seem, PT has become the highlight of my day (I guess that's what happens when mobility is limited and one is going stir-crazy).  :P ;)
- However, overall, my mood is in a funk lately.  I'm depressed with this whole situation.  I know part of this is because of how little progress I've made in the last 1 1/2 weeks.  However, I'm not so sure that some of this depression isn't due to all the meds I've been on and it seems like it's gotten worse this week when doctors have stopped or changed a bunch of my meds.  Although depression may be worse this week due to having been sick and being in more pain.  Anyways . . . trying to figure out ways to get out of this mood funk.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 11, 2007, 02:46:52 AM
I have finally caught up to the current day on this post-op diary.   :P  Sorry it took so long for me to do.  I never realized how much I would miss not having internet access (or having it on a very limited basis - about 4 hours one day during a 2 1/2 week time span).  Anyways . . . it is now Post-op day 23.  My mood got a good boost today.  :) I got to leave the house on a shopping trip this morning (I only went in one store because I could ride one of those little carts with a basket instead of trying to walk on crutches the whole time).  I spent most of the morning sitting in the backseat of the car, listening to music while my mom went shopping in various stores around town.  Even though the weather was raw and brutally cold, the change of scenery was wonderful!  :D  I worked really hard doing my home stretches/exercises.  I don't think I hit 90-degrees ROM today, but I worked really hard and keep reminding myself that I still have tomorrow.  I also keep reminding myself that as long as I am doing my best with my stretches that is all I can do/ask of myself. 

I hope that everyone is doing well and having a good knee day!  :)  I now have more consistent internet access, so if anyone would like to chat (either regular postings or private messages) I would love to talk with you.  For now, I'm going to sign off.  My knee is begging for some attention and elevation right now.  I'm off to go look at a new craft book I picked up while shopping today.  :D Take care.

- Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: doublea21 on February 11, 2007, 05:47:24 AM
Glad to hear that your are doing ok after surgery.  Try and stay positive, it is a long road but does get easier.  Just for comparison and I hope your road is less difficult than mine was from the MPFL reconstruction, but I have just finally regained full ROM proving everyone who said that since my leg was at 120 at 3 months that that was probably all I would get out of it.  I am now almost 7 months post op and just regained full ROM within the last week (160).  Also, the last strength test I had my quad was at 80% and hamstring at 94% (even with graft).  I am still working on it and am determined to get it completely back.  Good luck with your recovery.  Hope they figured out what was causing the chest pain or that it is going away now.

Amy
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 11, 2007, 10:55:51 PM
Amy -
Thanks for the encouragement!  :)  I am trying to stay positive (which is much easier to do now that I'm not sick anymore and now that the chest pain has significantly decreased) and am working really hard at my home stretches/exercises in the hopes of getting at least 90-degrees ROM tomorrow during PT.  I'm sooooo glad to hear how well you are doing!!  WOW!!  :o  I don't even have 160-degrees ROM with my good leg!  My OS is considering me to have full ROM when it is equal to the ROM on my good leg.  I'm just nervous because my OS had told me that if I did not regain ROM quickly enough, he would do an MUA.  However, OS did not tell me what he would consider quickly enough in order to avoid the MUA.  All OS told me was that he would be happy to see me have full ROM when I go back to see him on Feb.13.  I don't think OS will be happy with 90-degrees ROM (I'm REALLY hoping to have at least that by then  ::)), but I'm hoping that he will be satisfied enough with that not to schedule MUA.  Anyways . . . trying not to worry about that.  I'm working hard at my home exercises and at PT and there's really nothing else I can do about it at this point, so there's no point in worrying about it.  Also . . . about the chest pain, still don't know what caused it, but it only hurts a little bit every so often today.  It seems to be going away (I haven't had to take any pain meds for it at all today).  I wish you well on a complete recovery!  :D  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 12, 2007, 05:59:27 PM
Post-Op Day 25

I got 94-degrees ROM at PT this morning.  That is definitely more than I thought that I would get.  MY PT really pushed my leg (hurt so much I tried to get off the table and was on the verge of tears).  I don't get anywhere near that on my own.  I'm hoping that OS will be okay with only having that much ROM when I see him tomorrow.  Really don't want to have an MUA.  ::) :-\  Anyways . . . there isn't much news otherwise.  Knee is more swollen and painful since PT, but that is to be expected I suppose.  I think I'm going to go get something to eat for lunch and then elevate my knee some more. 

Wishing you all a good knee day.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 16, 2007, 12:45:12 AM
Well, I saw my OS on Tuesday (2/13/07) and he seems to be pleased with the way the scar is healing.  However, he told me that I need to massage it more to loosen it up.  He tried to bend my knee, but did not get anywhere near 90-degrees.  I told him that PT got 94-degrees the day before and he told me he believed me.  He's not going to worry about doing an MUA at this point, but said we will discuss the possibility of it when I see him again in 6 weeks if I don't have enough ROM then.  OS also pushed around on my knee cap to prove how stable it is and that it won't dislocate (he pushed around the knee cap on my "good leg" also to show how much looser the knee cap is on my "good leg").  I'm not a fan of having someone play with my knee cap, but it was nice to see how much more stable the knee cap is on op-leg.  OS told me that I've got another 2 weeks of non-weight bearing and can then gradually begin to walk and wean myself off of the crutches.  However, he did tell me that I don't need to wear my immobilizer anymore (although we did discuss the benefits of wearing it when outside on inclement weather days as some "fall protection").  I must admit it feels really strange not to wear the immobilizer and feel some swing/bend in the knee when using the crutches.  I guess it will just take some getting used to  ::) :-\.  OS also gave me another stretch to do at home (lay on stomach with bath towel around ankle.  Pull on towel to bend leg backwards.)  Tried it . . . difficult to do.  First off, my knee is VERY unhappy with me when I try to lay on my stomach.  Second, a bathtowel will not stay looped around my ankle (it slides up leg towards knee first time I try to bend it).  Trying to improvise using a therapy band tied on my foot.  Will have to ask PT tomorrow if he has any ideas for better ways to do this stretch.  Really want to figure out what stretches I can do at home so that I can gain ROM as quickly as possible.  I have 6 weeks to work as hard as I can at PT and with home stretches before I see OS again and try to avoid MUA.  I'm also going to do what I can to go to PT more often since OS said I can start driving soon(going to try for 5 times/week since I have unlimited PT with my health insurance  :)).  I am so frustrated with this knee and not being able to work and participate in other activities I enjoy!  I just want to get this knee rehabbed and back to functioning normally as quickly as possible.  So I am determined to do whatever I can to make that happen (even if it means letting my PT torture me 5 times/week).  Seriously, I do have a nice PT, but he does push me much further than what I can do to myself.  He does what he needs to do to get my knee bending, but he is nice enough to joke around and try to distract me from the pain.  Anyways . . . I need to get going and eat dinner.  I wish everyone well and stay safe.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 16, 2007, 10:46:43 PM
Strange thing happened last night.  One of the arthroscope portal scars got red and broke open (after being completely sealed/healed-over for over 2 weeks).  I'm not sure what caused it and am not sure if it is something to worry about or not ???.  At this point, I'm just going to keep a close eye on it and see if anything changes.  If anyone has any ideas on what may have happened, please let me know.  I'd appreciate any advice you could offer. 

I had PT today and my PT was not sure what caused it to break open.  PT just joked around that he was hoping when he bent my knee that pus did not come squirting out at him.  My PT likes to talk and make jokes to try to keep me distracted while he tortures me   :P ;).  With lots of torturing by the PT (I almost cried and started to black out from pain), I got 97-degrees ROM today.  I think PT set the goal at 110-degrees by the end of next week.  I'm not sure if that's possible  ::), but I'm going to work my hardest to achieve it.  My PT was also able to show me an improvised way to do the new stretch that the OS told me to do at home each day.  (Please see my previous post in this thread for a description of stretch from OS and the difficulties with it.)  The way I will be doing the stretch now is to lay on my side so that my good leg is on the bottom with a pillow between my knees.  I then put the corner of a fitted sheet (the part that has the elastic) over my foot (op-leg) and can then pull on the sheet to bend my knee backwards.  Tried it at PT today and it worked marvelously better than the previous way I had been told to do it.  It definitely hurts to do the stretch, but it is much more doable/practical now.

Anyways . . . I think that's about it for now.  I hope everyone is having a good knee day and has a good weekend.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: doublea21 on February 16, 2007, 11:02:48 PM
Glad to hear you are doing better.  I have no idea what you may have done to split open the scar.  I would call and leave a message with your OS so that they know it happened and can decide if they need to do anything further with it to make sure it heals properly.  I had a lot of trouble with the stretch that you mentioned too at the beginning.  SOunds like your PT came up with a way that works for you.  I used a rolled up hand towel under my leg (a little above the top of the knee cap) so that when I bent my leg my patella wouldn't dig into the table so that I could do the stretch easier.  I found the PT theraband stays best around my ankle to pull the leg.

Keep up working hard on your rehab.
Amy
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 18, 2007, 01:25:22 AM
Amy,

It was good to hear from you!  Thank you so much for your words of encouragement!  I really appreciate it.  My arthroscope portal scar has scabbed over again and appears to be healing (redness seems to have decreased).  Hopefully it doesn't break open again, but if it does, I am planning on calling my OS to see what is going on.  It just seemed like a freaky thing to have happen after it was healed over for 2 weeks (and 2 days after OS had commented on how nicely the scars were healing). 

I hope that things are going well for you.  I'm working hard with rehab (PT and home stretches) and trying not to go stir-crazy.  I hate being cooped up inside and not being able to walk :-\(can't wait to ditch the crutches). :P  Also . . . if you have any tips for dealing with the pain during PT I would appreciate it.  Sometimes I feel like I'm just a big baby when it comes to pain :'( (especially during PT).  I take a Percocet before I go to PT (not supposed to be taking them anymore per OS instructions, but OS says I can still take one prior to PT or home stretching session) and my PT tries to distract me by joking around and talking with me.  However, I end up on the verge of tears or almost blacking out during each PT session.  I would appreciate any tips for pain management/coping, because I want to let PT push my leg as hard as he needs to do to get it bending more quickly.  However, I keep getting down on myself for how much pain I'm in and not being able to deal with it better.  Thank you in advance for any advice you could provide.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 19, 2007, 06:30:41 PM
Finally drove for the first time since surgery!  :D It was great to be able to take myself to PT today!!  I knew that I missed driving, but I don't think I actually realized how much I missed driving until I was on my way to PT today.  Driving itself isn't too bad (although I have to use my mother's car because mine has a clutch and I can't use a clutch yet per OS instructions).  However, getting in and out of the car is a bit tricky.  I realized today that even if my leg is only bent a very slight amount, I cannot straighten it out on its own.  I have to push the op-leg with my good leg or else actually pick up the op-leg with my hand in order to straighten it.  I can use my hip to move my upper leg some if I have to, but I have no muscle control of my lower leg (below knee) right now.  I'm not sure . . . is this normal or not for being 4 1/2 weeks post-op? :-\ ???  I didn't think to ask my PT about it today.  Also, I'm the first person in this area to have this surgery done, so I'm not sure if my PT would know for sure if this is normal for someone after the MPFL reconstruction surgery.  I'll try to remember though to say something to PT tomorrow.  I'm still non-weight bearing and am not allowed to do any strengthening exercises until I achieve full ROM, but I could not do a straight leg raise at this point if my life depended on it.  Anyways . . . I'm trying not to worry about it, but it is kind of scary to be unable to control movement of my lower leg (I also have somewhat limited control of my upper leg at this point).

I only got 95-degrees ROM at PT today (I got 97-degrees last Friday).  :(  My PT said he was going a bit easy on me today.  However, he seems to be convinced that we will get 100-degrees ROM by Wednesday.  I don't know  ::), but I'll take his word for it and work as hard as I can with home stretches and at PT tomorrow and Wednesday.   Hopefully, doing PT 5 days/week will help me get my ROM back as quickly as possible and help me get back to normal functioning sooner.

Oh well, not much other news here today.  Any responses would be greatly appreciated, especially tips for dealing with pain and any info regarding inability to contol lower leg (is this normal or something to worry about 4 1/2 weeks post-op? what should I do about it?).  I hope everyone is have a good day and a good start to the week.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: doublea21 on February 19, 2007, 06:49:52 PM
Heather,

I had a lot of pain post op and my PT gave me a TENS machine for 4 weeks to cut down on the pain in order to get my muscles to start to work again.  I can't comment really on the wheter the lack of control of your leg is normal because I had a different PT protocol from you.  I was partial weight bearing from the beginning and started to work on strenghtneing and getting my quad muscle to work again from the beginning.  I could do a straight leg raise at 2 weeks post op.  I wouldn't worry about it too much until you reaally start to work on active ROM and strengthening because that is how you will get it firing again.  I would chenk with your PT and see where you are expected to be at this point.  I wasn't allowed to drive for 10 weeks but definately understand the freedom that it brings.  It took so long to be cleared because it was my right leg and I needed to have enough ROM and muscle control to be able to drive (my OS wanted 90 degrees easily and that took me about 9 weeks to get to so you being at almost 100 at 4 1/2 weeks is much better than mine was.

Good luck and keep working. 
Amy
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 19, 2007, 07:12:09 PM
Amy,

Thank you for your advice and words of encouragement!  I will check with my PT about the lack of muscle control.  I think I have a very good PT and he is nice to work with (even tries to joke around while torturing me).  :P  I just feel like there may be some confusion regarding what kind of progress I should be making.  My PT has asked me where the OS thinks I should be regarding ROM.  However, I didn't get a clear understanding from OS about how much ROM (actual numbers) I should be achieving in a specific time frame.  It's kind of strange being the first person in the area to have MPFL reconstruction surgery done because PT has not worked with someone following this surgery and people don't really seem to know what to expect regarding rehab and time frames (except for OS who has done the surgery before moving to this area).  I had to make sure that my first script for PT from OS following surgery was very detailed, explaining exactly what OS wanted PT to do and not do.  I have a TENS unit to use at PT and at home and I use this vibrating wand/massager type thing on my knee at PT while PT is bending my knee.  These do help with the pain, but I wasn't sure if there was anything else I could do to deal with the pain when PT is really pushing to bend my knee (because even with the TENS and massager, the pain becomes unbearable at those times).  At this point, I'm just trying to grin and bear it, but I still end up on the verge of tears at some point during each PT session (except today because PT took it easy on me). 

Anyways . . . thanks for your help!  I really appreciate it!  I will check on this stuff with my PT this week.  I wish you well and a complete recovery.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 21, 2007, 09:50:32 PM
Had a mishap after PT yesterday.  When I was leaving PT, I slipped trying to get in the car.  :'( It's been a bit of a trick trying to get in the car, but what I've been doing is sitting on the seat sideways, putting my right leg (good leg) in car and then using that leg to push myself up so that I don't have to bend the left leg (op-leg) as much to get it in the car.  However, yesterday my right foot slipped as I was doing this and I slipped down (so that I was sitting on the seat again) but my left leg was still out of the car so some of my weight came down on op-leg (I'm still supposed to be NWB), my op-knee bent quickly and at a bit of an odd angle (my lower leg below knee was pushed laterally a bit in comparison to the rest of my leg).  :'( I don't remember hitting my knee on anything though.  It hurt quite a bit for a few minutes, but then the pain decreased so I thought I had possibly been very lucky and not really done anything to it.  :-\ However, about 30 minutes later, I got a sharp pain in a very specific spot under kneecap (it feels like someone is trying to hammer a very small nail from the underside of my kneecap outward through the kneecap to the topside of the knee cap).  :'( I haven't figured out anything to lessen the pain or make it go away, but the pain goes away on it's own and then comes back.  The pain can last for as short as 5-10 minutes, but on a few occasions has lasted over 50 minutes.  Since it happened, I don't think I have gone more than an hour without the pain coming back  :-\ :'((didn't sleep very well last night either - partly because of this pain).  After the slip I noticed that my knee was somewhat more swollen and felt hot.  I've been trying not to worry about the pain and hoping it would go away.

However, the pain continues to come and go again today (the pain can come on when I'm doing an activity like some of my home stretches, etc, but it also starts sometimes when I'm sitting down not moving my knee).  I had PT today and got to 100-degrees ROM (painful with PT pushing knee to bend it).  I spoke with PT about incident and sharp pain.  PT said that I may have broken up some scar tissue or something when I slipped, so that it could be a blessing in disguise.  :-\ PT used ice and e-stim (near the sharp pain area) at the end of the session today.  This helped some, but knee still stiff and that specific area still painful.  PT told me that even if I'm feeling rather sore tomorrow I should come in for my PT appointment and he will take things easier on me.  The sharp pain has come back rather strong multiple times since leaving PT (in car on way home and at home).  :'( I'm hoping that I didn't do any damage when my foot slipped getting in the car.  I'm hoping that all I did was break up some scar tissue.  But I wonder about it because I would think that if I broke up scar tissue that the sharp pain shouldn't be coming back now (because once the scar tissue is broken up why would there be such a sharp specific pain?  The scar tissue wouldn't be attached there anymore, so pain shouldn't be in that specific spot either?) or should at least be decreasing.  ??? Anyways . . . I'm no Dr. or PT or medical specialist, so I don't really know.  I'm scared and worried about what could be going on with my knee, but I'm just going to try to deal with the pain and talk to my PT again tomorrow if it continues. 

Anyways . . . I hope everyone else is having a better day than I am.  If anyone has any ideas on what I may have done to my knee or advice for what I can do about the pain, please let me know.  Thanks in advance for any help or advice.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 22, 2007, 07:27:54 PM
Sharp pain continues today.  Didn't get much sleep last night because my knee pain woke me up every 1 - 1 1/2 hours.  My knee was painful, swollen, and hot this morning.  I iced my knee prior to PT in the hopes that the swelling would go down so I could do more at PT.  Only got 96-degrees ROM today at PT, but my PT also said he was taking it easy on me and that he thinks we'll get 102-degrees in PT tomorrow.   ::) :-\  I've been trying to bend my knee since I got home from PT, but it feels even stiffer than it did yesterday and the day before.  I'm getting more concerned each day about what I may have done to my knee to cause this sharp pain in a very specific spot.  Throughout the day/evening, I don't go more than an hour without having the pain hit.  Nothing I do seems to help it either.  I'm also having some difficulties with straightening my leg (takes some work and stretching to make it straighten out sometimes) and I haven't had any problems with extension after surgery until now.  This whole situation (pain, worry, frustration, etc) has me crying :'((although I try my hardest not to let anyone see me crying).  I feel like such a baby when I cry about things, but this situation has me stretched to the ends (and beyond) of my coping skills.  I want my life back!  It doesn't help matters that I don't really have anyone around to talk to (family and friends) who understands what I'm going through.  I love my family and friends, but they really don't understand this.  They try to minimize what's going on for me (which makes me feel even worse).  I just wish someone would validate how I'm feeling (tell me that they understand it's a tough/scary/frustrating situation and that it's okay for me to feel the way I do and it's okay if I need to cry about it sometimes).

I apologize for the negative feelings and the long posting.  Hopefully, I can somehow be in a better state of mind and mood when I post next time.  I hope that everyone else is having a good day/week.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on February 28, 2007, 07:02:55 PM
Well, specific sharp pain continued so last Friday PT told me to call my OS about it to make sure nothing serious had happened to knee when I slipped.  Got 101 and 1/2-degrees ROM on Friday (PT said that 1/2-degree was very important because he had worked very hard to get it  ::):P).  Called OS office Friday and received return call that OS wanted to see me in office that day.  Saw OS, who said that he didn't think I had done any damage to my knee when I slipped and that he thinks that sharp pain is from the cartilage damage he found when he did the surgery and that there isn't really anything that can be done about the cartilage damage at this point.  OS prescribed Naprosyn for me to take instead of ibuprofen (I'm not sure why the change, but I'll do what OS says).  OS tried to bend my knee, but did not get 90-degrees (however, he said he would take my word for it that we got 101-degrees ROM at PT earlier in the day).  Even with 101-degrees, OS is very not happy with my ROM at this point.  He told me he wants to see me again in 2 weeks and that if my ROM isn't significantly improved he is going to discuss with me the need to do a manipulation in the OR.  OS also told me that he wants one of my parents to be bending my knee for me each day.  I'm still not sure exactly what degree of ROM I would have to get for OS to consider it to be a significant enough improvement to avoid an MUA.  After the appointment, I called my PT and told him the outcome of the appointment and that we needed to kick it up a few notches in PT to avoid the MUA.  My PT told me to rest up over the weekend, because I was not going to be happy with how hard he was going to work me on Monday because we definitely do not want MUA.

I still get the sharp pain behind my kneecap daily (don't go more than an hour or so through the day without the pain coming back no matter what I do or don't do) and knee pain wakes me up throughout the night (don't get more than 2 hours sleep at most before pain wakes me up and then I try to fall back asleep only to have knee pain wake me up again and again and again. :-\:'()  Trying to deal with this, but am really tired and frustrated by it.  My mom has been bending my knee for me (dad won't do it because he does not like to do anything that would cause pain for me) and I have been working extra hard with my home stretches.  PT this week has been extra painful, but I guess that's the name of the game if I want to avoid MUA.  While my PT is really bending my leg hard, I can feel something tearing above my knee cap (where that quad connects to the knee cap, I think?).  Hoping it's scar tissue breaking up.  That same area is painful and swells up after I leave PT.  I think I've been using ice more the last few days than I did right after my surgery was done ::):P.  Even right after icing my knee, there is still a "hot spot" a lot of times across the top of my knee and sometimes at other points on my knee.  The area across the top of my knee cap is even swollen first thing in the morning when I wake up, so I end up icing my knee before going to PT in the morning.  I talked to my PT about this pain and swelling, so yesterday my PT used utltrasound on my knee.  That helped some.  On Monday, my knee swelled up within an hour of leaving PT.  Yesterday, my knee didn't swell up until just before lunchtime (about 2 to 2 1/2 hours after leaving PT).  Monday and yesterday, my ROM was 107-degrees after lots of stretching in PT.  Today (with more pain and "tearing sensation") my ROM was 110-degrees at PT.  Hopefully, things will continue to move in the right direction quickly enough to avoid MUA.  I've heard/read about some of the complications with MUA.  :-\  I've also talked to my PT about his feelings about MUAs.  PT says that he does not like them.  He says that they do work sometimes for some people, but that there is also the risk of fractures and such with them.  Therefore, we are going to do all we can to get ROM significantly improved by March 9th so OS won't feel need to do MUA.

Has anyone else had experience with MUA? with MUA after MPFL reconstruction?  If so (in either case), what has been your experience? I've read some of the posts on here about MUAs in the arthrofibrosis section.  However, I haven't been told that I have excess scar tissue or anything like that (arthrofibrosis) so I'm not sure what kind of difference/effect that may make with the outcome of an MUA and possible complications.  I would like to get an idea of what to expect (and what questions to ask OS) if OS suggests doing MUA when I see him on March 9th.  At this point, in the meantime, I'm just trying to work as hard as I can (and put up with as much torture during PT  :-\ :P as I can) so that my OS will be satisfied enough with my ROM to not think about doing MUA when I see him next Friday.

Sorry for the long post.  I guess I just get on a roll with trying to get things off my chest and straighten out my thoughts on what is going on.  Thank you for taking the time to read this.  I hope that everyone is having a good week.  If anyone would like to chat, please feel free to post and PM me.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 02, 2007, 11:13:04 PM
hi heather you replied to my post a few times! (im the stunt woman who falls down the stairs!) ive just read your diary and sounds as though you have had a really rough time  :'( although im not familiar with what you have had done i can really relate to how you feel,hope you soon feel better,love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 02, 2007, 11:34:10 PM
Claire,

Thank you so much for the words of encourargement!  I really appreciate it!  I'm having a tough/down day today and your post has helped to cheer me up a bit.  :)  Thank you. 

I've been feeling down and frustrated with my knee and the slow re-hab (and sometimes regression).  I was only able to get 101-degrees ROM today at PT (with my PT painfully pushing my knee to bend it) after getting 111-degrees ROM yesterday.  I told PT that the 101-degrees ROM today was more painful than the 111-degrees ROM was yesterday.  PT told me that it's okay for me to have a bad day and that some of today's difficulties are likely due to a cold-front moving through our area today.  I'm hoping that my PT is right.  This regression in ROM is very frustrating because I have been working very hard this week and feel like today I'm back to where I started a week ago (was 101 1/2-degrees ROM last Friday when I saw OS and he was unhappy with it and told me I have to make "significant improvement" in ROM by time I see him on March 9th or else we will be discussing OS needing to take me back to OR to do an MUA).  I am concerned about MUA and possible risks I have heard about that are associated with MUA.  My PT and I are working very hard, trying to avoid OS telling me I need to have MUA done; but today just feels like a setback and makes me feel much less hopeful that I can make "significant improvement" enough for OS to feel MUA isn't needed. 

Anyways . . . I'm trying not to worry about it and am working hard at PT and home exercises.  I think I'm going to go listen to an inspiring song that I've found recently that encourages me to keep working and not give up no matter what the obstacle. :)  I hope everyone is having a good knee day.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 03, 2007, 12:07:07 AM
hi heather!! ive had an "off week!!" i was feeling down last week with "womens things" and felt i was doing abit crap with the recovery and then i go and fall down the stairs!! i only had a 30 degree rom before the fall and now am back to about 10 if that!! .......that'll teach me for moaning!!
what actually is mua???
which song is it you like??
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: doublea21 on March 03, 2007, 01:30:25 AM
Sorry to hear about the pain that you are having.  I am having some trouble with both of my knees with all of the weather changes that we have been having here recently.  I would read all that you can on the MUA before going into.  It scared me a lot to think about it (for me it was my PT that would suggest that I may need one to get my knee to progress).  My OS was never very concerned with my ROM despite having about 65 at my 6 week check up and 120 at my 3 month check up.  My OS is mentioned occasionally in the arthrofibrosis posts so I was confident that he would know the warning signs if I was getting too much scar tissue in my knee.  It may have taken me 6 months but I did regain full ROM (156) although I can't functionally use all of it (the last 15 degrees is still very tight and somewhat painful but I am ok with 145.  It would have been a very difficult decision for me if a MUA was ever suggested by my OS because after what I have read I am not sure I could have gone through with it, but you do have to remember that it is mostly the people that have the bad outcomes that post their experience with it. 

I hope that your down day was due to the weather and that your knee will behave so that you won't have to be faced with a decision about the MUA. 

Shortyclairebear - I read about your story but didn't know what to say.  Hope that you are slowly recovering and that you didn't do anything serious.  Good luck when you see your OS.  I remember now that it was after the LR and VMO advancement that I fell on the ice.  I luckily didn't do anything although my surgical leg was the one that slipped out in front.  I hope that you have the same outcome from your fall and that it is just a minor setback in your recovery.

Amy
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 03, 2007, 09:44:39 AM
hi heather hope your felling a bit better today!?
im trying to have a day where i don't talk about knees!!
i seem to have become like a broken record!! LOL!!
(theres nothing i can do til tuesday so i'll have to get on with it!!)
have you anything planned this weekend?

hi amy! thanks for the message,im hoping so much i havent done anything to it with the fall,when you had your vmo and lr did you have other procedures aswell??
just wondered how long it was til you started to get back to "normality!"
my os seems to take a very laid back approach to recovery as i havent even started physio yet and feel as though it will take me ages to get my ROM back,i don't even want to think about when i will drive!

take care everyone and keep me posted on how you're feeling too!!

claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 03, 2007, 10:07:26 PM
Amy and Claire - Thanks for the care and messages.  Mood wise I'm feeling a bit better today, but my knee is not feeling any better.  Still painful and VERY stiff, swollen, etc.  However, I'm trying not to worry about it and am just working hard with home stretches this weekend and hoping that I will have better ROM at PT Monday morning. 

Claire - I hope your knee is feeling a bit better.  I continue to keep you in my thoughts and prayers, hoping that your fall didn't do any damage.  To answer your questions:  "MUA" is a manipulation under anesthesia (the OS would take me back to the OR and bend my knee - possibly forcefully - while I was under anesthesia).  Trying to avoid MUA, especially after all of the risks that I've heard can be associated with it (from posts on here and my PT).  The song that I really like right now is called "Mountains" by Lonestar.  The song basically talks about getting knocked down/falling down in life, but that you need to get back up, that walking is easy when the road is flat, and that "the good Lord gave us mountains so we could learn how to climb".  If you haven't heard of the song and want more info just let me know (right now you can listen to the song for free on the group's MySpace site).  I've been finding it to be really inspiring and encourages me to keep working hard with this whole knee thing.  No big plans for this weekend, but I got to spend some time this morning with my 11-month old nephew (he always makes me smile and laugh).  He started walking at about 9 1/2 months and walks way better than I do right now ;) :P.  My nephew has decided that he really likes to play with my crutches.  When I'm holding the top of the crutches (so they don't fall on his head), he grabs hold of them about a third of the way up and tries to walk while holding on to them. :)

Amy - I hope that your knees are feeling a bit better today.  I definitely do not think I like this whole "weather prediction" thing that goes along with having knee problems ::) :P.  Thanks for the encouragement and for sharing about your experience with rehab following this surgery (and having PT recommend MUA).  I've read a number of posts on here from people who have had an MUA, but the majority of them are in the arthrofibrosis section and my OS and PT have never mentioned anything to me about me having arthrofibrosis or excessive scar tissue.  So I'm not sure what kind of difference that would make regarding outcome of an MUA.  However, I still do not want to be faced with OS recommending MUA after all of the risks I have heard are associated with it.  Also, I trust my PT a lot and, when I asked my PT about his thoughts on MUA, PT told me that overall he is not a fan of them and that we will do everything we can to avoid me having to go through an MUA.  I'm glad that my PT is willing to work with me to try very hard to avoid MUA.  Right now, my knee still does not seem to be cooperating (lost 10-degrees ROM yesterday and knee continues to be problematic - painful, swollen, stiff, muscles contract very tightly within minutes of finishing stretching exercises, etc), so I'm becoming less and less hopeful about having enough ROM next Friday when I see OS so that OS won't feel need to recommend MUA.  However, I'm working hard with home stretches and will work hard everyday next week in PT, so that's all I can do at the moment.  Worrying about possibility of OS recommending MUA won't do me any good at this point.  So I will continue to work hard and, in the meantime, I am putting together a list of questions for OS in case he does recommend MUA (ie, how much force would he use?  what are risks and benefits associated with me having MUA? what kind of results has he gotten from using MUA in cases like mine before? etc.).

I hope everyone has a good weekend and good knee days.  Take care and keep me posted on how you are doing.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 03, 2007, 11:23:26 PM
Hey Heather....Sorry you have had a rough couple of days. Just wanted you to know Im thinking about you. Im on now, if you wanna chat....

DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 03, 2007, 11:34:36 PM
HI HEATHER!! sorry to hear your'e not feeling too good,the MUA does not sound too good either............i relly hope you don't have to have that done.
i'll have to listen to the song you mentioned..............i like their song called "amazed".......(its one of mine and my boyfriends songs!!) i'll see if its on youtube!!
your nephew sounds cute!! kids and animals really seem to know how to cheer us up don't they without even trying!!
my boyfriends two nephews make me laugh! they are 8 and 9 and asked the other day if thy could see my "big knee" (ITS EVEN BIGGER NOW THEY WOULD BE IMPRESSED!!)
they asked if the brace was superglued on and couldn't understand how it stayed up!!
keep us posted how you are getting on!!
thinking of you!!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 04, 2007, 06:04:38 PM
Donna and Claire - Thank you for the words of encouragement!  I really appreciate it!  At this point today, my knee is still very stiff, swollen, and painful.  It's also rather cold and very windy here right now, so I'm hoping that my knee difficulties may still just be from the weather front going through.  Who knows?  So for now, I'm just working hard, trying not to worry about it, and am hoping and praying for the best.  Hopefully, things will improve some and I will be able to gain back some ROM in PT tomorrow morning.

Donna - I would have loved to get the chance to chat with you, but I had already gotten off the computer before your message came through last night.  Hopefully, we can catch up with each other some time soon.  Please know that you are in my thoughts and prayers.  Let me know how you are doing.

Claire - Let me know what you think of the song.  Kids can most definitely cheer us up!  It's one of those gifts that kids have just from natural curiosity and saying/doing anything that comes to their minds.  Please let me know how things are going for you and know I'm thinking about you.

Take care everyone.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 04, 2007, 06:21:52 PM
hello heather!
im sorry you are having a bad day with your knee today,i definatley think the weather plays a big part in it,when its cold my tends to change colour and throb!
the weather here today is terrible-torrential rain.i hope pt goes well tommorrow i'll drop in tommorrow to read how you got on!
ive listened to the lonestar song........ its lovely!!............... make me feel quite tingling!! ........its definatley very fitting to how i imagine alot of us feel!!
..........very inspiring too!! i think i'll save that to my favourites on "youtube!"
ive had an ok sort of day...................am in alot of discomfort today but my mum and dad cheered me up................boyfriends getting stressed though.i don't think men can handle us being laid up!
take care,
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 04, 2007, 08:21:48 PM
Claire -

I'm glad that you like the song!  :) I'm listening to it right now.  I'm sorry to hear that you're in a lot of discomfort today :(.  However, I'm glad to hear your parents were able to cheer you up.  About the boyfriend being stressed . . . I definitely think that men have an especially hard time when someone they care about is in pain and there is nothing they can do about it.  I think it's hard for men and women, but extra hard for men because most men I know want to fix everything, hate to feel helpless, and get very frustrated when they can't make things all better.

I'll keep you posted on how things go for me tomorrow.  Please let me know how you are doing.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 04, 2007, 09:26:29 PM
hi heather thankyou for saying that!! i guess i never saw it that way and was feeling worried that when he's stressed its cos im making him feel stressed!!
i'll check tommorrow on how your appt goes.
take care,i'll be thinking of you!!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 05, 2007, 07:47:25 PM
Got 112-degrees ROM at PT today (had 111-degrees last Thursday and 101-degrees last Friday when a cold front moved through), so it was a bit of improvement from my previous best day of ROM (last Thursday).  PT was painful and we tried some new stuff today (heat and a "torture chair contraption" - called a BioDex machine - that moves my leg for me :-\).  Had a longer PT session today also (2 hours).  My PT and I are trying very hard to get as much ROM back as possible before I see my OS so OS won't feel need to recommend MUA.  Since it seems like everything in and around my knee is contracted and tight, my PT told me to use heat instead of ice for the next day or so and see if that helps my knee loosen up some.  One spot on the lateral side of my knee feels a bit better right now. :)  However, the rest of my knee is hurting more and is stiff and swollen. :(  It doesn't help that we have another cold front moving through our area this afternoon and evening.  I'm hoping that using heat on my knee will help things (even though knee still swells, PT suggested to try the heat and that maybe the increased blood circulation will help the swelling to go down also).  I guess I'll just have to give it some time and see what happens.

I got a call from my OS office today telling me they need to reschedule the appointment I had with my OS for this Friday (OS had family emergency and will be out of the office all week).  So, I am scheduled to see my OS next Wednesday (March 14). :-\  Good thing is that this means I will have 5 more days to work on improving ROM  :) so that my OS will hopefully be satisfied enough with the progress that he won't recommend doing an MUA.  However, it also means that I have 5 more days to worry about what's going to happen at the appointment and whether or not OS will think I'm making satisfactory progress. ::)  I think I had myself prepared for finding out on Friday if I'm making okay progress or if the OS thought there needed to be a change in the course of action for my knee (although the thought of an MUA still scares me :( :-\ ???), but now that it's going to be longer till I find out I can already feel myself starting to worry more.  I hate feeling like I'm in limbo, not knowing what's going to happen, not knowing if I'm making enough progress with what I'm doing now or if something else needs to be done.  :-\ :(  Oh well . . . nothing I can do about it, so I'm going to try not to worry about it and focus on the fact that it gives me 5 more days to show even more progress than I would have been able to do on Friday.

I hope everyone is doing well.  Please keep me posted on how things go for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 05, 2007, 07:57:24 PM
hi heather!! it sounds as though you are doing well at physio to me!! does the physio feel you aren't doing well enough??
i do know how you feel about being stuck in limbo..........my wait is over tommorrow i see the os for my 6 week check and hopefully will find out if i did any further damage in my fall.it does feel slightly better today but i don't know if ive willed it to so i can still get the brace off! im hoping he doesn't tell me to keep it on longer as the brace had to be altered again after he fall.it will seem pretty weird i guess having it taken off ater 6 weeks,but i still hope i can ditch it!!
im sorry the appt had to be rescheduled,i hope you manage to improve your rom in the 5 days you have but don't overdo it and hurt yourself!!
take care,
claire
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 05, 2007, 08:34:40 PM
Claire - I'm glad to hear that you are feeling a bit better today.  Hopefully, your appointment goes well tomorrow and you didn't do any damage and can ditch the brace.  :)  It probably will feel rather strange when you get the brace taken off after having it on for 6 weeks.  I remember how strange it felt for me when I didn't have to wear my immobilizer anymore (it was about 4 weeks after surgery), but still had to be NWB on the crutches.  It felt so weird to have some "swing" in the knee when I walked on the crutches.  After about a week, I finally got used to it.  To answer your question about PT . . . my PT doesn't really know how quickly I should be progressing since my PT has never worked with anyone following the surgery that I had done (in fact, none of the PT's in this area have worked with someone following this type of surgery).  My OS has done the surgery before moving to my town, but as far as anyone around here can figure, I'm the first person to have the surgery done here.  Sometimes I feel like I'm a bit of a guinea pig with people trying to figure out what to expect following MPFL reconstruction surgery.  :-\  Anyways . . . my PT seemed to feel okay with things as long as I was making progress.  My OS is the one who feels that I'm not doing well enough.  Since I told my PT that OS was not happy with my progress and said I had 2 weeks to make significant improvements or we would be discussing an MUA, my PT and I have tried to kick things up a notch so that I can hopefully avoid the MUA.  I really like the PT that I have and am thankful that he is willing to try everything he can think of to help me make enough improvement so that my OS will be satisfied with the progress at my next OS appointment!

Good luck with your appointment tomorrow.  :) Please keep me posted on how things go.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 06, 2007, 11:18:58 PM
hi heather!! how are you today!?
i really do hope that you can avoid the MUA,and get the full rom back soon,it must be awful feeling as though you are a human guinea pig,(it was bad enough when i saw these other 2 specialists about my knee and they never knew what a vmo advancement was!)  >:(
do you feel that they are taking care of you better as the procedure is rare or just that they are bit in the dark?  ???
.............its great that you have a good physio! (i really hope i get a good one! i will look for a private one if i need to and pay for it as my last n.h.s one was dreadful!!)
i'll keep checking in on you to see how your'e doing!!
+ i'll look for some more inspiring songs for you aswell!!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 07, 2007, 10:12:01 PM
Claire -

Thanks for the message.  How are you doing today?  Getting used to not wearing the brace?

I got 118 1/2-degrees ROM today at PT!!!  It hurt really bad and I felt something in my knee snap (PT says that's probably a good thing because it's likely that it's scar tissue breaking up), but it bent!!  That is the best ROM I have had since surgery!  :)  After that, PT did some more stretching and we tried for 120-degrees.  However, my knee had already started to stiffen up some and so we only got 115-degrees that time.  PT said our goal for tomorrow is 120-degrees ROM and then we will try to keep getting at least 120-degrees each day until I see my OS (in the hopes that it will be easier for me to get 120-degrees the day of my OS appointment . . . I don't think OS would be happy if I was in so much pain trying to get 120-degrees in his office that I was on the verge of tears).  I'm feeling a bit more hopeful about possibly avoiding the MUA at this point.  In the back of my mind, I still have thoughts lingering about how my ROM can significantly decrease from one day to the next (and worry that it may be a bad day when I see OS next week) and worry because I do not know exactly what kind of number (ROM) my OS is expecting me to have when I see him.  However, I am trying not to let those thoughts bug me and am instead just focusing on the fact that my knee bent further today than it has so far in this whole rehab process!  Now just have to work hard to keep it there and keep progressing.  I do feel like I'm a human guinea pig sometimes.  In fact one of the other PT's at the place where I go for PT asked me today what surgery I had done (he said he was curious as to what kind of surgery would cause me to have so much difficulty getting back my ROM).  When I told him about it, he had not heard of the procedure before and made a statement about me being the guinea pig for the procedure in our area.  Although it is frustrating sometimes because people don't know about the MPFL reconstruction and what to expect with it (pain, rehab protocol, etc), I do feel like I am being taken care of.  When I was in the hospital after the surgery, the staff made a number of phone calls to my OS with questions rather than just let things go and hope for the best.  My OS provided detailed instructions to my PT regarding rehab (ie, NO strengthening until achieve full range of motion, etc).  HOwever, my OS did not explain the rate at which he feels progress needed to be made with regards to range of motion. :-\ Although my PT is not sure at what rate I should be progressing following this surgery (and so I feel like we are kind of developing our own protocol for this rehab); my PT has been excellent with working really hard with me, listening to me regarding how I'm doing and my concerns, and trying to figure out different ways to help me achieve ROM and lessen pain!  I really feel like my PT and I are working as a team in my rehab!  :)

The surgery you had done (VMO advancement) was one that my OS told me the morning of surgery that he might do to mine when he was in OR.  OS couldn't really examine my knee very well when he saw me in prep room prior to surgery because it hurt too much when he tried to move my knee cap around.  So, the OS had told me that he would examine my knee while I was under anesthesia and that if it was only moderately unstable he would advance the muscle and do LR, but that if my knee cap went out of place really easily then he would do the MPFL reconstruction and LR.  My OS did a nice job of explaining the procedures, but I was very thankful that I had found the KneeGeeks :) and had already learned a bit about all of the procedures.  I don't know if anyone around here would have been familiar with what to expect following a VMO advancement or not.  My OS is fairly new to this area and apparently is the kneecap specialist in the orthopedic office and is trained in more recent procedures.  It's really nice to have an OS here who is knowledgeable about the more specialized procedures for knee problems, but it's also frustrating that other people do not know what to expect with rehab protocol and acceptable rate of progress.  Oh well . . . we're doing the best we can and I have a great PT in my corner. :)

Anyways . . . I should get going.  I hope that things are going well for you.  Good luck with finding a good PT and hopefully it won't cost you an arm and a leg (although it is worth the cost to have a good PT working with you on rehabbing precious knees :)).  I consider myself to be very lucky to have the PT that I do and to have insurance that covers unlimited PT sessions (most insurance companies where I'm from have a 20 or 24 session limit for the year).  Take care. and let me know how you are doing.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: Stacye on March 07, 2007, 10:29:44 PM
Hi That mpfl surgery is what they are saying they think I need now on both knees.  I have numerous dislocations and sublaxtions. They doctors comment that its hard for them to examine my knee because when they move it around I get so anxoius so the told me I should take anxiety pills before next specialist. 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 07, 2007, 11:02:31 PM
Stacye -

I am not a fan of having people play with my kneecaps either. ::)  I get anxious about it, but didn't take any anti-anxiety pills for it.  I had an MRI that showed a tear in my medial patellofemoral ligament and I had approximately 3 dislocations each week and subluxations on a daily basis after the injury (I had some problems with it before the injury as well), so my OS told me he thought I needed MPFL reconstruction. 

The morning of my surgery, OS tried to examine my knee in the prep room prior to surgery.  However, it was so painful when he tried to move my knee and kneecap around that he could not properly examine it.  So, OS said he would examine my knee more fully when I was in OR under anesthesia.  OS told me that if my kneecap was only moderately unstable he would advance the muscle to pull it tighter (VMO advancement) and do LR, but that it knee cap really easily dislocated he would do MPFL reconstruction and LR.  Needless to say (from the title of my post), my kneecap dislocated really easily and so he did the MPFL reconstruction and LR.  OS also found a lot more damage (cartilage stuff) in the knee than what he had expected.  Apparently, each time my knee cap dislocated, it tore cartilage in my trochlear groove (OS showed me pictures after surgery and it looked like the cartilage had gone through a shredder :'( :P).  I still have pain and the rehab is tough, but my OS has been able to show me how stable my knee cap is now.  OS has tried at my last 2 appointments to dislocate my kneecap (put a lot of pressure on it), but the knee cap does not dislocate (in comparison, my OS likes to show me how loose my "good" kneecap is).  I have to say . . . it is nice to see how stable the knee cap is since surgery, but I am still not a fan of having someone (even my OS) play with my knee cap.  I think it's going to take a long time for the apprehension/anxiety to go away.  If the anxiety pills do not work well enough for your doctor to properly examine your knee, I wonder if it would be possible for them to take you to hospital and examine your knee while you were sedated or under anesthesia (without doing surgery at that time).  That way they could get a good examination and you would know better what they planned to do when they did try to fix your knee.  Just an idea. 

If you have any questions, please don't hesitate to ask.  Good luck with your next appointment and please let me know how things go for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 07, 2007, 11:03:42 PM
hi heather!! ........it sounds as though you are doing great!!  ;D
i never got to ditch the brace yet! the os feels i should still wear it for now and then start to not wear it for a few hours round the house til i get abit more rom.
did i mention it seems as though he forgot to refer me for physio?
well he did refer me yesterday and they called me today and i have my first appointment tommorrow,(quite impressive for the n.h.s!)
im looking forward to it in one way as i feel its the start of me getting my leg back! but am dreading it as i know its going to be so painful.
i only have about 10 degrees bend at the moment  :'(
can't wait til im doing as well as you!!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 08, 2007, 01:10:44 AM
Claire -

Good luck tomorrow!  I can remember when I had very little ROM and how worried, scared, and frustrated I was.  It's been 41 days since I started PT . . . I've had 23 PT sessions since that time to get to where I am now (I'm very thankful for my insurance and unlimited PT sessions :)).  When PT is painful and progress seems slow, I find that I just have to keep reminding myself of why I had the surgery in the first place (to prevent knee from dislocating, to get back to work, to get my life back, etc.).  Just try to keep in mind why you are putting yourself through all of this (ie, what goals do you have? etc.).  If there is anything I can do, just let me know.  If you ever just want to chat, send me a personal message.  I'm keeping you in my thoughts and prayers.  Please let me know how things go tomorrow.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: doublea21 on March 08, 2007, 04:21:11 AM
Heather -

Glad that you at least got back and past where you were before the latest cold front.  Keep working...but it sounds like you have a good PT that knows the amount that they can push you to get the most out of you without going to far.

Claire -

I only had the LR and VMO advancement in that procedure, but I had it done bilaterally (both knees at once).  Sounds like our OS have different rehab protocols because I started PT at 10 days post op and was back to training for competitive swimming at 3 months.  I was partial weight bearing from the start since NWB would have been out of the question with both knees unless I was in a wheelchair.  Good luck with PT.

Stayce -

when you have had dislocations I don't think that you can ever be comfortable letting the doctors play with your kneecaps.  I refuse to let anyone besides my OS go near them, especially the residents.  The MPFL is a big operation, but it has saved one of my knees....it is now tracking as close to correctly as possible (I have an extremely shallow groove under the kneecap) and has not subluxed or dislocated in 8 months which is a record for me *knock on wood*. I am considering having it done on the other knee as well but not sure I can put myself through the rehab again just yet since that knee behaves most of the time.

Amy
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 08, 2007, 03:34:30 PM
hi heather!! hope your'e ok today!!
thanks for the cyber hug!! sending you one too!! ((HUG!!))
My physio went well today!
did not do too much but feel ive made a pretty good start!
i got there on my own (in a taxi) and went without the brace! took the crutches but more for security really!
thanks so much for the lovelly words and support! theyr'e much appreachiated!
take care,
claire x  :)


doublea21,it must have been awful having both knees done at once!! i think ive had a delay in physio as my os forgot to refer me!
he asked me on tuesday when i saw him how often id been and when i told him i hadn't he said i'll refer you as an emergncy appointment,it has only took 2 days to come through but i cannot see how i would get an appointment through unless he reffered me?!
it sounds as though you're doing great with the recovery!!
take care,
claire
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 08, 2007, 04:23:44 PM
Amy - Thanks for the encouragement!  :) I have a great PT and feel very blessed to be able to work with him!  :) He definitely seems to know how much to push me without going too far and causing more damage.  Didn't get quite as far today (116-degrees ROM) as we did yesterday (118 1/2-degrees ROM) :(, but still doing better than I had been :).  Just hoping to make enough progress with ROM by next Wednesday when I see OS so that OS will be satisfied enough to not recommend MUA.  I figure I'm working hard and that's the best I can do, so the rest of it is out of my hands.  How are you doing?  I hope things are going well for you.

Claire - Thank you for the cyber hug!  :) Congratulations on getting to PT on your own and going without the brace!!!  :D  I bet it feels great to have some more freedom!  I'm glad to hear that your PT went well today and that you feel like you got a pretty good start!  How often will you be going to PT?  I'm really glad that I have been able to arrange to go daily (Monday - Friday) because I'd hate to see what my OS would think of my ROM if I didn't go to PT so often. :-\ ???  My PT went fairly well today.  Didn't get as much ROM as yesterday :(, but felt like it was a bit easier to get to the 90-100-degree range for ROM towards the middle/end of session today than it has been in previous weeks :).  As my PT has said . . . there are going to be some "valley days" where we don't get as far as we had been, but that's okay as long as the general direction is still progress.  I'm just trying to stay positive on this whole process and keep my eyes on the goal.  I think right now I'm going to take the car and go experience a little freedom for myself  ;D. . . go to the post office and to pick up something for lunch.  Please let me know how things are going for you.

I hope everyone is having a good knee day.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 08, 2007, 05:04:02 PM
hi heather!  ;D
im so glad you pt is nice mine seems nice too,im initially only going once a week,but he said it may be more frequent once i get moving abit more!!
you sound as though your'e doing really well and i hope your os agrees when he sees you! :)
pls keep me posted how your'e geting on!!
take care,
claire x
 ;D :) ;)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 09, 2007, 06:50:05 PM
Claire -

How are you doing today?  How are the home exercises going?

My day has been a roller coaster and it's only lunch time here! ::)  Good news . . . I got 120-degrees ROM at PT today!! :)  It hurt like crazy for my PT to bend it that far ( :'( I was crying in the middle of the PT center  :'().  I had also talked to my PT about my difficulties with walking (scared/don't feel safe to go without crutches or even only one crutch, knee gives out or "flings" backwards, etc.) so PT worked with me on walking, gave me some new exercises, and told me to not worry about trying to go down to one crutch over the weekend but to instead focus on using the muscles properly to walk.  It has now been over 3 hours since end of PT and the inside of my knee is still throbbing  :( :'(.  PT told me to ice it and to try to keep bending it so it won't stiffen up, so that's what I'm trying (still has gotten quite stiff already). :-\ 

Then . . . on my way home, I got a call from my OS office . . . my OS can't see me next Wednesday as scheduled  :( :-\(OS won't be in office).  Receptionist asked if I would be willing to see another OS in the office (it's the OS that I saw for my knee back in October/November who had asked my current OS to come in to consult on my case).  I like this other OS, but I don't know how much he knows about the surgery I had done (especially since my current OS is the knee cap specialist and I was the 1st one in this area to have the MPFL reconstruction done).  I told receptionist I would see this other OS if that was okay with my current OS and explained that my current OS was planning to discuss manipulation if I didn't have enough range of motion at that appointment.  Receptionist told me that they could reschedule my appointment to see my current OS, but that the earliest they could reschedule it would be for March 22.  Last time I saw my current OS, he said he needed to see me in 2 weeks because he was very concerned about how little ROM I had and how slow things were going with rehab.  If I were to wait until March 22, it would be 1 day short of being 4 weeks since I had seen him.  So, I told receptionist I would go ahead and see this other OS on March 14.  I am not upset with my current OS because I understand that these things (family emergencies and such) happen.  However, I am soooooooooooo frustrated   :(  >:(  :'( by this and am worried about what's going to happen  ???  ::)  ???.  I'm concerned that this other OS may not really be able to tell me much or know what to expect (ie, what would my current OS have thought to be "significant improvement" in order to avoid MUA?  what is considered to be "normal" (symptoms, rehab, etc) after this surgery? etc).  One reason though that I am going to go ahead and see this other OS is so that I can get another prescription for Percocet (I take one each day before I go to PT) since I took my last one before PT today and I know that my OS office would say that I should be seen by a doctor again before they would write another prescription for it.  Some other things that concern me about not being able to see my current OS next week: . . . I have disability paperwork that needs to be completed to extend my disability benefits (I have to be seen by a doctor and paperwork has to be completed based on most recent appointment) and I don't know how much info and accurate prognosis/expectations this other OS will be able to provide since he did not do my surgery  ???  ::)  :(. . . also, I was hoping to go back to work the 2nd week of April and don't know if not being able to see my current OS for a couple more weeks will affect that (I figure my current OS is the one who will know what to expect following this surgery, if he thinks my rehab has gotten back on track - - to his expectations, or if I need MUA or some other course of action)  ???  :-\  I HATE being in limbo and scared that things (rehab, pain, swelling, etc) may not be going as it should be!!!!!  :'(  >:(  :( ???  :-\ Right now I am sitting here   :'( crying :'( over this whole situation and do not know what to do.  I tried to talk to my mom about it, but that did no good.  She got upset with my OS (which didn't help as I'm not upset with OS . . . I like and respect my OS and understand these things happen) so I ended up feeling like I was defending my OS.  Also, my mom did not understand why all of this was bothering me and then just made comments about that I'd better be able to go back to work in April (which just emphasized how worried I am about that anyways).  I don't know . . . maybe I'm just going crazy with all of this and have no reason to be so upset. :'( :-\ :'(  All I know is that I am upset/frustrated/worried/scared with all of this and wish that I had someone around who understood what I was going through and didn't make comments that make me feel worse.

Anyways . . . I should probably get going because I have ranted on here about this long enough.  I hope you are having a much better day than I am.  Please let me know how you are doing.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 10, 2007, 11:59:38 AM
hi heather..heres another cyber hug for you <<(("BIG" HUG))>>it sounds as though you really need it and really wish i could be there for you right now.... :'(
its horrible to read how bad you feel and i can really relate to alot of how you are feeling and wish i could do more to help you feel better  :'(
i can totally understand your frustration/feelings about this situation and know what you mean that other people not seeming to understand.
i wish i could do something to help :'(
ive has numerous conversations with my mum about my knee and now i am feeling and often feel she does not understand or may be having an off day herself and gives me the impression to just get on with it,this upsets me as even though i know she cannot really help me physically i just sometimes need some mental encouragement and sympathy!
i think sometimes people dread talking to me as its all "knees,knees knees",it hard not to talk about it though when thats at the forefront of your life and you can not forget it as easy as they can! you have to live with this everyday and everything you do involves thinking about your knees!!
its awful that your os let you down,mine also has let me down a couple of times (mine went on holiday and cancelled my surgery a month beforehand and forgot to refer me for physio)
i can really understand your feelings that he will not be there for the next appointment and truly hope that the other one can sort of the meds and paperwork for you,so its something less to worry about.
As he does not really specialise in the op you have had, will he really be able to say whether you should have the MUA or not? 
are you still going to see your proper os at a later date? will he be making the more important decisions when he next sees you?...if so will this give you longer to get the ROM back before he decides on the MUA or not? i really do hope so!
its good you like the other os,do you feel you can voice your concerns to him when you see him??

i feel this has been such a trying time in my life and has made me appreachiate so much what i took for granted before my accident,i too get really bad "off days" and the emotions you go through are terrible,i think you feel down enough in yourself anyway and things like this happening only push you down further,even if physically people around me can not help with the pain/frustrations etc it really does go along way if at least they can try and understand how you feel and listen to you when you tell them,or even try and take your mind of it for a few hours.
my progress is coming on slowly but like you i also feel my leg could give way when im walking and locks and stiffens up after exercise,im trying to look at the progress im making and feel good about it but then the impatient side comes in and thinks i wish i was doing better!
i really miss driving and do not even want to hazard a guess when i'll be able to again,i hate relying on others to do things for me and the fact im stuck in all day and have to rely on people drives me insane!
im sorry in the delay in relpying to your post i actually got took out for a meal last night i was so tired when i got in i fell asleep on the sofa til 12pm!
if you want me to send you my e.mail address let me know nd i'll pm you it,as im off work at the moment im usually online.
take care heather,
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 11, 2007, 01:19:27 AM
Claire –

Thank you for the cyber hug and for the support!  :) I really appreciate it!!!  It is sooooo helpful to know that you can understand and relate to what I am going through (frustration over situation with not seeing my current OS, people around not understanding what I’m going through with my knee, etc.)!  Thank you so much for your help! :)

My knee is VERY stiff and painful today, but I’m not sure why.  :-\ :( I’m just hoping that it improves before I go to PT Monday morning (7:30am). :P  I’m still frustrated by the whole situation with seeing a different OS on Wednesday, but I am less “emotionally charged” than I was yesterday.  I think that ranting about it on here helped to release some of that emotional energy.  I am thankful that (since I can’t see my current OS), I am at least able to see the OS that originally treated my knee for a few weeks after the injury.  That OS did not hesitate to call in my current OS for a consult on the case when he realized that my knee was not healing properly and needed more specialized treatment.  I’m concerned because I’m not sure how much the OS I will be seeing on Wednesday can help me with knowing if I need an MUA or some other course of action (besides the current work I am doing in PT and at home), with knowing when I can begin doing some strengthening work in PT, with knowing when I may be able to return to work, etc.  However, I am hoping that this OS will be able to help me figure a few things out with my knee and to make sure that there is nothing major going wrong with it in the meantime.  Also, (as my father reminded me) worst-case scenario is that this OS will tell me that he does not know what to do for my knee and that I need to see my current OS and that he will make sure I can get in to see my current OS as soon as possible when current OS returns to the office.  I do feel like I know the OS well enough to know that he would do these things for me.  I am concerned about a lot of things and frustrated about not being able to see my current OS on Wednesday, but I figure that worrying about it will not change anything and does not good.  In the meantime, I am putting together a list of questions/concerns to discuss with the OS I will be seeing on Wednesday and will make sure to explain to the doctor that my current OS was adamant (when I saw him on Feb.23) about needing to see my in 2 weeks because he was not happy with ROM progress and wanted to discuss MUA if I had not made “significant improvement” in ROM (but did not define “significant improvement”).  I definitely feel comfortable enough with the OS I will be seeing Wednesday to discuss these concerns with him.  I think a big part of the reason that I feel so comfortable with the OS I will be seeing is because he does not act like he knows it all and can fix everything; he’ll admit when he doesn’t have the answers and will find someone who does have the answers you need.  I really appreciate that in a person (especially a doctor). :)

I can relate to your impatience with rehab.  I find myself looking around at other people at the PT center where I go for PT and noticing how quickly they are making progress after their various surgeries.  Then, I just have to remind myself that everyone progresses at different rates and that they did not have the same surgery that I have had done (my current OS has repeatedly reminded me that it is a VERY tough rehab after the surgery I had done).  I do get worried about not progressing as quickly as my OS thinks I should be, but then my PT reminds me that the important thing is that the general direction I am going is progress (even though it may be slow, I’m not standing still or going backwards).

How are you doing?  How was your night out?  I’m sure if must have felt good to get taken out to dinner.  :) I know that I have thoroughly enjoyed the times my mother has taken me out for dinner in the last few weeks.  I appreciate much more now being able to go out to dinner and out for anything moreso than I did prior to this situation with my knee.  I also find it strange how even seemingly simple things or short trips out make me soooo tired.  That’s another thing that my family has had a hard time understanding.  They don’t seem to realize how much energy it takes to do even little things and how little energy I seem to have right now.  I don’t know that I could make them understand it, so I don’t even try to explain it at this point.

Thank you for all of your help and support.  It is much appreciated!  I’ve been sooooooo thankful that I’ve found this website and the wonderful people on here.  It is so easy to feel alone in the situations with our knees and how knee stuff takes over our lives and no one around us understands.  It’s sad that so many of us are going through all of these troubles with our knees, but it so nice to be able to come here and talk with others who are going through similar situations and realize that we are not alone. 

I should probably get going.  Please let me know how things are going for you.  Also, thank you for the offer of sending me your email address.  I would really appreciate that.  I’ll pm my email address to you also.  Please know that I continue to keep you in my thoughts and prayers.  If there is anything else that I can do for you, please don’t hesitate to ask.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 11, 2007, 09:15:19 AM
hi heather it was good to hear from you again! i was wondering yesterday how you were getting on!  :D
i'll be thinking of you when you see the os on wednesday. :-\
i have sent you a pm with my email address,thanks for yours too!  ;)
how are you feeling today?
i've woken up this morning with my knee feeling pretty stiff too!  ???
its strange how one day you can feel pretty flexible and another you feel as though you are going backwards with your progress.
Taking the list of questions with you to your OS is a really good idea,thats what i have done for the last 2 visits,i think the first time he felt i was interogating him abit but i think he's used to me now!..............otherwise i leave his room remembering things i should have asked and worry i don't know the answer!  :-\
the siuation we're all in with our knees is horrible as you are trusting a valuble part of your body with a stranger hoping he can fix it and the visits you make to them afterwards are of great importance as its the next step to check how we are doing and to vent out concerns and mostly to have our minds put at rest that its worked and we are doing as we should be,so the fact that the OS has cancelled i can more then understand the concerns you have,especially as though the op you have had is so rare. :'(
the stand in OS you have the appointment on wednesday does sound very good though and he sounds as though he is not afraid to ask for help if he's unsure which is a very good sign.its better he does that then assume he giving you the best course of action which may be different to the other OS opinion...
it also shows he treating you as a human being and listening to your concerns,theres too many doctors and os' who i feel just want you out asap and are happy to fob you off and treat you are though you are a patient number rather then a person!  >:(
im keeping my fingers and toes tightly crossed for you!  ;)
this site has been a lifesaver for me too!
the people around me are good and supportive but i sometimes sense they get abit bored with the whole knee thing!
i can be reasured one day and will voice further concerns the day after and i sometimes get the impression they think "we talked about this yesterday!" so i end up not talking about it and worrying! then i usually vent the concerns nd frustrations i have on this site and get my reassurance from here instead!!
i suppose however much someone tries to understand,unless they have been through it themselves they can imagine how it feels but do not have to live it 24 hours a day like we do!!
thanks so much for the support you have given me! drop me a line if you ever need some too! im not sure what the time difference is between us but im usually online a fair few hours a day!!
my meal out went well the other night! i really enjoyed it! i really miss driving though! me my boyfriend and my uncle went out,i usually pick him up and help him as he in his 70's but him picking me up and helping me felt strange! (and somewhat frustrating!)
i like you,tire very easily,people do not understand this at all and assume as im sat in all day ive got nothing to do so why am tired!!
i think thats one of the reasons i feel tired to,not just the physical side of trying to drag yourself around on your crutches but the lack of mental stimulation you get! (you can only watch so much day time t.v!!)
even though im off the crutches now im walking in a fashion again but feel very unstable and still need my crutches more as a security thing really as i do not trust my leg not to buckle.
well enough of my ranting!! take care and i hope you have a better day today! good luck with physio tommorrow (they start early there!!)
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 11, 2007, 07:09:10 PM
Hi Claire -

Thank you for the well wishes and support! :)  It has definitely been a blessing!  :D

How are you doing today?  Does your knee still feel stiff or has it loosened up a bit throughout the day?  My knee feels even stiffer than it did yesterday.  ???  I've tried using heat to loosen it up (as my PT suggested before doing my stretches), but it seems that my knee just continues to get stiffer even with the heat.  The stretches/exercises yesterday and today have not been going well, but I keep plugging away at it (just not getting very far).  My knee just seems to be getting more swollen, painful (still have sharp pain under knee cap that began when I slipped getting in the car a few weeks ago), places on and around my knee that have a stinging sensation, pain (fairly sharp) along the medial jointline when I try to walk, and pain in the back of my calf (heat just makes this pain get even worse). :'(  Not sure what has caused all of this ???, but I am thoroughly sick and tired of it! :(  I'm trying to loosen up my knee and not lose the ROM I had gained, but as the day/weekend wears on, it just feels like my knee is properly fused!  Hopefully, this works it's way out before PT tomorrow morning.  Either way, I'm planning on talking to my PT about it and see if he has any ideas about what may be going on and how best to loosen it up.  And . . . in response to your statement . . . they do start PT early here :P.  My appointment is as soon as they open in the morning.  It's really early, but at least that way I can get it done with and it gets me out and about earlier in the day.  My PT sessions last 2 hours, so it's nice to get in early morning and get it done before lunchtime.  It's also much less hectic in there that early in the morning.

I'm jealous that you are off your crutches (at least in some fashion), but can definitely relate to feeling unsafe without them.  I'm still using both crutches because I cannot walk safely without them yet.  I can't even go down to just 1 crutch yet, as I walk pegleg unless I have both crutches.  My PT gave me some new exercises to do at home this weekend to work on walking more properly (without a limp) while still using both crutches.  He told me not to worry about trying to wean myself off of the crutches just yet and we will work on that some this week at PT.  I start my day with PT first thing 4x's this week (Monday, Tuesday, Thursday, and Friday).  My PT on Wednesday is later in the day so that I can finish up with PT right before I go to OS appointment so my knee will hopefully be as loose as possible when OS looks at it.

Anyways . . . I should get going.  I've got a speech to write (I told you about in my email I just sent).  Please let me know how you are doing.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 11, 2007, 08:02:24 PM
hi heather!
im sorry to hear you are still feeling stiff today  :'( mine also still feels stiff and i don't think it will feel much better tommorrow!!)  :-\
i enjoyed getting out today but found it extremely tiring,i took my cruthes with me and am very glad i did! i never used them to hold myself up, more to guide me and for a secuirity thing really in case i fell or the leg gave way on me (which it has a habit of doing!) i spent about 2 hours stood up on it today which is the most i've spent upright on it sine the op so although i think i'll pay for it tommorrow i feel i did pretty good! the good old faithful bag of peas came out as soon as i got home and mike put all the shopping away so i could sit down and elevate it! we enjoyed our dinner though it was nice to have a hot meal!! i've been eating smaller easier to prepare meals at home as when i was less mobile i found i still got the blood rushes now and then if i stood too long.thank god they have gone!
i have not done as many sets of physio exercises tody but i feel i've done alot already and don't want to overdo things nd put myself out of action! im getting the swelling down nicely at the moment and hope the physio feels im making as good progress as i feel i am!
your physio sessions last a long while!! i'm not sure how long mine will be but the last time i did physio after the first op they were only about 20-30 minutes!! our national health servie system though is known to be like that!!
i hope you enjoy the rest of your day!! its now just after 8pm in the evening here!! (i fell asleep as soon as i got home today!!........won't sleep tonight!!)
i will send you an e mail now!!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 11, 2007, 10:19:06 PM
Claire -

It sounds like you did wonderfully well with getting out and about today!!! :D  I can't imagine standing up or being up and about on my leg for 2 hours at a time!  I don't even attempt to walk (with crutches of course) through the grocery store yet, as I know that I wouldn't be able to stand it for more than a few aisles worth of shopping.  I do my shopping at stores where they have motorized carts with baskets on them so that I can ride around the store to do my shopping.  I'm glad you were able to prop your leg up and ice straight away when you got home.  Nice that your boyfriend was able and willing to put away the groceries while you elevated your leg. :)  It sounds like a good idea to give your knee a break since you have asked a lot of it today.  Hopefully your PT realizes how well you are doing.  When do you see your PT next?  My PT sessions are long even for here.  Most of the other patients at the PT center where I go, have sessions that are about 1 hour.  I have a very supportive and dedicated PT who is working really hard with me to reach our common goals (get my knee back in order as quickly as possible without risking doing any more damage; and avoiding MUA!). 

I hope you have a good night!  I think I'm going to get off the computer and go eat dinner.  I still haven't even decided what I'm going to have for dinner  :-\ - thankfully, I have a fully stocked refrigerator and freezer with easy to make foods right now :).  Please let me know how things go for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 11, 2007, 11:15:05 PM
hello heather!!
ive just sent you an email too!!
what a pair we make!! i can walk about now on my crutches but do not bend! so could not use one of the motorised carts at the supermarket as my knee does not bend enough yet to sit on one!!
if i could do that and you could stand up ok we'd be getting on pretty well as 1 person wouldn't we!!
i hope you enjoyed your dinner,what did you end up having?!
i really hope PT goes well tommorrow,I next see mine on thursday,it sounds as though your PT is great!
i was pretty pleased with myself today and all the walking i managed to do,(although very slow!)i think i'll be taking it a bit slower now though as i do feel i did abit too much!! i suppose its easy to when you feel you can do abit, you always want to do more!
i did not do as much of my home PT today as i was so stiff and achey when i got in, though i feel i will not have achieved as much ROM tommorrow as i usually do each day,i suppose ive gained more strength in my walking so i need to try and do bit of both each day rather then too much of one and not enough of the other!
well i'll be off for now,enjoy the rest of your day!!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 12, 2007, 06:01:26 PM
Claire -

Hey there!  Your message made me laugh (about how the 2 of us would get on well as 1 person)!  Thank you so much for that . . . I needed that laugh. :D  You could probably use one of the carts they have here though.  They have a longer platform where your foot goes and so you can actually sit in the cart and rest foot down on platform while keeping the leg straight.  I was able to get in them with no problems even when my leg was in a straight leg immobilizer.  Sorry to hear that you were stiff and achey when you got in from shopping yesterday.  I can definitely understand the want to do more than you probably should do as I have had a number of times before and after surgery when I tried to do too much for my leg (ie, too much shopping, trying to do housework, being on feet more than I probably should have been).  It sounds like a good idea to try to balance out how much home PT and walking you do each day.  To answer your question about dinner . . . I ended up having a ham sandwich (made with raspberry ham ---yummy :)--- and a salad).  I decided that was definitely easy to make and carry to another room (I've got a bunch of plastic containers with lids so that I can put them in a plastic bag to carry to the living room to watch TV while I eat).

As for knee stuff . . . my knee was still very stiff and painful, etc this morning when I went to PT.  I told my PT when I got there that it had been a bad weekend for my knee.  When PT saw how I was walking (not properly, leg too straight) he asked me if I had been practicing peeling the banana (that's what he calls it when after taking a step you lift your heel and roll to the ball of your foot before picking up your leg to take the next step).  I told him I had been trying to, but that my knee was so stiff that I couldn't bend it far enough to bring my leg through properly without hip hiking.  After A LOT of painful stretches/bending, I only got 109-degrees ROM today. :'(  I have to get back to at least the 120-degrees I got on Friday before I see OS on Wednesday. :-\  I want to know why my knee is misbehaving so. ???  I don't know if the OS I will see on Wednesday will have an answer, but I am going to ask him about this.  I KNOW the OS will not be happy with my ROM if this is all I have on Wednesday (that will be 1 day shy of 8 weeks since my surgery). :(  If I were to be seeing my current OS and only had this amount of ROM, I KNOW he would be recommending MUA!  :(  I don't know if the OS I will be seeing on Wednesday would recommend MUA, but I DO KNOW that he would not be happy with this amount of ROM at this point!  Hopefully, my knee will loosen up some before tomorrow and I will be able to get back to 120-degrees at PT tomorrow morning (or at least get close to that and then get 120-degrees at PT Wednesday before I go to OS appointment).  I have a list of questions for the OS because I've been getting some strange new sensations in my knee (stinging; pain along medial joint line, pain in other parts of knee, and a pain in my calf that gets worse with heat even when I'm not using my leg).  Some of these new sensations may just be my knee cap getting used to being in a new location, but they just don't seem right to me and are worrisome.  Hopefully, the OS will be able to help me get at least some of this sorted out.  I'm sorry for rambling on . . . it's just today has not been a good day knee-wise.  I've tried heat, ice, bending/stretching, massaging knee and so far nothing seems to really be able to loosen it up much today.  In fact (even with these things), the knee has stiffen up again since PT.  It's also throbbing behind the knee cap. :( ???  I can't even blame it on the weather (as it is a beautiful day here and warmer than it has been in quite a few weeks/months). ::) :P

Anyways . . . I should get going.  I've got a speech to finish writing.  Please let me know how things are going for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 12, 2007, 07:47:19 PM
hey heather!!
i've just sent you an e.mail! ..........glad my joke made you laugh!!
im sorry to hear your'e having pain and stiffness from your knee today,mine feels pretty stiff today too! ive been doing my physio exercises today but feel ive come to abit of a standstill with my ROM,as im abit more flexible now then i was last thursday i guess my physio will give me more exercises to do when i see him this thursday.
i really hope that the OS on wednesday is pleased with your progress and does not feel the MUA is needed,i hope you get the ROM back that you have you have lost...... your PT sounds extremely dedicated though so im sure he will do everything he can to ensure your as flexible as can be when you see the OS!
My physio taught me how to walk the way yours told you too (he never called it that though!) i managed to walk like that all day yesterday while shopping but today have gone back to a definate limp! its so frustrating as i was feeling so positive yesterday and today i feel ive just stopped were i was!
oh well i'd better be off as mikes nagging to go on ebay!! have a good day and i really will be keeping my fingers crossed for you!
take care!
claire.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 13, 2007, 06:37:49 PM
Hey Claire-  :)

How are you doing?  How's the home PT going today?  Do you still feel like you are at a bit of a standstill?

My knee is still misbehaving today.  :(  Bad knee, Bad knee, Bad knee. :P :'(  Yesterday afternoon part of my leg did not feel right, but I couldn't put my finger on exactly what seemed off.  Then last night part of my lower leg (front medial portion of lower leg below knee) went numb, REALLY numb!  I had to push/rub really hard for me to feel anything and then when I did feel it, it was a pain deep in my leg (it actually made my shinbone hurt)!  I tried propping up my leg to see if maybe the way I was sitting had put too much pressure on it or something.  Propping up the leg, helped a little bit, but it was still rather numb.  When I woke up this morning the section was more numb than it had been last night and it still is!  Don't know what is going on. ??? :-\   Also, this morning I started getting a burning pain at the edge of my knee cap on the lateral side.  It's very sharp and painful and sometimes the pain radiates down the lateral side of my leg partway down the calf! :'(  I told my PT about the numbness and burning pain this morning, but he's not sure what would have caused this either.  Both of these things are on my list to ask OS about at tomorrow's appointment.  I'm just hoping that it's nothing serious and that it will just go away soon.  My knee was still very stiff today and painful.  My PT tried some new stuff with me today to try to loosen up the knee.  I spent an hour on the BioDex machine (torture chair contraption :( :P that runs by a computer and bends knee for you ---passive motion).  That machine hurts!  Anyways . . . while I was on the BioDex my PT pressed on various places on and around my knee cap as the machine bent my leg (PT said he was trying to stretch/release some scar tissue in the ---I think he called it "fascia"--- that goes across the knee cap).  It hurt quite a bit, but I think it may have helped loosen things a bit.  Also, my patellar tendon was quite painful, so PT used ultrasound on my knee while the machine was bending my knee.  PT said these things were a first for him to use so many different things while the machine was bending knee (we used, TENS Unit, heat, manual pressure, and ultrasound), but that we were trying every combination of things he could think of to get my knee moving better.  Then, after I did a few stretches on my own, my PT worked on bending my knee for me.  It HURT really badly (I couldn't keep from crying  :'().  At one point, we realized that as he was pushing to bend my leg, I kept sliding back towards the table (I wasn't trying, but the force of the pushing was doing it).  So, my PT got one of the assistants to sit on table behind me pushing against my back and he got another PT to come over to do the measuring so my PT could use both hands as he bent my knee.  When it was hurting really badly :'(, the assistant behind me started rubbing my back (she actually was trying to make me guess what she was "spelling" on my back ---I couldn't pay attention to it well enough to tell what she spelled) and my PT kept telling me that it would be okay, that my knee cap wasn't going to go out of place, and reminding me to keep breathing!  My PT is very dedicated and determined to getting my knee bending more.  With all of that, and me crying, we got 118-degrees of ROM today.  That was a very hard-earned 118-degrees!  I'm hoping that we will be able to at least get back to 120-degrees ROM tomorrow before I see OS and that 118-degrees will be easier to get.  I don't think the OS I see tomorrow will be happy if it is that painful for me to get to 118-degrees ROM. :-\  I'm hoping that my knee will be looser tomorrow, but I'm not feeling too confident about it right now.  Even with stretches at home, heat, ice, etc. my knee has stiffen up already, is throbbing behind the knee cap, has pain in calf, has VERY numb section (lower leg), and has STRONG burning sensation on lateral edge of knee cap and radiating down into calf. :'( :-\  Did you get a burning sensation with your knee?  If so, do you know what caused it?  Was there anything that helped it?  I'm trying not to worry about it, but just don't know what it could be or why it would start 7 1/2 weeks post-op. :-\ ???

Anyways . . . enough complaining/worrying.  I have a speech that needs my attention right now.  I hope your day is going better than mine is.  Thank you for keeping your fingers crossed for me! :)  I really appreciate it and your friendship!  Thank you! :) Please let me know how things are going for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 14, 2007, 12:24:30 AM
hi heather i have not been in long but have sent you an e mail too!  ;)
im really really sorry to hear you are having all these problems so close to seeing the OS,I'll be thinking about you tommorrow and praying he is pleased enough with your progress to not consider the MUA, i wish there was something i could do or say to make you feel better  :'(
i have had numbness and burning in my knee since the op and some really weird sensations and pains.some of them i never experienced straight after the op and it alarms me abit im getting them now! my skin over my kneecap sometimes when i touch it feels really tender almost as though it has been burnt,it is not like this all the time but i find alot of my pain comes on on an evening and when i get up first thing in the morning.
i stubbed my toe of my bad leg tonight and to say it was not much the pain was pretty extreme for what i did.
i know there are many times ive thought i wish i never had the op done! i know deep down its the right decision as i could not leave it as it was and it would have created all sorts of problems for me when i get older but its just so frustrating how slow the progress is and that pain can still be so bad after several weeks!  :'(
i wish you all he luck in the world tommorrow and have sent a lucky charm your way!!..................

(http://users.stargate.net/~jshryock/clover/clover.gif)(http://www.paddymagic.com/greeting/greetingcard.jpg)
take care and please keep me posted how it goes...............claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 14, 2007, 02:53:10 AM
Claire -

Thank you for the lucky charm and for the words of encouragement (letting me know that I am not alone with some of these sensations I've been having lately)!  I really appreciate it!!! :)  Although I'm sorry to hear you are going through some of these same sensations also. :'(  The tender feeling that you are describing in the skin over your knee cap, I've had the feeling also.  I've had the feeling since the op, so haven't really thought much/worried much about it.  However, I could feel that sensation more tonight as I had a pair of pants on for the meeting where I was giving a speech and it was the first time I've worn pants (other than fleece or jogging pants - loose fitting, very soft) that actually rubbed against the skin on my knee since the op.  This didn't worry me much because it's a sensation that I have felt since the surgery (just amplified a bit).  I find myself worrying more about some of the other sensations I am having, as they are new and PT does not seem to know what is causing them. 

I'm sorry to hear about the pain and swelling you've been having after stubbing your toe tonight.  :'( Hopefully, it will be better tomorrow.  I'm keeping you in my thoughts and prayers.  :) Please let me know how things are going for you.  I'll definitely post something tomorrow after I get back from OS appointment to let you know what I find out.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 14, 2007, 11:15:30 AM
hi heather!
....................i've still got my fingers and toes crossed for you for today!  ;)
i really hope the response you get is the right one! please let me know how it goes as the OS today.  :-\
thanks for the reassurance these strange feelings are normal! it worries me sometimes as i was never told i may get these and worry that something is wrong after the fall i had! i feel ok today,no pain as such but i do feel my ROM is quite bad,i feel as though i have stiffened up again and do not feel i am bending as much when i did my physio today,i did do quite alot of standing yesterday though so do not know if this may be why?
as i am starting doing exercises to try and strenghen the muscles up i have also been getting some pain and aching in the back of my leg/knee and thighs so i assume this may be that i am using muscles that have been unused a while and it is just aches from that?
im going to mention these to the physio tommorrow when i see him,i'll be off for now but will keep checking back to see when you update!!
i'll be thinking about you and hope all is well,
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 14, 2007, 10:04:42 PM
Claire -

Hello!  Thank you for keeping your fingers and toes crossed for me! ;) 

I only got to 114-degrees ROM at PT today (and that was after lots of painful stretches, etc.) and I ended up crying because it hurt so bad! :'( 

When I saw the OS today, he was very nice and friendly, but I still don't know if I will be told that I need to have MUA. :-\  The OS I saw today said that it looks like I'm making progress, but that it's very slow. :-\  He didn't bend my knee at all when I was there today because he said he thought I had been tortured enough at PT today, so he just asked me what ROM I had today.  He does not know if my current OS will think I need MUA or not, but the OS today does not want me to wait a few weeks to see current OS and have current OS then say I need MUA.  So . . . OS today told me I have to see current OS next week.  I have an appointment with current OS on March 22 (next Thursday), so will see then if I have to have MUA.  The OS I saw today also did not really have an answer for some of the pains/sensations that I have been having recently.  He said the numb patch on the upper medial area of my lower leg may just be from some swelling putting pressure on a nerve.  He also said that the burning sensation may just be some "skin nerves".  He recommended that I use vitamin E oil to massage the scar (big incision and 2 arthroscopic portals), the numb patch, and where I get the burning sensation.  He said that massaging the numb area may help to stimulate those nerves.  He also said that massaging where I get the burning sensation may help to desensitize those "skin nerves".  We'll see.  I've already massaged it once since I came home today.  I had already been massaging the scars to try to break up scar tissue and prevent them from tacking down (been doing that since about 1 week post-op), but just wasn't using any cream or oil when I did it.  I also asked the OS today about what I could do to get some sleep (knee pain still wakes me up every 1 1/2 - 2 hours each night).  Since I already have Percocet that I take before going to PT each day (1 pill about 1/2 hour before I leave for PT), OS today told me to also try taking Percocet before going to bed at night to see if this helps until I can get in to see my current OS next week.  I talked with OS today about my current OS having talked to me before about trying not to take the pain pills (except the 1 before PT each day), but the OS today said that I should go ahead and try taking it at night before bed also so that I can get some sleep and then talk to my current OS about it next week.  Those are the only changes the OS made today other than to recommend that I don't use heat at home (he said it's fine to do so at PT), but that I should just stick with using ice at home.  The problem is that when I get the burning sensation, ice makes it worse.  So, I guess I will be trying to figure out how to ice my knee while keeping the ice off of the area that has a burning sensation.  Not sure how I'm going to do that yet with the type of ice packs/wrap that I have, but will try to figure it out later tonight.  I mentioned to the OS today about my knee still buckling on me at times and he said that is probably just from my leg being so weak still.  He asked about me still using the crutches and if I am putting any weight on my leg.  I told him that I started putting weight on the leg on Feb.23 when I last saw my OS and was supposed to be weaning myself off of the crutches, but that because my leg buckles I use the crutches because I'm scared not to.  I also explained that most of the day I don't have enough bend in my leg for me to be able to bring my leg through without hiking my hip or limping.  The OS today agreed that I should keep using my crutches instead of hip hiking or limping.  I told him that my PT had worked with me on it some and gave me some exercises to do at home to work on it.  The OS today asked if I was doing any strengthening exercises and I told him "no, because (current OS's) script for PT said no strengthening until full ROM was achieved".  I told OS that was one of the things I wanted to ask about today because I wanted to know if I could finally start some strengthening exercises.  The OS today told me "no" and that it was important for me to get full ROM first.  So I don't know when I will be able to get some strength back in this leg. :-\  ROM is not going in the right direction this week, but don't know what I can do about it so I can finally start doing strengthening and get my life back to some sort of normalcy.

I'm pretty sure that the appointment with the OS I saw today didn't hurt anything, but I'm not so sure how much good it did either.  I'm still concerned about most of the stuff that concerned me before I went to the appointment today and I still don't have an answer about whether or not I will be told I need to have an MUA. :-\  This whole thing is soooooo frustrating! :-\  I want some answers and I want my life back!  I don't know how much longer I can take the pain and my knee acting up like this!  UGH!!!! :'( :-\ :(  I'm sitting here  :'( crying  :'( right now because it hurts so bad (and I haven't even been doing anything with it for the last few hours), but don't really know what I can do about it (I can't ice it right now because I have that strong burning sensation that radiates down the lateral side of my leg and ice will just make it worse)! :'( :-\ :( :'(  I am to the point where I really want to give up, but I know I can't because nothing will get better if I give up!  I'm just so tired of all of this! :'(

I guess I just have to wait until next week when I can see my current OS and hopefully can get some answers (and no MUA)!  I'm also going to continue with the vitamin E oil massages and see if they will help (it didn't seem to help so far today . . . if anything, the burning sensation is worse now  :( :'(. . . but maybe over time the massages will start to help some).  We'll see.  I just can't understand why (when I'm almost 8 weeks Post-Op) these sensations would suddenly start.  It seems to me like I should have been to the point where things were starting to get better. 

Anyways . . . enough complaining.  How are you doing?  Sorry to hear that you feel you are at a bit of a standstill with ROM. :(  Please let me know how it goes with PT tomorrow.  I'm keeping you in my thoughts and prayers! :)  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 15, 2007, 01:23:59 PM
hi there heather!
im sorry the meeting with the OS did not reassure you in any way and really hope when you see your OS next week that it goes well for you!
i will send you an e mail shortly............
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 15, 2007, 05:27:14 PM
Hey Heather! Sorry you had such a painful PT session the other day and that you didnt get more answers with the OS. I know how frustrating that can get. Just hang in there though. Its bound to get better soon.

I can relate to the weird sensations you are having in your knee and calf. I, too, get the burning in my knee, and numbness. Also, as I think I might have mentioned before, when my knee locks, I get a sharp pain down my leg and into my foot, and then my foot goes numb and cold. Its not fun, I know. And it scares the "begebees" out of me sometimes.  :o( How did you like that word??!! Lol. Ice does make it feel even more weird sometimes. And, I have the problem with ice causing me to welt up. Now, when I use my Breg Ice machine, its not as bad. But the ice pack they use at PT, or putting a regular ice pack on at home, all make me welt up and get itchy. So, when my knee is already burning, the last thing I want to do is make it any worse.

I dont care for taking pain meds either. But, I have learned to do so anyways, when I know the pain is getting bad. Want to get it before it gets out of control. Have you tried taking some Tylenol PM at night? The work great for me. They contain benadryl, so knock me out, and dont make me feel groggy the next day. Maybe you could try that. Not quite as potent as some of the prescribed pain meds.

My rehab guy(Chris) came to my PT session today to introduce himself to my PT. He was asking alot of questions and I was taking it all in, of course. Mark, my main therapist, actually saw me for the first time shortly after I injured my knee 2 years ago. So when Chris asked him how he thought I was doing , he said well, she has definitely improved from the first time I saw her at the other rehab place. He also asked him how much longer he thought I would need PT. And he said at least one more script, after I see my doc on April 6. I am sure workmans comp pressures him to push my rehab. Dont get me wrong, hes a great guy, and he knows I am very honest about how I am feeling, but, lets face it, he indirectly works for the insurance company. And they dont want to have to pay any more than they aboslutely have to. I am so tired of hearing "You can get money for this", etc. This is not a money issue. This is all about making my knee better, so I can resume the life I was used to before I hurt my knee. Or at least, make it significantly better. Grrrrrrrrrrrrrrrr.....sometimes I could just scream.

So, dont feel like you are ranting. We all do that.And after we are done, we feel better, dont we??  ;D

Vitamin E is fantastic. I would definitely continue to use it.

You take care and let me know how you are doing.

Claire----As I just told Heather,  you are not alone in the "strange sensations" department. I get such weird pains. Burning, numbness, etc. and in weird places. But I keep hearing give it time. So I try to be patient about it. (which I am not good at) Lol.

Just try and stay positive. Come here and vent like I do....It sure helps.

Hugs to both of you....DONNA :D

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 15, 2007, 07:41:07 PM
Claire and Donna -

Hey there!  Thank you both for your responses and support!  It is really appreciated!  :)  Today has been a bit of a strange day. :P I was already on my way to PT this morning when I got a call from my PT place telling me that my PT had called off sick today.  The receptionist said that since I need to be seen each day, she would figure out a way to get me in with another PT.  Since my PT does "joint mobes", I have to see a PT and not just an assistant because the PT assistants are not permitted by law to do "joint mobes".  Receptionist said they could get me in with another PT at 9:15am (My appointment had been scheduled for 7:30am.  I told her that was fine and since I was already on my way there and did not want to mess with going up the 20 steps to my apartment again, I would just come on in and wait there).  I decided since it was going to be such a long wait, I'd go to the bank first.  Then I got a call from the receptionist saying that the assistant who works with my PT came in early and could go ahead and get my session started until the other PT could then work with me.  It was a bit of a confusing start to the day, but we got my PT done.  My knee was extra painful today, but the PT that worked with me today did not push it quite as much as my regular PT does (the PT today said he didn't want to push it too hard since it was his first time working with me and he didn't know my limits).  However, it still really hurt (I was on the verge of tears) and we only got to 108-degrees ROM. :(  The PT assistant told me to call in tomorrow before I leave home to make sure my PT was going to be there or if they would need to reschedule me to a later appointment with another PT.  I really appreciate how much all of the staff at the PT place where I go work to help out, make sure I get the treatments I need done, and try to cheer me up or distract me when something is particularly painful!  Everyone there has just been so wonderful! 

I am still trying the vitamin E oil massage, but it did not seem to help any last night.  I'm hoping that it's just something that takes time before it starts to work.  I can deal with the numb patch (although it is still a bit worrisome), but don't know how much longer I can take the burning pain (if it continues at the level/progression it has been).  Last night it burned soooo badly and nothing I do seems to help (ice makes it hurt 10x's worse!).  :'( It was so bad last night, that I had red splotches on the skin, it was warm and swollen.  The burning pain was so bad that even having clothing touch (even really soft pajama pants) my knee made me cry and want to scream! :'(  It's burning right now, but not as bad as it was last night.  Hopefully, the massage will desensitize the area, so that this burning pain will become more bearable!  I guess time will tell.

Claire - I got your emails and will send you an email shortly.

Donna - I am so sorry that you are still having the strange sensations, pain, and locking feeling. :(  I'm also sorry to hear that you feel like the insurance company may be trying to push your rehab.  I can also understand about it not being a money issue and just wanting your life back.  Sometimes people who don't have knee issues do not realize how much knee problems can take over your life and how much you can grieve just wanting your life back.  I know it can be very frustrating dealing with such people.  Go ahead and scream . . . it sure can make one feel good to really just let it out! Just might want to make sure no one else is home or else that they are forewarned about it, so they don't think you just fell and bummed up your knee again or gone crazy!  :P ;) :)  Also, thank you for the reassurances that it's okay to come here to vent. :)  Did you get the pm I sent you over the weekend?  My computer was doing some strange glitches, so I'm not completely sure that the pm went through.  Also . . . are you ready for one more snowstorm for this winter?  I know people around here definitely do not want another storm (especially after having the last 2 days at 60+ degrees).  I just don't want to risk falling when I have to go out.  Hopefully, the storm doesn't really hit until after I get back from PT tomorrow and then I can just stay in all weekend.

I hope that things go better for both of you and that you are having good knee days.  Please let me know how you both are doing.  Take care.  I am keeping both of you in my thoughts and prayers.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 15, 2007, 08:17:41 PM
hi heather!
you sound as though you had the run around with the PT appt today! i got to my appointment 30 minutes early today and he was running 25 minutes late!
i got talking to this guy in the waiting room who had been in a head on collision with a big truck! OUCH!
im glad you finally got the PT session in the end today though heather!
im sorry to hear that the vitamin e has not helped.
i will respond to your e-mail when i get it!
donna how is yur PT going?
take care both of you! keep me posted how your'e getting on!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 15, 2007, 09:16:35 PM
Claire -

I just sent the email to you.  It sounds like you actually waited longer for PT today than I did.  Once I got the call that the PT assistant had come in early and could get me started early, I got there and didn't even wait 5 minutes before she took me back to start on some of the stuff that the PT does not have to be the one to do.  After I did first set of exercises, the assistant and another PT set me up on the BioDex "torture chair" machine and I was on that for over an hour.  While I was on BioDex machine, the PT that I was going to be working with today got there and did ultrasound while I was on the machine.  Then I worked with the PT until he had to go work with his next patient and the PT assistant then finished working with me.  I did wait in the PT center for about 20 minutes while PT assistant worked with 2 other patients before she finished my session.  However, I didn't mind the wait . . . I knew they were really busy because they had a couple of PT's not there today and besides that, my knee was glad to have the break. :P

Take care and let me know how things are going. :)

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: luvbball on March 15, 2007, 10:11:25 PM
Hi everyone. I'm a 17 year old athlete and I will be having a MPFL reconstruction/LR done in about 2 and a half months. This will be my third surgery in 2 1/2 years. (The previous being LR/VMO tightening and a Fulkerson). I was forced to quit playing basketball because the pain and subluxations were to severe and frequent. My OS seems to think this will solve it, and I hope he is right. I was just wondering 1. how successful it has been for everyone 2. post op pain 3. technique (he said mine will come from my quad tendon instead of a graft-no more hardware seeing as I already have screws) 4. post op problems 5. post op brace, crutches, how long etc. I really appreciate any input.
Thanks
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 15, 2007, 10:39:01 PM
Hi Heather....Thanks so much. I thought I replied to your IM, but maybe not.  :-[ Ill go back and check it out and go from there....lol.

You definitely did have an interesting morning, didnt you? lol. My PT was uneventful.

The weather here is calling for around 3 inches by Sat. How about for you? You are a couple of hours east of me. Im so ready for spring. When it was nice out for those few days, it was so refreshing. But, mother nature tends to do her own thing, doesnt she?

Have a good evening.

DONNA
 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 15, 2007, 10:48:43 PM
Claire....PT is going ok...slow. With the patellar tendinitis, they cant do the LR rehab the way they would like to. I am still just doing SLR's, slides, patellar mobs, leg lifts with can under knee (cant remember what they are called...lol), quad sets, then stim, ultra sound, and iontiphoreses and ice. Thats it. So, I just keep at it. All I can do.

What all are you doing in PT? I read about that guy you were talking to. OUCH is right.Seems there is always something, isnt there? WOW.

Ok, well going to go check some other things, but will probably be back later.

You take care.

DONNA

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 16, 2007, 10:14:43 AM
hi heather and donna...............
i hope you are both ok today!  ;D
heather i hope you have managed to get the burning pain to ease somewhat,i will reply to your e.mail shortly!
donna,it was pretty inspirational seeing that man yesterday,he was driving a (automatic) car again and said that the sugeon had managed to save his leg as they thought it would have to be amputated,he was such a cheerful bloke  ;D and it was really nice to see how well he had come through it all!
take care!  :D
claire x 

hi luvball!  :)
sorry to hear of the knee problems you are having,have you posted your details in a brand new post?
you may get more replies if you do as with this being someone elses diary, people who may have answered your post and be able to help you out may not see it here,if you need any help to log a new post,reply to this one and i'll tell you how you can do it!  :P
take care,
claire.  ;D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 16, 2007, 06:22:14 PM
Hi all!   :)

I hope that you are all having a good day!   :)  I'm glad I managed to get my PT session in today before the worst of this snowstorm hit!  My PT was off work sick again today, so I worked with another PT this morning (not the same one that I saw yesterday).  PT was painful, but I got through it without crying (although I was on the verge of it at one point).  We only got to 112-degrees ROM today.  :(  Hoping that things start going better next week or else I know my OS will not be happy when I see him on Thursday.  My knee just seems to be extra stiff and extra painful this week.  I still have the burning pain in my knee that shoots down the lateral side of my leg.  :(  It flared up again last night to the point that it was swollen, had red splotches on skin, and the burning pain was sooooo bad that if anything touched it I could scream! :'(  Wish I could figure out what is going on and how to stop it.  I'm still doing the vitamin E oil massage and hoping that it will start to work over time.  We'll see.

Luvball - Good luck with your surgery!  :)  To answer your questions:  1) so far mine has been successful in that my knee cap has not dislocated or subluxed since the surgery (I'm now 8 weeks 1 day post-op).  2) when I woke up from surgery, they couldn't get my pain under control and so I had to stay in the hospital overnight with a patient-controlled morphine pump.  However, from what my OS has told me, that is not the norm . . . in his experience most people go home the same day of surgery.  3) mine involved the use of a cadaver's ligament rather than harvesting a graft from me.  My OS says he prefers to do it that way so that there is no harvest site pain to deal with.  I have one bio-absorbable screw holding the ligament to my femur and two bio-absorbably anchors holding the ligament to my knee cap.  4) & 5) it's easier to refer you to read the rest of my posts in this post-op diary for info on post-op problems and rehab stuff.  I used a straight leg immobilizer for approximately 4 weeks and was non-weight bearing for a little over 5 weeks (was supposed to be non-weight bearing for 6 weeks, but due to difficulties with ROM my OS decided to let me start weight bearing with crutches a bit early).  I'm still using 2 crutches as I do not feel safe without them (my knee buckles with no warning when walking . . . most likely due to lack of muscle strength, but I'm not allowed to do any strengthening exercises until I regain full ROM) and most of the time I cannot get my knee to bend enough when walking to properly bring leg through without limping (PT and OS I saw this week told me to keep using both crutches . . . better to use them & not limp than to not use crutches & limp).  There are two other post-op diaries on here from people who have had MPFL reconstruction.  I found them to be helpful when I was preparing for my surgery.  If you do a search for MPFL reconstruction on this site, you'll be able to find both of these threads.  Please keep in mind that everyone's experience with post-op pain, rehab, etc. is different and while I'm having a rough time with things I don't think that's the norm.  It is a painful surgery and a long, tough rehab process; but I'm sure you will do fine.  Just keep in mind why you are going through with this surgery (to get life back, etc.).  :)  If you have any other questions or if there is any way that I can be of help, please don't hesitate to ask. 

Donna - It definitely was an interesting morning. :P Today was less eventful, even though my PT was still out sick.  The PT center had already arranged for another PT to come in early (7:30am) to work with me so that my appointment time didn't need to be changed.  The PT was very good and kept checking with me to make sure I was okay and to make sure he was doing things the way my regular PT does them.  I really appreciate how nice everyone is where I go for PT and how much they care about the patients!  :)  I do still miss my regular PT, though, as he knows more about what is going on with my knee, is very dedicated to helping me rehab this knee and avoid MUA, and I think he is able to push me a bit more than when another PTs works with me.  He also talks with me about all sorts of things to help distract me from the pain (it still really hurts when he's pushing it, but he tries to distract me).  Also . . . the weather here is crazy! :P  We probably already have 3 inches of snow today.  The forecast is calling for approximately 6 - 10 inches before this whole thing is done.  I just can't believe we had 60+ degrees the last 2 days and now they're calling for 6 - 10 inches of snow. :P

Claire - The burning pain is still there.  It almost seems like there is a bit of it there all the time and that sometimes it just flares up and gets worse (in some cases MUCH MUCH worse!)  :'(  Hopefully over time this will get better.  Either way . . . I'm going to discuss it with current OS next week when I see him.    Also, I'm having problems logging onto email right now, but I will check email as soon as it will let me log in and will reply to it at that time.  I apologize in advance if it takes awhile for me to reply, since I don't know when this email thing will straighten out.  Right now, the internet won't even let me get to the log-in screen.  :-\

Anyways . . . I hope you are all having good days and have a good weekend.  :) I am keeping you in my thoughts and prayers.  Take care.  :)

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 16, 2007, 09:07:45 PM
hi heather! ive just finished my last exercises for the day and mike has just got in from work!
i watched a film earlier but it was not too good! theres another on soon so it might be better then the other!
i hope you have a good weekend!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: luvbball on March 17, 2007, 03:41:06 AM
Hello again,
I just want to thank everyone for their replies. Every little bit of information is making me feel a little more comfortable about this surgery.

Lighthousefan- I've had time to sit down and thoroughly read your diary. Thanks for posting it, it has given me a lot of information that will be very helpful. I'm sorry you've had some rehab problems...it's a bummer but keep working hard. Everything is going to work out great. I've also noticed some huge differences in what you've gone through and what my OS told me. He told me my whole entire rehab would be done within 6 weeks. I have a hard time believing that considering i was on crutches for at least 5 weeks last time.  :P  That would be very nice if it only took six weeks, but I hope he is not getting my hopes up. I was also told I would be partial weightbearing immediately. It's so strange how different doctors have different protocols for the same procedure. :)
Thanks again and good luck with rehab/recovery everyone.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 17, 2007, 07:49:44 PM
Hello everyone!  I hope that the weekend is going well for all of you.  I'm snowed in (thankfully, I don't have to go anywhere and can just sit inside and enjoy looking out the window at all the white-stuff :)).  However, I'm hoping that it all goes away (at least on sidewalks, roads, and parking lots) by Monday morning when I have PT again at 7:30am.  My knee continues to misbehave today (very stiff, painful, swollen, numb patch on lower leg, and burning pain that shoots from knee down lateral side of leg).  Wish I could figure out how to get this thing going in the right direction again.  Or at least get it to loosen up some and make the burning pain more bearable (it had me crying again yesterday because it hurt so bad that if anything touched it I would cry and want to scream :'().  Trying to just hang in there and hopefully, get some answers when I see my regular OS (who did the surgery) this Thursday.  Nothing seems to be helping it so far, but I'm still doing the vitamin E oil massages that the OS I saw this past week recommended that I do (hoping that maybe it just takes some time for them to start working).

Claire - How was the second movie last night?  Hopefully, better than the first one.  I just sent you an email.  Hope you are having a good weekend.  Take care.

Luvball - I'm glad that I could help.  I also have found it to be strange how different the protocols are depending on the OS.  Mine had initially told me to plan on being off work for approximately 3 months after the surgery and that I would probably be in rehab for about 6 months after the surgery.  I'm not sure how long I'll be off work and in rehab now that I'm having these problems with ROM and pain/strange sensations.  Hoping to get some answers when I see my regular OS (who did the surgery) on Thursday.  If you have any other questions or any way that I could be of help, please don't hesitate to ask.  I hope that things are going well for you and I am keeping you in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 17, 2007, 09:01:30 PM
hi heather! i've just sent you an e.mail! so far so good no snow here yet! ...................they are still forecasting it though!  :o
i hope your PT session on monday goes well and your regular PT is back at work.
i'll be thinking about you when you see your OS on thursday and hope he can answer your questions for you and does not recommend the MUA,im so sorry theres nothing i can do for you and its horrible to think of you upset while you are going through this pain,i'm often thinking of you and am keeping you in my prayers!  :'(
take care,claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 17, 2007, 10:00:06 PM
Claire -

I'm glad there's no snow there yet! :)  I'm praying that you don't get the snow that is forecast! :)

Thank you soooooo much for the support and encouragement!  I appreciate it more than I can put into words! :)  I will keep you updated. 

How are you doing?  Please keep me updated.  I continue to keep you in my thoughts and prayers.  Take care. :)

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 18, 2007, 11:25:59 AM
good morning heather!! i hope you are feeling a little better today?  :-\
your'e more then welcome for the support!......... you have offered me plenty aswell and it is very very much apprechiated!  ;D
i hope the snow soon stops there and it begins to melt soon!
please take good care of yourself tommorrow when you go to physio!  ;)
i hope you have a nice cosy weekend in and i will e.mail you shortly!!  :)
take care,claire x


Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 18, 2007, 04:52:29 PM
Claire -

Hello there! :)  I hope you are having a good day and no snow! :)  At this point, the sun is out here and it looks like the roads and sidewalks are all clear!  ;D  I'm glad because I just found out my grandmother is cooking dinner for the entire family tonight so I will be going out for a bit. :)

My knee is still misbehaving. :( :-\  So will probably start another post about the burning pain to see if anyone on here has any ideas what might be going on and how to help it.  I don't think I can deal with it like this until I see OS on Thursday, hopefully, someone will have some ideas to help. :-\

I'm hoping that my regular PT is feeling better and is back tomorrow.  I like everyone at the PT center and appreciate their help, but I feel that my PT is able to push things a bit more because he knows my limits and knows my knee better.

How was the trip to your mom's for Mother's Day?  Hopefully, it was enjoyable and no snow! :)  Please let me know how things are going for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 18, 2007, 06:49:05 PM
hi heather! i'm so glad the snow is melting!  :)
i really hope your regular PT is back for you tommorrow,he sounds really good and i can imagine why you want to keep seeing him.  ;D
i hope you enjoy your meal out tonight with the family and i am just in the middle of e.mailing you now!  :P
i started one earlier but the taxi came earlier then planned to take us to my mums so i never got to finish it!  :P
take care later in the snow!  ;)
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 18, 2007, 07:21:58 PM
Claire -

Thanks for the help!  Did you have an enjoyable visit with your mom?  I'm looking forward to dinner at my grandmother's house.  She's a really good cook! ;D  We're having beef and noodles!  Oh, and homemade chocolate cake with chocolate icing! ;D  Every couple of weeks she makes a meal on Sunday for the entire family.  The whole family used to get together at her house every Sunday after church for a meal, but since some of the family has passed away/moved away, she just does it every couple of weeks.  It will be nice to get together with everyone for a bit this evening. :)  It will also be nice to be eating something other than my "easy to make" meals that I've been eating lately. ;)

I'll let you know how PT goes tomorrow.  I'm going to talk with him some more about this burning pain (as it has gotten to be excruciating at times the last few days  :'(. . . and I haven't seen him since it got so bad) to see if he has any ideas or opinions based on how bad it is and what the other OS said last week about it.  I just want this to all start going in the right direction again.

Anyways . . . I'll talk to you later.  I'm off to read your post in your Rehab Diary.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 18, 2007, 08:10:59 PM
hi heather!! i'm going to look up the "arnica" on the net and see if it is available in the U.S. my mum has used it on a burn before and said it soothed hers alot so it may help?  ;)
i hope you have a lovely time at your family meal! its sounds really nice having a good get together, i only come from a small family so we would not have that many people there!! the food sounds lovely though! theres nothing like a good cooked meal (AND CHOCOLATE CAKE!!!!) when you have been eating "quick" foods for weeks!! i'll be thinking of you going to physio tommorrow and take good care in that snow especially on your stairs!! hope your regular PT is back!  :D
claire x  8)

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 18, 2007, 08:28:11 PM
Claire -

Thanks for the reply and support!  I really appreciate it! :)  I've just sent you an email.  I am looking forward to a good home-cooked meal shortly! :)  I am going to get off the computer in a few minutes (my knee is not happy with me sitting at the computer right now), but I will be back on later this evening or tomorrow morning after PT session (7:30am again :P).  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 19, 2007, 11:45:34 AM
I read your postings and al I can say is that I hope things continue to improve and that your spirits improve. I too have had many surgeries in the past and my 9th surgery was just done 2 weeks ago. I certainly can feel your pain and wierdly enough I sorta got a chuckle from the post op day  1 and overnight events. I know that I was given a nerve block for my right leg and that I would feel no pain for about 16 hours. WRONG !!!!!!! once the block stated wearing off the pain went through the roof. I was also given morphine, but no pump and got an injection about every 2 or hours hrough the IV. I also got the percosets and after about 12 hours or so I was able to stop morphine and control pain with meds. They let me go. It is hard relying on others for everything. It is 2 weeks after surgery and will begin therapy. I cannot wait....NOT. I know what I am in for and times will be probably late afternoon because I cannot do anything and will rely on others. That stinks. The 1 thing I have to help manage pain and for now managing the pain is very important, as it is not going to disappear, was to try some herbal stuff that can be found in many stores. Generally, as long as I do what I am supposed to during the day the only thing that can be tough is falling asleep. There are a couple of things that I have tried (Valerian & Melatonin) to help with sleeping. They are not a narcotic so that is a plus. The other is that I have been trying to cut down on pain meds by atleast half. Instead of 2 percosets every 5 or so hours, I have been pretty successful with 1 every 6 or so hours. At night I have been taking the Melatonin and it does help me fall asleep. I do not want to rely on the pain meds for everything as I will need them for a while. Also, just trying to relax and breathing exercises does help.

Anyway good luck and if there is anything else, please feel free to use email.

sterns
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 19, 2007, 08:46:35 PM
Sterns -

Thank you for the reply and kind words!  It is really appreciated! :)  I'm glad you were able to get a chuckle out of the post op day 1 and overnight events!  It was a rather strange experience for me. :P  I'm very glad to be this far out from surgery, but rehab is definitely not going as planned.  Hopefully, things will start to improve in the next few days as I will be seeing OS on Thursday and am trying to avoid MUA.  I'm glad to hear that you've been able to cut back on the pain meds and manage things pretty well.  I had cut back on the pain meds, but the OS (not my regular one) I saw last week told me to take a Percocet at night before I go to sleep to see if that will help control the pain better so I can get some more sleep.  I must say that it has not really helped all that much.  On a good night, I might be able to sleep for 3 hours before my knee pain wakes me up and then I'm up every 1 1/2 - 2 hours because of the pain.  I'm going to talk to my OS about this on Thursday to see if he has any other ideas.  I know that I could sleep fine if it weren't for knee pain waking me up.  However, I'd also rather not be taking prescription pain pills if I can avoid it.  Don't know.  I'll see what OS says and go from there.  I do try to use deep breathing exercises to help with the pain (works better when I'm at home than at PT).  For my job, I have often taught people how to use deep breathing exercises to control anxiety, so I'm very familiar with the technique.  However, I find myself holding my breath when the pain gets really bad at PT. :P  Quite a few times when my PT is bending my knee really hard, he has to remind me to breathe.  I almost blacked out on him one time.  Interesting how I can teach others to use the technique but have a hard time doing so myself when the pain is REALLY BAD. ::) :P 

Had a tough time at PT today.  We only got 110(ish)-degrees ROM today with PT (my regular one) bending it painfully (I couldn't keep myself from starting to cry  :'().  My PT also mentioned that it feels like there is now a "hard stop" when he's bending it even though we got more ROM in previous weeks with only a "soft stop" (ie, pain was only thing stopping him from bending it further).  So . . . apparently there is something in the knee that is preventing PT from being able to bend it further (scar tissue maybe?). :-\  Still hoping to avoid MUA, but becoming less hopefully as time goes on.  Will find out on Thursday what my OS thinks.  Still getting burning pain that is excruciating when it flares up (which it has done at least once on each of the last 5 days). :'(   Not sure what to do about that.  Today my PT suggested that maybe I should call and speak with OS (not wait until Thursday appointment) about this, but I don't want to bother people at OS office and I do not think my OS is back in the office until Thursday.  Also, I already spoke with another OS in that office last week and he thinks it's "just skin nerves" and that vitamin E oil massages should help to desensitize the area.  Well, the massages are not helping and that burning pain is getting worse.  When it flares up, I can't let anything touch it or I will cry and want to scream! :'(  I'm going to see how it goes the rest of today and then talk to my PT again tomorrow.  If he really thinks it's something that should not wait until Thursday, I may go ahead and call in to see if my OS is even in the office so I can talk with him before Thursday.  If anyone has an opinion or advice on this, please let me know.  I hate to bother the OS office and don't want them to think I'm a big baby, but I don't know how much longer I can take the burning pain the way it is!

Anyways . . . sorry this has gotten so long and for rambling on about the burning pain and such.  I hope you are having a good day.  Please let me know how you are doing.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 20, 2007, 01:53:39 PM
hi heather! i've had bad problems getting on the site again today!
i hope you are ok? how did PT go today? bet it was good to have the regular one back!
Im going to send you an e.mail shortly as i'm going out with my friend shortly and it may be pretty late when i get home!
i also don't know if the site will have crashed again!
hope you are having a good day and you got to PT ok in the snow!
its coming down with a vengence here!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 20, 2007, 02:21:04 PM
LighthouseFan,

I have almost forgotten what iit is like to have a day without any discomfort. As far as the pain meds I still take percoset at night (sometimes 2). That is almost a necessity. I am tired of laying on my back with my leg raised high. It is an absolute struggle just to get in or out and just to get comfortable enough to attempt to sleep. I started my PT again yesterday and was as uncomfortable and as painful as expected and that is sad. Oh yeah there was alot of pain and breathing was not at the top of the list, more like white knuckle. I was able to move my knee a little (ROM 18 degrees) and when the PT took her shot I collapsed at 41 degrees. All I know that after I came home, had dinner and cleaned up I passed out cold for a couple of hours. There still was a lot of soarness the rest of the night. I know I have a long road ahead of me, but hope to walking by May with or without support.

I have experienced many ups and downs with various surgical procedures and if me I would call the regular OS as much as I need to, that what he is there for. Also, with the type of surgerical procedure you had, do you know if ther are any inherent problems that go along with. I ask because I had surgery on my shoulder and the surgeon failed to inform me of the battles that I would possibly have to endure. I did, but the point is were you made aware of all the possibilities?

Also, for me I have to wear a brace on my entire leg and can be very uncomfortable, especially when trying to sleep. It can be very irritating but I have to use this type until all of my staples are removed in a week or so and than an IROM brace. I am hoping this will bring some needed comfort. But what I am questioning is how well your OS has been working with you. Painkillers are certainly not an answer to anything, but there is one piece of equipment you may find a litle odd but works really well and try the link, but look at the products and what they do. (http://www.kneeshop.com/products.asp?cat=20).

I had started a posting the other day and you might find it interesting, but anyway keep a positive attitude and let me know what you think of the products and will find you later.

Sterns
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 20, 2007, 03:29:50 PM
Claire -

Sorry you are having such trouble getting on the site today! :(  Also, sorry to hear about the snow in your part of the world! :(  Hopefully, it does not lay or cause too many problems with going out or anything.  How are you doing?  I'm hanging in there, but my knee is still misbehaving (burning pain is worse than ever :'().  However, my PT did get my knee to 120-degrees ROM today (with me crying :'().  It is good to have my regular PT back though because he knows my knee better and will push it farther than the other PTs were willing to do (although I greatly appreciate their help during my PT's absence).  I will send you an email shortly. :)  I hope you have a good time out with your friend! ;D

Sterns -

It was good to hear from you. :)  How are you doing today?  Sorry to hear that PT was so painful for you. :(  I wish you well on your goal to be walking by May.  I'm still using 2 crutches as I do not feel safe even going down to one crutch because my knee will buckle (most likely just due to lack of strength, but I cannot do strengthening exercises until I have full ROM) and I cannot bend my knee enough (most of the time) to walk without hip-hiking and having a limp.  I have a feeling my OS will not be happy when I see him this week if I am still using both crutches, but we'll see what he says.  I'm just not sure what else I can do about it at this moment.  I'm working on my ROM and am doing some exercises to practice walking, but still can't get it to bend enough to not limp and do not feel safe without the crutches (I'm terrified to fall and be set back in rehab :o).  Although I wish you were not in pain, it was nice to hear that I am not alone in having difficulty remembering breathing when in a lot of pain.  I realized that I was holding my breath again when the pain got particularly bad during PT this morning.  My PT and another PT (that was helping out doing the measurement while my PT bent my knee) were worried that I was going to hit them because the pain got so bad when they were bending my knee.  I would not hit them because I know that they do not enjoy causing me more pain and are just doing their best to help me rehab this knee.  I was crying :'(, but my PT got my knee to 120-degrees ROM.  Hoping to keep that and get to that ROM more easily in the next few days so I can avoid MUA (I see OS on Thursday).

I spoke with my PT today about the burning pain some more.  My PT said that if I can stand the pain in the meantime, that it would probably be okay to wait until Thursday when I have my appointment to talk to my OS because it is only 2 days away and my OS would probably not be able to do much with just talking to me and not seeing me first anyways.  My PT suggested to try desensitizing the area (where burning pain is located) by lightly rubbing a very soft cloth on it for about 30 seconds, giving it a break, and then lightly rubbing it again.  And gradually increasing the amount of time that I rub the cloth over the area.  He said, even if it does not work, that by trying it I can then go ahead and tell OS on Thursday that I've tried desensitizing the area with vitamin E oil massages and with rubbing a soft cloth over the area very lightly.  I am also going to go ahead and stop doing the vitamin E oil massages to see if they were making the symptoms worse.  That way I'll also have that information to provide to the OS.  I like the OS who did my surgery and he did forewarn me that following this type of surgery it is possible to get numb areas across knee cap (as the incision is on medial side of knee cap and bunches of nerves run down leg on medial side of upper leg to medial side of knee cap and then cross over knee cap to continue going down lateral side of lower leg).  I did get a few numb areas across front of knee cap which occurred immediately following surgery (and some are still numb), but I now have a large area (front of lower leg, upper medial area) which did not start until a little over a week ago (approximately 7 1/2 weeks post-op).  My OS also forewarned me that a common problem following this surgery is knee stiffness and so was important to gain ROM back as quickly as possible.  I have been working very hard, but ROM is progressing very slowly (and OS thinks it is too slowly last time I saw him . . . hopefully, he'll be satisfied with progress I have made since last visit).  Nothing was said about burning pain being a problem after the surgery, so I don't know if this is common or not.  I honestly think that if this was a common problem after the type of surgery I had, that my OS would have told me about the possibility before.  I have a long list of questions for my OS that I will take with me to the appointment (so that I won't forget anything when I'm there).  Possibility of MUA (and all sorts of questions related to benefits/risks, OS experience with MUAs after the surgery I had done, how much force would he use, rehab after, etc), the burning pain, and difficulty sleeping are at the top of the list of questions. 

The piece of equipment that you are talking about and provided the link for . . . is it the cryo-cuff and polar care type cold therapy units?  I do not have one of the them (I have sets of ice packs and a cover they slide into that velcros about the knee that the hospital uses after knee surgery).  Thank you for the tip.  I had thought about possibly getting one prior to this surgery (to be prepared after the surgery).  However, with the burning pain I have, I absolutely cannot stand to have ice on the area of burning pain as it makes the pain excruciatingly worse.  So, I've been trying to finagle the ice packs so that the rest of my knee can get ice without having the ice on/near the burning pain.  I'm not sure how I would be able to do that with one of the cold therapy units.  If it weren't for the burning pain, I would definitely be checking into getting one of those units, though.  Thank you. :)

I will check out your posting.  I am trying to keep a positive attitude, but it has been extremely hard to do so with the rehab difficulties and especially the burning pain.  I cannot stand this burning pain (I even had to wait quite a while to go to bed last night for the burning pain to ease because even the bed sheets touching that area of my knee/lower leg hurt so bad I would cry and almost scream)! :'(  I just wish I knew some way to make this more bearable.  I'm hoping that maybe I'll be able to desensitize the area the way my PT told me to try today.  I'll just have to wait and see.

I hope that you are doing well.  Please let me know how things are going for you.  You are in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 20, 2007, 03:34:15 PM
hi heather!!  ;)
he he!! i mnaged to get on the site again! it's taking ages to load but i'm here!  ;D
i'm so proud of you for getting back to 120 degrees ROM today! i'm really sorry to hear it hurt you so much and you still have the horrible burning! :'(
i hope it soon eases and the OS can recommend something to ease this for you when you see him. :-\
take care and i'll look forward to your e.mail! ;D
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 20, 2007, 04:18:20 PM
Claire -

Thanks for the words of encouragement! :)  I just sent you a rather long email.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 20, 2007, 08:26:42 PM
 :o

I woke up a little while ago from my pain meds very abruptly. Last night I was doing more than I should have and started to fall, I didn't but I bumped my right leg (not to hard, but hard enough). My eyes popped out and I got into some trouble. I was able to relax afterwards, but I was soar this morning and gave into taking one percoset. I ended up falling asleep for a good portion of the day until my son came home. I was dead asleep and did not here a thing and when he came up he accidently startled me and every bone and JOINT in my body moved. I thought I was going to die. The pain would not stop shooting through me knee. So I manged to stop sweating from the scare and relax once again.

As far as the therapy device goes, I have not used them, I know a couple of people who have used them and did have good results. From what I know, some of these units pump cold water, continuously, around the area and are a little easier to bear than ice packs. Like you, my crutches are my only mode of getting around. They will be my legs for several weeks. I am hoping that for now, the bruising from the surgery is a large factor contributing to my pain. Though the staples are not comfortable either, but the bruising is pretty bad. Since this is the second surgery in 6 months I was sorta prepared for what was going to occur, or at least I thought. ::) The worst is the need to rely on everyone else for everything. Nothing is easy and for the most part can be very frustrating. I find sleeping through it helps. HAHA

Tomorrow is therapy, late in the day, so I know that most of the day will be spent asleep so I will be prepared to be moved and bent. I know that when I get home I will probably have dinner, clean up and pass out.

Take care, enjoy your days and try to relax. I will talk with you later.

Sterns
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 21, 2007, 11:14:49 AM
hi heather! how are you today! i've just sent you an e.mail too!  ;D
its a pretty epic one i'm afraid!  :P
i hope your day tody is going better then mine!
my PT appointment has been cancelled til next tuesday!  :-\
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 21, 2007, 03:06:16 PM
Hello, Sterns and Claire! :)  How are you doing?  Painwise, I'm having a rough day.  Burning pain is as bad as ever (and at times worse than it has been), the rest of my knee is more painful than it has been in a while, and knee is very stiff.  Although PT was bending my knee to the point that I was crying, it only got to 107-degrees ROM today! :'(  I'm hoping that I can get back to the 120-degrees ROM tomorrow at PT before I go see my OS later in the day.  I just don't know if that is too much to hope for with as painful as it has been. :-\  Last night was a bad night painwise as well.  I stopped doing the vitamin E oil massages and started trying to desensitize the area the way my PT instructed me to do yesterday, but the burning pain is sooooo bad! :'(  It had me crying at multiple times yesterday afternoon, night, and this morning. :'(  I just want some answers and to find out how to at least ease the burning pain some.  Hopefully, my regular OS will have some answers when I see him tomorrow.  I ended up going to bed last night 2 hours later than usual because the pain (burning pain and other throbbing/stabbing/aching pains) was so bad I could not sleep and could not stand the feel of the covers on my leg!  Then, once I did fall asleep, the pain in my knee woke me up every 1 to 1 1/2 hours (instead of the 1 1/2 - 2 hours it has been doing each night for the past few weeks)!  I had even taken a Percocet before I tried to go to sleep and still had this much trouble.  I'm lucky if I got 4 hours of sleep last night! :(  Sorry for rambling on . . . I've just had an extra rough day today painwise and having not gotten enough sleep.  If I can get the pain to calm down enough to fall asleep, I think I'm going to take a nap this afternoon.  I don't know if the pain will calm down enough, but I figure the way the pain has been the past week or so, I need to catch some sleep whenever I can (whenever pain is at least somewhat more tolerable) because I can't tell when the pain is going to be too tough for me to sleep.

Sterns - I'm so sorry to hear that you were having such a rough time with the pain yesterday! :'(  How are you doing today?  Hopefully, today is better than yesterday. :)  I also hope that your therapy today goes well. :)  How often do you go for therapy?  Maybe you mentioned this before and I missed it, but . . . what kind of surgery/injury did you have?  How long ago was it?  When do you get your staples removed?  I've never had staples, but for everyone I know who has had them they have said that the staples caused a lot of pain (especially when starting PT).  Also, most of the people I know, have said that their pain significantly decreased and PT became significantly easier once the staples were out.  Hopefully, that will be the case for you.  In my case, my OS used dissolvable stitches to stitch the inside of each incision and then glued the skin together (everyone who has seen the scars, has commented on how good my OS's handiwork is and that the scars should look pretty good - PT told me today that he thinks once the coloring has gone out of the scars that they won't be very noticeable at all :)).  I also should be lucky enough to not have to worry about/deal with any hardware removal as my OS used a bio-absorbable screw and bio-absorbable anchors. :)  It's kind of strange to think of the screw and anchors in there dissolving, but no more strange than thinking about the fact that I have a cadaver's ligament in my knee now. :P  Also, I agree with your statement about how frustrating it can be to have to rely on other people to do things for you.  Over time I have found myself becoming very creative on figuring out how to do more things for myself, but still find that there are a number of things that I still have to rely on others to do for me.  I hope that things go well for you.  Keep me updated on how you are doing.  Take care.

Claire - I'm sorry to hear that your PT appointment had to be cancelled! :(  I hope that the rest of your day has been gonig better. :)  I'm going to send you an email shortly. ;D  Please let me know how things are going for you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 21, 2007, 03:31:41 PM
hi heather,i'm so sorry to hear how much pain you are in at the moment! i really hope the OS can give you some helpful suggestions tomorrow and you can find something to ease the burning.i'll look forward to etting your e.mail.take care,claire
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 21, 2007, 04:17:58 PM
Claire -

Thank you for the kind words! :)  I am still in the process of typing your email.  There were some glitches and I've explained it in the email.  Anyways . . . it should be going through cyberspace shortly. :P  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 22, 2007, 08:03:47 PM
HI HEATHER! i guess its about 4pm now were you are! i'm abit concerned how you are?! please let me know how it went at the OS appointment today!
i've been wondering how you got on!! please let me know!!
THINKING OF YOU! TAKE CARE! CLAIRE X
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 22, 2007, 10:59:05 PM
LighthouseFan,

it is about 6:30pm where I am at and I did not go to therapy. The last couple of days have been uncomfortable, I have been sick (stomach) but enough to aggravate everything else. Have had problems keeping food down and just feeling lousy.

Here is a brief rundown of my history involves 7 arthroscopic procedures in my right (as of 1-2006). All of them have involved tears and some other nuances. Though one did involve partial tears of my ACL. They have never been too bad. The downside is that cartilage in the knee never really grows back. This past summer I blew out both knees and began a 5-6 week injections of Hyalgan in both knees. This was a compromise as the surgeon did not want to jump into surgery and wanted to see how this went. We did set a surgery date for September 19. This was to be the 8th attempt and in discussing what would be was simple do as much as needs to be done without causing any other problems.  The surgery went well and for a while therapy was going well and than seemed to level off. After a short time the knee gave out, although I had almost full ROM the knee would not carry my body. We tried a couple of custom braces and 1 big cortizone injection. Nothing helped and the joint got worse. The other contributing factor is that over the years I have developed osteoarthritis and this is slowly destroying the knee. March the 6th was the result was the 9th and final surgery (hopefully fro 8-10yrs) and this was the "hail mary". It was either going to be a success or failure. Time will tell but surgeons have said that the procedures could not have been any more textbook. This is 3 of the procedures that were done, "Right Distal Patellar Realignment and Right Knee Arthroscopy with Lateral Release" and a couple of other arthoscopic procedures to clean up the scarring. This is just the right one as I have already had 2 on my left. Left shoulder 5 times and some others. PT is twice a week and staples get pulled in about a week and some other sutures. I hope that this help with some of the discomfort. Swelling seems to be improving, at times. I am learning to get around but not much can be done. It has become more of a mental battle than anything else. As for the screws that are permanent and there is a small chance that I may have limits of movement but again time will tell for this. Both of knees have alot of little scars, but not now  :o. I do not care and most of the scars are pretty hard to see, but if you look closely they are plain as day.

Other than that, I am feeling a little better today, but the dinner rolls around I am pretty tired and have to muster the energy to just shower and lay back. That alone takes about 45 minutes and after that I am absolutely exhausted. Enough from me, I am hopng yours days are getting better and some small baby steps of improvement are evident. Take care and will chat tomorrow.

Sterns ::)

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 23, 2007, 06:02:48 PM
Heather....
How are you? I havent heard from you in awhile. Hope everything is going ok. Let me know.

DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 23, 2007, 06:43:47 PM
hi heather!
how are you today! i hope you managed to get some sleep last night and the tablets have not made you feel so bad today.
please keep me posted on how your'e getting on,
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 23, 2007, 08:32:13 PM
LighthouseFan,

I hope that today bring brings you a smile and some improvement on all levels. I do have to say that I have actually had a decent day and have been feeling pretty good. It may just be me, but if I think trying to cope with the pain may have had a small contribution to how I was feeling. I started to take the painkillers evry 4 or so hours (only have of the prescribed dose) and that seems to be keeping things at bay. I will have stay that I have started some of the h ome exercises, mostly minor stretched and I have been told that that I have to gently massage the area around the staples. That, I will say hurts and at times so bad I feel like I am going to be sick. But, I have been trying to mimick the motions of walking, with no weight, and that seems to help, in turns of keeping the muscles loose. It is funny, but some of these things are so small, but actually seem to help me learn how to cope. The one thing that I have to give in to, is the end of the day. I am really tired emotionally and physically. I have noticed that some of the swelling is disappearing, but I have a long way to go with that. I am seeing the OS on the 29th and hopefully the staples and sutchers will be removed and placed in a brace that I can use to relearn walking. Weight bearing is the one thing that I know will be a no-no :-\, but at least I am hoping to see a turn for the better.

Thats about it for now, please let me know how you are doing and hopefully a positive swing is occuring. I know that therapy can be hard, but working through it is only good. That I know and I will say that when I was in therapy after the surgery in September I would always joke with my therapist that I was there for her relief of tension. This was always good for a laugh, I needed it, but when push came to shove, some of the exercises that she did on me was something that was very hard to bear. We would joke that 2 or 3 times a week I was garunteed to shed a few tears, the pain was enormous.  :'(. It was no long after though that progress could be seen and I could start to push my progress.

Anyway, my thoughts are with you and I have to say that this bulletin board have been an interesting source of information and that it was a very positive outlet for me.

Sterns
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 23, 2007, 09:45:38 PM
hi heather! i sent you an e.mail earlier i hope you got it okay! (it may still be hovering around in cyber space somewhere!!  :P)
i really do hope you are okay,i may not be on line later to IM you (i'm going to have an early night!!) but will be around for the next hour or so!
its 9.45pm here!!
take care,hope to hear from you soon,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 27, 2007, 01:58:40 AM
MAJOR SETBACK!!!!

Sorry I have not posted for the last few days . . . I was admitted to the hospital! :( :'( 

To start from the beginning to catch everyone up on what's been happening. . . . Last Thursday, I had an OS appointment and the OS scheduled to do an MUA for Friday March 30.  I spoke with my OS about the burning pain I had been having and asked if there was a possibility it was RSD.  The OS said that he would not say necessarily that it was RSD because I had some symptoms of RSD, but not all symptoms of RSD (I hadn't even had the chance to tell OS all of the symptoms I had).  However, OS did say there was definitely some sort of nerve pain issue going on and so he prescribed Lyrica for me.  I asked OS what I should do if insurance company does not cover Lyrica or if the Lyrica does not work and he told me that his next step would be to refer me to a pain specialist.  I left that appointment rather upset.  I did not want to have an MUA and I wanted some more answers regarding the burning pain (and other related symptoms), but I was willing to follow my OS's orders and give the Lyrica a try.  On an up note, the OS had agreed to let me start doing strengthening exercises for my knee and to see if pool therapy would help.  Left doctor's office and went to pharmacy . . . good news :) my insurance covered the Lyrica with no questions asked!  So, Thursday night I took my first dose of the Lyrica.  A few hours later, I was so loopey that I thought I was drunk!  I couldn't type correctly on the computer and any time I turned my head it took a few seconds for what I was looking at to catch up with me (there was some sort of visual lag time).  I was still upset about not getting answers about the burning pain (no diagnosis and no idea what to expect) and becoming more upset about the MUA.  Tried to go to bed early, but could not sleep (upset and knee hurting really BAD).  Friday morning I woke up and took all my morning meds (Claritin, Naproxen, Lyrica, and Percocet) at about 7:30am before going to PT.  At PT (9am) I began to feel a little bit loopey (no where near as much as the night before), so I was telling my PT about the OS appointment and how the new med affected me the night before.  Shortly before 11am while still at PT, I began to feel really dizzy and like I might pass out.  My knee also started to burn more.  My PT had me lean back against a pillow and wedge (to support me), hooked me up to the blood pressure machine, put e-stim on my knee and ice on the part of knee that does not have burning pain, brought me a cold cloth for my head, and brought me some water to drink.  My blood pressure was a bit high and I was still dizzy and leg still had burning pain.  PT then asked if I had eaten anything that morning.  I told him "yes" that I eat something every morning when I take my meds.  PT decided to still have me eat something to see if that would help (he gave me some Cheez It crackers from his own stash of snacks).  Since I was still dizzy and hurting and PT would not let me drive myself home, he had me lie down in one of the therapy rooms with the lights off to see if that helped.  He hooked me up to the blood pressure machine again, put the TENS unit around the burning pain area on my leg (trying to get the other nerves to interrupt the pain signal), and put heat on my quad to help relax it.  I was still dizzy.  We called the pharmacist who then told us to call the OS.  OS was in surgery so they took a message.  In the meantime, I just kept getting dizzier and the burning pain became worse than it has ever been.  At that point it was decided I needed to go to the ER.  My PT called his boss to try to get permission to drive me to the hospital (but his boss told him it was not allowed due to possible legal issues).  We then realized that I would not be able to get in a car anyways because my leg was so hypersensitive and I could not bend my knee.  So . . . we called for an ambulance to take me to the ER.  While waiting for ambulance to arrive, I spoke with nurse at my OS office and nurse stated that she had spoken with the OS and they were calling to get me into a pain clinic as early as possible next week.

Once at the ER, the Dr. wanted to check to make sure it was not a blood clot.  As they were wheeling me from ER to the ultrasound room, we ran into my OS in the hallway so he asked them to stop so he could speak with me.  OS told me to stop taking Lyrica, wear my immobilizer, no weight bearing, no PT, no TENS unit, and that he would be going to talk to my ER Dr.  Good news was that there was no blood clot.  ER Dr. was going to release me to go home with a prescription for Vicodin.  I told the nurse that the meds they gave me in the ER had barely touched the burning pain.  I also told nurse that Percocet works better for me than Vicodin and that the Percocet had done nothing for the pain when I took it earlier this afternoon.  So, nurse went back to talk to the Dr. and then came back and said they would give me another dose of Dilaudin IV (unfortunately, the nurse had already removed my IV . . . it had taken them 3 tries to get the 1st IV in and now they had to get another IV started :().  As they were trying to get the second IV started, my dad came back to pick me up.  My dad then asked to speak with the Dr.  My dad then questioned the Dr. as to why they would be sending my home after the IV med was given because what would keep the pain down after that and prevent us from having to go back to ER later in the night.  The ER Dr. then agreed with my dad that it was probably best to admit me to the hospital to get the pain under control.  The ER Dr. had also been talking about RSD and asking me if I knew much about it.  He then went on to explain a bit about it and how my symptoms fit with it.  One of the best things the ER Dr. did for me, though, was to state (in front of my dad) that all of this was not in my head and that the pain is real.  Anyways . . . so then they admitted me to the orthopedic wing of the hospital and told me that my OS would see me the next day.

The hospital was giving me Morphine every 2 hours, Naproxen every 12 hours, and Percocet every 4 hours and these meds were barely doing anything to lessen the burning pain.  I only slept for 3 hours from midnight until 3am on Saturday because the pain was too bad! :'(  My OS saw me on Saturday and told me that I have Complex Regional Pain Syndrome (CRPS).  I asked the OS if I were to look up information on the internet for RSD if that would provide the same information/be the same thing.  My OS said that RSD is an older term and that what I have is really Complex Regional Pain Syndrome.  OS told me that he wanted me to go to the pain clinic in a neighboring state (about 30 minutes away) because he is not sure that pain services in our town would be familiar with what to do for someone with my condition.  My OS expressed how rare of a condition this is and that he has never had a patient of his develop the condition.  However, he stated that he has seen this condition before in patients with other doctors before.  OS stated that there is no way to know who will develop this condition and that if he had a crystal ball and would have known I would develop CRPS, he never would have done my surgery.  That gave me some clue as to how hard this recovery process would be if he was telling me that the CRPS is worse than letting my knee continue to dislocate an average of 3 times a week for the rest of my life!  My OS pointed out that this is a "MAJOR SETBACK".  He stated that everything with rehabbing my knee is now put on hold until after the CRPS diffculties are resolved.  OS stated that it can take weeks, months, or years to get things with the CRPS resolved! :(  OS also informed me that once my pain was under control, I did not need to stay at the hospital any longer because pain services (who I would not have been able to see unless I stayed in the hospital until Monday) would not be able to do much of anything for me other than what was already being done.  OS also changed some of my medications.  After seeing OS on Saturday, he added Oxycontin every 6 hours.  One of the nurses (actually an extern who will be finishing nursing school in May) heard me mention to my OS that I would like to know how to educate myself more on Complex Regional Pain Syndrome.  So, after the OS left, the nurse brought in some information he printed off the internet about complex regional pain syndrome so that I could learn more about the condition I was being diagnosed with.  I thought it was interesting that my OS was telling me there was a difference between CRPS and RSD, but the information the nurse provided to me stated that CRPS has many alternative names and RSD is one of them.  On Saturday, I asked my nurse to call the PT department in the hospital to ask if my PT or another PT I know from the PT center I was going to were working there over the weekend because if they were I would appreciate if they could stop by my room for a few minutes.  The nurse came back to tell me that the other PT (not my PT, but one that would talk to me while I was at PT center) was working and would come by later.  The PT came to visit and I asked him if he would take the TENS unit my PT had loaned to me and return it since I was not allowed to use it and would not be in PT for awhile.  He said he would put it on my PT's desk and have him stash it away so that it would definitely be there for me when I was able to return (he also said he hoped it would not have too much dust on it by then . . . in other words, he hoped I could come back soon).  I told him that I would have to call the PT center early Monday morning to cancel my appointments and he said that he would go into the computers that day and cancel my appointments for me.  I thanked him and told him that I would still be calling sometime on Monday because I wanted to get a chance to talk to my PT.  He told me he would look at my PT's schedule in the computer and come by later to tell me when it would be a good time to call so that my PT would not be rushed and could talk for a while.  I thanked him and told him to tell everyone in there that I said "Hi".  He did stop by later with what times would be good to call my PT.  Anyways . . . the pain did not get any better throughout Saturday or Saturday night.  However, I did get sleep finally because the OS had ordered a sleeping pill for me to take that night.

(To Be Continued . . . )
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 27, 2007, 02:01:06 AM
MAJOR SETBACK!!!! - PART II

Saw my OS again on Sunday . . . OS told me that I was on more pain medication than anyone else on the floor and that I was on more pain medication than people who get total knee replacements and total hip replacements.  OS acknowledged that CRPS is a very painful condition, but that he wanted me to get on less medication and to stop the morphine because I would not be able to take it once at home (it was through the IV).  OS said that it would not be good for me to be taking so much pain medication for any length of time because the medication would begin to work less and less over time.  OS said that I would not get better by staying in the hospital and that the best thing for me to do was to go home, take it easy (not do anything except rest leg and do NOTHING that caused pain), and to try to take less pain meds.  I explained that I don't want to be on the pain meds either, but that I do not know how else to deal with the pain.  OS said that I would not be able to be painfree and that I would have to learn to live with the "discomfort".  At that point I wanted to scream at the OS that it was not "discomfort", it was PAIN!!!  I think OS was just trying to downplay how bad it was (I think Doctors are trained to do this).  OS stated that his office is trying to get me into the pain clinic as soon as possible and that OS would make sure that I had plenty of pain meds when I go home, but that he wanted me to try to spread them out and try to take less of them.  OS reassured me that he is going to stick with me through all of this and that he recognizes that this is a hard thing to deal with.  OS also recommended seeing a psychiatrist to help me deal with all of the pain and the impact it has/will have on my life.  My mom was present while the OS saw me on this day and was asking a number of questions.  I was trying to ask questions and take all of this in, but couldn't stop myself from breaking down and crying in front of my OS.  :'(  Not sure what he thought of that.  I hated that I was crying so much, but it was all too overwhelming and scary for me!  My mom left a few minutes after the OS left (it was the second time she had been in to see me that day).  I spent most of the afternoon and evening crying uncontrollably.  The therapist (same one as the day before) from the PT center where I go stopped in to see me (he was working at the hospital PT department over the weekend).  As soon as he came in the room he said he was just stopping by to see how I was doing, but that he could already tell how I was doing.  He said that was the first time he had ever seen me really cry.  He had commented to me on Friday at PT that he has been so impressed by how well I handle the pain and everything at PT because I don't hit/kick them (PTs and assistants), I don't scream, and I don't just let myself fully cry (I cry, but it's just my eyes tearing up and I wipe my eyes).  He said he was sorry to see I wasn't doing well.  I briefly told him what was going on.  He told me that even though I won't be going to PT for awhile, he would like it if I would call in every so often to let them know how I'm doing.  I thought that was very nice of him to say.  Also, while I was crying (which was about 5 hours or so) a couple of different nurses (not ones assigned to my room) and other hospital staff stopped in to ask if I was okay, to try to make me feel better, and in some cases just to give me a hug.  I appreciate everything that they tried to do!  I was just so upset and scared!

Today I was still in as much pain as I had been since I got to the hospital.  While in the hospital my pain level never went below 8 1/2 out of 10 on the pain scale and most of the time it was close to 9 1/2 out of 10.  I saw my OS today and he said he was going to discharge me later today.  He said his office is working on getting me into the pain clinic, but that since the office was still closed (he saw me rather early this morning) he did not know the status of the referral, but would have his nurse call me with the appointment time.  I spoke with OS about his recommendation to speak with a psychiatrist and OS said he would put in an order for me to see the psychiatrist before I was discharged today.  OS gave me orders to wear an immobilizer and use my crutches (allowed to put some weight on leg, but only if this causes NO pain).  OS also increased the dosage of Neurontin for me.  I expressed to OS some of my concerns regarding CRPS and OS answered my questions, stated how rare this condition is, acknowledged how much pain I am in and how frightening the situation is, and encouraged me to remain positive and to only think/state positive things.  I am having a very tough time remaining positive right now and am just really scared by all of this.  I saw the psychiatrist today and he prescribed Cymbalta (anti-depressant that also helps in treating nerve pain) and told me that my GP can follow me on this medication so I do not need to keep seeing the psychiatrist.  The psychiatrist also encouraged me to find someone (pastor, counselor, doctor, etc) that I can talk with when I'm feeling really down about all of this.  I'm not sure who I have around here (physically nearby) that I would talk to, but promised that I would find someone to talk to about this if needed.  I spoke with my PT to explain that the doctor says I have CRPS and that I'm not allowed to do PT or basically anything at all.  I asked PT if there was any way that I could make sure that when I return to PT that I get to work with him as my PT.  He said that would not be a problem and he would like to continue working with me.  He also asked me to call him after my appointment with the pain clinic on Wednesday to let him know how it goes.  He said that he would like it if I would call in periodically to let him know how I'm doing and what's going on for me.  I also got a phone call from my best friends in California.  I had not been able to talk to them while in the hospital because I did not have a calling card to make long distance calls on the room phone and am not allowed to use cellphone in the hospital.  My mom called them over the weekend to let them know I was in the hospital and gave them the phone number for my room.  It was very helpful to be able to talk to them and let out some of my feelings.  However, while I was on the phone with them, my father came in the room so I was not able to really vent my feelings (my dad usually tries to downplay my feelings, so I try not to cry in front of him) so said I would call them after I was out of the hospital.  I was discharged from the hospital around 2:15pm today and my dad picked me up to take me to parents' house (I'm staying here for at least the next week or so until we figure out more about what is going to happen with the CRPS or until the pain significantly decreases).  As I was being wheeled out of the hospital, we passed another therapist from the PT center where I go.  She stopped to say "Hi' and see how I was doing.  She said that the other therapist who I had seen over the weekend had told all of them in the PT center that he had spoken with me and what was going on for me.  She told me that they were concerned and asked me to keep them updated on how I'm doing.  On the way home we had to drop off 5 prescriptions to get filled.  Then we got milkshakes and went home.  My dad went in later this evening to pick up the prescriptions.  I'm on a lot of meds for the CRPS now. . . Percocet, Oxycontin, Neurontin, Cymbalta, Ambien, and Naproxen.  I also already take Claritin, a multivitamin, and a nasal spray.  I'm also using hydrocortisone cream and benadryl as needed for itchiness (they think some of the itchiness may be due to all of the other meds).  My dad was joking around tonight that he hoped our house didn't get raided tonight because it looks like a druggie lives here. :P  I know he was just trying to be funny, but I hate taking all of these meds!  I am so tired/drowsy/dizzy, etc from all of these meds that I feel like I'm only half here.  :-\  But if that's what it takes to attempt to keep the pain in check and settle things down with the CRPS then I guess that's what I have to do.

So . . . at this point, everything with rehabbing my knee has been put on hold until we can get the CRPS under control.  I am back to having to keep my leg straight/immobilized, no PT, no weight bearing (can do so if NO PAIN, but since I don't foresee that happening as pain is still crazy out of control it will be no weight bearning for awhile), and on lots of meds.  MUA has been cancelled until CRPS is under control.  This is a MAJOR SETBACK!  Once CRPS is under control, OS will do MUA and I will get started back into PT (but will be starting back at the beginning or at least close to the beginning since I will be immobilized for quite a while).  OS has mentioned the possibility of casting my leg instead of having me use immobilizer, but will not do so until after I see pain clinic docs (because they will want to be able to actually see my leg).  I go to pain clinic on Wednesday and then see my OS again next Monday.  When I asked my OS why he wanted me to go to pain clinic in nearby state and not docs in our own town, he told me that it was because the ones in our town have probably not treated someone with CRPS and the ones in the nearby town may be able to do a nerve block on me when I see them this week.  Apparently very few people in our town are familiar with CRPS (or even RSD), as the nurse secretary for the orthopedic floor printed a packet of information off the internet when she saw the diagnosis on my admit paperwork so that she could give it to my nurses for the first shift when I was admitted.  Then each nurse passed it on to the next nurse to read during shift change.  It's nice to know that they took the time to do so, but it's also a bit scary/lonely feeling to know that I have a condition that is apparently so rare!  At this point, I'm just trying to figure out what all of this means for me as far as treatment and coming to terms with how this may affect my life and that it may be a LONG, LONG time before I'm able to return to work!  I'm really scared about all of this!!!!  If anyone has any tips, info, advice, or words of encouragement I would really appreciate it!  Thank you.  Sorry this has become such a book of a post.  A lot has happened in the past few days!

Please take care and know that I'm keeping you in my thoughts and prayers. 

Heather

PS - Claire, I got your emails and will respond to them shortly.  I will not be able to IM you while I'm at my parents' house because they do not have any IM programs on their computer.  Sorry.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 27, 2007, 04:19:47 AM
Wow, Heather, I dont know what to say, except to tell you that I am here for you. If you need to talk, vent, whatever, just message me anytime. Things WILL get better. Have faith. Remember, God doesnt give us anything we cant handle. I know thats hard to concentrate on at this point, but just try and focus on positive things.Listen to lots of your favorite music...that always helps. I will keep you in my thoughts and prayers.Hope to hear back from you real soon.

Lots and lots of hugs....DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 27, 2007, 10:43:13 AM
hi heather,
it was great to hear form you again,but i am so so sorry to hear what a hard time you are having,anything i could say does not seem enough.
please remember i'm here for you to chat to,vent to,cry with etc,and always will be.
take care of yourself and rest,
i'll send you an e.mail in response to yours very shortly.
always keeping you in my thoughts and prayers.
love from,claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 27, 2007, 09:58:36 PM
I am so sorry to hear about what you have been going through. I am utterly speechless, but I want you to know that my thoughts and prayers are with you. Please take care and let everyone do for you. I know it is hard to remain focused on a positive route,  but maintaining your strength is very important. I can only say to be very careful with your meds. Take care and will chat later.

Saul (sterns)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 27, 2007, 10:17:39 PM
Hello Everyone -

Today has continued to be a rough time for me.  The meds do not seem to be having much of an effect (symptoms are pretty much the same as they were yesterday) except that they (meds) make me very drowsy.  I can basically fall asleep anywhere . . . I was sitting at the dining room table with my leg propped up on a chair next to me a little before lunch time watching tv and next thing I know it was 1/2 hour later (I had apparently fallen asleep at the table).  I have also realized that it is not good to wake up early (had to go to the bathroom) when taking a sleeping pill . . . I remember saying something to my mom on my way to the bathroom this morning, but have absolutely no clue what I said to her . . . and I could not walk straight (not good to be stumbling around when on crutches).  I got back to my room safely and went back to sleep.  Hopefully, having to wake up before the sleeping pill wears off will not become a regular occurrance.  I've basically just been spending the day resting/taking it easy, as OS's first order on my discharge paperwork is for me to rest.  OS had told me one day when he saw me in the hospital that I am basically supposed to lie around, asking nothing of my knee and keeping knee supported at all times.  I'm just trying not to get bored.  I've spent the day watching tv, reading, paying some bills, and now on the computer for a little while (can't be on computer for long because it is not the best position for me to be sitting and trying to support my knee . . . after a short while the knee pain becomes EXTRA excruciating).  I'm really scared about what having CRPS means in terms of treatment and how it will affect my life! :'( :-\  Really not sure what to expect, except that OS points out that it is a "MAJOR SETBACK".  I'm hoping to get some answers and some pain relief when I see the doctor at the pain clinic tomorrow afternoon.  If anyone has any info/advice/experience/etc. with CRPS or something similar please let me know.  Thank you to anyone taking the time to read this.

Donna - Thanks for the support and encouragement!  I really appreciate it! :)  I am finding it really difficult to focus on the positive at this time . . . I think I'm too afraid, upset, and confused right not to concentrate on anything positive!  However, I am trying to remind myself that God does not give us more than we can bear, but right now I feel like he thinks I am stronger than I am. :(  Listen to favorite music is a good tip . . . I'm especially going to repeatedly listen to the LoneStar song "Mountains" as I find it encouraging (and hope that it will help me deal with this a bit better).  Thank you for everything (including the offer to let me vent to you)!  Take care.

Claire - Thank you for the kind words and support!  I really appreciate it! :)  Thank you for the offer to chat, vent, cry with you!  I got your email and will respond to it shortly.  I won't be able to IM with you for a while (at least not this week) because I'm staying at my parents' house and they do not have an IM program on their computer, so we'll just have to communicate on KGs and through email.  Thanks so much for everything!  Take care.

Sterns - Thank you for the support, thoughts, and prayers!  It is greatly appreciated! :)  I am taking it easy and trying to let others help me out.  I'm staying at my parents' house because they decided it would be better for me to do so, that way I wouldn't have to do so much for myself.  In fact . . . my dad arranged for my aunt (who lives next door to my parents) to come over each day to get me something for lunch when she comes home over her lunch break so that I am not trying to stand up and struggle with getting around the house to get something to eat.  I think it is very nice of her to do so and she sat down with me for a few minutes so I had a bit of company. :)  As for being careful with my meds . . . I've got one pharmacist who fills all of my prescriptions (that way he knows everything I'm on and can check to make sure they won't interact with each other) and I make sure that any doctor I see knows all of the meds that I'm on (so there shouldn't be any confusion regarding meds and if they'll interact with each other).  I've made a schedule (written it down) of what time I am supposed to take each medication.  Also, I'm not allowed to drive; which is good because all of these meds make me extremely drowsy/dizzy, etc and I have trouble seeing straight and walking straight (not good combo when on crutches).  Again . . . thank you for the support!  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 27, 2007, 10:36:53 PM
hi heather!
im sorry to hear that you are have had this setback and hope things are soon controlled so you can get back to your rehabbing.
i can more then understand how trying to stay positive is difficult,i would feel the same.
its good your family are doing stuff for you and i hope they can continue to.
the nurses and PT's sound as though they have been really nice aswell.
i will reply to your e.mail tomorrow as i have not received it yet, i am going to go to bed shortly.(mikes on earlys so i will be woken up at 5am!)
i will be here for you to e.mail and will regulary check in on the site to see if you have posted,it will be good to IM you again once you return home!
i've missed our "cyber" chats!!
take care and your'e in my thoughts and prayers as always,
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on March 28, 2007, 11:53:09 PM
Hey Heather...Just checking in to see how today went. Hope you are feeling a bit better. Let me know....DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 29, 2007, 12:01:25 AM
hi heather! i've sent you an e.mail earlier! i remember you saying you may reply later in the day your time so i will probably hear from you now tomorrow!
i hope the appointment in hagerstown went ok and you got some answers to your questions.
i also hope your meds are starting to work and you soon get some relief from them,
take care,
thinking of you,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 29, 2007, 05:42:42 AM
Donna and Claire - Thank you for the encouragement and support!  It is greatly appreciated! :) 

The appointment with the doctor at the pain clinic went alright today . . . the doctor was nice enough and seemed to be very knowledgeable about my condition.  The doctor said that it could be one of two things: Complex Regional Pain Syndrome (CRPS) or it could be problems with the peroneal nerve running near the fibular head.  However, based on his evaluation, he diagnosed it as CRPS and is treating it as such.  He has changed my medications (again . . . my body isn't going to know what it's supposed to do with all of these med changes).  Although I'm still on a boatload of meds.  He took me off of the Percocet and Oxycontin, but put me on Methadone instead.  He also gave me samples of Lidoderm patches to see if they work and gave me a prescription for 120 of them to get filled, if the samples work for me.  He also changed the dosages/dosing schedule for the Neurontin.  He has me increasing my Neurontin dosage by 1 pill every 3 days until I will eventually get to the point that I will be taking 2700mg of Neurontin each day.  So at this point I am on the following medications each day: Naproxen, Neurontin, Methodone, Cymbalta, Ambien, Lidoderm patches, Claritin, and a multivitamin.  I think I listed all of them?  I feel a bit like a walking pharmacy. ::)  I'm still having problems with being very drowsy, dizzy, and loopey from all of the meds.  My dad was making fun of me today because I was falling asleep in the doctor's office (I made fun of him too because he was falling asleep also . . . and I told him at least I had an excuse for falling asleep. :P).  I told my dad that I've been having trouble with dozing off frequently throughout the day . . . I'll "blink" and next thing I know it's like 5 minutes later and I realize that I apparently fell asleep (and I usually have very strange "mini-dreams" during that time).  Not sure what that's about?

In addition to changing the medications, the doctor has told me that treatment will involve having "sympathetic nerve block" injections in my spine 3 times a week for the next 3 weeks (could be for longer than that depending on my response to the treatment).  He says I will have to go to physical therapy right after getting the spinal injections (seriously I mean RIGHT AFTER . . . he says that physical therapy should begin 30 minutes after the injection is given and must end within 2 hours after the injection is given).  The doctor says that physical therapy is to be AGGRESSIVE during that time frame also.  The pain clinic is approximately 30 minutes from my town (maybe 45 minutes if you run into traffic).  The doctor at the pain clinic initially wanted me to go to a specific therapy center in Hagerstown (same town as pain clinic), but he agreed to let me try to do physical therapy with my current PT.  The doctor said that I could work with my PT as long as the PT knows what he is doing and can arrange for me to have AGGRESSIVE physical therapy within the appropriate time constraints after I receive each injection.  However, the doctor said that if we try it and realize the drive time between my town and the pain clinic is too great or if the doctor feels that my PT does not know enough about what to do for my condition and following the nerve block injections; then the doctor will tell me I need to arrange for receive PT at the center in Hagerstown instead.  My dad thinks that I should just go ahead and do the physical therapy at the center in Hagerstown like the doctor originally said, but I feel more comfortable with the PT I have been working with up to this point.  I feel that the PT I have been working with is very competent at what he does, is very dedicated to helping me rehab my knee and get back to life, and is willing to ask questions and learn specifically what he should be doing to treat me appropriately.  I'm scared enough ("terrified" or "petrified" might be more accurate words) about getting the spinal injections anyways . . . I don't want to also be dealing with having AGGRESSIVE physical therapy at a place that I'm not familiar with and from people I don't know.  At least if I do it my way . . . I'll still be terriified about the injection, but will be comfortable with the person who will be doing my AGGRESSIVE therapy.  Does that make sense to anyone else?  I know that it didn't really make sense to my dad, but that's just how I feel.  I figure also . . . the doctor was willing to give it a try, so it's worth it to try.  On the drive home from the appointment today, I called my PT (he had requested that, even though I'm no longer officially in PT, I call after the appointment to let him know how it went) and explained the diagnosis and treatment plan.  I asked PT if he was willing to try to do my physical therapy even though it had to be done in such a strct time frame.  He said, "You know me . . . I'm always up for being aggressive in therapy". :P  Then we started trying to schedule.  He had to cut the conversation a bit short because he had a doctor's appointment to go to, so he switched the call over to a physical therapy assistant that works with him (she has assisted with my physical therapy a fair bit and is very nice and dedicated as well).  She worked on scheduling my appointments and putting me in the schedule for next week while I was on the phone.  Then she just asked me to tell her when I needed to be put in the schedule for the remainder of the 3 weeks that I will be receiving the spinal injections so she could write them down quickly and she would put me in the schedule later after we were off the phone.  At this point, as far as I know, everything is scheduled so that I can go straight from my appointments in Hagerstown at the pain clinic where I'll receive the sympathetic nerve block spinal injections to physical therapy center in my town to receive aggressive physical therapy within the 2 hour time allotment after the injections are given.  It's so nice to know that my PT is willing to work with me on this and that the PT center/people I have been dealing with are willing to re-arrange schedules so that I can receive my AGGRESSIVE PT within the very strict time allotment.  I'm still VERY FRIGHTENED  :o :( :'( about these injections, but am comforted to know that there are so many caring people who are willing to work with me to get me through this. :)

I still have a lot of questions that did not get answered today, but some of the are ones that will just take time to get answers.  I am VERY UPSET, FRIGHTENED, SCARED, WORRIED, CONFUSED, etc; but at least now I have a name for my condition and we have some direction for something to try to treat it!  I have lots more info about things that happened today (at doctor's appointment, with family, conversation with co-worker/friend, etc), but will have to wait until tomorrow to post that information.  I am quite literally falling asleep while I sit here trying to type.  It's a really weird feeling.  I feel like I'm falling asleep, but am at the same time completely aware of my fingers typing on the keyboard.  Weird, huh?  Also, my legs feel like they are weightless, like they are floating or somehow hovering above the chair.  These are just some of the strange feelings I get from all of the meds I'm on.  These side effects seem to be worse tonight than they have been recently.  I wonder if it's from the Methodone or from stopping the Percocet and Oxycontin or from increasing the Neurontin. ???  RIght now, if I were to stand up (which I'm not even sure that I could manage the simple act of standing up at the moment), I'm certain I would fall over immediately! :P  I can't even get my eyes to focus when I'm trying to read something.  If I really want to read something, I have to close one eye or the other because I absolutely cannot get my eyes to work together to look at something.  This past week has definitely been the worst time that I have ever had with feeling dizzy, drowsy, and out of it!  And it has only gotten worse as the week as progressed!!! And according to the doctor today, I can expect that it's going to get worse, A LOT wose over the next few days!!!! :-\ :( :'(

Anyways . . . I should really get going as it is now taking me over 5 mnutes just to type a short sentence, as I can't see straight and am making lots of typing errors.  Also, this has become rather rambling.  Please forgive me if this post does not make sense.  I hope that everyone is having a good day.  I will post more tomorrow.  I'm off to go take my last dose of meds for the day and to get some sleep.  Hopefully, I won't be quite so out of it tomorrow when I'm trying to post a message on here.  Goodnight/Good morning.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 29, 2007, 09:33:20 AM
hi heather,
i'm glad you got some answers yesterday but am sorry that you are going to have to go through having the injections and taking more pain meds.
i hope you soon get some relief from the pain and stop feeling so dizzy,i think you are doing really well and your posts do make sense!!
i'm so happy that you can do your PT sessions with jamie again and can fully understand why you want to go to him for it and not to someone you don't know.
i know how supportive he is to you aswell as being a very dedicated PT,i'm sure if there is anything he is not sure about he will do everything he can to learn about it and to treat you properly.
at least on your "off days" he will be there to talk to as he has in the past! from what you have said previously he does sound very knowledgable though and thought this may have been the condition you had before the OS did.
i wish you lots of luck and am gald this have been diagnosed early and hope you are soon in remission.
take care,
claire
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 29, 2007, 03:24:51 PM
Good morning,

I am glad to see some forward progress. My heart goes out to you, only because I could not begin to imagine how I or my family could even begin to handle what you have had to endure. I will keep you in my thoughts. I am going back to surgeon this afternoon to have all of my staples removed and whatever else they want to do. So I will let you know later. Also, while reading the posting you had mentioned Hagerstown... Maryland? If so than I am about 2 hours from you !!

Sterns
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 30, 2007, 01:17:17 AM
Hello Everyone -

I hope you are all having a good day.  My day has been rather strange as all of the drowsiness, dizziness, trouble focusing my eyes, etc. that I was experiencing last night has continued today and has at times gotten even worse.  The doctor at the pain clinic has said that the next few days will be A LOT WORSE for me (pain and side effects from meds) while my body adjusts to the medication changes.  So far . . . I'd have to agree with the doctor!  Not only have the side effects from the meds gotten significantly worse, but the pain has worsened as well.  So has the swelling in my lower leg, ankle, and foot.  It is huge!  I've been trying to keep it elevated, but it just seems to be getting bigger all the time.  I've also been trying to do some ankle pumps, but it is very painful to do the ankle pumps.  However, I still try to do some of them.  I'm hoping that it soon stops.  I don't know what else to do for it except to elevate it and do some ankle pumps.  I can't ice, as it makes the nerve pain even worse, and I am already taking an anti-inflammatory.  Just don't know what else I can do.  If it continues like this, I will ask the doctor at the pain clinic when I go in for my spinal injection on Monday.

Some other updates from yesterday that I was too loopey to include in yesterday's post . . . my dad seems to be extra supportive of me and appears to be getting a better realization of how painful this condition is and how tough it is to deal with (no cure and that the best to hope for is remission).  Throughout my life, my dad has picked on my telling me that I am a wimp and can't handle pain.  For the last few weeks he has been telling me that the pain can't be that bad, that I'm exaggerating, and that it's in my head.  That's part of the reason that I think it was good for my dad to be in the room when the ER doctor told me "It's not in your head, it's real" and gave a name for it.  I also think it has been good that my dad took me to the appointment at the pain clinic and spoke with my doctor there also.  Last night my dad told me that I have not been complaining about the pain much considering what I am going through.  It felt good to have my dad validate what I was feeling, that it is real, and that I'm handling the pain pretty well.  It just felt nice and like an extra show of support.     . . .  Also, last night I spoke with a co-worker who I have become friends with and she was telling me about a conversation she had with another co-worker and one of our supervisors.  I had talked with my friend while I was in the hospital and told her that I would be going to the pain clinic yesterday and that I was nervous and scared about everything I was going through.  I had also spoken with her about difficulties I was having with my family worrying about things and repeatedly saying that they didn't think I was going to have a job to go back to when this was all said and done.  My friend had kept re-assuring me that I would have a job to come back to, that my boss had told everyone that I did not need to worry about my job, and that no one else is even allowed to use my desk.  I had also spoken with my friend about the uncertainty with when I would be able to return to work (since my OS had told me that it can take weeks, months, or even years for CRPS to resolve and I'm not allowed to do anything further about rehabbing my knee until the CRPS is resolved).  I had told my friend that I did not mind if she told people at work that I had been in the hospital, that I was diagnosed with CRPS, and that I had to go to the pain clinic; but that I didn't want her to talk with them about the uncertainty regarding how long it may take for this to be resolved so I could go back to work.  I told her that I wanted to be the one to talk with my supervisor and the boss about the uncertainty regarding when I could hope to return to work after I had some more information from the doctor at the pain clinic.  She said that was fine and she understood.  (Wow, that was a long pre-explanation for background on the rest of this!) :P  Anyways . . . my friend told me yesterday that she had been speaking with one of our co-workers (who shares the same office with us) and shared my concerns about being diagnosed with CRPS and what I may be facing to deal with it and that my parents kept expressing their worries to me that I may not have a job to go back to and how that just increases my worries and how upset I am by all of this.  My friend said that she and our co-worker then went into our supervisors office and shut the door to speak with the supervisor about what was going on for me.  My friend said the supervisor told her that I don't need to worry about my job and that she (supervisor) wanted to call my mom and tell her that so my parents would stop telling me that I wouldn't have a job to come back to.  My friend also said that the supervisor told me she will help me through this since she knows what I'm headed for (supervisor has dealt with chronic back pain) and that she wants to talk with me.  My friend told me to call her soon or at least before I have my injection on Monday.  My friend also told me that she (friend) and co-worker are supportive of me and if they can't be there for me physically, they will be there for me emotionally.  It was very nice to know that my co-workers and supervisor are being so supportive of me! :)  I spoke with my supervisor today and she was asking me about how I'm doing and what treatment the doctor at the pain clinic is planning on doing.  My supervisor also provided me with the address and phone number for the Pain Clinic at Johns Hopkins Hospital in Baltimore (that's where she goes for treatment) in case the spinal injections don't work for me and the pain clinic seems to run out of treatment options.  She also reminded me that she is there for me and requested that I keep her updated on what is going on with me.  I then spoke with my boss about my situation, that I've been diagnosed with CRPS, and about the spinal injections.  I explained to my boss that I don't know when I will be able to return to work because we have to see if these spinal injections work to put the CRPS into remission so that I can get back to rehabbing my knee.  My boss reassured me that I do not need to worry about my job, that they want me back, and he will re-hire me or whatever needs to be done so that I can return to work there. I told my boss that I will keep him updated as to how I'm doing and if we have any idea when I may be able to return.  It was good to speak with my supervisor and my boss to hear the support from them. :)

Claire and Sterns - Thank you for the support and encouragement! :)  I look forward to hearing more from both of you.  Also, Sterns, yes that was "Hagerstown, Maryland".  I live about 30 minutes from there, in Pennsylavnia.  Where are you from?  Anyways . . . I've got to get going.  Dinner is ready.  I hope you both are doing well.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 30, 2007, 05:50:40 AM
Heather,

How ironic, a bulletin board from the UK and you are 2-3 hours from. I am in Gaithersburg, Maryland  :o. I am glad to read to good news for you. I cannot remember if I had said something to yo or someone else about other people to contact that may help in diagnosis, treatment and recovery. Here is why, a few years ago I had severely injured my shoulder. really, really bad. From the time of the original surgery I had to undergo 3 more at an average of 1 per year. Finally, it became so bad that I had to look desperately for someone who can help me. The pain was horrible and very similar to what you are having to deal with now. A friend of mine had told to contact 2 places. The first was Johns Hopkins and the second was the Mayo Clinic in New York. I did and ended up talking with some people at Hopkins. They did say that are a couple of people who just may be able to help me. They had put in contact with 2 people, one in Atlanta and the other in DC. I opted for DC, it is a lot closer than Atlanta. After meeting with him a few times and trying various treatments, surgery was scheduled. He had to do a lot of stuff to the shoulder and the best he promise was about 60% use of my arm, based on what he had to do. That is another story !!! I was ok with that and that he said that with therapy and exercise there was a chance to better the odds. Well, it has a few years and the should is great, I have about 75-80% of use and have learned how to adapt to daily life. The point is talk with Hopkins, but not just the pain people, find out who there is best qualified to talk or examine you. It is the best thing you can do, at least in my opinion and if the diagnosis is still somewhat questionable than I would look into this approach. It cannot hurt  ::) Haha  ::) Personally, I would exhaust every avenue I could. But at least you may be on the right path. I do not know if it proper, but I can recommend a doctor or two hat I know who maybe able to see and discuss your case. That is up to you and if interested send me an email and I can forwrd the info. Again, just another step in trying to get back normal.

Today, I saw my OS and he was very pleased with how everything was healing. The staple were removed and he took a few xrays to make sure what he had done is still where and how it should be. That was ok and he answered many questions regarding the pain and swelling I still have as well as the pin/needles sensation around the knee. He said that this was normal and that over time all of this will gradually disappear. But he did stress that it will take some time and not to expect a drastic change for a few weeks. Tomorrow I will get fitted for my brace and will be able to toss my immobilizer. I cannot wait for that. What he now wants is to come back in 3 weeks with as much mobility in me knee as possible. I still have to sty on crutches and cannot walk yet, but if this is successful than in the 4th week I may be able to start learning how to walk again. Still with crutches, but maybe I can start to drive again.

The down side is that he said to keep doing what I am now. NOTHING . Keep my leg elevated, use ice, take the pain meds before it hurts and not after the apin starts. He also that I can reove the brace for short periods but to keep it on when I sleep. I told him that I do that now, but I am extremely careful of what I do, because I get a little paranoid when the immobilizer is not on. So, I have another 4 weeks before I can get a glimpse of what life is. I guess I am ok with this, he did say that recovery would 8 - 10 weeks before I would have the ability of 2 legs.
Anyway, it is about 1 am and I need to try and get some sleep. I woke up earlier only because when I got back from the doctor's appt, I had to take a pain pill as he was moving, poking and proding my knee and it hurt. PLus doing all that so-called walking on crutches made me tired and when I get like that, with the pain, everything seems hurt 10 times as bad.

Keep up the good sides, but more importantly let me know what you think about the suggestions of people and will talk to you later in the day !!

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 30, 2007, 04:54:07 PM
Heather,

Just a quick update. My neighbor had taken me back to the orthopedist this morning to get fitted into my brace. When I was there yesterday I was told that they did not have the right one so I talked to the person who handles them. He was gracious enough to meet me at the office and strap me up. Not to sound terrible , but it is kinda like a Forest Gump brace. This will take some getting used to and this is really restrictive. It will take some getting used to. The hinges are at the big 0 degrees and in three weeks I hope to get to 60-90 degrees  ::). All I know for now is that just making the trip to the doc has and coming home with this brace has completely zapped my energy and has raised the bar of uncomfort to a new level. I know it is time for me to stop what I am doing and make myself relax and find a way to get and stay comfortable.

Take care and I will check in soon !

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on March 31, 2007, 12:42:07 AM
Saul -

I want to apologize in advance if parts of this post get confusing or don't make much sense, as I am still dealing with the dizziness, loopiness, etc that has been going on for the last week and it has just gotten worse each day! :(  I will do my best to focus on this and to not let my mind wander too far from what I am trying to say.  Thank you for the reply and suggestions! :)  I really appreciate it! ;D  I will contact you for the names of some people at Johns Hopkins to speak with.  I think I'm going to wait and see how I respond to these injections, but would like to have the contact information on hand so that I can contact them if I don't respond appropriately to the injections.  I think that I have a good doctor at the pain clinic in Hagerstown and from what he said it sounds like he has some other treatment ideas to use if these injections do not work appropriately.  However, I would like to have the contact information so that I could obtain a second opinion if these injections do not work.  Just an idea. Thank you for the suggestion and offer to provide names of people to contact at Johns Hopkins! :)

I agree with you . . . it is rather strange that we're on a bulletin board from the UK and find each other living only 2 or 3 hours -apart! :P :)  I'm glad to hear that your OS is pleased with how well everything is healing!  :)  Please forgive me for asking this if you have already told me the answer to this before, but in my drug-induced loopiness, I can't rememher . . . what surgery did you have done?  I bet it feels great to have the staples out (although the process of getting them out probably did not feel too good).  Do you know the name of the brace you will be getting/already have?  Is it the DonJoy IROM brace?  That seems to be a very popular Post-Op brace.  I know some other people who have the brace and if that's the one that you have, I may be able to give you some tips for getting more comfortable in it (based on talks with a friend who had it).  I didn't have a brace to wear after his surgery.  My OS put me in an immobilizer for approximately 4 weeks after the surgery and then told me that I did not have to wear the immobilizer (other than outside on inclement weather days), but had to remain NWB on crutches for a few more weeks.  I had been trying to wean myself off of the crutches but am back using the crutches and wearing the immobilizer since OS ordered me to during hospital stay due to CRPS.  I had been able to drive for a few weeks (since op was on my left leg and I could borrow my mom's car which is an automatic), but I'm so loopey with all of the meds that I'm on there is no way I could tryh to drive now! :P

I hope that you have been able to find a way to get comfortable and relax! :)  I can most definitely understand what you mean about how even doing what previously (prior to surgery/injury) would have seemed like a small trip/errand has now become a big deal and can completely wipe you out.  Since my injury back on Oct. 16, 2006, I have found that even the smallest of trips/errands take extraordinary amounts of energy to accomplish.  There are times when my mom and I are running errands on a Saturday and I just have to sit in the car and rest instead of going into the next couple of places with her (and even with doing that, I'm exhausted by the time we get home and I just have to rest when we get home.  My mom just doesn't understand this (she's like . . . "Well you just sat in the car for half the time anyways . . . why do you need to rest now that we're home?")  I don't think people can understand how tiring it is and how much effort has to be put into anything that you do when you have knee problems (and especially when recovering from knee surgery)!

Please take care and let me know how things are going for you.  I am keeping you in my thoughts and prayers.

Heather

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 31, 2007, 12:14:46 PM
hi heather!
how are you feeling today!
i have received your e.mail and will respond to you shortly.
keep me posted how your'e getting on,
thinking of you.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on March 31, 2007, 05:13:07 PM
Heather,

Basically, I had a newer version of the Fulkerson or TTT and this is 3 of the procedures that were done, "Right Distal Patellar Realignment and Right Knee Arthroscopy with Lateral Release" and a couple of other arthoscopic procedures to clean up the scarring. I am glad to hear that about the positive approaches for you and can only hope for a positive outcome. No apologies are needed! I had the staples removed on Thursday and it was not that bad, it felt like little pinches and tugs. But I told the nurse who removed them that if I feel uncomfortable than she must numb the area before any more. I tried to tell her that I have had enough pain already and I do not think I am ready for any more. They all came out and I kinda just layed on back for a few minutes. The brace I required could not be found in the office so I had to go home with the same immobilizer. I spoke to the person in charge in another office and told me that who ever was looking should have opened their eyes. My neighbor took me back the following morning and the guy very graciously met me to do the fitting. The brace I was put in makes me feel like FOREST GUMP  ::) Really !  the brace I was fitted with is called "Bledsoe Extender Knee Brace" and this is going to take some getting used to. Right now the hinges are locked in a 0 degrees. And let me tell you, when he had put this erector set together and placed it on my log, when that dial snapped in at 0, a few tears appeared. That was the straightest the knee has been. I take it off some times during the day, but leave it on at night. It is a little better than the immobilizer. The goal is to get 45 - 60 degrees ROM in 3 weeks and by the 4th week ... weight baring, some walking and maybe driving. PT goes into full swing this coming week and I cannot say how much I am dredding this. I know what is involved and what will take place, but I will have to work on the mental part later. Other than that I have also been told to keep up what I am doing...NOTHING. I usually have no energy to even want to be dragged around on errands. I hate the backseat and there is no way to get comfortable and besides just getting in and THAN getting out. UGH !!!!!

But I am starting to get a little tired, still trying to sleep with this contraption and is getting hard to focus. You may be able to relate !!! I will catch you later and TAKE CARE !!!

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on March 31, 2007, 05:46:03 PM
hi there saul!
i've just googled the brace name on the net you have to wear and it is very very similar to the irom donjoy one,i had to wear one of these 24/7 for six weeks so can really relate to what you feel like,i was not allowed to do any PT or anything in this 6 weeks.
i also had a fall down the stairs while i was wearing it.
they are extremely uncomfortable and i also found it very hard to sleep and even harder to get comfortable.
do you lay your leg on top of cushion/pillows when you go to bed?
i found this helped a little,i also used to place something in between my legs (i used a tee shirt folded up!) as the metal part that goes up the side of the brace was set too long for my leg in first few weeks (the nurse kindly altered it at my check up) and it dug into my thigh on my good leg aswell as my bad legs thigh.the tee shirt just makes it a little less painful when your legs go together.
the sheer diameter of them makes getting around very limited as your good leg has to walk on a strange angle as you just can not get your legs close enough together,i also found it very heavy so the weight of your leg feels several times the weight it should.
once i had the dressings on my knee taken off,i found it worse as the damn thing then started to slip down unless the velco straps are tighened alot which then causes discomfort.
i used to dread going out as it is so restrictive and the movement is so limited,oh yes i can really sympathise with you and would hate to have to wear it again.

what do they do in the procedure you had done to your knee??

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 01, 2007, 02:17:05 AM
Heather,

Got your message earlier, I cannot do PM, guess I have not posted enough? I can do email if you want. And yeah, the brace is not comfortable and I use about 5-6 pillows at night. It takes a while to get into the right position for the night. Getting around in the brace and stairs can be very nerve racking. basically the main procedure was a 6" incision fro the knee down. Then part of the lower bone was chiseled out to make a new space for the knee cap and for the ligaments to be re=attached. Once they were re-aligned to the right position everything was put back with a couple of screws. So the ligaments were cut and re-attached. Also arthroscopic procedures were done to remove scar tissue from prior surgery and a lot of small tears had to be removed because the knee cap did not move up and down.

The brace is very restrictive and I end up knocking myself out just trying to relax my leg. At night I just loosen up the straps a little and someties during the day I just take the whole thing off. But I am very careful when I do that. I got another 6-8 weeks in this thing so I hope I can find a happy median with this thing. I am hoping that the weather does not to hot while I am still in the brace. I have to say that wearing this braces at times make me feel crippled, disabled or whatever you can describe it as. Oh yeah one last thing, with the brace I have started going down steps in my butt, it is easier and safer   :o ;D

Let me know and have a good night.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 06, 2007, 03:28:09 PM
Heather,

I was wondering where you have been and how you were. I found the postings in a different area that where I generally look. i am sorry to here that things have not changed. Here is the info that I want to give you. Cut and paste into browser. These are links to 3 departments at JHU. When you contact them you will want to give as much detail and the reasons as to why. You will need to be very forward and somewhat demanding. And it is important to emphasize the issues and problems that have brought to contacting them. I do not know if one department will be better the other, but you should be able to find a few people that you can talk with and hopefully a spot to see them. Persistance here is very important, but you could get lucky and find someone who is willing to look at your history, case files and everything else.

http://www.hopkinsbayview.org/ortho/index.html

http://www.hopkinsmedicine.org/orthopedicsurgery/index.html

http://www.hopkinsmedicine.org/academics/neurology.html

Also, I got the name of the surgeon there, his name is Wayne Leadbetter and knees are his specialty.

Let me know what is going on and I will be looking out to here from you. Take care !!!!

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 06, 2007, 11:54:40 PM
Saul -

Thank you for the information!  I really appreciate it! :)  I am still struggling with all of the side effects/symptoms that I was struggling with yesterday (and many days before that).  However, the CRPS pain and the muscle spasms/cramps have gotten worse today than they were yesterday (and yesterday was worse than the previous few days).  I got my 3rd lumbar sympathetic block injection today and it was more painful than the previous 2 injections! :'(  While the nurse was checking my blood pressure following the injection, I got really dizzy (I'm constantly dizzy for the past week or so, but this was dizzier than usual).  The nurse had me lay down as she continued to monitor my blood pressure and pulse.  Both were within acceptable limits (my blood pressure was fluctuating a bit, but nothing drastic).  The nurse had another nurse notify my pain doctor of what had happened and the doctor came in to see me.  I told him that I get severe dizzy spells like this daily (and often multiple times each day).  The doctor reassured me that my blood pressure and pulse rate were okay and told me to just lie there and relax until the dizziness passed.  The nurse told me that they would come in periodically to check on me and take my blood pressure again.  It was about an hour later before the dizziness had subsided enough that I felt okay to sit up for a few minutes, then stand up and leave.  I ate a bit of something during the drive to the center where I get PT (it's about a 30 minute drive from the pain clinic) because I thought I might feel better if I got some food in my system.  The PT assistant could see it in my eyes that I was dizzy when I walked into the PT treatment room.  She made sure she held onto me when we were walking from station to station so that she could catch me if I fell or passed out.  Part way through doing one exercise that I have to do standing up while holding onto a bar on the wall, the PT assistant saw that I was becoming progressively dizzier, so she got a chair and made me sit down for awhile.  After that, she made me go to one of the tables and for the rest of the time, we only did the exercises that I could do while sitting on that table.  I also fell asleep a couple of different times during the PT session and the PT assistant had to wake me up.  She also told me that she was concerned when I fell asleep because she was worried that with me being so dizzy that I would fall off of the table.  I was still dizzy by the time I was leaving PT, but was significantly less dizzy than I had been when I came to PT and I told the PT assistant when I was leaving that I was no dizzier at that time than what has become my "normal" dizziness that I have to deal with all of the time.  It's pretty sad when I have a "normal" dizziness to deal with. :(  Anyways . . . that's been my day so far.  I'm having considerable difficulty sitting at the computer to read and type messages (dizzy, difficulty focusing eyes, double-vision, falling asleep with no warning,etc.), but I am sick and tired of all of these symptoms/side effects preventing me from keeping in touch with people and from doing things that I enjoy. . . so I am trying to tough it out!  Although I will probably end up paying for it later with the problems being even worse! :(

I get the results from my blood test sometime on Monday, so will hopefully know something (good or bad) then.  Although I know my father has said he is willing to take me to Johns Hopkins to meet with a doctor to figure out how to resolve the CRPS, I also know that my father is going to say that I need to at least wait until I finish the three week course of getting these injections 3 times each week.  I'm going to at least wait until I find out the results of the blood test on Monday, before I consider contacting people at Johns Hopkins to get a second opinion.  Until Monday, I am trying not to worry about things and am trying to just deal with the symptoms/side effects as best as I can.  I told my pain doctor today that lowering the dosage of Neurontin I take daily has had no effect on lessening the symptoms/side-effects I am having, but has allowed the CRPS pain to increase and the muscle cramps/spasms to increase.  However, the pain doctor asked me to try to stick with the decreased dosage of Neurontin for two more days and let him know on Monday how it goes.  I told him that I could try to deal for two more days with things as they are, but that I would need a prescription for Neurontin either way because I do not have enough Neurontin to get me through the weekend even at the lower dose.  So he gave me the script and I'm supposed to keep taking it at the lower dose and discuss it with the doctor again on Monday.  I'm trying to deal with it, but am just soooooooooooo tired of all of this and don't know how much longer I can take it! :( :'(

Anyways . . . thank you for your support, encouragement, and info on people to contact at Johns Hopkins!  I hope that things are going well for you.  Please let me know how you are doing.  I'm keeping you in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 07, 2007, 12:24:57 AM
Heather,

I am very happy to hear from you, but I am so sorry to here how things are going. I am glad to hear you got the info and I can somewhat understand why to wait, but do not necessarily agree with waiting, if only for the one reason that no improvement has come about and the meds are making you a little unstable. My one concern would be the amount and combinations of meds that have been prescribed and adding to that the procedures that you have to endure. Just me speaking, but I would suggest that you gather up as many doctor and hospitals reports that outline verything that has happened and by keeping this info you can at least email these departments and people and start trying to get into JHU. Waiting does not really seem to be the most appropiate thing. If it was me gathering up all of the information and history and contacting people is paramount. But, if this is how you are feeling now than what, if any, gaurantees are there for you to see a noticeable improvement? Let me know, but I think you should start this process, but please take care and eat and drink plenty of fluids. Have any doctors suggested any kind of vitamins like iron and stuff?

So  I think I figured out to IM and I tried to send something to you. I did not have enough posts, but I am gonna slide don the stairs for some dinner and than back up to clean up and relax. Therapy was today, 6o minutes of stretching and yes a few tears  ::). So I am kinda sore and tired, but while I was sending this I could see that you were online, but could not figure out if there was a way to catch your attention.

Take care and will talk later.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 07, 2007, 10:28:29 AM
hi heather,
i'm so sorry to hear you are feeling worse and not better.
i hope these tests you are having bring back some results so the doctors know what they are working with so can work on getting you some relief.
how is your PT going? i hope jamie is still as encouraging for you!
are you still able to lift your leg like you could when you saw the nurse? i still get days were i cannot do this and others when i can.
are you going to get the second opinion? i always think its worth doing to see someone elses perspective.
i have replied to you in my diary also and will send you an e.mail later,don't worry about replying though as i know you have problems focusing!
i just like to send them so you know i'm thinking of you!
take care,
claire x

*my fingers are still crossed for you that you get some answers and relief from all this soon!*
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 08, 2007, 12:30:45 AM
As an update . . . for the most part, I am feeling the same way I did yesterday . . . no improvement.  However, I did notice last night that the swelling in my non-CRPS-affected foot, ankle, and lower-leg (ie, right leg) has gotten considerably worse and is worse than the CRPS-affected foot, ankle, and lower leg.  Don't get me wrong, there is definitely significant swelling in my CRPS-affected leg; but no where near as much swelling as in my non-CRPS-affected leg.  This does not make sense to me, because I would figure that it would be my CRPS-affected leg that would swell more considering that swelling is a symptom of CRPS.  Does anyone out there have any ideas on why the non-CRPS-affected leg would be the one that is considerably more swollen? Also, any ideas on how I can get the swelling to decrease?  I have used ice (only on non-CRPS-affected leg because CRPS-affected leg cannot handle ice because it only makes pain and CRPS symptoms worse) and have used rest & elevation on both legs.  However, none of this seems to help.  My right foot and ankle are so badly swollen that it feels like the skin is going to burst open and the swelling severely limits movement of my foot and ankle! :'( :'(  This just really concerns and scares me! :'( I don't know if this difference in the amount of swelling between my two legs just started yesterday or if it is just that I did not notice it before yesterday.  In either case, I didn't know until last evening so I could not ask my doctors yet; but I plan to ask the pain doctor on Monday when I go for my injection and will mention it to my GP when I speak with him on Monday to get my blood test results.  Otherwise . . . everything else is pretty much the same . . . bad, painful, frustrating, unbearable.  I just wish that someone, something, somewhere, somehow would be able to provide some sort of relief from all of this!  I don't know how much longer I can take this!  Hopefully all of these blood tests will show something to point the doctors in the right direction for treatment of this!   Anyways . . . that's the only update I have for now.  Will keep everyone posted as this goes on.

Saul - Sorry I could not figure out how to do the chat room thing with you last night.  Maybe we'll be able to figure that out some other time when we are both online at the same time.  Thank you for your support, encouragment, and concern!  I appreciate it!  At this point, I am still going to wait until I get my test results on Monday before deciding what I'm going to do regarding trying to get a second opinion.  I figure there is no harm in waiting to get the test results first because I will get the results on Monday and I cannot call around to the doctors' offices, hospital, etc. to gather up my medical records until Monday anyways since they are not open until Monday (and the medical records personnel that I would have to speak to in order to request my records from the hospital are not in the office over the weekend here).  In response to some of your other quesitons/statements . . . I am already taking a multi-vitamin that I was taking prior to all of these difficulties starting and I have continued taking them throughout the course of these difficulties.  As far as trying to eat well and drink plenty of fluids . . . I am trying to drink plenty of fluids (but I am not much of a water-drinker, I have to force myself to drink water.  I am drinking lots of other fluids though, juice, milk, flavored waters, lemonade, soda).  I have not been hungry and so have been forcing myself to eat.  Therefore, I have not been eating all that much because I can't force myself to eat very much or very often.  But I've been trying.  I will let you know what I decide regarding contacting people at JHU.  Please keep in touch and let me know how things are going for you.  I hope that you have a good day.  Please take care and know that I am keeping you in my thoughts and prayers.

Claire - Thank you for the well-wishes and support!  It is appreciated!  PT is going as well as can be expected, considering that I am going to PT after getting an injection each time and am feeling dizzy (and having some serious dizzy spells) the entire time I am at PT.  Jamie is being as encouraging and supportive as he has ever been. :)  Everyone else (PTs, PT assistants, and staff) at the PT center are being very encouraging and supportive also. :)  Yes, I can still extend my leg on my own, although it has gotten more painful and harder to do so, since Wednesday when I was able to do it for the first time.  As you can see from my message to Saul, I am still not sure if I am going to get the second opinion yet and plan to at least wait until after I get the results of the blood tests on Monday.  Thank you for the email . . . it was nice to think of something else for awhile (and nice to hear about your trips out and about).  Please don't feel as though you may make me feel bad by writing about all of the stuff you are able to do . . . it does not make me feel bad and instead makes me smile to think of the enjoyable things you are doing as you are my friend and I am happy for you being able to do those things. :)  Thank you for being understanding of my not being able to reply to your emails as quickly or often as I used to do (and as I would like to do)!  I will drop you an email when I feel able, but will not be tonight as this post has wiped me out and I cannot fight this double-vision and difficulty focusing anymore tonight.  Even though I have not been able to keep in touch as much as I would like to, you are always in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 08, 2007, 09:41:35 AM
hi heather!!
just thought i'd drop you a quick line to say hi!
im sorry to hear things are no better for you.
please keep me posted what the results are from your tests,i'll be thinking of you!
take care
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 08, 2007, 06:14:09 PM
Heather,

At least I can wish you a happy Easter. I understand about the eating thing. I have one thing to say about that  MUNCHIES     MUNCHIES     MUNCHIES !!!   ;D

Let me know what happens Monday and I will find you tomorrow !

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 09, 2007, 05:35:44 AM
Hi Heather! Thank you for your reply to my post op diary. I am hanging in there. Just trying to patient until I see the joint replacement specialist on the 19th and see what he can do to help me.

Im sorry your non effected leg is so swollen. Does CRPS spread? Well, maybe spread isnt the right word. I just know that when you have a pain related problem, it can affect other areas of your body as well, other than the injured area. I bet you are anxious to get your test results tomorrow. Let me know how that goes.

Do you drink Propel water? Its really good, and good for you. The vitamin mineral water is good as well. And juice as always. Just try and stay positive. Get all the nutrition you can. Rest, and take it easy. I know how hard all of this must be on you. You are in my thoughts and prayers always. Keep me informed.

DONNA 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 10, 2007, 12:23:37 AM
So . . . I've not been doing well.  Yesterday I did not feel well, the pain was worse than it has been in quite a while and some of the side effects (dizziness, double-vision, difficulty focusing my eyes, swelling, etc.) were worse than ever.  After dinner, while the rest of the family was in the family room at my grandmother's house playing with my nephew, laughing, and talking with each other; I layed out on a recliner in grandmother's living room by myself with my leg propped up and my pants leg pulled up because the pain and hypersensitivity were so bad that I was on the verge of crying. :'(  I layed out there for over an hour before my parents were finally ready to leave (my dad had walked past me over 30 minutes before and asked if I was falling asleep, I told him "no" and that I was laying there because I was in so much pain).  My mom had been so busy playing with my nephew in the family room that she did not even realize that I was in so much pain until we were getting ready to leave.  Then she asked why my pants leg was rolled up and my dad told her that I was in a lot of pain.  As soon as we got back to their house, I asked my mom to take a drink back to my bedroom and I spent the rest of the night sitting on my bed, watching tv, with my leg elevated and doing my best to not let anything touch my leg.  Even though I had taken my pain medication, my pain stayed above a 9 (on a 10-point scale) all night long and was still a 9 when I went to get my injection today. :'(  My pain was still a 9 after getting my injection and when I went to PT today.  My pain is finally down to about an 8 right now (after taking an afternoon dose of my meds and having Lidoderm patches on my leg for over 8 hours).  I spoke with my pain doctor today about how my non-CRPS-affected leg swells much more than my CRPS-affected leg (although both are significantly swollen).  He said that it is possible that the swelling is from the Methadone that I am taking.  I also spoke with doctor about the fact that the lower doses of meds has done nothing for the side-effects (having just as much difficulty from "side effects" at the lower doses as I was having at the higher doses) and that the lower doses of meds has allowed the pain to get worse and the muscle spasms/cramps to get worse.  So, doctor has told me to change my dosages again . . . lower Methadone to 30mg/daily (10mg in morning; 10mg in afternoon; and 10mg at night) instead of 60mg/daily and to increase Neurontin from 900mg/daily to 1500-1800mg/daily (300mg in morning; 300mg in afternoon; and 900-1200mg at night).  He also told me that if this change in medications does not seem to help with the side effects, then I am supposed to bring in my Methadone with me to my appointment on Wednesday and he will take it and try me on something different.  So we will see how it goes.  I'm having a hard time keeping up with all of these medication changes and remembering what I am supposed to be taking when.  I have to write it down before I leave the pain clinic and then I enter it into the calendar/scheduler on my cell phone so that it reminds me that it is time to take medication and tells me what and how much medication to take. :P 

I still haven't heard anything about the results of my blood tests yet.  I called my GP's office this morning and was told that the results must have come in over the weekend and that my GP had not had a chance to look over them and make a note on it regarding what the nurse was supposed to tell me about it or if GP wanted to call me himself regarding the results.  The receptionist said that she would make a note telling GP/nurse that I had called for my test results and that someone would call me back later today after the GP had a chance to review the results.  However, I still have not heard anything about the blood tests results and it is about 7pm here.  I may still hear something about the results tonight (my GP called me a few weeks ago at 9:20pm one night to tell me he had just reviewed a report from an ER visit I had in February and that GP had seen in the report that I had elevated liver enzymes and GP wanted me to call his office in the morning to schedule an appointment to see him to follow-up on it).  If I don't hear anything tonight, I'm going to call the GP's office again tomorrow morning to try to get some info about the results of the blood tests.  I am really upset/anxious/nervous/scared about all of this!

Claire - Thank you for the support and well-wishes! :)  I hope that things are going well for you.  I'm keeping you in my thoughts and prayers.  Take care.

Saul - Thank you for the support and "Happy Easter" wishes! :)  I know it's late, but . . . Happy Easter to you too!  I know it's not healthy food, but I do have lots of Easter candy to munch on now (my mom went overboard on putting together Easter baskets (actually bags . . . BIG bags)! ;)  As you can read above . . . I still don't have results of the blood tests yet, but will keep you posted when I do get the results.  I will also keep you posted when I decide what I'm going to do about JHU and second opinions.  Please take care and know I'm thinking about you and keeping you in my prayers.

Donna - Thank you for the support and prayers! :)  To answer your question . . . it is possible for CRPS to "spread", people with CRPS in one limb can develop symptoms of CRPS in another limb.  I pray that is not the case for me.  At this point, the pain doctor seems to think that the swelling problem is due to the Methadone that I am taking.  That is one of the primary reasons that the doctor has been decreasing the dosage of the Methadone and hoping that these difficulties with side effects will decrease with the lower dosages of Methadone.  However, that has not been the case so far.  I'm giving it 2 more days with an even lower dose and if it does not work, the pain doctor will take the Methadone from me and try me on something else on Wednesday.  Also . . . I do not drink Propel water, but have heard that it is good.  I like the Fruit2O waters, but don't have any at parents' house right now.  So . . . in the meantime, I've been using Crystal Light packets that you add to the 16.9 oz or 20 oz bottles of water.  I figure that's better than nothing.  I also like to drink lots and lots of milk! (and so far have had no problems with drinking milk and taking the medications that I'm on).  I am definitely anxious to get my test results, but have not gotten them yet.  I will keep you posted when I get the results.  Please keep me posted on how you are doing.  I will be praying that your appointment with the joint replacement specialist on the 19th goes well.  Please take care and know that you are in my thoughts and prayers.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 10, 2007, 03:55:19 AM
Heather,

I just read your update and it is about 10:40pm, I just finished my exercises, took the dogs out with my son and tried walking, 10-15ft or so. But that was good, I have to be very careful still and the PT will eventually bring back my ROM, but I can at least sit in a chair without sticking my leg straight out. I tried not sleeping with my brace at night (last night and tonight). Funny thing is, is that for now I am just as uncomfortable with the brace on and it seems to take a little while just to lay down and get the pillows in the right spots. I still have a proble eating when I am supposed to and that is not too smart. Easter break is over, so tomorrow my son goes back to school and so does my wife. It has been nice having company, eventhough there is not a lot I can do, but the both of them have made a list for me of what to eat and they will make sure that I eat before they leave in the morning. I have been able to manage not taking pills sometimes, but by 7 or so at night I am not feeling to stable. Ice sometimes seems to help after exercises, but I am not sure if it is in my head or not, but where the screws are, if the ice pack is too close it feels as the cold is transmitted through the screws right into my bones. That is very painful. Most days the pain is a 7 - 9 and I end up taking my percosets, but I try not to and find a way to fall asleep. I also think that the weather we are having is having an effect on my leg. The weather we have now certainly does not make you feel good. Even during the day it has been very cold and just to take the dogs out for a quick one I have to put winter coat, hat and sometimes gloves. IT IS SPRING... crazy ;D

But anyway, I will talk with you later and hope the test results are in your favor !!! Take care and hope you have a restful night.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 10, 2007, 10:05:46 AM
hello heather!
i hope you are feeling a little better today and the pain levels are lower? :'( :-\
did the doctor call you yet about the test results?
i hope if he hasn't he does soon so you can some answers.
i am really praying for you that the CRPS has not gone into your "good" leg,i think you have more then enough to deal with already. :-\
have you responded to any of the people on here who have replied to your posts who also have CRPS for support!
i am always here for you but wish i could do more to help!
take care,
thinking of you!
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 11, 2007, 04:27:46 AM
Hi Heather!! Just a quick hello to let you know I am thinking about you and hoping you are doing ok....

DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 11, 2007, 10:10:23 PM
Hi Heather,

We haven't heard from you in a day or so, here or over at Shortyclairebear's. I hope you're just having a lovely time playing with your nephew.. Is everything ok?

Thinking of you,
Lozzie.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 11, 2007, 11:49:09 PM
Hello Everyone -

Things here have been rather crazy.  I did finally hear from my GP about my blood test results . . . GP himself called me and explained that the reason he had not been able to call me earlier was because he was waiting for my Hepatitis studies to come back . . . Good news is that the Hepatits studies were negative, so I don't have Hepatitis. . . . GP also said that a bunch of other tests for vitamin levels, etc. had shown up to be within an acceptable range . . . however, my liver enzymes are still a bit elevated (but not quite as elevated as they had been in the blood test from February) . . . so, GP thinks I could have fatty liver or the elevated enzyme levels could be from some medication I was and am taking (although there are no meds that I was taking in February that I'm taking now) . . . GP says next step is to get an ultrasound done to check for fatty liver and to then go from there . . . GP was going to refer me for ultrasound test and said it could take a few days before I hear anything from ultrasound office about when they can schedule it (Yippee, more tests! :P).  GP said that my elevated liver enzymes could be from something serious, but that he thinks it's probably nothing more serious than fatty liver.  GP also stated that I still need to get the sleep test done and go to see the neurologist.  GP also stated that when I was in ER in February (same ER trip when the blood test revealed the elevated liver enzymes) due to chest pains, the CAT scan that was done showed a "spot" on my lung (the same ER docs who never told me about the elevated liver enzymes also never told me about this "spot" on my lung).  GP said that we (GP and I) will need to get this checked out sometime in the future also, but that he wants me to get these other tests done first.  Lucky me (sarcasm) . . . when it rains, it pours! :P :( :-\  Also, the pain from the CRPS and the side effects of the meds I'm on have been absolutely HORRIBLE the last few days!  My pain has consistently been a 9 (on a 10-point scale) and nothing I have to take or can do even comes close to touching the pain, let alone easing it at all! :'(  The side effects from the meds have been worse than ever!  I've been falling asleep with no warning more than I have ever done!  I fell asleep multiple times at PT today (and almost fell off the table one time when I fell asleep, but the PT assistant happened to see me leaning and ran across the room to wake me up/catch me before I fell off the table).  I'm so dizzy and lightheaded that I'm stumbling everywhere I try to walk and have fallen (or nearly fallen) on multiple occasions!  My double-vision and difficulty getting my eyes to focus on anything has been really bad (that's the main reason that I have not posted anything on here for the last few days).  Also, to make matters worse, I've developed a bad rash on my leg that is affected by the CRPS.  I have lots of redness and itchy red bumps all over my lower leg!  This all has just been an absolute living nightmare!!! :'(  I don't know how much longer I can take this!!!!!!! :'( :'( :'( :'( :'(

Also, they called yesterday to say they had to reschedule my appointment for today at the pain clinic because my regular doctor was not going to be in the office in the morning (which was when my appointment was scheduled).   The person who called me had no idea of what treatment the doctor had prescribed for me and she tried to tell me that the earliest time they could reschedule me for was for April 24th!  I explained to the person who called that that would not work because the doctor had prescribed for me to get 3 injections each week for 3 weeks, so she said she would have to check with my doctor.  She then called me back to say that my doctor had explained to her that I needed to be seen tomorrow (Wednesday) and offered to see me in the afternoon if I could get my PT rescheduled for the afternoon (he said he would not do the injection if I could not go to PT right after the injection because otherwise the injection would do no good) or to have me rescheduled to see one of the other doctors in the morning.  I tried to reschedule my PT for the afternoon, but it was not possible because none of the PTs or PT assistants had enough time that late in the day to work with me.  So, I called the person back who had called me about rescheduling and told her I could not reschedule my PT.  She scheduled me to see another doctor at the pain clinic about 1/2 hour before my appointment had previously been scheduled with my doctor (which worked out really well with not having to reschedule my PT because PT assistant said they could start working with me whenever I got to the PT center).  The doctor I saw today seemed really nice.  He asked me if the injections were helping with the pain.  I told him "no" that they haven't helped the pain at all yet and that overall (since my first injection) I would say I improved about 5% because I could now extend my leg on my own and I had not been able to do that since my surgery in January.  The doctor said he would talk with my doctor this afternoon because if the injections weren't working yet (this was my 5th injection) that he usually stops the injections and tries something else (he didn't say what) with his patients because there's no point in putting patients through the pain of the injections when they are not helping to relieve the pain any.  However, he said he was not sure what my doctor would want to do; but that he would talk it over with my doctor.  I also asked the doctor today about the medication change that my doctor told me he would do today if the change in medication dosages (changed at Monday's appointment) wasn't working.  The doctor I saw today told me to continue with the medications as prescribed on Monday until I see my regular doctor on Friday because he would not change the medications without my doctor telling him what he wanted them changed to.  I also asked the doctor today about the rash on my leg.  The doctor I saw today at the pain clinic said that the rash could be from the Lidoderm patches.  He asked me if the Lidoderm patches had been helping at all and I told him that "yes" that the patches had been helping and that I use them when I go to physical therapy (so that the PT or PT assistant can touch my leg when they are trying to bend it . . . I put the patches over the hypersensitive area on my leg and that's the only way I can stand to have anyone touch my leg), so the doctor told me to keep using them until I see my regular pain doctor on Friday.  I used the Lidoderm patches for PT today, but took them off after PT was done.  I'm going to try to go without using the patches until my appointment on Friday to see if that helps with the rash at all.

I feel like CRPS has taken over my life and stolen it from me . . . like every bit and piece of my life either completely revolves around CRPS or I can't do/participate in at all because of the pain and side effects of the meds or I just can't do anything except sit down and cry! :'( :(  I don't know what to do about this . . . I want my life back!  I can't take this anymore!  I spend a lot of my time either really wanting to cry or actually crying! :'( :'( :'(  This is no way to live! :'(  I need the doctor to figure out something (meds or procedure) that will work to give me some relief from this pain!  I can't stand to live with the pain consistently at a 9 on a 10-point pain scale!  This pain is worse than it was when I was in the hospital for 4 days a few weeks ago! :'( :'( :'(  I don't know what to do!  Sorry about venting like this.

Saul - Thank you for the well-wishes!  Congratulations on walking the 10-15 feet when you were out with your son and the dogs!  I'm proud of you!  Also, what you were saying about ice and feeling like your screws send the cold right into your bones . . . I've read posts by other people on here who have said the same thing, so your not alone with that experience/feeling.  How are you doing?  How's it going not having your son and wife home with you during the day?  How are you doing with making sure to eat when you're supposed to?  Keep me posted on what's going on for you.  Please know that you are in my thoughts and prayers.  Take care.

Claire - Thank you for the support!  I also hope that the CRPS is not going into my "good" leg and that the swelling and pain are just from the Methadone I am still taking.  Hopefully, when I speak with my regular pain doctor on Friday, I can get off the Methadone and start on some other sort of medication that does not cause so much swelling/side effects (and hopefully the swelling and pain in my "good" leg will go away if I stop taking the Methadone).  I have not really replied/talked much with anyone on here who has CRPS (except to post a message to one person who replied to my "burning pain" posts to thank her for her offer of support and providing me with her email addresses).  I do plan to send her an email when I fell up to emailing.  However, by the time I post on here, I'm usually too wiped out from dealing with double-vision and difficulty focusing eyes to be able to email then.  But I do plan on doing some emailing sometime in the next few days (maybe even tomorrow since I don't have to go anywhere . . . no injections, no doctor's appointments, no PT . . . it's a day to rest before having my next injection and PT session).  Anyways . . . take care.  As always, you are in my thoughts and prayers.

Donna - Thank you for the well-wishes!  How are you doing?  Please keep me posted.  You are in my thoughts and prayers.  Take care.

Lozzie - Thank you for thinking of me!  I wish I had just been having a lovely time playing with my nephew, but as you can read above I was not.  How are you doing?  I hope things are going well for you.  I'm thinking about you.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 12, 2007, 04:19:46 AM
Heather...You have every right to vent, rant, cry, yell, whatever helps you to relieve some of the stress you are under. You are going through sooooo much. I needed to read this to put all my problems into prospective. Ive had a couple of bad days, wanting to cry, etc. But, reading what all you are going through helped me to realize how much worse it could be. I think about you often and pray that your pain and discomfort eases up some. I know this has to be a nightmare for you. Please IM me anytime if you just want to vent. I am always here for you. You are in my thoughts and prayers....DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 12, 2007, 10:40:22 AM
HI HEATHER,
IM PLEASED TO HEAR THAT THE BLOOD TESTS SHOWED A NEGATIVE FOR THE HEPATITIS BUT SO SAD TO READ YOUR POST AND HEAR HOW MUCH PAIN AND DISTRESS YOU ARE GOING THROUGH,I REALLY WISH THERE WAS SOMETHING I COULD DO TO HELP YOU TO FEEL BETTER,YOU SOUND AS THOUGH YOU ARE HANDLING THIS EXTREMELY WELL CONSIDERING HOW AWFUL YOU MUST BE FEELING AND SOUND SUCH A STRONG PERSON, EVEN IF YOU DON'T FEEL IT AT THE MOMENT,I REALLY DO HOPE AND PRAY THAT SOME LIGHT AT THE END OF THE TUNNEL IS FOUND SOON TO RELIEVE THESE HORRIBLE SYMTOMS AND TO BE ABLE TO GIVE YOU YOUR LIFE BACK.
IM ALWAYS HEAR FRO YOU TO VENT/CRY TO AND ALWAYS WILL BE!
THINKING OF YOU AS ALWAYS,
CLAIRE X
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 12, 2007, 06:09:10 PM
Heather,

I am glad to hear about your results and am sorry for how you have otherwise been. A few years ago I had used the lidocaine patches on my shoulder and I also had a slight rash in the area. I have not used them in along time, but remember reading or being told that rashes are a side-effect when used for long periods of time. I am doing ok I guess, as I am still in constant discomfort sometimes worse than others and I just try to sleep and try really really hard not to dwell on things. Everyone went back to school this week and I am bored, just sleep and piddle around sometimes. The weather, as you know, has been horrible and just taking the dogs out in the cold is a pain, because I have to put sweat pants on and that irritates my knee. I cannot wait for the weather to warm up, just a little and stop raining. I think the weather has also caused me some discomfort. As for eating, still a problem, sometimes I remember, sometimes do not feel like it, and sometimes I do. My ROM has gotten a little better when moved, but still a ways to go. I may have to change my pain meds, because when I take them they do not seem to do a thing, but that is probably due in part to taking them for so long. It makes it hard at night to get some rest.

Have you reconsidered about getting other opinions as it does not sound as if progress has moved forward and you seem to be locked into the same thing ?  :-[  :'(

Saul

 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 12, 2007, 07:11:24 PM
Hi Heather,

I really feel for you and the situation you are in. I'm having a bit of a setback today myself, and its so bewildering when you think everything is going well and then suddenly you're right back in pain land. And all this other stuff too, well, I don't know what else to say except that I really feel for you. I also think you're a pretty wonderful person, as you're experiencing so much that is negative, and yet you still have a nice word to say to everyone. That takes true strength and I admire you for that.

Please don't ever be sorry for venting, its what we're here for, to listen and help each other out.

Please take care, and I truly hope all of this gets sorted out as soon and as well as possible. My thoughts are with you.

Lozzie. xoxo
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on April 12, 2007, 11:01:30 PM
Hi, Heather

How are you doing today? Don't be bothered about the venting, you have a perfectly good reason.

I hope this all starts clearing up soon and things can get back to normal.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 13, 2007, 12:51:14 AM
Hi All -

I hope that everyone is having a good day!  I'm doing the same as I was doing yesterday . . . pain is still a 9 and pain woke me up even more last night than usual (it usually wakes me up 3 or 4 times where I'm up for about 5 minutes and am able to go back to sleep; night before last it woke me up 3 or 4 times but it took 30 minutes most times -and 1 hour once- to get back to sleep; last night it woke me up at least 5 times and each time it took at least 1 hour or more to get back to sleep :().  Difficulties with side effects are as bad as they were yesterday (which is worse than they had been prior to that).  Today I have been falling asleep with no warning more often than usual and have hit my head quite a few times today when I suddenly fell asleep.  Hit my head on the computer desk (multiple times), dining room table (multiple times), headboard of my bed, chairs (multiple times), and kitchen counter top.  I have a headache :'(, but hope that I will not have too many bruises from this as I have a photo shoot on Saturday (need a black and white headshot for a young careerist competition that I am in).  I also fell asleep while walking back the hallway earlier today, thankfully the wall caught me and between the wall and my crutches I did not fall (not really sure how I managed not to fall, but am very thankful for it anyways!).  This falling asleep anywhere anytime with no warning has gotten to be rather scary even when I don't leave the house. :( :o ::) :'(  

The other difference in my side effects today is that some of the red bumps on my rash have broken open and started to bleed today.  I have had to put band-aids on 4 of them because they were bleeding too much.  Thankfully, none of the ones that required a band-aid are on the EXTREMELY sensitive area on my leg (because I don't think I could stand the pain if I had to put a band-aid on that area).  I'm going to talk to my doctor tomorrow about this rash and see if there is anything that I can do about it.  I'm also going to talk with my doctor about changing the medications because the lower dose of Methadone does not seem to be enough to decrease the swelling (doctor told me on Monday that if it wasn't working to bring the Methadone with me to my next appointment with him and he will take the Methadone and try me on something else).  Hopefully, stopping the Methadone will stop the swelling (especially the swelling in right leg -non-CRPS-affected leg- and the pain caused by the swelling in that leg).  I'm also anxious to find out at tomorrow's appointment if the doctor I saw yesterday talked with my doctor about stopping the injections (since I have now had 5 injections and they aren't working) and trying something else and . . . if the doctor from yesterday did speak with my doctor, then what my doctor has decided to do.  I guess I'll just have to wait and see.  I'll post here tomorrow evening sometime with an update of how the appointment goes tomorrow (what the doctor says and how the 6th injection goes if the doctor still wants to stick with doing the rest of the injections).  If, after the 5th injection, it's possible to tell that these injections are not going to start working, then I am definitely ready to move on and try something else!  I just want this pain and all of the other symptoms to at least ease up some!  I feel like it's not possible to even hope for complete pain-relief and symptom-relief, but I do still hope for something that can decrease the pain and symptoms some (hopefully, enough to get back to some semblance of a normal life).  I'm beginning to wonder if there is even any hope of getting back to any kind of normal life or if CRPS has stolen my life from me forever! :'( :'(  Is it too much to ask or hope to have some sort of pain-relief that will let me get back to participating in life again????  

Please forgive me for being in a "feeling sorry for myself" sort of mood lately.  I do not like feeling sorry for myself, but can't seem to break this mood/funk that I'm in the last few days.  It's hard to do when I'm feeling sooooooooooooooo badly! :'( :'( :'(  Maybe I'll get some info at my doctor's appointment tomorrow (about a different procedure to try, medication changes, etc) that will give me some hope or change my mood.  

DONNA - Thank you for your support, prayers, and offer to allow me to IM you if I need to vent! :)  It is greatly appreciated!  I'm sorry to hear that you have had a few bad days. :(  Hopefully, you are having a better day today.  You are in my thoughts and prayers, also.  If there is anything that I can do for you, please let me know.

CLAIRE - Thank you for your support, thoughts, and offer to be there for me to cry/vent to!  I really appreciate it and you!  Also, thank you for telling me that I sound like I am a strong person even if I don't feel like it right now!  It helps when I feel so weak to hear (actually . . . "read" is more appropriate) that someone else sees me as strong.  Thank you for that reminder!  I hope that you are having a good night (and that Bobbie feels well enough to get some sleep and let you get some sleep also). ;)  As always . . . you are in my thoughts and prayers.

SAUL - Thank you for the reassurance regarding rashes being a side effect of the lidocaine patches (I've been hoping that is all that this rash has been and not something worse).  I'm sorry to hear that you have been in constant discomfort, are bored, and still struggle with the eating thing. :(  I can really understand what you are going through.  If you ever need to talk, I'm here for you.  I agree that the weather can play a big part in increasing the discomfort/pain and makes it much more difficult to be in a positive mood for dealing with everything you are going through.  I can't wait for it to warm up some more myself, as when my extreme sensitivity really flares up on my leg I cannot stand to have anything touching it (that includes any kinds of clothing no matter how soft it is) and it would be much easier when it flares up if it would be warm enough to just wear shorts.  Congratulations on getting a little more ROM! :)  Every little bit gets you one step (degree) closer to your goal.  As for getting other opinions . . . I kind of feel like I did get a bit of another opinion with having seen another doctor at the pain clinic in Hagerstown yesterday morning (when my doctor was out of the office for the morning) and the doctor I saw yesterday said he was going to talk with my doctor about possibly stopping the injections and trying something else.  I'm going to wait until I speak with my doctor tomorrow and see what he says about possibly trying something else and what other procedures may be options.  I also need to check to see if my insurance would cover for me to get a second opinion (and especially so soon since it hasn't even been a month since I first met with the pain doctor that I have now).  I'm still considering the option of getting a second opinion, but I want to see what other treatment options my doctor is thinking of as possibilities and what changes in medications he may have in mind.  I know from my own research about CRPS that it is a bunch of trial and error to figure out what medication combination is going to work best for each person because there are so many variables within each person and with CRPS that there is no set combinations of medications that work for everyone (or even most people for that matter).  I hate the fact that it's a lot of trial and error (in particular with the medications), but have come to realize that is the case with CRPS.  Also, from listening to the doctor that I saw yesterday, I got the understanding that the doctors at the pain clinic I go to have all worked with many CRPS patients.  So I feel even more confident that this may be the right place for me to be getting treatment at the moment (at least as a first stop and giving them more than a month to try to treat this).  But I do appreciate your help with getting me the right resources to contact people at JHU and for your concern that I should be looking into getting a seond opinion.  I will let you know, but I feel like I may have a better idea after my appointment tomorrow about whether or not I feel like I can get good treatment options from the doctor I see now.  Anyways . . . sorry I've rambled on for so long . . . I just realized how long this section of the message to you has gotten.  I hope that things get better for you; that you are not in so much discomfort, can eat when you are supposed to eat, and are not bored so much.  If there is anything that I can do for you, please let me know.  You are in my thoughts and prayers.

LOZZIE - Thank you for the very kind words and thoughts! :)  It is really appreciated!  It really helps (when I feel so down, low, knocked out of life, like I can't do anything and so don't have anything to offer to anyone, etc.) to hear (in this case "read") such kind, positive words about how someone else thinks of me and what they see in me.  It helps me to also try to see/recognize those things in myself (which makes it easier for me to fight the negativity that comes from dealing with all of this pain and symptoms).  Thank you sooooo much! :)  I'm sorry to hear that you are not having a good day. :(  I've responded to your message in shortyclairebears ROM diary.  I hope you are feeling better (or at least a bit better) by the time you are reading this message.  If there is anything that I can do for you, please just let me know.  I'm keeping you in my thoughts and prayers.

GARTH - Thank you for the post and for the reassurance that it is okay for me to vent!  It is appreciated!  I hope that you are able to get the PT and MRI stuff straightened out and scheduled soon (I understand that the NHS can be VERY SLOW, but I hope that they are miraculously quick in your case ;)).  Keeping my fingers crossed for you and am keeping you in my thoughts and prayers.

Thank you everyone!  Your support, understanding, prayers, thoughts, and kind words are one of the main things that are keeping me going these days!  I really appreciate all of you!  Please keep me updated on how you are all doing.  If there is anything that I can ever do for you, please don't hesitate to ask.  I keep all of you in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 13, 2007, 01:38:33 AM
Hi Heather,

I can actually sit up now and move around without huge pain, so I guess the anti-inflammatory and the rest is working. I'm a bit nervous about going to work tomorrow, but I think if I have a super early night I'll be ok.

Thanks so much for your well wishes. I'll log on as soon as I get home from work tomorrow to see how you went at the doctors.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 13, 2007, 11:43:30 AM
hello heather!
how are you feeling today?
i was hoping you would be getting closer to the "light at the end of the tunnel" with the pain,i think you have experienced far more then "enough" already.
is there nothing at all that can be done to ease it more? i cannot imagine what you must be going through and hate to think such a good and friendly person is having to tolerate all this you are having to go through when the "bad" people of the world can breeze through life with no major health ailments or physical pain.

i do think you are an extra strong person to tolerate this and go through it as you are with so little complaining!
i think there are alot of people on here (me included) who read your posts and think to ourselves what are we complaining about when you are having to go through so much more.

i really do hope and pray that something is soon done to help you get your life back on track and ease your pain and symptoms.
you are in everyones thoughts and prayers and will continue to be!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 13, 2007, 04:27:43 PM
Heather....Just wondering how your day is going and how you are feeling. Hoping you slept well and are feeling some better today.

Hi Claire! How are you? How are you feeling these days? Just thought I would say hello and "Happy Friday" to you.  :)

Lozzie.....Hope your work day went well. Will check back later to see.  ;D

Saul....are you behaving? How ya feeling?

Im doing ok here. Only one more week till my consult. Talked with my PT yesterday and she feels that a TKR would do me a world of good. Although its not an easy rehab, it will give me back my quality of life. Everyone seems to think so. Its just so nervewracking. But Ill be fine.

Talk to you all later....

DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 13, 2007, 06:09:50 PM
hi donna!!
how are you!!? im doing okay these days....thanks! i reached 100 degrees ROM in PT this week and have not fallen down the stairs lately!!
when do you find out if you have the TKR? will that be at your consultation next week??
if you do go ahead and have it done you will have heaps of support here!!
take care,
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 13, 2007, 10:07:19 PM
Hi Heather,

Managed to get through work today with only a little pain in my feet, shins and tailbone. I keep getting blisters on the balls of my feet, and my shins have been giving me trouble since I started back at work, but the new hip thing yesterday was very frightening, especially combined with everything else. I only had one class today, and usually they're a bit annoying, but for some reason they were relatively nice. Afterwards I was planning my lesson for tomorrow, and as I turned away from the bookcase, my hip clicked into place. So, hopefully (fingers crossed) my hip was out and everything was all inflamed because of working and walking too much. I'm going to ease off on so much walking until the end of May and maybe try pool walking instead. I can't bear to stop exercising now, but I think I've been going at it too hard.

How did your doctor's visit go? I do hope they have thought of some alternatives. I'm looking forward to hearing how it went, as you are in my thoughts a lot.

And hi Donna, yes, work was ok, especially since I only work from 9 to about 130 on Fridays. I'm on the list for any substitution tonight, but since I did the last one on Wednesday and its what started off all my horrible pain, I doubt they'll call me!

Take care everyone,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 14, 2007, 04:21:18 AM
Claire....Congratulations on the 100 degrees at PT and LOL at not fallling down any stairs. Good job!! 8)My consult with the joint replacement specialist is next Thursday, the 19th. I hope to know more of what my options are then. I am so analytical. My mind is always going. You know, what if he says yeah Im a candidate, when do I do it? We have no bussing here in our school district, so do I put it off for 6 weeks till school is out? But then, its summertime, and if I would do it now, Id already be that far into rehabbing it. Lol. I need to just STOP. But thats what I do....think, think, think. Thanks so much for your support. Its great to know I have wonderful Knee Friends to count on. :D

Lozzie....Are you a teacher? Foot pain is almost as annoying as knee pain. I mean, the saying when your feet hurt, everything hurts is so true. Hope they are feeling better. It does sound like maybe your hip was out of place. Just had to work itself back to where it should be. I think the knee problems somehow make everything go out of whack. Ive never tried the pool therapy, but I have heard it is fantastic. Better days ahead.....

DONNA

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 15, 2007, 08:15:32 PM
Hello there,

Has anyone heard from Heather? I hope everything's ok, and I'd really like to hear how she went at the doctor's.

Donna, yes, I teach English as a second language here in Colombia. My hip pain has largely gone now, and I remember that this was where I had trouble when my back went out 2 weeks after the surgery. I think you're right, my new posture is making things move differently. After my first LR, my ankle started to click a lot. In the beginning it hurt, but now it just readjusts itself with a little noise, and it doesn't bother me at all. I've always been interested in anatomy and physiology and at least I have something interesting to think about while I'm trying to deal with the pain!

Please, any updates on Heather would be appreciated. I feel like she's become an e-friend, and I'm wondering how she is.

Cheers,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 16, 2007, 03:49:05 AM
Hello All -

Sorry I have not posted lately, but I have been feeling rather badly (pain has been 9 or 10 on a 10-point scale consistently and side effects symptoms have been quite tough to deal with).  As an update . . . at my appointment with my pain doctor on Friday, he did not do another injection in my lower back.  Instead, the doctor tried an injection of some sort in the lateral side of my lower leg by the knee (I think the doc said it was going into the nerve by the fibular head?).  The doctor also changed my medications again . . . increased the Neurontin dosage back to where it had previously been (since decreasing it did not decrease my side effects and the lower dose allowed for more muscle spasms/cramps that are quite painful) and he took me off of the Methadone and prescribed Opana ER (5mg every 12 hours) for me.  The pain doctor also wants me to continue with PT (even though he is not doing the sympathetic block injections right now) and that if I start to realize that PT is becoming significantly more painful for me to do then I am to let him know and he will start with the sympathetic block injections again because he said it is possible that the injections were helping but doing so subtley that I did not notice until after they're stopped.  After leaving the pain clinic we had some extra time before I was scheduled to be at PT, so we tried to get my presciption for Opana filled, only to find out that my regular pharmacy does not carry Opana and it would take 2 weeks for them to get it in for me.  There's no way I could go 2 weeks waiting for this medication!  The pharmacy had suggested another local pharmacy that may carry the medication, but since I had signed an agreement with my pain clinic to only use one pharmacy, I couldn't just go to the other pharmacy without getting permission from my pain doctor.  I called the pain clinic and left a message on their medication and treatment concerns line explaining the problem and requesting a return call on my cellphone.  The injection in my knee/lower leg initially did nothing other than make the back of my knee feel cold.  However, a bit before I started PT I had noticed that my leg was hurting more than it had been (it had been a 9 when I was at the pain clinic, both before and after getting injection), so we took things easy in PT.  At this point, I am struggling to get 90-degrees ROM when the PT or PT assistant tries to bend my knee (I get nowhere near that much ROM on my own). :(  At the end of PT (while I was sitting there with e-stim on my knee and ice on the side of my knee that is not hypersensitive), my knee started hurting even more to the point that I was sitting there crying and could not stop. :'(  The PT assistant (my PT had the day off) encouraged me to call the pain doctor after I had told her that I was concerned I may be having a reaction to the injection (I had more red streaks in the rash on the side of my leg after the injection).  When I called and spoke with a medical assistant I told them about the red streaks in the rash and that my leg hurt worse than it did when I was in the office in the morning and that it hurt and had a burning pain in an area that normally does not hurt.  I was informed that my pain doctor did not think I was having a reaction to the medication injected, that the injection may have irritated the leg a bit, and the doctor just wanted me to take the new medication he had prescribed.  I explained the difficulty I had with my pharmacy not having the Opana and that I had called the pain clinic and had been waiting for a return call.  The medical assistant told me it was okay for me to use another pharmacy.  As soon as PT was done and my grandmother had arrived to pick me up, we went directly to the other pharmacy.  While I sat in the car crying because the pain was a 10, my grandmother went in the pharmacy to find out if they had the medication.  They did and after grandmother registered me with the pharmacy, they had the prescription filled within 10 minutes.  As soon as I got home I took one of the pills and sat on my bed.  I spent the rest of the day/night sitting on my bed, crying because the pain was still at a 10.  I was also still dizzy, seeing double, lightheaded, falling asleep without any warning (only asleep for about 5 minutes each time though).  I was also very frustrated with the whole situation and worrying that this is how things are always going to be and that I will never get my life back (be able to go back to work, live on my own, drive, etc)! :'( :'( :'(

Saturday morning . . . pain was a 9.5.  I had to go to the photo shoot, because I need the black and white photo by 4/21/07 for a young careerist competition I am in (District level competition is on 4/21 and if I win to represent my district, the State competition is in April).  I had agreed to participate in this competition back in the fall 2006 before all of the problems with my knee started.  I am trying very hard to not let the CRPS take this competition from me also!  Anyways . . . it's a good thing they only needed a head shot for the competition, because I only wore business clothes on the top half of me.  I wore a blouse and blazer on top with really soft fleece pants and sneakers.  Even though the pants were very soft, I had to have the left pants leg rolled up above the knee because my leg was too sensitive to have anything touching it at the time.  As soon as we got home, I changed clothes and went back to sitting on my bed, because the pain had gone back up to a 10 by then. 

I have basically spent my weekend sitting on my bed, crying because the pain is so bad (never going below a 9 and quite a lot of the time it was a 10) and the other symptoms are as bad as ever.  My nephew came over to visit for a few minutes this evening so my parents' brought him back to my bedroom to see me for a bit.  It was nice as he always brings a smile to my face and it was the only time I smiled the entire weekend!  I have another appointment with the pain doctor tomorrow, so hopefully he will have some other ideas on what to try.  I cannot keep living like this!  I can't continue to spend my time sitting on my bed, crying!  Right now as I sit here typing, the pain is down to a 9 (the lowest it has been for at least the last 4 days or so). :( :'( 

LORRAINE - Thank you for the support and concern!  It is appreciated!  I'm sorry that I wasn't able to post an update for so long, but as you can read above, it's been a really tough last few days.  I'm hoping that things will soon turn around and I can get a bit of hope; but am struggling with this at the moment and worry that things may not get better or at least not anytime soon.  SOrry I'm being so negative, I just can't seem to find my way out of this mood/funk I'm in right now.  Anyways . . . enough about me.  I'm glad to hear that you are feeling better and that work went well for you on Friday.  I hope that it was just you hip was out and that it is now in and won't be hurting you anymore!  I feel like you have become an e-friend, also! :)  How has your weekend gone?  I hope you have a good start to your week.  I am keeping you in my thoughts and prayers!  Take care.

CLAIRE - Thank you so much for your support and words of encouragement!  I appreciate it!  I got your email.  Thank you!  Due to the difficulties I'm having with reading/typing, I'm just going to respond to your email here rather than send you another email.  As you can read above, my pain doctor did try something different.  However, it did not seem to help, unless it is something where it has to have some sort of cumulative effect before you can tell if it's helping.  I'll see how things go tomorrow at the doctor's office and hopefully, will feel well enough to post an update sooner than I did this time.  I thank you once again for your kind thoughts, prayers, and words!  I have also been hoping to see some "light at the end of the tunnel" soon and have wondered why this all is happening to me.  It helps to "hear" (read) that you think I'm an extra strong person.  "Hearing"/reading positive things on how others' see me, helps me to remind myself/see myself that way also.  Thank you.  As far as you or others reading my posts and thinking to yourselves "what are we complaining about" when you see what I am going through . . . everyone's pain is important because it is their pain.  I feel bad for anyone going through any kind of pain because (even if they are not going through the same thing that I am) it is important because it is their pain.  How are you doing?  How's Bobbie doing?  Please keep me updated.  If there is anything that I can do for you, please let me know.  You are in my thoughts and prayers.  Take care.

DONNA - Thank you for the support and well-wishes!  It is appreciated!  How are you doing?  I can relate to the always thinking thing and wondering "what if . . . ", trying to think/plan out 10 steps ahead of now.  I heard a quote today that I think may help (I've heard it before, but was re-reminded of it again today and it has helped me in the past) . . . "Life by the inch is a cinch, Life by the yard is hard".  It just helps to remind me that I only need to look at now and the next step, then when I get to the next step I can think/decide about step 3, etc.  I don't know if that quote will help you any, but I have found it helpful in the past (although I had recently forgotten about it).  I hope that you are doing well.  Please let me know how things go with the specialist on Thursday.  I'm keeping you in my thoughts and prayers.  Please take care.

I appreciate each and every one of you!  Thank you for everything!  Please know that I am thinking about each of you and keeping you in my prayers!  If there is anything at all that I can do to help, please don't hesitate to ask me.  I will help in any way that I can.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 16, 2007, 05:15:42 AM
Heather....I admire you for going through with your photo shoot despite all the pain you are in.Pat yourself on the back for that. You deserve it! ;D It is important to try and keep looking forward and pushing, if for nothing else, for your own sanity. You cant just stop living.Good luck with the competition. It would be absolutely wonderful if you could win that. A much needed "reward". Ill keep my fingers crossed for you.

 I am so sorry that you are going through so much pain. I do think about you all the time and hope that one of these treatments will give you some much needed relief soon. Maybe this new medicine will help? Just try and be positive, as hard as it may  be sometime. You are a strong person, with a strong faith. Someone IS looking out for you up there, and will take care of all of this.

I hope you get some rest tonight, and that Monday is a fresh start to a new week for you.

Thanks for the quote....I love stuff like that.

Sleep well...DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 16, 2007, 01:01:45 PM
Heather,

It was so good to hear from, but am sooo sorry the that problems are still apart of everyday life. The drugs you hve been prescribed are very potent and to be truthful, I do not know what I would be like or what home life would be for me, if I had to be in shoes. My thoughts and pryers are with you. From what you wrote all I can sya is to be vvery careful with the medications. I find the number of things taken or given to yoy very scarey, especiially the newest. I am sure the weather we are having has not been much of a help either. Though Saturday was not that bad, but Sunday and today are just rotten. I have to ask, if you are trying to plan ahead, to help in your healing process, that you do include other opinions. I know that this seems redundant, but based on the meds that you have been through, I would be very careful, if only for what these meds consist of and such strong narcotics would be kinda make me rethink other opinions. Some of the meds you have been prescribed are extremely potent, dangerous and side effects could be scarey. Sorry, just giving my opinion and do not want thrust anything upon you, just a voice a concern ...  ::).

But anyway, really quick, I am doing ok, though it would be nice to have a day without pain, I do not care how low or high. Just no pain. The weather has aslo caused alot if discomfort and there is nothing I can do. I go to PT this afternoon, I am so excited ... not. but progress is the necessary evil. I am sure that I will be out of it tonight. But other than that, I am do not much else to add, other than the fact that I am progressing as well as expected. Still bored and limited to almost anything and for what I could do, the weather stinks. Just spen the day keeping leg elevated, ice, sleeping or exercising. So much excitement  ???.

I will catch you later and please take care and try to smile  ;D

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 16, 2007, 04:57:25 PM
Hi Heather,

Like Saul, its good to hear from you, but I'm sorry things are still not resolved. I was hoping that your doctor's visit would have fixed everything, and I guess you were too! I'm glad you're off the methadone, but I don't know much about the alternative. In the pain clinic do they use any alternative therapies? I have a friend who has an incredibly painful sinus condition, and she says acupuncture is the only thing that's helped her.

Please don't worry about being negative here, of course you're feeling bad, you're having a very rough time lately and I bet its hard to believe there will be a light at the end of the tunnel. We're all here for you, I want you to remember that.

I had a good weekend, although now I'm paying for it. I went out for a real night out for the first time in ages on Saturday night. I ended up at a nightclub, and while I could only dance a tiny bit, and that hurt like mad, it was so nice to at least be out. I had to spend yesterday in bed with a bad hangover, which apart from the unpleasant feelings, I don't like because I'm trying to heal internally and I'm worried that I've battered my immune system a bit this weekend. I guess a bunch of vitamins and not doing that again for another year or so is what I need.

My hips are hurting a bit today, but I think that's more from lying around with a sore head than anything. After my last operation, my right ankle gave me problems for a while, and it seems that this time its my hips/base of my spine. I haven't got another doctor's appointment for two weeks, but if this gets any worse I'll be asking for an emergency visit. I'm also going to try to do some stretching every day, which will help things, as my physiotherapist said that all my muscles are working a lot harder than usual at the moment when I spoke to her the other day.

I feel completely sick of all this, and can't wait to be 'normal' again. I can only imagine how you must feel. Please take care, and know that I'm here for you. I'm not sure what I can do apart from listen, but do let me know.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 16, 2007, 05:54:46 PM
hello heather!!
it was so good to hear fro you again even if it was not good news you had to post,like donna said,i think you did great going to get your photo taken still and think you should be proud of yourself,the most basic things can be such hard work when you have knee problems and getting this done through all you are going through is great!
i hope these meds soon start to work and you soon get some relief.
i think you need to get some relief soon as you have been through this pain far too long already!
as i have said before i really wish there was something i could do for you!!
don't worry about not replying to my e.mauils,i don't expect you to but just want you to know you are often in my thoughts and i worry if i don't hear from you!!
post when you feel up to it we all understand that it is difficult for you to focus,etc and just like to hear from you to make sure you are doing okay and let you know we are thinking of you and here for you to vent to etc.
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 17, 2007, 06:24:15 PM
Heather...Just checking in. How are you today? Wanted to let you know I am thinking positive thoughts for you.  ;D :D

Donna
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 18, 2007, 02:09:28 AM
Hello Everyone -

I hope you are all having a good day/night (depending where you are in the world  :P).  As an update . . . pain has decreased some and is about an 8 right now.  It's still quite painful, but I'm glad it's not a 9 or 10 as it has been for the last few days.  I had an appointment with my pain doctor yesterday and my pain was a 9 when I was at the appointment.  When I had told him that the injection last Friday did not seem to help and I was in more pain, he asked me if it had even gotten numb.  When I told him it had not gotten numb at all, he stated that he thinks he may not have gotten into the nerve and so it was decided that he would do another one at yesterday's appointment to see if it works when he gets into the nerve.  He kept me at the appointment for a bit after the injection to see if I had any sensory changes after it.  While my leg didn't necessarily get really numb, the hypersensitive area did become a bit less sensitive and (although painful) I could actually tolerate having the doctor touch that area of my leg.  Also, my pain doctor decided to refer me to a neurologist in the same town as the pain clinic for me to have a consultation and a nerve conduction study to try to determine where the nerves in my leg (or possibly lower back) are mis-firing/malfunctioning.  Yesterday, I also had PT which went alright (painful, but okay . . . didn't have any big dizzy spells while I was there).  I am still struggling just to get to 90-degrees ROM at PT with the PT assistant pushing on my leg to bend it.  It's very painful and yesterday I had more trouble because there was an area (almost like a small knot) behind my knee that really hurt when the knee was bent (that had never happened to me before . . . hope it's not the start of another new problem  ::)).  A few hours after PT my pain was down to 8.5.  I was so tired that I spent most of the afternoon/evening laying down sleeping or watching TV.  Today my pain has varied between 8 and 9.  This morning I had an ultrasound to check my liver since my liver enzymes have been elevated on two blood tests done almost 2 months apart.  Not sure when I'll get the results of the ultrasound.  Once again today, I've been so tired that I spent most of the day in bed sleeping.  Not sure why I'm so tired. . . only thing I can think of is that being in so much pain for so long has just taken it's toll on me.  ???  Instead of seeing the pain doctor again tomorrow (as had previously been scheduled), I have an appointment with the neurologist (my pain doctor made sure that I got in really quickly with this neurologist for an appointment).  My dad is taking the morning off of work so that he can go to that appointment with me.  My pain doctor wants me to have the neurologist call him while I'm at the appointment to tell the pain doctor what he finds, so that my pain doctor doesn't have to wait 2 weeks to get the report.  I have an appointment to see my pain doctor again on Friday.  I'm hoping that this appointment with the neurologist tomorrow will give us some answers and will guide the pain doctor regarding a treatment that will work for me.  Anyways . . . that's all I have for an update for now.

DONNA - Thank you for your encouragement!  I'm glad you liked the quote.  I enjoy finding new quotes and collecting them, so if you like them also I can pass them along to you as well.  Just let me know.  Also, thank you for the reassurance that Someone is looking out for me.  As much as I know that is true, it is sometimes hard to remember and see when in the midst of all of this pain and struggles.  So, thank you for the reminder.  I hope that you are doing well and that your appointment with the specialist goes well on Thursday.  Please keep me updated.  Did you manage to get through this Nor'Easter that came rolling through alright?  My parents' house suffered a bit of damage (a section of the backyard fence blew off and a bit of the hot tub casing came loose) and we lost power for a bit, but nothing major or too much of a hassle.  I'm hoping that you didn't have too much trouble with the storm.  I'm looking forward to the nice weather they are calling for this weekend (Saturday is supposed to be sunny with highs in the mid-60's), especially since Saturday is the Districts level competition that I'm in.  I'm getting a bit nervous about the competition (mainly because I still have not gotten some forms in the mail that I need to complete by Saturday . . . hoping they get here in time), but it's nice to have something other than knee and pain problems to think about.  If I win at Districts (our District Director has already told me that she thinks I'm going to be the District Representative to the State Competition), I'll compete in State level competition south of Pittsburgh in June.  If I would be lucky enough to win State level competition, I would compete at Nationals in Reno, NV in July.  I don't necessarily think I'll win at States (provided I win at Districts on Saturday first  :)), but I'm going to do my best and enjoy the competition.  Anyways . . . enough about me and this competition.  I am keeping you in my thoughts and prayers.  Please take care.

SAUL - Thank you for the support and concern!  I am hoping that getting another opinion by seeing the neurologist tomorrow will help the doctors figure out what is going on and how to treat me.  I'm glad to hear that you are doing okay and are making progress.  Please let me know how things are going for you.  Did you get any kind of damage from this storm that we just had come barrelling through?  I'm staying out at my parents' house and they lost a section of their fence in the backyard and the wind damaged a bit of the siding on their hot tub, but otherwise we didn't suffer much damage here.  Lost power for a bit (and it blipped off and on for about another two hours later), but nothing major.  I hope that you got through the storm without much damage or hassle.  I'm looking forward to the nicer weather that they are predicting we will have by this weekend. :)  Thank you for keeping me in your thoughts and prayers and please know that I am doing the same for you.  Please take care.

LORRAINE - Thank you for your support and letting me know that it's okay (and I don't need to feel badly) to share my feelings even when I'm feeling down/negative.  Thank you so much!  As far as alternative therapies . . . I'm not sure if the pain clinic I go to uses any alternative therapies or not; but I may look into it if I don't get some relief soon.  However, I'm hoping that the neurologist will have some answers tomorrow that may guide treatment so I can get some relief.  I'll just have to wait and see.  I'm glad to hear that you had an enjoyable evening out (even if you had to pay for it later).  Sometimes we have to do things that may not be good for our bodies (as yours had to take some time repairing itself), just because it is good for our spirits.  Don't get me wrong . . . we can't abuse ourselves (I think we've all been "abused" enough with our knee probs  :-\ :P), but we also can't ignore doing things that make us smile/laugh and support our spirits.  I'm sorry to hear that your hips are hurting, but hope that they are getting better.  The stretching sounds like a good idea.  Please keep me updated.  You are in my thoughts and prayers.  Please take care.

CLAIRE - Thank you for the kind words and support!  Also, thank you for your understanding about me not replying to your emails.  However, I do appreciate getting them and knowing that you are thinking about me.  Please know that even though I cannot reply to your emails or post on here as often as I'd like, that you are still in my thoughts.  I frequently wonder how you are doing and hoping that things are going well for you.  I also miss our long emails about hobbies and just normal daily activities stuff (instead of always talking knee stuff) and our instant messaging.  I long for the day that I can get back to doing those things with you.  I'm hoping that I may soon adjust to the side effects of these meds a bit more.  One positive note . . . my PT and PT assistant commented yesterday that I did look a bit more like myself and not quite so out of it/loopey. :)  Dizziness was decreased a bit yesterday, but I was considerably more tired.  Hoping that I'm not just trading off one for the other (although I think I'd rather be really tired than so dizzy/loopey).  My Neurontin dosage was just increased yesterday afternoon (after PT), so I'm hoping that I can soon adjust to the new dosage and maybe get to be not quite so loopey again.  I've been rather dizzy once again today, but hoping that it will soon decrease again a bit.  Anyways . . . enough about me.  How are you doing?  How's Mike?  How's Bobbie?  How did things go today for your mom's birthday?  Were you able to take her out somewhere?  If so, where?  How did the cardmaking go?  What have you been doing with your new found freedom (driving again must be awesome after so long without it)?  Sorry for all of the questions . . . just realized how many questions I fired off at you all at once.  :P  Please know that you are in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 18, 2007, 05:12:15 AM
Hi Heather!  ;D Im glad your pain level dropped some today. Every little bit helps. Ill be anxious to hear from you after you see the neurologist tomorrow and see what he can offer. Maybe this will be the appointment you need to get you some relief. Ill be thinking about you.

Yes, I would enjoy you passing the quotes along. Ive always enjoyed them, and poetry as well. Just something inspiring about them.

The Nor'Easter really didnt affect us alot here. Yes, we had wind, rain, and flurries, but nothing major. Thank goodness. Im glad you guys didnt get it worse than you did. I think it was worse out that way. I am looking forward to the nice weekend as well. Sunshine!! ;D I think I remember what that is!! :D

Good luck with your district competition this weekend!! :) You will do just fine, I am sure. Definitely a great way to try and focus on something other than pain. I know how tough that can be.  You said that if you go to states, that it is south of Pittsburgh? Where at? Just curious. My neck of the woods.... ;D

I will check back tomorrow to see how your appointment went. I see my primary physician in the morning for a follow up for my asthma. Then, the joint replacement appt. is Thursday.  :-\

Hang in there.Ill be thinking good thoughts for you, as always.

DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: step on April 18, 2007, 10:52:01 AM
Good morning, Heather - it's great to hear from you, and to hear about improvement, even if it's a beginning. I think it matters a lot - your treatment will be more targeted, you did not have the dizzy spells, pain receded a bit.

I hope your appointment with the neurologist tomorrow will shed light on the mechanism of your pain - and on its causes.

I wish you good luck with the competition, and warmly wish you swift recovery. All these good thoughts and prayers for you, I think they help a lot :).

Weather-wise, you can envy us - it's been summer hot in Europe for one week now, I enjoyed warming up in the sun on the terrace the past days. I find the sun can sometimes soothe pain. It certainly helps me gain strength. But it's grey, rainy and cold again today. Well, back to normal April weather. We had no winter at all, so at least some spring?

Get well,
Lennie
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 18, 2007, 01:14:23 PM
Heather,

It is good to hear that your pain levels have dropped, even if it is a little, every little bit counts. The competition you are in is a great thing to help refocus your thoughts and at least for a short time try to put aside the knee. GOOD LUCK !! The weather here just like you has been absolutely rotten, We had everything high winds (50-60mph), 3 inches of rain, and just plain nasty and cold. We were lucky and had no problems and even if we did I was asleep for the most part. I will say that going to PT in this weather was not to nice. I could not hop quick enough to get inside. There were a number of trees that had come down, but that is about it. I have PT later today so my objective until then is to try and relax, sleep and some exercises. Did I say sleep? yeah plenty of that ...  ::)

Let me know how the appointments go and I hope that your pain levels drop, even if it is just a little!!

Take care and have a great day !!

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 18, 2007, 02:05:41 PM
Hello Heather,

Like the others, I think its great that your pain's gone down a little. Fingers crossed that this is a good sign! I also think its great that you're going to see a neurologist and that your pain doctor is going to talk to the neurologist right away. My doctor, physiotherapist and anesthetist often speak on the phone while I'm there, and it makes me feel great to know for sure that everyone concerned with the repair of my knees knows what's going on.

I'm ok at the moment, but really looking forward to doing a bit of very gentle yoga this afternoon after work. After being inactive for so long, and filling my body up with toxins over the weekend, I think a good stretch is really what I need. Plus, I'm treating myself to a week at the beach at the end of May, and I want to get myself looking a bit more toned!  ;)

Anyway, I have to go to work now,  :( which is not really my favourite place at the moment. Not because of any particular problems there, just because it makes me feel so exhausted. You're not the only one getting lots of extra sleep!  ;)

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on April 18, 2007, 02:14:00 PM
Hi Heather, great to hear that the pain has decreased, hopefully it will continue to do so. Its also good to hear that your getting sent to the right people quickly.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 18, 2007, 05:27:13 PM
hi heather!
im glad to hear you are starting to feel better,even if just a little,i hope it continues to each day and that it gets easier and less severe.
you can then get your life back!
i'm not too bad i suppose,we had a beareavment is mikes family yesterday so we're all feeling pretty down,i'll tell you more when i next e.mail you,bobbie is now okay,hes still on his tablets but they're working!
i haven't had time to do my cardmaking yet,im looking forward to having a go maybe later tonight but with all that happened yesterday i never felt like doing any.
well sorry this is short and sweet!
don't really feel up to typing much today but wanted to check if you were okay and whether you had posted,
take care and good luck at your appointment.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 20, 2007, 04:13:23 PM
Hi Heather,

I hope you are you doing ok as I have not heard from you. When you can, let me know what is going on, if you can.

My thoughts and prayers are with you   ;D

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 20, 2007, 06:14:45 PM
Heather....Just sending some good, positive thoughts your way along with a big smile and hug. I know this is a busy weekend for you. I hope you are feeling somewhat better. Please let me know .....

DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 21, 2007, 01:56:54 AM
Heather,

Just what Donna said. Hope all's well, and even if you can't write, I wanted you to see that I was thinking about you too.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 22, 2007, 07:54:54 PM
Hello All -

Sorry I haven't posted for a few days . . . it's been a tough/busy time.  However, yesterday went well, just really busy (will explain more later in this post).  Pain is 8 right now and that's the lowest it has gone in the past few days (ranges 8 - 10).  To catch everyone up on what's gone on . . . I saw the neurologist on Wednesday.  He was nice and seemed to be very knowledgable and thorough.  He spent an hour and a half in the room with me, talking, looking over my leg, and doing tests (nerve conduction study and EMG).  EMG was quite painful because the neurologist kept having to move the needles once they were in. :(  However, at least now, the doctors have the info they need.  While doing the EMG the neurologist just kept asking me if I had back problems or if my back hurt.  I told him "no", but he just couldn't believe I wasn't having back problems based on something he was seeing with the EMG. Although the neurologist was going to call my pain doctor while I was at the appointment, one of his staff people informed him that he was really behind schedule, so he said he would call the pain doctor later that day.  Before I left the appointment, the neurologist told me that he did not find anything specific (ie, no nerve entrapment) to explain the pain/symptoms I am having, but that there was "something" going on further up my back and he thought I should have an MRI of my back.  However, nothing was done or referred because he was going to talk to my pain doctor first.  I had PT later that day and it was rather painful.  Even with my PT really pushing on my leg to bend it (we were fighting to get 90-degrees ROM).  On my own, I could only get about 82-degrees ROM.  My PT expressed concern regarding how much my ROM has decreased since the pain/symptoms got really bad and that my ROM seems to be going backward at this time.  I've also realized that, although at the time I thought that the sympathetic nerve blocks (injections in my back) were doing no good, PT was less painful (and I seemed to be able to more easily get a bit more ROM) when I was getting the injections.  On Friday I had an appointment with my pain doctor.  He said that he had spoken with the neurologist about the results and that there was no nerve entrapment.  The pain doctor stated that the results supported that I have Causalgia/CRPS.  I asked about the neurologist having told me there was "something" going on further up my back.  The pain doctor stated that the neurologist had told him there was something going on at L3 and the pain doctor told him "Wow, you're good!  L3 is where I do the injections."  So, I don't have any problems with my back . . . it was just showing up like that because I had gotten those injections the week before.  The pain doctor discussed my meds with me and what was working or not.  At this point we kept the meds the same, but will probably be increasing the Neurontin a bit next week.  Also, once the rash clears, the pain doctor said I can go ahead and try the Lidoderm patches again if I'd like (I had already told him they were probably the one thing that seemed to help the most).  However, if another rash starts, I have to stop using the patches immediately and we will try some sort of spray to numb the hypersensitive area.  The pain doctor stressed to me the importance of me pushing myself in PT because PT is going to be the main thing that helps Causalgia/CRPS.  The pain doctor told me that if I'm not aggressive with PT, that a year down the road I'm going to be very upset with myself because it will just continue to get worse.  I discussed the sympathetic nerve blocks with the pain doctor and he prescribed for me to start getting them again next week.  Due to scheduling difficulties with my PT and PT Assistant, next week I will only receive 2 injections, but I will receive 3 injections each week for the following 2 weeks.  Hopefully, we can get this stopped so it doesn't get any worse and get it better enough for me to return to a "normal" life and work.  Tried to push myself really hard at PT on Friday, but still only got about 90-degrees ROM and it hurt even more!  Came home from PT on Friday and spent the rest of the day/night resting my leg and getting ready for young careerist competition I had on Saturday.

Yesterday, although I was struggling with the pain/side effect symptoms, was an overall good day.  I enjoyed going to a district meeting for a professional women's group that I belong to (my mom and another good family friend also belong) and competing in the district level young careerist competition.  I am happy to say that I will be representing our district at state level competition in June! ;D  It was also good to meet some new people and catch up with some old friends who belong to other local organizations in our district.  Although it was tough to deal with the pain, etc. and I was exhausted by mid-afternoon, it was great to get out and to do something that was not focused on my knee/CRPS stuff!  It also has been great to have so much sunshine this weekend!  I'm going to make sure I get out in the sun for at least a few minutes this afternoon (maybe on the porch swing if I can manage to figure out how to prop my leg up as it hurts too much to "dangle" it when it can't touch the ground).  I've just got to get some sunshine/warmth on me as I think it may help me to deal with the pain a bit better (or at least boost my mood).

Thank you all for the well-wishes, support, and positive thoughts!  It is greatly appreciated! ;D I hope you are all doing well and enjoying the weekend!  Please know that I am keeping you all in my thoughts and prayers.  Take care.

Heather

DONNA - Glad to hear that the Nor'Easter didn't really cause any trouble for you! :)  I posted in your message in the Calendar.  Please let me know how things are going for you.

LENNIE - Good to hear from you! :)  I am definitely jealous of the weather you were having (I would love to have had such sunshine and summer temps here)!  Glad to hear you enjoyed it while it lasted!  How are you dong?  I hope things are going well.

SAUL - It sounds like the Nor'Easter may have hit you worse regarding the rain (I don't think we got 3 inches here).  I'm glad to hear that you had no major damage from it!  Sleeping through it sounds like a good idea!  Sleeping sounds good to me most times lately. ;)  Maybe I should figure out how to take a nap in the sun this afternoon, instead of trying to sit on the porch swing. . . have to think about that one. ;)  Anyways . . . I hope you are enjoying the weekend and wonderful weather.  Please let me know how things are going for you.

LORRAINE - Good to hear from you!  How did the yoga go the other day?  Hopefully, the stretching has helped some.  Thank you for thinking about me!  I really appreciate it!  :)  How are you doing?  I hope you are having a good weekend and things are going well.  Please let me know how you're doing.

GARTH - Thank you for the well wishes!  How are you doing?  I hope your weekend is going well and that your knees are behaving themselves. ;)

CLAIRE - Thank you for everything! :)  I hope that you, Mike, and Bobbie are doing well!  I'm so sorry that you have had such a tough week.  Hopefully, next week will be better for you.  Also, were you able to start the cardmaking?  If so, how's that going?  Please let me know how you are doing. 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 23, 2007, 03:43:33 AM
Congratulations !!!        Congratulations !!!


I think the news from the docs is definitely a step in the right direction and that has to be a good feeling and a greater sense of direction. Although I personally equate a neurologist on the same level as Dr. Frankenstien only because of what you have to go through for them. I think that some of them actual enjoy seeing ther patients squirm and jump as they send little shocks through various parts of the body.

And it is great to hear from you. For my info just go to my post op diary !!!

I will talk to you later

Saul

Congratulations !!!
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 23, 2007, 12:31:08 PM
HI HEATHER!!
I HOPE YOU ARE OKAY TODAY!!
I'M SO GLAD THINGS WENT WELL FOR YOU AT THE MEETING AND THE APPOINTMENT YOU HAD!
IT MUST HAVE BEEN SO GOOD TO HAVE A GOOD DAY YESTERDAY AFTER ALL THE BAD ONES YOU HAVE HAD RECENTLY! I HOPE THERE IS MANY MORE TO COME!!
THINGS HAVE BEEN OKAY FOR ME TODAY AND WE HAD A GOOD DAY YESTERDAY TOO,I HAVE UPDATED MY DIARY AND LEFT YOU A MESSAGE IN THERE!!
THE CARD MAKING IS COMING ON WELL,I FIND IT VERY RELAXING AND GIVES ME A CHANCE TO USE MY ARTISTIC FLAIR! JUST WISH I'D TAKEN IT UP EARLIER!!
JUST DOING ODD BITS AND PIECES THAT NEED DOING IN THE HOUSE TODAY AS I GO BACK TO WORK TOMORROW,I FEEL PRETTY APREHENSIVE ABOUT IT BUT GUESS ITS NOTHING TO SOME OF THE HORRID STUFF YOU HAVE BEEN THROUGH AND COMPARED TO THE CRAPPY WEEK I HAD LAST WEEK!!
TAKE CARE HEATHER!
YOU ARE STILL IN MY THOUGHTS AND PRAYERS AS ALWAYS!!
CLAIRE X
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 23, 2007, 03:01:03 PM
Hi Heather,

That's great news, about your young careerist things and also that it seems like you are beginning on the road to recovery. I think its amazing that the neurologist knew there was something going on in your lower back, and it was exactly where your injections are! Medical technology is truly amazing! And I guess it speaks for the skill of your neurologist too, which must be reassuring.

Nothing connected with my knee, but I've been having a rough time here lately, both with things to deal with here in Colombia and at home in Australia. I've been quite stressed out, and am noticing a lot of pain in both knees, my hips and right foot. I still have to concentrate to walk, and since I'm so distracted by all this other rubbish I find my knees are giving out on me a lot. Today I have to do a lot of running around to try to sort out a lot of these little dramas going on, and I'm trying to figure out how to do it the most efficiently so as to keep the stress off my knees. The last appointment for the day is to the dentist, which is harrowing enough, but I absolutely hate doing that in Spanish!

After a month of not seeing him, on Friday I'm going to the OS for my first hyaluronic acid injection into my left knee. I can really feel that my knee is ready for them, and while I don't really like the procedure, I can't wait to have more fluidity in my movements. I'm also going to ask him about my hip and right foot. I'm sure its just my new posture and too much work while I'm not fully strong enough, but its always good to check.

Anyway, I'm glad that things are moving forward a little for you.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 24, 2007, 02:13:07 AM
Hello Everyone -

I hope that today is going better for all of you, as last week seemed to be a nightmare of a week for most!  I'm hanging in there.  My pain right now is an 8 which is pretty much where it has been most of the day and is the lowest it's gone in a week or so.  I had to have a sleep study done last night.  My GP ordered it . . . I think he did so due to my falling asleep with no warning and he just wanted to check to see if it was from my meds or from something else going on as he is trying to figure out why my liver enzymes have been elevated and such.  I think my GP and all of my other doctors are trying to get "on board" with each other and look at the whole picture to treat me instead of each one just treating one symptom and such.  Anyways . . . the sleep study was alright, but I didn't sleep too well with all of the wires hooked up to me.  Therefore . . . once I came home this morning, I spent a good part of my morning sleeping.  Hopefully, they don't find anything wrong on the sleep study and I won't need to go back for the second night of the study (where they would test me with different types of treatment machines to see what worked best).  I'll know in a few days.  If I have to go back, it'll be this Friday night.  It's good to know that all of my doctors are trying to work together to see the whole picture and know what each one is doing.  However, I'm really tired of going to doctor's appointments and getting tests done.  I have been blessed though to have a bunch of really good doctors and that does make me feel a bit better about having to go through all of this.  I start getting the sympathetic nerve block injections in my back again tomorrow and then go straight to PT.  Although the injections are most definitely not pleasant, PT is easier after getting the injections and since the pain doctor tells me that PT is going to be the main thing that helps my condition I'm going to put up with the series of injections (8 injections are presribed on the most recent script). 

Anyways . . . enough about doctors, medical tests, and such.  I was able to get outside and enjoy some of this wonderful weather we've had this weekend and today (high today was in the mid-80's ;D).  However, couldn't sit on the porch swing.  My dad informed me that the swing was broken, so I just stood outside on the porch for a bit with my crutches.  My dad says he's going to set up a lawn chair on the porch for me so that I can enjoy the sunshine until he can get the swing fixed. :)  Other than that, I've spent some time paying bills :P, watching tv, doing some home exercises for my knee (as much as I could tolerate :(), and working on some stuff for a local women's group I belong to (the group that does the young careerist competition).  I'm trying to get things organized and some topic ideas selected for next year's meetings as I'm set to be installed as the local organization president for next year! :)  I'm rather excited about this as this group does a lot of good stuff for people locally, as well as on the state and national levels!

SAUL - Thank you so much for the Congratulations! :)  I can understand how you could equate a neurologist to Dr. Frankenstein. ;)  I didn't mind the shocks (nerve conduction study) too much.  What I didn't like was the EMG because the Dr. had to stick needles all over my leg and then, in some cases, move the needles around once they were in my skin.  Ouchy!! :(  At least it's done and the doctors now have a better idea of what is going on or not and so are better able to focus the treatment properly.  It was good to hear from you and I will check out your post-op diary when I am done typing this message.  Please know that I'm keeping you in my thoughts and prayers.  Take care.

CLAIRE - Thank you for everything!  It's good to hear that today has gone better for you!  I hope tomorrow goes well also!  I can understand being apprehensive about your return to work, but please know that we're all here pulling for you.  I definitely have a long way to go, but it was good to have the last few days go a small bit in the right direction. :)  I think the extra sunshine helped a bit too. ;)  I'm glad to hear that the cardmaking is going well and helps you relax!  I too wish you had found it earlier, but at least you have it now. :)  I've replied to your post in your ROM diary.  You are in my thoughts and prayers.  If you ever need anything, don't hesitate to ask.  Please take care.

LORRAINE - Thanks for the congratulations and positive words!  I too, find it amazing that the neurologist could tell there was something going on with my back at the exact spot where the injections were being done!  I know that it seemed to impress my pain doctor when the neurologist identified the exact spot without knowing previously that the injections were being done there.  It definitely makes me feel more confident in the skills of the neurologist! :)  I'm sorry to hear that you are having such a rough time lately. :(  If there is anything at all that I can do to help, please let me know.  I'm here for you in any way that I can be.  I've posted a message to you in Claire's ROM diary.  I can't imagine having to go to the dentist and speaking in different language.  There's no way that I could do it in Spanish (I don't even think I could ask where the bathroom is in Spanish).  I took French in school and wouldn't want to try to go to the dentist having to speak French!  My best bet would be to try to use sign language.  American Sign Language (ASL) and English Sign Language (ESL) would be my best second language at this time.  Anyways . . .that got a bit off the topic.  I hope that everything went well with the dentist and that everything goes well with work and with the OS appointment later this week.  I've never even heard of that kind of injection in the knee, unless there's a different name for it here in the States.  Question for you (just curious and don't feel like you have to answer if you don't want to) . . . how did you end up in Colombia when you are from Australia?  I just find it interesting how people end up moving so far from home (I've never lived more than about 150 miles from where I was born).  Anyways . . . I hope that you have a good week.  Please let me know how you are doing.  You are in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 24, 2007, 04:41:20 AM
Hi Heather!!  :D I definitely agree that it is a good idea that all of your doctors are trying to get on the same page as they investigate everything that has been going on with you. Its better that way. Im glad your pain has been a little more bearable, and that you were able to get outside some more today. I love this beautiful weather, although I hear a few "thunder boomers" out there right now. ;D Good luck with your injection tomorrow. I had those. Had 3 of them. Didnt have PT right afterwards though. Do they give you a sedative first? They put something in an IV for me that just relaxed me. Not the most pleasant experience in the world, but if it helps you, even a bit, its well worth it.

Im hanging in there. Cortisone shot did nothing. Not surprised. Will wait another week or so, then reschedule with specialist and then go from there as far as scheduling my surgery. Probably mid June, Im thinking. I want to wait till kids get out of school. Have PT tomorrow for first time since my consult, so can fill them in on everything, as well as give them new script for PT. Should be interesting.

Just took tylenol pm. (Surgeon wants me to avoid narcotics so that pain meds will work for me post op) Hoping they take effect soon so I can sleep. Knee is not very happy at the moment. Lol.

Let me know how things go tomorrow. Thinking of you as always....

Donna :D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 24, 2007, 09:04:23 PM
hey heather!
thanks for your post in my diary!!
it was great to hear from you!! i have updated how my day at work went in my diary!!
i am SO tired now!! i was not too bad earlier but we have just been out for tea (me and mike) to discuss our days and now i am home and we have the heating on (its horrid and cold here!!) it is starting to make me feel really tired!! i slept pretty terrible last night!!
the funeral was today for mikes nan so i felt pretty bad that i could not go with mike but i did not want to over stretch works leave they have given me and paid me in full for (except this last week but they gave me it as a holiday so in never lost no money)
i hope you are doing okay today,i will send you an e.mail later in the week or possibly saturday to tell you in oe detail how things are going here!!
take care heather!
thinking of you and hope you are getting on okay.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 25, 2007, 12:57:23 AM
Hello Everyone -

Today has gone alright for me, nothing particularly great but nothing particularly horrible either.  I started getting the lumbar sympathetic nerve block injections again today and followed it with PT.  My pain doctor informed me today that when I do pool therapy it will have to be 24-48 hours after I get an injection (I can't let the injection site soak in any kind of water for 24 hours after the injection in order to reduce the risk of infection).  Therefore, it looks like I will probably be doing PT 4 days a week (starting in the next week or two probably) since I will be doing pool therapy (at least 1 day per week) and getting the nerve block injections in my back followed by PT 3 days per week.  Boy, I'm glad that I have unlimited PT on my insurance or this would cost me a fortune! ::) :P  I also asked my pain doctor if there was anything to read about my condition that he could recommend for me or for me to give my family so they can understand it better.  My parents seemed to have the idea that after getting 2 or 3 weeks worth of the injecitons in my back (followed by PT) that I should be cured/all better.  However, I understand that CRPS does not work like that.  I just was looking for something to show them so they could get a better understanding of it and want to be able to tell them that the doctor recommended the reading (so they know there's some credibility to what they would be reading).  Anyways . . .my pain doctor gave me a pamphlet about the lumbar sympathetic block injections and printed something off the internet for me about CRPS.  He also showed me a list of organizations dealing with CRPS that have websites.  I think I'm going to take some time tomorrow (since I don't have any appointments or anything) to print off some info from the different websites.  I'm the type of person who likes to be as educated as I can be about conditions that I have or treatments I'm receiviing.  However, the main thing I'd like to do is have something to show my family so they can possibly try to understand CRPS, what I'm really going through, and the uncertainties regarding prognosis.  I know they believe me and see (at least somewhat) what I'm going through, but don't think they actually understand how painful CRPS is . . . they seem to think I have a low pain tolerance.  They don't believe me when I tell them that researchers have found that CRPS is more painful than most anything else (including childbirth, etc.).  Anyways . . . I'm not trying to sound like "poor me", I just wanted some info to try to help them understand CRPS better.

Pain level is still about an 8 (was an 8 before the injection and then got more painful during/immediately after PT, and then went back down to an 8 the rest of the day).  The injection was definitely not pleasant (in fact . . . it was a bit more painful than I remember them being the last time I got one about 1 1/2 weeks ago).  I just kept looking at a picture of my nephew that I took with me to the appointment today to try to distract me (my nephew -or pictures of him- can always make me smile).  Even having the picture to look at and somewhat distract me, the injection was rather painful.  However, I was able to do a bit more in PT after the injection than I had been able to do in PT the last 1 1/2 weeks.  Still struggling and VERY painful to get the knee to bend to the 90-95 degree ROM range though.  I don't know exactly how far we got today, but PT Assistant estimated that it was around 90-95 degrees ROM.  If I think about it, I'm going to ask them to do an actual measurement of my ROM at my PT appointment on Wednesday so that I can try to keep track of how it's going.

DONNA - It was so good to hear from you! :)  To answer your questions about the injection . . . no they don't give me any kind of sedative first.  I don't even have an IV when they do it.  I'm not allowed to eat or drink anything for 2 hours before the appointment.  They have me lay on the table face down in the OR of the doctors office (Surgi-Center) and they clean the skin.  Then the doctor warns me that there's going to be a "sting" and he sticks a needle in my lower back.  He injects some sort of anesthetic through the needle and then some sort of contrast dye.  Using the contrast dye and X-Ray (fluoroscopy) he makes sure he has correct needle placement.  He then moves the needle around some until it's in the correct spot.  Once it's in the correct spot, he injects the medication to actually block the sympathetic nerves.  Then they clean off my back, put a band-aid on the injection site, and I walk (using my crutches) across the hall to the exam room.  Then they monitor my blood pressure for at least 30 minutes (if blood pressure changes too much from what it was before the procedure, I have to stay longer for observation).  Sorry for the long explanation and if it's more info than you wanted, just figured this way you (and anyone else reading this) would have a clearer idea on the way the injections are being done.  Sorry to hear that the cortisone shot didn't help.  Hopefully, the specialist's office is able to get you in soon.  I know that desire to get everything done before you have a big surgery that will lay you up for a while, but try not to overdo it in the meantime.  I hope PT went well for you.  Please continue to keep me updated on how you are doing.  You are in my thoughts and prayers.  Please take care.

CLAIRE - It was good to hear from you! :)  I hope that you are able to get a good night's sleep!  I've posted a message to you in your ROM diary.  I look forward to getting an email from you later this week or over the weekend letting me know how you are doing and how things are going where you are.  Please know that you are in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 25, 2007, 02:20:18 AM
Hi Heather,

I've always been curious about those sleep studies. I had a friend once who had a weird sleep pattern, and they gave him one. I've seen them on tv, and always wondered what it would be like, but unfortunately I very rarely have sleeping problems! Its one of the few things that I'm grateful for when I'm ill. I guess I'm very lucky.

Why don't you make a ROM chart? That way you can track it (I'd go for using gold stars, but I'm funny like that) and use it to motivate yourself.

I think its a great idea that you give your parents some literature about your condition. People keep asking me about my knees, and are so surprised when I tell them its going to still be a few months before I'm 100% again, and it kind of frustrates me, makes me feel like they think my time for being asked how I am is expiring. Some members of my family didn't even bother to call or email after my operations, and I wish I'd sent them some information beforehand so they knew what I've been going through. I think they thought it was just like having your appendix out or something!

As for why I live here, I'm kind of here by accident. I would prefer to be living in Mexico City, but I have a good job here just now and will probably go back to Mexico next year. The very short answer about why I don't live in Australia anymore is that I'd always wanted to live in another country, love speaking Spanish and fell in love with Mexico long ago. Colombia is a pretty nice second, but that's not to say I don't miss Australia quite often, especially having close friends around.

I'm going to look over in Claire's ROM diary in a minute, but I thought I'd answer your questions here first. The dentist went ok, I managed to walk there and back without too much pain. When I got there he told me he doesn't usually have appointments in that office on Mondays. Then he looked at my teeth, told me they were ok. I have to get the chip fixed, but there's no rush, so I can wait until I don't have so much knee stuff to deal with. Then he didn't charge me, because he didn't actually do anything! How good is that? He said a few things I didn't understand but I clarified everything and he was nice and patient with me, so I'll be going back there to get the chip fixed.

My knee injections are designed to help increase the amount of synovial fluid in the joint. The name here is Dropyal, but I think it might be Hyalgen or Synvisc in the US. I've always been pretty bad at knowing the names and ingredients of medications. If I have to take them, I just get through it, and then forget it. I especially hate anti-biotics as they upset my stomach way too much.

There were a few minor disasters at work today, and I still don't feel overly positive towards the student who was being so aggressive with me, but he's calmed down a bit. I don't like feeling so negative about something that I generally really enjoy doing, but its part of the job, and I'll just have to build a little wall around me so it doesn't get to me. I really find that my stress threshold is a lot lower now after going through all of this knee rubbish. Thanks for your offer of help, its nice to have some people to vent to.

I think its great all your doctors are working together, and let's hope they can work out how to get you more mobile soon!

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 25, 2007, 06:30:41 PM
Hi Heather....Just checking in. Does sound like you have made some progress. The injections you are getting are administered very similar to the way mine were, except they put verced or something in an IV beforehand to relax me. They do that routinely here.

I think that you requesting information for your family is an excellent idea. It will help them to be able to better understand and help you. The more they know, the better for all of you, you know? And researching and printing it out is a wonderful idea as well.Your pain is real. You have been through so much. You dont sound like you are saying "poor me". When you hurt, you hurt. Do whatever you can to educate yourself and your family so that you can feel better.

Always know you are in my thoughts and prayers. Ill look forward to hearing fromy  you soon.

DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on April 25, 2007, 08:59:20 PM
Hi Heather,

It looks like your seeing some improvements from what I'e read. I initially came here looking for info on LRs as my physio had suggested the I may need something like that to sort the misalignment in my knee. I think I can count myself lucky with regards to info on some of these things as I have an uncle who has had load of work done on his knees over the years. I cant say that those injections sound like much fun. I'm never really been bothered by needles but I'd probably be uncormfortable having something stuck in my back.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 25, 2007, 10:23:05 PM
Hi All -

Nothing much to update today.  Pain is still 8 for most of the day and ranges from 8 to 10 at various times thoughout the day.  I've had no appointments today, so I've just spent the day at home (actually my parents home . . . still haven't managed to get back to staying on my own in my own apartment yet).  I've basically spent the day sleeping, watching TV, researching info on the internet (looking at organizatons my pain doctor suggested for info about CRPS), talking with various family members on the phone, doing some home exercises/desensitzation (as much as I could tolerate :(), and watching the rain.  One good note . . . I got a call from someone at the hospital regarding my sleep study . . . she said the doctor looked at my results and there's no need for me to go in for the second night of the sleep study! :)  THat means that I don't have sleep apnea and don't have to learn how to sleep with a CPAP machine! :)  Anyways . . . that was my best news of the day!

LORRAINE - It was good to hear from you! :)  I usually don't have problems sleeping either . . . I've just had problems with the pain in my leg waking me up after the knee surgery and now with the CRPS stuff and have had some weird sleep things happening due to my meds for the CRPS pain.  I'm glad that the doctors are trying to be on the same page with each other and check everything out, but I'm also glad that I don't have to go back for a second night at the sleep study. :)  As for the ROM chart . . . I had a smaller one that I carried in my purse after the surgery but I stopped charting it after being in the hospital last month.  I like your idea of using gold stars (I think that's the teacher in you coming out ;)).  Maybe I can give myself a star for every day that ROM progresses and then after say 5 stars I can treat myself to something like renting a movie or getting some new crafting supplies.  I'll have to see what I can think of.  It will kind of feel like I'm back at work because part of my job entailed creating behavioral charts and such for the kids that I worked with. ;)  It will kind of feel strange creating a chart for myself.  I'm sorry that you had family members who were not there for you after your operations.  I feel very lucky that while I had some family members who did not understand the surgery I had, they were still there for me and called to see how I was doing.  My family members had an easier time understanding the surgery/recovery than they do with understanding CRPS.  That's why I'm researching info (from organizations recommended by my pain doctor) to share with my family.  Not to mention, just so that I can be even more educated about it (ie, other treatment options, etc.) and find support groups of people who also deal with CRPS.  I admire you for being able to choose to live in another country! :)  Hopefully, you will be able to return to Mexico next year!  I'm glad that you were able to figure things out with the dentist and that he didn't charge you for the visit! :)  Also, glad to hear that there's nothing wrong with your teeth other than the chip.  I can understand wanting to wait until some of the knee stuff calms down before messing with getting the chip fixed.  I have a tooth that I need to get a porcelain crown (permanent crown) done for, but I've been waiting for some of the knee stuff to calm down also.  I have a silver crown (temporary one) on that tooth (last molar, so no one else can see it), so there's no rush for it and I'm still planning to wait a bit longer to see if the CRPS stuff can calm down some more first.  I've heard of Synvisc injections, so that may be how it's marketed here in the U.S.; but I've never had to get such an injection in my knee before.  Good luck with the injections! :)  Also, good luck with all of the job stuff!  I've posted a message to you in Claire's ROM diary about it.  I can understand when you say about your stress threshold being lowered while going through this knee stuff . . . I think that's a common reaction when going through any kind of long-term health difficulties.  Please know that you are in my thoughts and prayers.   Take care.

Heather

DONNA - It was good to hear from you! :)  It's also nice to know that the injections are done similarly (other than the fact that I don't receive any kind of sedative first).  Thank you sooo much for your validation of my pain, what I'm going through, and that I don't sound like "poor me"!  I really appreciate it! :)  I've posted messages to you in Sterns and Claire's diaries.  Please know that you are in my thoughts and prayers.  Take care.

Heather

GARTH - It was good to hear from you! :)  I've posted a message to you in Claire's ROM diary.  I'm glad that you can count yourself as lucky regarding some of these knee things.  Hopefully, the doctors will be able to sort out what's going on for your knee soon and that the MRI will get moved up.  I have a hard time imagining having to wait that long for an MRI.  I know that my MRI was scheduled rather quickly even for being in the States (I injured my knee on Oct.16, went to ER on Oct.19, saw OS on Oct. 20, had MRI on Oct.25, and got MRI results on Oct.30), but I don't know anyone near where I live who has had to wait as long as you are having to wait for an MRI.  Good luck with everything.  Please keep me updated on how things are going for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 25, 2007, 11:27:53 PM
Hi Heather,

Today was much better at work, not least because I only have one class on Wednesdays. I had the type of really heavy sleep last night that feels like you're being dragged up from under the earth when you wake up. Unfortunately one of the times I woke up was when my left kneecap cracked for the first time ever since the op. I know its normal, and the pain when that happens will lessen, but when my right knee used to do it after the first op, it was mainly at work and it was easier to deal with when I was awake. It also started a lot earlier after the first op. I guess its just another thing for me to ask the doc on Friday. I'm thinking a lot about what I need to ask him, and mainly its just the various crunching sounds that my lower body is producing these days I need to know about, but also I think I'm going to ask if there's any point in keeping my bicycle. I bought it a week before my first operation last August, but haven't been given permission to ride it because he knows I ride only on the streets and rather maniacally and also because of all the cartilage damage I had. I also will have the opportunity to go horseriding at the end of May, and I know at the moment I don't have the strength in my left leg to get up on the horse, but it would be nice to know I can go if there's someone to help me up. I'm not a big horse rider, but it would be sad if I can't do it anymore. I can see I'm in a similar place to where I was about 5 months ago, where I was realising how my activities need to be adapted and feeling a bit sad about that. I've dealt with lots of other types of loss, but this loss of physical ability is something I struggle with.

There's not much news, I feel like I'm holding my breath for Friday, partly because the knee jabs take a lot of effort not to yell over, and also because of the questions I have. Tomorrow I'm working very hard and I have an official meeting with my boss for my yearly performance review, so this afternoon I'm just enjoying resting on the sofa as I think the next two days will be a bit of a challenge!

Anyway, that's great you don't need to have the second night on the sleep study, and good luck with the research. I wonder if there's a CRPS forum, or is it too rare?

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 26, 2007, 12:23:10 AM
Heather,

I just wanted to check in and want to give you some good vibes these days  :o. So far the week seems to be moving in a positive direction for both of us. I am sorry the pain levels are hovering around 8, but I still think, from what you have aid, that there is a very good possibility that relief is in sight. I have a friend who did a sleep study and he ended up getting sick from some of the things they gave him. Therapy can be a tough one to work with, but sometimes pushing yourself a little harder can be a benefit. I say that because some of things I have to endure is to prevent the problems associated with scar tissue. The other to, is always keep the small steps and accomplishments at the top, kinda like positive reinforcement. And to hear that you had rain  :-[, we need it really bad. Your not that far away, but like I said they call for it, the skies grow dark and the next minute later the sun is back out. For me, it still takes a lot of effort to go to therapy, especially when you what is going to happen and how you are going to react, feel and the tears start coming out.

Just remember you are in my thoughts and prayers and I have to tell you that you have given me a lot of strength with your postings and thoughts. I hope that I can continue to do the same  ;D   ;).

I am gonna update my post-op diary cause this is your space, but I will talk to you later.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 27, 2007, 10:47:07 PM
hey heather!
how are you today!
i feel abit fresher after a little nap!
boy i m so-ooooooooo tired this week after going back to work,i never dreamt it would wear me out so much!
he he! i have lost my stamina now im in my 30's!! LOL!
how are things going for you today?
i hope the pain levels are coming down still and you are starting to get some relief after all these weeks of suffering,i've left you a reply in my diary earlier aswell!
take care heather and im thinking of you!!
Claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 28, 2007, 12:43:25 AM
Hello All -

I hope that everyone is having a good Friday and a good start to the weekend! :)  My day has been pretty much same old, same old.  Nothing major great or bad is happening.  My pain continues to be an 8 most of today, but ranges from 8 - 10 at various points throughout the day/night.  I'm glad that the pain is down to being an 8 most of the day, but wish it would continue to decrease.  I'm not sure how much longer I can stand it being an 8 or higher.  I'm hoping that the meds, injections, and PT will soon get the pain to decrease even further.  However, I'm trying to remind myself to be thankful that the pain is an 8 most of the time instead of a 9 or 10.  I had no appointments today, so have just spent the day at my parents' home doing basically the same things that I was doing on Wednesday (see my previous post).  I got an injection and went to PT yesterday.  During PT, I was able to get a bit more done as far as repetitions of certain exercises. :)  However, my ROM was only 91-degrees when the PT Assistant was pushing to bend my leg to the point that I was on the verge of tears. :(  Since the CRPS stuff really flared up, my ROM seems to be stuck around 90-degrees.  I'm not sure what I can do to improve the ROM and I cannot get 90-degrees on my own (especially not when I'm standing and try to lift my leg up). :(  I'm hoping that by continuing with the injections and PT that my ROM will soon start improving.  I want my life back!  I want to get back to work and other activities I enjoy like bowling, swimming (I'm hoping to start pool therapy within the next 2 weeks or so), hiking, etc.  According to paperwork my pain doctor filled out for my short-term disability, it looks like he expects that it's going to be at least another 2 months before I can return to work! :(  I hate this!  I hate having to sit back while life passes me by, be dependent on others for things (ie, driving me to appointments, etc.), and feel like I'm not able to be a productive citizen now! I hate this! I hate this! I HATE this!!!!! >:( :( >:( :( >:( :( :'( :'(  Anyways . . . sorry for the venting.  I really didn't intend to vent like that in this post.  I guess I just needed to get that out.  However, being upset and angry isn't going to help me get my life back.  I'm going to take the meds as my pain doctor prescribed, get the lumbar sympathetic nerve block injections, be aggressive with physical therapy, do my best to tolerate home exercises/desensitization, and try to focus on small positive steps.  I'm also going to do my best to be an educated patient, so that I can know what questions to ask my doctors and participate as fully as possible in my treatments.  I also need to remember to mention to my pain doctor next week that my mom noticed last night (while changing band-aids for the injection I got yesterday) a stripe-like bruise on my back near where I get my injections.  She hadn't noticed the bruise on Tuesday night when she changed band-aids, so we're not sure if it's from Tuesday's injection, yesterday's injection, or something else.  However, I think that it might be something worth mentioning to the doctor (and either way . . . it can't do any harm to mention it).

Anyways . . . right now, sitting here at the computer desk, I can hear the birds singing outside and it helps to lift my spirits some.  The signs of spring (birds singing, grape hyacinths blooming, etc.) are cheerful and remind me that even after things seem so dreary and dead that they can come alive again and be beautiful.  I try to remember that and grab hold of the hope that there may be a "spring" for me also and that there may be some hope that the dreariness of CRPS isn't necessarily going to rule the rest of my life.  It's hard to hold onto that hope that things may get better when the pain has been so high for so long, but I'm trying to remind myself to hope and am trying to use the birds singing outside as a reminder of that hope.

LORRAINE - I'm glad to hear that work went better for you on Wednesday! :)  I hope that you had a good day Thursday (albeit a busy one) and today with work!  I also hope that your OS appointment went well today!  I can understand being startled/concerned/upset when your kneecap cracked in the middle of the night.  I also agree that it is easier to deal with those creeks and cracks during the day, instead of when they wake you up at night.  What did the doctor say about the noises your knee is making?  What did the doc say about the bike?  about the horseback riding?  I'm hoping that the doc gave you some hope about being able to use your bike and go horseback riding in the future.  I can relate to the worries about what you may or may not be able to do.  I'm struggling as well to deal with the loss of physical abilities at this time.  If you ever need to talk, I'm here for you.  Feel free to post on here, or send me an IM if you would prefer not to have it out there for anyone else to see.  As I said, I'm also in the midst of struggling to accept the physical limitations/changes that I have to make in my life and so I can relate to what you are going through.  To answer you question . . . I'm still researching some of the foundations/organizations on the paper my pain doctor gave to me (and am finding some good info), but I have not found a CRPS forum as of yet.  However, I've only gotten about half way through the list, so I'm still hoping to find some sort of forum for people with CRPS.  Please let me know how you are doing.  You are in my thoughts and prayers.  Please take care.

Heather

SAUL - It has been great to hear what wonderful things you have been able to do this past week and it's as though I can "hear" a positive attitude change in your voice!  That's just sooooo awesome!!!! ;D  I thank you for your support and encouragement! :)  It is greatly appreciated! :)  I'm sorry to hear that you have to endure things to prevent scar tissue.  Hopefully, it is working for you.  How has the end of your week been going?  I know from your post on Wednesday that you still had not gotten any rain.  Has it rained there at all since Wednesday evening?  We got some more rain last night, but it doesn't seem to have rained anymore today.  In fact, the sun was out this afternoon; but it was too chilly and windy for me to enjoy being outside.  However, I did enjoy sitting on my bed (it sits in the corner of the room with three windows on the walls above it - 2 on the front of the house and 1 on the side) and looking out the window at the flowers and animals for a bit today.  Please let me know how you are doing and if you have any big plans. ;)  Also, I'm glad that you at least broke even with the poker game and enjoyed spending time with your friends! :)  Please know that you are in my thoughts and prayers.  Take care.

Heather

CLAIRE - Thank you for your support! :)  I'm glad to hear that you survived your first week back at work, but sorry to hear how tired it has made you!  I think the stamina just goes along with everything else now that we're in our 30's. ;) LOL!  Good thing for a nap . . . that way you're ready to go for the weekend.  Do you have any plans for this weekend?  I don't have any plans for tomorrow, but am planning to go with my mom to visit my grandmother and great-aunt (they live about an hour away) on Sunday.  My mom is going to be giving them haircuts and a perm and I'm just tagging along for the visit to sit there and talk while she does that.  I look forward to getting an email from you sometime this weekend.  Also, I've posted a response to you in your ROM diary.  I continue to keep you (and Mike, Bobbie, and your families) in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 28, 2007, 01:24:06 AM
Heather,

I can certainly understand how you feel about many things, but I have to say, despite how things seem to be on a change for the good, you still sound better !!!!!!! Sometimes it is hard to see from within, but you do sound (and feel) more positive the last week or so. I am doing pretty well, it was good to see everyone, but it really took its toll on me. I was sore and ver tired today. I need to find a way to sleep comfortably. We did finally get some rain last night for about 30 minutes and thats it !  PT is tough and it will continue to get a little tougher and that is a sad fact that we all know, but sometimes do not want to acknowledge. But listen, while I have been and around I noticed some things, I am going to put in post-op. But I am tired and would love to find a good night's sleep.

Take care and we will take again !    ;D  ::)

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 28, 2007, 01:58:41 AM
Saul -

Thank you soooo much for the encouragement! :)  It helps to have someone point out how I seem/sound to them because it is hard sometimes for me to notice the change.  Sometimes it's like the good things (or bad things, i guess for that matter) happen so gradually that I have a hard time noticing the difference. So . . . thank you for pointing out the positive change you've seen/heard in me this past week!  It is greatly appreciated!  I'm sorry to hear that the poker night with your friends took it's toll on you and that you've been having a hard time finding a way to sleep comfortably. :(  Just curious . . . do you use a pillow between your good leg and the brace when you sleep?  I found that I could (at least some nights) get comfortable sleeping on my side with a pillow between my good leg and my immobilizer.  You may already be trying that, but if not it might be worth a try.  Anyways . . . I should get going.  I haven't even eaten dinner yet.  I hope that you have a good evening and are able to get some good sleep.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on April 28, 2007, 02:03:18 AM
I think I just missed you !!!!!!!!!  I am not wearing the brace at night and have been trying to elevate the leg at night. I will try what you said this evening. Check out my posting !!

 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 28, 2007, 02:19:18 AM
Hi Heather,

I agree with Saul, you do seem a lot more chirpy this week. I think the frustration is part of recovering, maybe its a way for our psyche to push us to not give up, to keep fighting against the things getting us down. I bet you can be a productive citizen while you're incapacitated, in fact, I already think you are in the way you help all of us here. Is there something you can do connected with your work, but online and in your own time? Or if you can get out and about a little bit, how about visiting people in a nursing home or something like that? Something where you don't have to move too much, but that gets you out of the house. Or, and this is something I have to remind myself to do, give yourself permission to use this time to heal yourself, for you to come first for a while and to do everything it takes for that to happen. I really struggled with that in the beginning and had problems with letting go my expectations of how I should be, but its turning into a great investment, as from end to end, this process will be 12 months of me looking out for my needs and I can also see really positive benefits both with my self and how I relate to others. I don't mean to totally disregard everyone else, but to learn to say no, and accept that just for now you have some limitations which mean you have to live and behave in slightly different ways.

Thursday was crazy busy at work as usual, and I also had my yearly performance evaluation, which went very well. I'm glad that I made the decision to extend my contract for another year. I'm staying primarily because I'm too mentally exhausted to move on, but I do like it here too. Today was busy at work too as I had a training session to attend after my class and then the doc's.

I told the doc about my severe back/hip/leg pain two weeks ago and he looked at my spine and posture in general and said my spine is slightly curved. Its nothing to worry about, but that the inactivity and long days sat at work just exacerbated it, and that I'm to keep up my yoga (which is very good news, I'm always afraid he's going to tell me I have to stop that) and also to get to the pool when I can. I told him how I've been sleeping 10 hours a night and waking up tired and he wasn't worried about that. I guess its all part of getting better. He said that swimming will help me sleep better which should reduce the amount of time I need to spend asleep, as the sleep I'm getting now isn't really high quality. I asked him about my bike, and he said "Still no" and I said "well when can I?" and he said "when I tell you you can". I know why he's being so stern about this, and I need to stress that this is not stationary bike I'm talking about, I like riding in the street, up and down hills and over bumps and so on, but I miss having the wind in my hair and the sun on my face. He's not saying I'll never ride again, but I get the feeling its still going to be a few more months. But good news! I told him I've emptied out my bank account to take myself to a luxury beach resort for a week in May and that there's free horserides on the beach included, and he said I can do that! It'll be very sedate, but YAY! I can do something! The actual injection went fine. It hurt a bit like it usually does, and I'm a bit sore tonight, but I think they work really well for me, so the pain is worth it.

I've got a bit of pain where both lateral releases were done this week, something I haven't had in my right knee for a long time, and my left hadn't been that sore either. I'm not sure what its about, and it only really gets in the way when I forget and cross my legs, so I'm going to wait until my next injection in a week and a half to ask him about that, as it might have passed by then. I didn't ask about my knee cracking, because its only done it the once, and my right knee used to do it all the time in the months immediately following that operation.

Tonight I'm feeling tired of all this, and wondering if I'm a complete lunatic for wanting to have both surgeries so close together. The doctor says how great I'm doing and how it was worth it, and asks me if I agree. I'm sure I'll agree in another 6 months when my life is better, but just now I'm sooooo over having to think before every little thing I do and wondering if I can go along to relatively simple social events because I'm not sure if my legs can cope. Obviously its too late to go back now, and I'm glad I had them both done with the same surgeon. Going to see him cheered me up a lot, because he's funny and we can always joke about things, but no matter how nice he is, I'm looking forward to the day when I never have to see him again because I'm better!

Anyway, tired as usual, and its nearly 830, and I've been going to bed at 9, so I guess I should sign off!
Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 28, 2007, 04:00:50 PM
hi heather!!
i hope you felt better having a vent yeterday,it has always made me better to come on here and explain how i am feeling!
i really admire you how you are coping with all the CRPS stuff you are going through on top of the operation and knee stuff aswell,and you still manage to sound positive even though you are going through all this and are so supportive to everyone else too!
what sort of day are you having?
we took bobbie for a walk today to a place called "little switzerland" it is a lovely place close to the "humber bridge" i think i sent you a picture of it when we were IM each other before,the weather is lovely today and the walk was a pretty challenging one for me as there are lots of stairs and uneven terrain but my knee held up pretty well.
i hope you enjoy getting out to your familys this weekend,it will be good for you to get a change of scenery,i got so fed up of lokking at the same 4 walls all day and even going to my friends house and looking at her 4 walls made a nice change.
how long do you think it will be before you can return to your apartment?
are you still experiencing the side effects badly from the meds you are on?
i think like saul and lozzie you have sounded more positive this week,i think your ROM sounds good at PT im not much past what you are!!
is jamie still supportive towards you and as dedicated?
well i'll be off for now!
ive just woke up from yet another nap! we are going to go to the cinema soon,
take care heather!
i will e mail you tomorrow!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 28, 2007, 05:38:47 PM
Hi All -

Today has been going alright so far. :)  Pain is still not going below an 8 and ranges between 8 - 10, but it has been 8 or 8 1/2 most of the morning so far.  I'm wishing that it would go below an 8, but hasn't done so in over a week. :(  I haven't done anything major today other than sitting on the floor helping to hold a child-safety gate in place while my dad installed it so that my nephew can't fall down the steps at their house (and no one has to constantly chase after him when he's there).  The safety gate is going to get it's first trial this afternoon when my nephew will be here while my sister is at work and my brother-in-law coaches my step-nieces softball practice.  I'm looking forward to seeing my nephew again, as no one else can make me smile like he can. ;D  I also seem to have some extra energy when he is around.  I could use the extra energy today, as I have been really tired all morning.  I'm not sure why I'm so extra tired, because I got plenty of sleep last night; but I've been yawning all morning and would fall asleep if given the chance.  I can't even count how many times I've yawned, just sitting here typing this post already. ::)  Oh well, guess it's just one of those days.  Maybe I'll get some extra energy after lunch and seeing my nephew.  Sorry to cut this short, but my mom just got back from picking up some new flowers at a nursery with my sister and has decided to run a few errands that I can join her to do (as I can basically sit in the car while she runs into various stores to pick stuff up).  Not that I'm going to be going into the stores with her, but I figure it might just be nice to enjoy the drive and getting out of the house.  So . . . I've got to get off the computer and ready to go.  I thank all of you for your support and encouragement.  I will respond to each of your postings more directly later today or tomorrow.  I hope that everyone is having a good weekend. :)  Please know you are each in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 29, 2007, 07:24:57 PM
hi heather!!
im glad you got to see your nephew this weekend!
i know how much he cheers you up!! ;D :D ;) :)
are you still feeling really tired or do you feel abit better now??
i can't believe how tired i have been this week,work has drained me so much,i can't believe how it has affected me!!
it must be old age now im in my thirties!! HE HE!!
i wish i had some of bobbies energy! we took him to my mums today and he never stopped running around playing!
im going to update my diary and i'll send you an e.mail!!
take care,thinking of you!
 ;) claire x  :D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on April 29, 2007, 10:35:54 PM
Hello Everyone -

I hope that you are all having a good day/weekend! :)  The weather here is absolutely gorgeous today, so that has been helping to lift my spirits!  Although, I'm still very tired and nearly-constantly yawning (got plenty of sleep, so not sure why I'm so tired . . . could be from all of the meds I'm on, I guess).  I rode along while my mom ran some errands yesterday and then went with her to visit her side of the family today (I sat and talked with them while she cut & permed their hair).  It was nice to get out and to see my family :), but my knee is not happy with me at the moment. :(  Pain has been fluctuating between 8 1/2 - 9 for the past 1 1/2 hours. :'(  It still fluctuates between 8 - 10 at various points each day. :( :'(  I'm hoping that it will calm down some and at least go back down to an 8.  I just took my next dose of meds, so maybe that will help.  As for the meds . . . I'm still getting some side effects from them, but not quite as severe as when I first started taking them.  However, I still have times when it's hard to get my eyes to focus, have double-vision, get dizzy/lightheaded, fall asleep without warning, etc.  I hate still getting these side effects, but at least they are not as bad as they had been.  Thankfully, although I had trouble with some of those side effects earlier today, I'm not having trouble with them right at this moment (except for being really tired).  I'm actually considering going out to sit on the porch in the sun for a bit (and maybe even take a nap while sitting there for a few minutes ;)).  Even though I'm in a lot of pain and can't really do anything at this time, I still can't resist the urge to sit outside on such a beautiful sunny day like today.  Maybe it will help to ease the pain some!  If nothing else, it will help improve my mood and mental state. :)  My mood and mental state got a bit of a boost yesterday, just by me getting to watch my nephew play and explore parts of my parents' house yesterday.  He's really funny to watch, even when he was throwing a temper tantrum (he didn't like it that my mom wouldn't let him climb on the gate that was put up yesterday so he couldn't fall down the stairs).  The tantrum was very short-lived and he went back to exploring the house.  However, by the time he left, it looked like a mini-tornado had blown through the house. ;)  I wish I could really play and chase after him, but for now I'll have to settle on watching him run and play.  Anyways . . . that's about all I have for an update at this point . . . still dealing with side effects of meds and pain is higher this afternoon.

SAUL - I hope that you are doing well. :)  I'm going to check out your posting in a few minutes after I'm done with this message.  How'd sleeping go the past few nights?  Did you try sleeping on your side with a pillow between your legs?  Let me know how things are going for you.  I continue to keep you in my thoughts and prayers.  Please take care.

Heather

LORRAINE - Thank you soooo much for the support and encouragement!  I really appreciate it! :)  Thank you for pointing out that I'm a productive citizen just by helping you (and others) on here!  As for the questions you had about my job or visiting a nursing home.  I can't really visit places because I'm not able to drive or walk anywhere (nothing is close enough for me to walk to it . . . especially with the pain and crutches) and there's no way that I can do my job without driving and going out to visit the kids.  The company that I work for does not have a way of doing light-duty, especially for my job.  So . . . I'm just trying to remind myself that I need to take this time to do whatever I can do to help myself get better.  I'm also taking this time to prepare for the state-level young careerist competition that I am in (basically, I'm taking time to memorize my speech and reading up on some of the organizations programs for the interview portion . . . . so, I can do all of this prep work while sitting down and can stop anytime the pain or side effects becomes too great to deal with).  I'm glad to hear that your yearly evaluation and doctor's appointment went well!  Congratulations on getting the okay to go horseback riding in May!  I bet that will be great (and help with the wind in the hair and sun on your face)!  I hope that the soreness has gone down and that the injection helps you out.  You are in my thoughts and prayers.  Please keep me updated on what's going on for you.  Take care.

Heather

CLAIRE - Thank you sooooo much for your support, kind words, and encouragement!!!  It's appreciated more than I could express!! :)  As you have read above . . . the visit with my nephew yesterday was an interesting one!  But like I said before, no one can cheer me up like he can! ;D  I'm glad to hear that you have been having a good weekend.  It sounds like you could use some of Bobbie's energy!  Too bad there's no way to bottle that up!  If there was, you could be a very rich person selling it to all of us 30+ year-olds out there! ;)  I look forward to getting your email and hearing more about what's been going on for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on April 30, 2007, 01:18:56 PM
HI HEATHER!
IT WAS GREAT TO HEAR FROM YOU!!
IM TYPING THIS IN MY DINNER BREAK AT WORK!!!!
I HOPE THE PAIN HAS GONE BACK DOWN TO AN 8 TODAY AND YOU ARE FEELING ABIT BETTER,YOUR NEPHEWS SPIRIT LIFTING ABILITIES AND BOBBIES ENERGY SHOULD DEFINATLEY BE AVAILABLE TO BUY!!
WE WOULD BE RICH!!
IM FINDING WORK EASIER TODAY,I HAVE A NEW REST FOR MY KNEE WHICH IS GREAT AND AS I AM BACK UP IN THE USUAL OFFICE I FEEL MORE "IN WITH IT" AGAIN.
THE JOB IS COMING BACK TO ME AND I AM REMEMBERING MOST OF IT!!
ITS A VERY TECHNICAL JOB AND IM NOT A VERY TECHNICAL PERSON!!
I FELT I STRUGGLED ABIT LAST WEEK WITH IT BUT I THINK IT WAS ALSO AS I WAS SO TIRED!!
I HAD A GREAT SLEEP LAST NIGHT AND WOKE UP FEELING REALLY REFRESHED TODAY!!
I HOPE YOU ARE OKAY TODAY!!
I WILL DROP IN AGAIN LATER WHEN I GET HOME!!
I AM STILL OFTEN THINKING OF YOU AND WONDERING HOW YOU ARE GETTING ON!!
TAKE CARE,
CLAIRE X




Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on April 30, 2007, 03:29:07 PM
Hi Heather,

I'm so glad you're getting the chance to get out and get some sun on your face. Even though I'm from the land of skin cancer, I'm a firm believer in the healing effects of some sunshine! Apparently there's some gland in the top of your head that releases endorphins when the sun shines on it. Its sunny today here too, so I'm planning a little walk myself! I'm a bit swollen after my big outing yesterday, but I'm sure a little walk won't hurt. I went for lunch and to a book fair with some friends of mine. They took their daughter who is about 18 months old, so I got a bit of toddler fun too!

I'm wondering if you are having a similar problem to me with the tiredness. My doctor seemed to think that my huge amounts of sleep, but not feeling rested are caused by not enough activity. He suggested I go swimming, as apart from helping with my back and knees, it'll really tire me out and I should be able to get a better quality sleep. I seem to be operating on a low level of anxiety, which is also affecting the quality of my sleep. I spent last night worrying in my sleep about this expensive holiday I'm going on. I dreamt the hotel was horrible and the beach stank of rotting plants! Ew! With your pain levels I'm not sure how you could increase your activity though. Maybe its something you could talk to the PT about?

I think its good that you have something to do too. I think for people who work serving others, its a bit hard when you can't do your job (or maybe calling? I've always worked to help other people, and can't conceive of having a job where I don't) and to give yourself permission to help yourself first. When I was in high school, I did lifesaving training, and one of the most important things they taught us was that you shouldn't try to save somebody else if its going to put you in danger. Its hard to do, but sometimes we need to look after ourselves first so that we can be more effective in helping others. Working on the young careerist stuff sounds like a good way to do that.

Anyway, not much news from here today. Haven't actually got out of bed yet, except to make coffee, so I'm not sure how my knee is doing. It certainly doesn't look so great after all the walking I did yesterday, but I can feel that the weird thick feeling after the injection has gone. Thanks for letting me know you're thinking of me. I don't have the best family situation (one of the reasons for living half a world away from them!) and my dad called me the other day to see how I am, only he spent the whole phone call not really listening to what I was saying! So its nice to have my cyber buddies here asking how I am.  :)

Have a lovely day, and take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on April 30, 2007, 08:38:35 PM
Hi Heather,

Sorry to hear that the pain has been on the up recently. At least you have been able to get out a bit though. With all this tiredness, you almost sound like my sister two years ago. She got a bad dose of glandular fever which she still hasn't fully recovered from yet. At the worst point, she was sleeping 18 hours or more a day and still waking up tired. She still gets tired faster than she used to.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on April 30, 2007, 10:28:09 PM
Hi Heather. Its so good to hear that you have been able to get out a little bit lately. That always helps. :D And watching the little ones distracts you a bit as well, which is good. Hey, at least you can laugh at him running from everyone, and you dont have to chase after him!! :P :o ;D

Im doing ok. No, didnt make appt. yet. :-[ Actually Thurs. is 2 weeks, but hope to get up the nerve to call him tomorrow. Nothng new kneewise here. Same old, same old.

Just wanted to let you know Im thinking about you. Keep in touch.

DONNA ;D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 01, 2007, 12:33:18 AM
Hello Everyone -

I hope that everyone has been having a good start to their week! :)  The start to my week has been so-so.  My pain has been 8 1/2 most of the day (ranges 8 - 10). :(  Got another lumbar injection today, which was painful.  However, the injections allow me to do more in PT so I think it's worth it.  Still struggling with ROM.  Only got to 96-degrees ROM today with PT really pushing on my leg to bend it (I was on the verge of crying :'().  My PT recommended that I call my OS to talk with him about the ROM difficulties.  Last time I saw my OS he told me that he didn't need to see me again until the pain doctor said everything was all better or until the pain doctor said there was nothing else that could be done for my pain.  Problem is . . . CRPS doesn't work like that . . . there is no "cure" and it can take a long time for significant improvement (maybe too long to keep struggling with ROM).  I discussed all of this with my PT, who has been very supportive through all of this.  My PT said that he sent reports to my OS and pain doctors about the struggles with ROM.  However, PT thinks it would still be a good idea for me to call my OS and talk with him about the ROM difficulties (and in case OS doesn't really read the report).  I will call my OS, but I want to talk with my pain doctor first to discuss what effects it may have with the CRPS if the OS does something (ie, MUA) to get knee bending more.  From what I've learned, anything that causes pain, irritation, inflammation, etc. can cause CRPS to worsen or spread and from what I've learned about MUAs, they cause pain, irritation, and inflammation.  I can't stand the thought of doing anything that might cause the CRPS to worsen or spread, but I also can't live with such limited ROM and on crutches!!!!! :( :'(  I just don't know how to get the improved ROM without risking the CRPS getting worse or spreading!!!!! :'( :'( :'(  I may ask my pain doctor to speak with my OS about all of this to see if there is any way that the two of them can think of to get the improved ROM while lessening the risk that the CRPS would worsen or spread.  Anyways . . .this will be something to add to my list of things to discuss with my pain doctor when I see him on Friday.  I get another injection on Wednesday, but I will be seeing another doctor in the office as I needed the appointment to be in the morning and my doctor will not be in the office Wednesday morning.  Anyways . . . enough about my knee and CRPS stuff.

CLAIRE - Thank you for your support and encouragement! :)  I'm glad to hear that work has gone better for you today and that using the plastic bin and pillow to rest your leg worked out!  If we could bottle up Bobbie's energy and my nephew's spirit-lifting abilities we could definitely be rich!  Too bad we can't do that, 'cause I could use some of that money right now.  I'm struggling with trying to pay my bills and my parents have repeatedly been telling me that I should turn in notice on my apartment and move back home.  However, I don't want to do that.  I really like my apartment, don't want to hassle with packing up my stuff, and don't want to move back home and then have to find another apartment/home when I'd be ready to move back out again.  The problem is that disability payments are not quite covering all of the increased bills (ie, medication costs, etc.), so my parents have been helping to cover the extra bills.  I HATE having to rely on my parents for the extra help!!! :(  Thankfully, I have good insurance and a prescription plan.  I don't know how I could make it through otherwise.  Even with my prescription plan, my medications have cost a couple hundred dollars this past month.  Without the prescription plan, the medications would have cost at least an additional $1200+ just for this past month alone!  I don't have to make a decision about my apartment right now, but I know that my parents will keep bringing up the topic with me.  I keep trying to tell myself that this will all work out somehow, but I just don't need the added stress right now!  Sorry to vent/complain like this.  I hope that the rest of your day/evening has gone well.  I'm glad to hear that you were able to get a refreshing sleep last night.  Work goes much easier when you're able to wake up feeling refreshed!  I look forward to hearing from you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather

LORRAINE - Thank you so much for your care and support! :)  I really appreciate it!  Also, thank you for your thoughts regarding sleep.  However, I'm not sure how I could increase my activity level with the limited ROM, pain, and CRPS stuff.  Apparently, sleep difficulties often coincide with CRPS.  That's why I'm on some of the medications that I'm prescribed.  In fact, with the dosage of Neurontin I take, multiple people (some people I know who are nurses) have said they are surprised I'm even awake at all!  In addition to the Neurontin, at least 3 other medications I take have drowsiness/sleepiness as a possible side effect.  I also thank you for giving me permission to allow myself to put myself first, to allow myself to heal before trying to help others.  I have a hard time with that and thank you for your support!  I agree that working on the young careerist stuff has been a good way to do something for myself and to distract myself (even if only for very brief periods of time) from the pain and other CRPS stuff.  I'm sorry to hear that you have a difficult family situation and that the phone call with your dad didn't go well!  I'm struggling with some family issues myself at this time.  Please know that I'm here for you in any way that I can be and that you are cared for!   :)<<BIG CYBER HUG>> :)  Please don't hesitate to let me know how I can help!  Also, please feel free to IM me if you would like.  If you would want to email, just let me know and I can IM the email address to you.  How has your day been going?  Did you get out to get some sun on your face at all today?  Please keep me updated on how things are going for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather

GARTH - It was so good to hear from you! :)  I'm sorry to hear about your sister getting tired faster than usual and not being fully recovered after 2 years from the illness!  IBeing so tired is aweful!  I can't imagine how she has coped for this long!   hope that things get better for her soon!  How are you doing?  What have you been up to lately?  Please let me know how things are going.  You are in my thoughts and prayers.  Please take care.

Heather

DONNA - Thank you for your support and kind words! :)  I really appreciate it!  It has definitely been good to get out in the sun lately!  I wish I could actually "do" something outside, but at least I can stand (with the crutches) or sit on the porch for a few minutes!  In fact, last evening after a family dinner at my grandmother's house, everyone sat out on her porch for awhile.  She lives directly behind my sister/brother-in-law's home and so we were able to watch my nephew riding his battery-powered 4-wheeler for awhile.  Even though he's only 13-months old, he knows how to make the 4-wheeler go all by himself (with my sister walking behind -almost on top of- him to make sure he doesn't fall).  It's so cute to watch him just take off and go! :)  We're all a bit concerned about what he'll do when the 4-wheeler has a full battery charge.  My sister has never charged it, so it's only got however much power was in it when my parents bought it at a yard sale last summer.  I think my sister better have her running shoes on when she lets him ride it after it's got a full charge! ;)  Anyways . . . it was just really nice to sit on the porch and watch him play outside last evening! :)  I'm glad to hear that you're doing ok!  Good luck with getting up the nerve to call the doctor tomorrow.  Please keep me updated on how things are going for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 01, 2007, 12:58:05 AM
Hi Heather,

I'd say that my sister is about 95+% recovered now, the tired bouts are rare now which is great, she has had a really rough couple of years. She's been in hospital 4 times since mid 2005. Once for a kidney infection, twice for an abcess on her leg and, once to stop the abcess from coming back. This was all probably linked to the glandular fever, as it hits your immune system hard. She has improved massively over the last couple of months, she was able to help with the lambing for the first time in two years, which meant loads to her as she loves working with animals, and is very good when it comes to working with them.

My day has been a bit on the poor side as my knee didn't want to play ball today. I don't think walking around on concrete with heavy boots, carrying 15-25kg bags of feed all day helps. If i lived in/near a bigger town I'd probably have changed jobs by now. I really need to learn to drive, but I'm not that confident about going about it with my knee like it is at the moment.

Anyway, bedtime methinks.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 01, 2007, 01:53:43 PM
HI HEATHER!!
SORRY I NEVER POSTED LATER IN THE DAY YESTERDAY I FELL ASLEEP AGAIN!!
GOD I HAVE SO LITTLE ENERGY SINCE I CAME BACK TO WORK.
IM SORRY TO HEAR YOUR PAIN LEVELS ARE STILL SO HIGH.
DID YOU GET MY E.MAIL??
DON'T WORRY ABOUT VENTING!! WE HAVE ALL DONE IT AND IM SURE WE ALL WILL AGAIN!!
IT DOES MAKE YOU FEEL BETTER THOUGH DOESN'T IT!
I CAN TOTALLY UNDERSTAND YOU NOT WANTING TO GIVE UP YOUR APARTMENT,I WOULD NOT WANT TO EITHER AND HAVING TO RELY ON YOUR PARENTS FOR STUFF MUST BE AWFUL,IM ALSO VERY INDEPENDANT AND LIKE TO BE ABLE MANAGE THINGS MYSELF.
I HATE HAVING TO HAVE PEOPLE DO THINGS FOR ME AND HAVING TO HELP ME!! IM SO STUBBORN!!
IM IN A BIT OF DISCOMFORT FROM MY KNEE TODAY.IM FINGING IT HARD AS I AM NOT DOING MY PT EXERCISES WHILE I AM AT WORK AND AM FINDING IM STIFFENING UP/SWELLING ETC.
IM GOING TO HAVE A WORD WITH OUT HR DEPARTMENT AND SEE IF THERE IS SOMEWHERE I CAN GO TO DO THEM A COUPLE OF TIMES A DAY AND ASK MY PT IF HE RECOMMENDS THIS.
I ALSO NEED TO GET BACK TO DOING SOME KIND OF STRENGHENING/MUSCLE BUILDING EXERCISES,AS MY LEG IS STILL SO WEAK AND I DON'T REALLY TRUST IT!
THE LAST PT I SAW SAID THAT THEY WILL START ME ON A PROGRAMME SOON BUT MY USUAL PT IS SO WARY OF GIVING ME TOO MUCH TO DO AS HE SEEMS CAUTIOUS AS HE IS NOT FAMILIAR WITH MY OP.SO HE WILL PROBABLY DECIDE DIFFERENTLY!
I SEE MY OS IN 3 WEEKS (MY LAST APPT THAT WAS IN X 2 WEEKS WAS CANCELLED AND PUT BACK A WEEK)SO I WILL ASK HIM WHEN I SEE HIM WHAT STUFF I CAN START TO DO ( IF I DO NOT GET TO SEE HIS UNDER STUDY!! WHO GENERALLY DO NOT HAVE A CLUE!!)
WELL I'LL BE OFF FOR NOW!!(HAD A LITTLE VENT OF MY OWN THERE!!!)
TAKE CARE HEATHER!
THINKING OF YOU!!
CLAIRE X



Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 01, 2007, 02:53:00 PM
Hi Heather,

I had a little peekaboo at your post to Claire, and I see you're having to pay a lot for your medicine. Am I right in assuming you live in the US? Is there any way you could get to Canada or Mexico (or send someone for you, would probably be a lot easier) to get your drugs? A lot of medicines are much cheaper in Mexico than in the US, but I'm not sure how specialised yours are. I've never had to pay attention to medication before, so that part of things is very new to me. Connected to that, I really hope I didn't come across as being insensitive about your sleep. I know how unsettling it is to be sleeping so much and yet it feels like you haven't rested at all (that's a large part of my life just now), but I didn't realise how much your medication was contributing to things. Today I'm thinking of going to renew my membership at the pool, and even if I can't manage too much swimming, I'm just going to walk up and down to try to get some strength back, and then sit in the jacuzzi for a while. I think you mentioned something about water therapy at one point, is there any update on that?

I'm having a long weekend this weekend, as I don't work Mondays, and today is a holiday. I'm trying to deal with the anxiety I seem to get after my operations, which I think is brought on by inactivity. I also feel at my absolute limit in my capacity to deal with stress, so I'm just going to do whatever I feel like today, as yesterday was a bit stressful, and when I'm stressed I get more pain in my knees. I wanted to buy one of those soothing noise machines so I could just lie on my bed and listen to ocean sounds when I'm feeling really bad, but Amazon won't send any electrical goods here, something to do with guarantees or something. I did manage to get one of those water fountain thingys, but I don't like leaving that on as I'm going to sleep. I've only got 3 more weeks before I go off to my beach holiday, so hopefully that'll help a lot.

Thanks for the cyber hug, it really helps to know that there are some people who really understand. I know my situation is nowhere near as extreme as yours, but I still sometimes feel all alone in my recovery. I was talking about moving with my friends the other day at the book fair (and I know what you mean when you talk about packing up, ugh!) and I said I didn't want to live in the hilly parts of Bogota because its too hard for me. His response was "you won't have bad knees forever" but just now that's how it feels.

Good luck with your injection tomorrow,
take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 01, 2007, 10:20:14 PM
Hi All -

Happy Tuesday to you! :)  My day has had it's ups and downs.  The "downs" are the pain (8 right now, but ranged from 8 - 10 at various points last night and today), being tired (knee pain woke me up more often last night than it has in quite a few weeks :(), being depressed/anxious (money issues, CRPS symptoms, and a meeting with my boss tomorrow -the secretary called yesterday to say my boss wanted to meet with me Wednesday, Thursday, or Friday this week, but when I asked why she said she didn't know why the boss wanted to meet with me . . . being out for so long and not knowing why the boss wants to meet with me lets my mind wonder and worry), swelling, lightheaded/dizzy spells, trouble focusing my eyes at times, etc.  The "ups" are the abundant sunshine and getting to watch my nephew play while my mom was babysitting him today.  Even though I'm struggling with all of those "downs" today, my nephew still managed to get me smiling and laughing at some of the silly things he was doing.  One of the funny things he was doing . . . he kept pulling at his hair until he had it standing straight out from his head in all directions and then would run around the house laughing and run up to you, wait until you put your head down near his, then he would rest his forehead against yours (mine or my mom's), smile, and then give a very slobbery kiss on your nose, then go off running again! :)  My mom will be babysitting him again tomorrow and Thursday this week.  Nothing major planned for tonight, except that my mom is going to cut my hair (she's got her cosmetology license) because I decided it was time for something different and is a way for me to do something for myself to try to improve my mood some.  I'm going to get quite a few inches cut off, so it could be interesting to see people's reactions tomorrow when I go to get my injection and then to PT.  My PT has noticed before when there was something done differently with my hair.  Anyways . . . I think I may go sit on the porch with my mom for a few minutes to enjoy some sunshine on my face.

GARTH - It was good to hear from you! :)  I'm glad to hear that your sister is mostly better and was able to help with the lambing this year!  I hope things continue to improve for her.  I'm sorry to hear that you have been having more problems with your knee today!  You're right about the walking on concrete in heavy boots carrying heavy bags not being good for your knee.  Too bad there isn't something else around that you could do for a job at this time.  Good luck with the IT stuff!  Hopefully, that will all go well and you'll be able to change jobs then!  Please let me know what's going on for you.  Have you decided about the MRI?  Are you going to do the mobile one or continue waiting on the list?  You are in my thoughts and prayers.  Please take care.

Heather

CLAIRE - Thank you for your support! :)  I'm sorry to hear that your knee is giving you more troubles lately!  Hopefully, the HR department can help you out with finding some place where you can do your exercises a few times each day!  Also, good luck with the PT and OS regarding giving you more strengthening work to do.  I would hate to have to see an understudy for the OS.  My feeling is that if the OS is going to do a surgery, they should be the one to do all of the follow-up with that person if the person wants to keep meeting with that OS.  Anyways . . . that's just my thoughts/feelings regarding the matter.  How did work go today?  I hope it went well.  I didn't get your email.  When did you send it?  If you just sent it sometime today, there may just be some sort of lag time before it shows up in my email inbox.  Please know that you are in my thoughts and prayers.  Take care.

Heather

LORRAINE - Thank you for your support! :)  You are right in assuming that I live in the US.  Even though I've paid a couple hundred dollars this month for my medications, it would still cost me more to buy them from Canada or Mexico because my prescription plan would not cover any of the cost then.  The cost of the meds, even outside of the US, is more expensive than my co-pays here in the States.  Even though the meds still cost me quite a bit, my prescription plan saved me over $1200+ USD this past month!  Don't worry . . . you didn't come across as being insensitive about my sleep.  Did you get to renew your pool membership today?  At this point, my PT is still working on getting the authorization from my insurance company for the pool therapy and to arrange with the other PT who does the pool therapy for me to get on the schedule for a day each week when I don't get an injection (I can't get in a pool for at least 24-hours after my injection in order to reduce the risk of infection).  So, pool therapy is being arranged, but hasn't started yet.  How are you doing with dealing with your anxiety/stress at this time?  I'm sure going on your beach holiday will help a lot with that!  About the soothing noise machines . . . sorry to hear that Amazon won't send electrical goods to where you are.  Have you thought about trying a website like "Walmart.com" or something of the sort?  I'm not sure, but they might send it to you.  Please know that you are not alone in your recovery.  I, as well as many others on here, are here for you and can relate to what you are going through.  I know the feeling regarding the sense that you can't  see the end in sight and feel like you'll have "bad knees forever".  Please know that you are in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 02, 2007, 12:01:10 AM
Hi Heather,

Its good to hear that you have something to distract you from all of the discomfort. Every little helps. We have been having unusually good weather for the time of year.
I'll be having my MRI at the mobile unit on the 1st, 2nd, or 3rd of june. That taken up to 6 weeks of the wait. No improvement from my bad knee, to be honest I don't think that there is much I can do about it by myself as something catches with just about every step. PT just won't work for it. If it catches nastily, it will usually hurt for the rest of the day. If it catches any worse, I'm usually out of action for a day or two as the swelling goes down. The funny thing with the swelling is it won't look swolen, but I can feel a big increase in pressure, so I'm fairly certain its there. Doesn't help when I go to the doctor as it looks normal. I'd better stop about the doc, or it will turn in to a rant, too tired for that ;D
I think the good knee is still on the mend although it does ache more than usual (I've been prone to getting really achy legs for the last 8 years).
As for alternate jobs, most jobs around hear are manual labour. I can't really work full time on the farm as my feet and knees end up in agony if I wear wellies on concrete for more than half an hour, and rough ground doesn't really help either. When all of this knee rubbish is over I'll be able to find something better to do. I don't really want to start at a job that I want to do and end up having loads of time off because of the knee.

Anyway, must go to bed now. More bag lugging tomorrow!
garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 02, 2007, 01:06:25 AM
Hi Heather,

That's good you're finding things to distract yourself. How did your haircut turn out? Try not to worry about the meeting with your boss. I know that's easy to say, but you don't want to stress yourself any further. Hopefully its nothing, and you'll have some nice news for us tomorrow.

I didn't go to the pool today. I hung about at home for quite a while and put some more photos on a website so my family and friends can look at them. Then I went out with a friend who needed a little support. We had lunch and rented dvd's. I just watched Dodgeball. Its funny in a silly kind of way, and it gave me a good laugh.

I've got a bit of pain and inflammation today, so I just wanted to lie around before returning to work tomorrow. I've really enjoyed having an extra day off!

There's not much news from here, so I'll say goodnight, and hope you have a nice Wednesday.

Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 02, 2007, 08:53:20 PM
hi heather!!
how are you feeling today?! :D
im sorry you never got my e.mail...............i sent it on sunday night,i can't understand why you never got it?? ???
i will send you another one.............might be at weekend though!!
ive got some "funny" e mails from work as well i can forward on to you that might make you smile!!
theres some really good ones.
let me know how the meeting goes at work,i can more then understand why you fell nervous by it i would too,please let me know how it goes.
how did the haircut go??
what is it like??
i hope it has made you feel better!!
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 03, 2007, 09:03:07 PM
"hey you!!!"
just thought id pop in and say hi and see how you are!!
i hope you are okay today and not in too much pain?
sending you a "cyber hug"
claire x


Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 04, 2007, 02:34:56 AM
Hi Heather,

A little hi from me too, just in case you're coming on here to read, but don't have the energy to write. I hope you're ok.

Big hug,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 04, 2007, 03:33:33 AM
Hello Everyone -

I hope that you are all doing well! :)  I'm hanging in there.  Still struggling with swelling, severe stiffness/limited ROM, dizziness/lightheadedness, tiredness, difficulty focusing eyes at times, etc.  Right now my pain is an 8, but it continues to range between 8 - 10.  It's been over 2 weeks since my pain went below an 8. :'(  I'm trying to remind myself to be thankful that the pain at least goes down to an 8 and isn't consistently a 9 or 10; but it's getting increasingly difficult to be thankful for that.  I'm dealing with it at the moment, but am not sure how much longer I can take having the pain be 8 or higher! :(  I'm going to talk with my pain doctor tomorrow about this and about him possibly calling my OS to discuss what can be done to get my ROM back (with as little risk of causing the CRPS to worsen or spread).  Anyways . . . I'll just have to wait and see what he says.

GARTH - It was good to hear from you! :)  I'm glad to hear that you're able to get the MRI in the beginning of June instead of waiting the extra weeks! ;D  I'm sorry to hear that your knee is still causing you troubles, though.  Good luck with everything!  I can understand about not wanting to find a job you really would like and then having to take time off to deal with your knee.  I wish you well with getting everything sorted out.  You are in my thoughts and prayers.  Please take care.

Heather

LORRAINE - Thank you for the support!  I really appreciate it! :)  The haircut turned out pretty good, I think.  My mom cut 6 inches off the length and did some "chunky" layers to frame my face.  The assistants at the pain clinic and a bunch of people at PT (PT's, assistants, fellow "regular" patients) commented on how much they liked my hair and that it looked good on me. :)  That made me feel good.  The meeting with my boss went alright.  Although I thought that I had already been terminated (due to company policy), I apparently hadn't been.  During the meeting with my boss, it was mutually agreed upon that I would be officially terminated due to disability (this doesn't change anything with my disability insurance payments or with the way my health insurance has been for the past few months).  Because of being officially terminated, I do need to clean out my desk, which my mom and I are going to do tomorrow.  However, my boss was adamant about that they wanted me back as soon as I'm able to come back to work.  He said he couldn't guarantee me anything, but that if they were hiring when I'm able to work again, that I would be at the top of the list to be hired.  He also explained how much that office of the company was expanding and almost always looking for more staff at the level I was at when I left for disability.  He stated how much they all miss me and asked me to keep them updated on how things are going for me.  My boss told me that all he wanted me to do right now was to focus on doing what I needed to do to take care of myself and heal and that I don't need to worry about whether or not I'll have a job there when I'm able to return.  Basically, other than cleaning out my desk, the meeting doesn't change anything from the way I thought things already were.  So, I'm going to take my boss' advice and focus on taking care of myself and healing and try to not really worry about work.  I'm going to keep them updated on how I'm doing and stop in to see them periodically.  And I'm still planning on returning to work there when I am able to return to work.  Anyways . . . enough about me.  How are you doing?  How has the return to work after the long weekend been going?  I'm sorry to hear that you were having some trouble with your knees over the weekend, but am glad to hear that you took it easy on yourself and watched some movies.  I've never seen "Dodgeball", but have heard that it was funny.  I may watch that sometime when I need a laugh.  However, I've still got a few DVD's that were bought for me when I had the surgery that I still have not watched, so will probably watch them before I go rent any movies.  Well, I hope that things are going well for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather

CLAIRE - Thank you for the support and "cyber hug"!  I really appreciate it! :)  I'm not sure why I never got the email last weekend, either. :(  However, I look forward to getting one from you this weekend. :)  Also, that would be great if you could send me some of the funny emails from work!  I can always use a smile!  So that I don't have to type it all again (it's getting late and I'm rather tired). . . please refer to the part of my message to LORRAINE regarding my meeting at work and my haircut (although you've probably already read that part in order to get to this part of the message ;)).  How are you doing?  How's work?  How are Mike and Bobbie doing?  I hope that you are all well and that work is going well.  I'm going to read your diary as soon as I finish posting this message.  Please let me know how you are doing.  I'm sending you a cyber hug <<HUG>> as well! :)  You are in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 04, 2007, 07:31:29 PM
Hi Heather,

Wow! You got 6 inches cut off your hair? I got 4 inches cut off by mistake a year ago from halfway down my back to the bottom of my neck. I really didn't like it at the time because it was so extreme (and because I never wanted it that short) but now that its getting a bit longer I'm starting to like it. It certainly takes a lot less work when its short, although mine is curly, so it gets a bit berserk sometimes! I'm glad you like yours and that you got some good feedback from the people around you. That's a nice way to brighten your day.

As for your boss, I think he has done a wonderful thing. Of course, I'm sure you'd prefer to be back at work than going through all this, but I think that's wonderful that he explained everything so well to you and has pretty much guaranteed you a position when you return. And lets keep saying "when" ok? And I'm glad he's told you to take care of yourself, very important! What do you do? It sounds like its counselling or youth work or something, is that right? I used to be an artsworker for disadvantaged youth, and ran art workshops to try to help their motivation, and also to give them some job skills in computers, web design and so on. It was difficult at times, but very rewarding!

I'm ok, feeling a bit blah today, but I feel blah most of the time these days. I had a stomach "episode" over the weekend which means I had terrible stomach aches and acidity for a few days. I seem to be better now, but I've had these on and off for the last 4 months, and after not having them for a few years I feel a bit worried. I had an ulcer 12 years ago, and I learned all these ways to look after this chronic stomach condition I have, but sometimes my insides get confused and I have episodes like this one. They don't last as long as they used to, but they're still no fun. I kind of promised myself I'd go to the pool today, but now that its coming time to go, I don't want to. I don't want to have to go through the bureaucracy of renewing my membership, what if people look at me, what if I don't understand what they're saying (its all in Spanish, remember), what if it rains, what if what if what if. Of course there's also the what if I don't go, and my legs never get better and I'm stuck like this forever! So I'll probably go, but I'm feeling very undermotivated about it! I borrowed some DVDs from work today. I got two of British comedy sketch shows (Little Britain and Harry Enfield for anyone who's interested) and a movie that looks a bit emotional called The Winter Guest. I haven't heard anything about it, but I figure if I watch that and have a good cry, I can watch the comedies after to cheer me up!  ;)

Anyway, that was a bit of a rant wasn't it?

How did it go with the meeting with your pain doctor? Any new insights? I really hope you can reduce your pain, or even better eliminate it, really soon, and that you can also get your ROM back on track. Don't forget to stock up on gold stars and incentive rewards for when you can work on your ROM chart!  :)

I guess I should go pack my swimming bag and guilt myself into going to the pool! Take care, and I'm thinking of you,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 05, 2007, 12:20:49 AM
Lorraine -

It was good to hear from you!  I'm still liking my shorter hair.  My hair is straight, so I don't have to worry about it going "berserk" but I do have to work with it so that it doesn't lay so flat to my head.  The fact that the hair is now shorter makes that part a lot easier to do because there is less weight of the hair pulling it down.  Anyways . . . as I said, still liking it.

As for work stuff . . . my boss and co-workers have been very supportive throughout this whole process with my knee/leg!  I couldn't have asked for better people to be working with or a company to work for during this time!  I can't imagine what added stress I would have if I had still been working for some previous employers when this happened.  Thankfully, my boss, co-workers, and company have been very understanding with the situation with my knee/leg.  I really want to get back to work there!  In some ways that makes this time harder because I feel like I had finally found the best job for me (one that I loved!) and like it's now been stolen away from me and I don't know if/when I'll be able to get back to it!  I went into the office today to clean out my desk (which was tough to do) and my boss and co-workers re-iterated to me again how much they want me to come back to work as soon as I can.  However, they also encouraged me to take the time and do what I need to do to take care of myself and heal!  It was very good to hear these reassurances again, especially because I had had a very tough day leading up to the time that I went to the office.  Anyways . . . you asked what kind of job I do/did . . . I provided therapy to children, but my primary responsibilities at the time I went on disability were to develop treatment plans for children on the autism spectrum, to demonstrate therapeutic techniques, and to supervise the staff members who were implementing the treatment plans for these children.  I really miss that job and the people that I worked with. :'(

As for how I'm feeling today . . . the pain is an 8, still can range up to a 10 but doesn't go below an 8. :'(  Also still have the tiredness, dizziness/lightheadedness, swelling, etc.  I spoke with my pain doctor today about the pain not going below an 8 in the last two weeks and so he suggested that I try doubling the dose of the OPANA (instead of 5 mg twice per day, I'm going to try taking 10mg twice per day) and to let him know how it works or doesn't when I see him on Monday.  He also discussed with me the need to give my back a break once this series of injections is completed.  My last injection is scheduled for next Wednesday, so then I won't receive injections for a few weeks (maybe a month) but will continue with aggressive physical therapy during that time.  He said that if we don't give my back a break from the injections, it could cause chronic pain problems in the back also.  Definitely don't need that!  I asked him to speak with my OS about what can be done to improve ROM.  I explained that prior to me being in the hospital the end of March, an MUA had been scheduled; but that once I was admitted to the hospital with so much pain my OS cancelled the MUA and at my last appointment the OS told me that he didn't need to see me again until this was all fixed or until the pain doctor said there was nothing else that could be done.  My pain doctor stated that this isn't something that can be "all fixed" and that he would speak with my OS.  Before I left the pain clinic, my doctor told me that he had spoken with my OS and that I was to call the OS to schedule an appointment to talk with him about the options.  My pain doctor then told me that it would be up to me to decide the pros and cons of having an MUA done: did I want to have an MUA done in the hopes of gaining a few extra degrees ROM (everything could go fine and I could gain those few extra degrees or it could all go terribly wrong and I end up with worse pain and having the CRPS spread) or was I okay with living with the amount of ROM that I have now.  I just really don't know what to do! :-\ :( :'(  I don't want to risk having the pain get worse and spread; but the way things are right now is not the kind of life that I want for myself!  I want my life back!!! >:( :( :'(  I want to be able to go back to working the same job I had, driving, walking "normally", bowling, chasing after my nephew, not being so tired/loopey because of all the meds, swimming, hiking, wearing pants without having to roll up the pant leg (because the leg is so hypersensitive that the cloth is extremely painful), going shopping without needing someone to carry the bags for me, etc, etc, etc!!!! >:( :( :'( >:( :( :'(  Sorry for the rant, just has not been a very good day.  I spent quite a bit of time late this afternoon crying!  I just don't know how much longer I can deal with this and I don't feel like I have anyone physically around me that I can talk to about my fears and frustrations, so I let it out in tears today.  I had PT today and I did share with my PT about the appointment with my pain doctor, the discussion the pain doctor had with my OS, and some of my fears/frustrations.  It helped some because my PT is supportive and encourages me to keep fighting/working hard.  I started doing some work on the bench/leg press machine to work on strengthening my leg some more.  My PT also had me try to use only one hand when using the parallel bars to practice walking.  It was a bit nerve-wracking, but I managed it!  I also was able to do more reps of some of the strengthening exercises than I had previously done.  Still struggling with ROM, but got to "around 100-degrees" with the PT bending my knee which is the best it has been since I was in the hospital!  Too bad I don't have my ROM chart made or I would already have 1 gold star on it!  I'll have to check in my craft area to see for sure, but I think I already have a bunch of star stickers (I don't think they're gold, but are all sorts of metallic colors). ;)  Still have to think of some incentive rewards.

Sorry for the long post!  How did swimming go?  I can relate to that feeling "blah" and having to make yourself do something.  I can't imagine having to renew your membership in Spanish.  I can see how that would make you feel more "blah" and not wanting to hassle with it.  However, as you and the doctor have said, it will help you out in the long run if you can get back to swimming.  So good luck with that! :)  I'm sorry to hear that you had trouble with your stomach again this past weekend.  I know I would be worried about it too with having stomach "episodes" the past 4 months after not having them for years.  I'm sure that the stress of the two knee surgeries doesn't help the problems you have with your stomach and may just be "overriding" the positive ways that you've learned to deal with the chronic stomach condition.  Please let me know how you are doing.  How did work go today?  That's really good news about that student you were having trouble with! :)  I bet it's a relief for you!

I saw on one of your posts to Claire that you had used IM.  Claire and I have used IM also.  If you would like to IM with me sometime, that would be great! :)  I can't use IM while I'm at my parents' house because they do not have an IM program on their computer (and I don't want to download anything onto their computer because then if they had computer problems they would probably try to blame it on me for downloading a program off the internet onto their computer :P).  However, I can IM when I'm at my apartment.  I'm staying at my apartment this weekend (sort of as a "trial run" to ease me back into staying at my apartment on my own).  I'll be staying at my parents' house again from sometime Sunday afternoon/evening through Friday afternoon/evening, but will be back in my apartment again next weekend.  Anyways . . . if you would like to IM sometime, just let me know and I can private message you on here with my IM info.

I hope you had an enjoyable time swimming (after you convinced yourself to go) and that the rest of your evening is enjoyable and as pain-free as possible!  Please keep me updated on how things are going for you.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 05, 2007, 02:31:36 AM
Heather,

From a business point o view, I think the meeting was left on a positive note and my one little piece of advice is not to loose contact with them and to keep them uprised of how things progress. As a former VP of a company, this is a proper thing to do and displays a high level of "mutual respect". And besides there may things that you can do later on to help out. Now the hair thing, I shave my head 2 or 3 times a week  ;D, and I have a full head of hair ! But like I said before, you sound a lot better and it is evident the forward progress is being made and that is fantastic. Taking care of my hair is very ice, justa splash and I am good to go !!!!!!!!!

For a smile check out the web address I put in my post-op, it will give you a smile. I hope your weekend is fantastic and I will talk to you later !!!!!!!

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 05, 2007, 02:47:12 AM
Saul -

Thank you for the support and encouragement!  I really appreciate it!  :)  I am definitely going to keep my boss and co-workers informed about how things are going for me!  I really want to get back to work there!  Also, I feel that they have been very supportive and understanding with my whole situation and it is only proper/respectful to keep them updated.  In addition to that, I feel I have made a number of friends there and do not want to let those ties go.  About the hair thing . . . it would be nice to be able to take care of my hair with "just a splash" and go.  My hair is fairly low maintenance, but is definitely not THAT low maintenance!  ;)  I just posted a message to you in your post-op diary.  I will try to check out the website when I finish posting this message, but my computer has been quite contrary tonight and may not let me do so.  However, I plan to check it out as soon as I can.  I hope you are having a good night and that you are able to get some more sleep tonight.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 05, 2007, 06:01:07 PM
hey heather!
just a quick post before i go out for some tea!!
i have posted a super long post in my diary about my day!!
i hope you got my return e.mail and the "funnies"
i will try and check back in later if i am not sleep!!
LOL!
TAKE CARE!
sorry i have not got to catch you online to IM you so far!!
love,
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 05, 2007, 09:59:39 PM
Hi Heather,

Thanks for all your support, I really appreciate it! I know exactly how you feel about not having anyone physically there for you to talk about your pain issues and so on. I was pretty sore last night after swimming and the walk to the pool and back, and I still find it hard getting in and out of bed. I had to go to the loo a few times during the night, and I just wish I could have a little pat or hug from someone when I have to do something that hurts or is difficult. On the other side, I was still pretty cranky when I got home after the swim, and I bet having someone around would have made me realise how good it was that I went even if I could only do a little bit (which is how I feel today, even if I am a bit sore). Tomorrow is my last day to change my mind about staying in Bogota, and I completely lost it this morning at work, and was ranting about how I might as well just leave and there's no future for me here and how if I lived somewhere else I might just be able to find a boyfriend, or some decent friends who aren't going to leave and so on. I'm feeling a bit more philosophical about it now, but things just seem so hopeless at the moment, both with my knees and with other aspects of my life.

I feel really bad saying this stuff to you, because at least I can go out, I really have empathy for your situation and how it has turned out a lot different to how you expected. I really really admire your strength. I know you feel like you don't have much at the moment, but you are one of the strongest people I've met here, and you have my full admiration. I'm so pleased you're spending the weekend in your apartment - what an achievement! I'm going to PM you my messenger details and maybe I'll see you on there this weekend!

I'm so proud of you going to your apartment! Keep it up, and good luck with your OS appointment.

Take care, and a big hug,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 05, 2007, 10:34:55 PM
Today has been so-so.  I've been really tired today, but I think that is because of all the energy I spent crying yesterday.  I haven't done much of anything so far today, except watch TV and sort through some mail.  The pain has dropped down to 7 1/2 for a little while today  :) (either the increased dose of OPANA or using 2 Lidoderm patches today as helped), but pain has still gone up to 10 at some points last night/today :(.  I also still struggle with being dizzy/lightheaded, really tired, difficulty concentrating, difficulty focusing my eyes, being down about the whole situation, etc.  Also, my knee has given out on me bunches of times today, which scares me; but at least I didn't fall down because I'm still walking with both crutches.  However, I really want to ditch the crutches, but do not feel safe to do so at this point.  Anyways . . . that's about all I have for an update on today.  I hope that everyone is having a good, relaxing, and knee-behaving weekend.  Take care.

Heather

CLAIRE - I got your return email and funny ones.  Thank you very much! :)  I have responded to the email just a bit ago.  I hope you had a good dinner.  I'll try to catch you online later.  Take care.

Heather

LORRAINE - Thank you so much for your encouragement and support!  It is greatly appreciated! :)  I'm sorry that you don't have anyone physically there for support, but it is helpful to know I'm not the only one who feels that way.  I know that feeling of just wanting someone to give you a hug or to hold you and tell you that "everything is going to be okay".  Even though I feel like my family doesn't really understand what this is like for me and I don't really feel like I can talk to them about my feelings or cry with them; I do feel lucky that they are near me to help me out as best as they know how (which for them is doing things like driving me to appointments, helping me financially with paying some bills, etc).  My family demonstrates their love and care for me in the concrete, action-based aspects; but they do not do very well with the encouraging, emotional aspects of support.  I just wish I had someone physically around me who could give me a hug when something hurts (physically or emotionally) or someone that I can just sit and cry with.  My family will say things (I think out of their own worries/concern) that just makes me feel worse or worry more, when what I really need is for someone to hold me and say that "everything is going to be alright" (even when I know/don't think that it's actually going to be okay).  Like I said, I feel lucky to have my family around me; but do wish that I had someone physically around me who would provide encouragement and emotional support.  Thankfully, this website exists and people on here provide support for each other.  I'm here to support you in any way I can and, although I can't physically give you a hug, I can send you cyber hugs. So, here's one coming your way . . . <<HUG>>. :)  I'm sorry to hear that you had such a tough time this morning and "lost it" at work.  I wish you well on making your decision with whether or not to stay in Bogota.  I can relate to you as well with the whole boyfriend thing, as I do not have a boyfriend either and do not see any prospects in the near future.  Also, please don't feel bad about venting your feelings to me and please don't compare yourself to my situation.  Your feelings and pain are important because they are important to you!  You are able to do things that I cannot do at this time, but that doesn't mean that you don't have the right to vent your feelings of sadness, anger, frustration, etc to me.  Just because we have different abilities does not mean that we don't experience similar emotions.  So, please don't feel badly for venting to me.  I'm very proud of you for convincing yourself to go swimming when you didn't really want to go, but knew that it was good for you to do so!  I'm sure that each time you go, you will be able to do a little bit more than the time before!  You go, girl! :)  I look forward to getting your PM.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 06, 2007, 10:48:38 AM
hi heather!!
god it is so-----oooooooooooo noisy here today!i cannot hear myself think!!
i will try and e.mail you tonight or tomorrow if i can get some peace!
hope you are well today and the pain levels are not too high.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 06, 2007, 09:22:53 PM
Heather...How are you today? Feeling any better?

Claire...Hang in there...all the noise will be worth it when its all done!!

 ;DDonna
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 06, 2007, 10:26:49 PM
Hi Heather,

How are you feeling today? I really enjoyed our chat, and hope you enjoyed the weekend at your apartment.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 08, 2007, 08:12:35 PM
Hi All -

Sorry I haven't been able to post for the last few days.  Things have been busy with a family birthday dinner, my appointments with the pain doctor and PT, and a year-end banquet for my bowling team (even though I haven't been able to bowl since I hurt my knee on Oct.16, 2006; I'm still considered to be one of the team members and won some awards for games that I bowled prior to hurting my knee).  Also, I'm back out at my parents' house again this week and a couple of times when I went to get on the computer, one of my parents was already using it.  It seems like any time when I was at the house and the computer was available, I was too tired, my knee hurt too much, or I couldn't get my eyes to focus enough to read the screen. 

Today has been alright, although the pain has been an 8 most of the day.  The pain still goes up to a 10 at times, but it has gotten down to a 7 multiple times over the last few days.  Apparently the increased dose of one of my meds has helped some and so my pain doctor told me yesterday to increase the dose even further to see if it will help even more with decreasing the pain.  I just took the increased dose for the first time this morning, but I'm not sure that it is helping any more than the previous dose.  However, my knee/leg was really hurting last night (it also woke me up a bunch of times) so the increased dose of meds may be helping and just wasn't able to bring it down any further because the knee/leg was already hurting so much.  I still struggle at times thoughout the day with the other symptoms/side effects (ie, swelling, skin discoloration, dizziness, trouble focusing my eyes, being really tired, etc).  Also, I still have to use two crutches to walk (I hope I can soon ditch those things!).  As down as I can get about all of this and how much it feels like it has stolen my life away from me, I keep trying to remind myself that there is some reason that God has allowed this to happen to me and that I need to try to keep a positive attitude.  I refuse to let this CRPS stuff take my entire life away from me.  I refuse to let it take away every activity that I enjoy!  There are things that I can't do at this time, but I am going to try to look at things as a challenge instead of a roadblock and figure out ways to do as much as I can.  I know I'm going to have my up days and my down days, but I'm going to try to focus on the ups.  Anyways . . . that's enough about me.

CLAIRE - Thanks for the email! :)  I will finish responding to it shortly.  I hope that you are doing well and that things are less noisy around your house by now.  Please let me know how you are doing.  I'm keeping you in my thoughts and prayers.  Please take care.

Heather

DONNA - Thank you for thinking of me! :)  How are you doing?  I hope that things are going well for you.  How was your weekend?  Have you been able to get out and enjoy some of this beautiful weather that we are having lately?  Please keep me updated.  You are in my thoughts and prayers.  Please take care.

Heather

LORRAINE - It was sooooooooo good to chat with you on IM over the weekend! :)  Thank you so much for your listening ear, support, and encouragement!  I really appreciate it! :)  How are you doing?  I hope that you are having a good week and that work is going well!  Have you gotten back to the pool at all this week?  If so, I hope it has gone well.  Let me know how things are going for you.  Please know that you are in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 08, 2007, 08:40:11 PM
Hi Heather,

My apologies for not posting to you sooner, I have also been in and out of things over the past few days. I am very pleased the number "7" in terms of pain. It is lower than 8 and that is great. I am still maintaing a steady 5 - 7 though it has spiked to 9 - 10. I am still pretty much pain killer free, except for therapy days. (in my post op) Congrats on the awards and you may not realize this, but receiving the awards is great medicine !!!!!!!!!!!!!! Fighting is great and you have so much around you to gather strength to fight this, and all of us. The weather for us seems to getting better and has finally started to warm up. Making through the day is still a challenge and if I over due things I pay for it. My main hurdles now are just getting enough sleep at night. The lidoderm patches have seemed to help and only are worn at night. The ambien (5mg) seem to be helping also. I seem to be getting about 5 hours, so it is up from 3, but I do not sleep much during the day.

I am so happy to continue to hear progress that it does help me as well. It truly does and will talk to you later.

 ;D ;D ;D ;D

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 08, 2007, 09:44:58 PM
Hi Heather,

It sounds like you've had a nice even mixture of good and bad so far this week. It must have been nice to see all of your bowling buddies, and how lovely to get a trophy! Its a bit of a bummer you've had to share the computer with your parents, especially after having to yourself at your apartment all weekend. And that's great news about the 7!

I think you read in Claire's rom diary about my gloopy day yesterday, and then last night I just couldn't stop crying for about 1/2 an hour (which is a long time for me). Its the first time I've really let out any feelings in quite a few months, and definitely the biggest cry I've had in almost a decade! That's typical of me; to wait until all the pressure is off, and then fall apart. I've had so much support through all of this, and its still not over, but I just felt so alone, but at the same time, such a great relief to realise that in about a week and a half, I will be at the beach, the one place in the world where everything is ok, no matter how bad they are. I still feel a bit confused about my feelings and am just letting them happen, rather than thinking any thoughts about the future, or anything past the next class I have. It was a bit scary to cry so hard, it felt like someone was standing on my chest, but I guess I really needed it!

The injection site from yesterday is still sore, and I can still see the hole in my knee where he put the needle in. I hope that doesn't mean I can't go for a swim tomorrow. Definitely all day yesterday, and from time to time today, my skin has HURT on the side of my knee, so that I can't even stand the feel of my trousers (which are soft linen). I'm guessing this is part of the pain you feel, its so awful, and I have increased admiration for you being able to put up with that and still be so nice to people!

anyway, I should go, I'm at work, and I think I need to sit quietly for a while before class.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 08, 2007, 11:44:32 PM
Hi Heather,

The sevens on the pain scale sound better, shame about everything above that though. Roll on the sixes!

Hopefully your doing ok at the moment.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 09, 2007, 05:02:53 AM
Heather....Congrats on your pain getting down to a 7 at times. Thats a good sign. I know all about the computer competition thing. I am always competing with the kids for a turn. That wont be for long, though, as Rick is getting me a laptop. ;D That will be so nice for my post op time.

I was getting something out of my dresser last night, and must have moved the wrong way or something, and it felt like my whole knee cap shifted. Major, major pain! I yelled, and Rick came to see what was wrong. It swelled up like a balloon, and hurts on the medial side this time. PT said my knee is just shot and I need a new one. Lol. Ok. I know this. ::) So, just did heel slides today, then stim and ice. Now, swollen again and throbbing. Took some tylenol pm, as im not supposed to take pain meds. Can feel them kicking...make me sleepy. So am heading off of here real soon.

Enjoy the nice weather. Its "good for what ails us", right? ;D Definitely beats rain and snow. Love the sunshine.

I will let you know what my OS says Thurs. and what date I get. You take care and try and stay positive. Remember, God doesnt give us anything he doesnt  think we can handle. You are a strong person. I know you are asking, "why me". I would be too. Maybe someday it will all come to light.

With lots of hugs....

DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 09, 2007, 09:20:10 PM
hi heather!!
thanks for the e.mail!!
i will reply to you tomorrow as im going to bed shortly!!
i had a not so good day today and have tired myself out!
im so pleased to hear that youe pain levels are starting to come down,i hope this continues and you are soon going lower then 7 and it stays consisient rather then peaking at 9 or 10 again.
what have you been up to today?
i hope the appointment with the pain clinic went okay,did he have any more suggestions of how to reduce it any further,the injections you and lozzie have to have sound awful,i know no-one likes needles but i am such a wimp and even reading that the hole where the needle went in for lozzie can still be seem makes me feel wobbly!! (and thats nothing to do with my dodgy knee!!!)
did you enjoy the birthday dinner??
the weather you are having sounds lovely,im glad your managing to get out in it!
its raining here at the moment,its a shame as the bank holiday here was quite nice as rain was forecast again.
take care heather,will reply to your e.mail tomorrow!!
love claire x
good luck tomorrow donna!!
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 10, 2007, 05:07:09 AM
Claire...How are you? Thanks for the luck, but my appt. is now the 24th due to a family emergency for the OS. Disappointed, but Ill be ok. Could be worse.

How is everything going with you?

Long day here too. Bed real soon.

DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 10, 2007, 08:17:27 PM
Hi All -

Today has been alright . . . pain has been about 7 1/2 most of the day, but has ranged from 6 1/2 - 10 at various points last night and today.  Still really tired (I continue to wake up multiple times each night) and struggle with dizziness, swelling, skin discoloration, difficulty focusing/concentrating, etc.  My pain doctor did not do another injection when I saw him yesterday because he said that it's important to give my back a break from them so that I do not end up with chronic back pain from them.  Therefore, I do not go back to see the pain doctor again until June 4.  However, I am supposed to continue with physical therapy, as the pain doctor says this is going to be the main treatment to help the symptoms improve.  Yesterday the pain doctor also mentioned to me that, if months down the road, the pain is still there and I'm still needing to take all of this medication, that he would then discuss with me the possibility of a spinal cord stimulator so that I woudn't need to take so much medication (especially the narcotics).  He explained what it was and how it worked to help with chronic pain, but said that it would be something to consider a few months from now.  He wrote a prescription for me for Ambien CR.  I told him that my Ambien prescription would run out before I was scheduled to see him again.  He explained that Ambien only works for about 3 hours or so and asked me if I was having trouble with waking up in the middle of the night.  When I told him I was waking up due to the pain, he told me that he would write the prescription for Ambien CR (which has an additional medication in it to help a person stay asleep) if I would like to try that instead.  So that's what I did.  Other than that, all of my medications were kept the same and (although the pain hasn't gone below 6 1/2 yet) I just have to try to learn to live with the pain in the meantime until my next appointment at the pain clinic on June 4.  I'm just trying to remind myself to be thankful that the pain has gone below an 8, which works sometimes, but is nearly impossible to do at other times. 

This whole thing has just been wearing me down.  I just cried and cried and cried last night! :'(  I don't feel like getting into the specifics right now about what started me crying, but once I started, I just couldn't stop!  It seemed like every bit of liquid that I had in my body just had to come out as tears last night! :'(  Although there are still a lot of things with this whole situation that are getting me down, I feel a bit better today and think that it helped to let some of the negative feelings come out last night.  Sometimes it helps just to release the feelings even if it doesn't change the situation.

I need to get off of the computer for a bit, but will try to get back on later today/tonight to respond to each of you more specifically (that is, unless my parents decide to hog the computer tonight  :P ;) . . . just joking, it is THEIR computer afterall. ;)).  Anyways . . . I hope you are all having a good day/night/week.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 10, 2007, 10:41:59 PM
Hi All -

I managed to get back on the computer for a bit and wanted to respond to each of your messages.  So here goes . . .

SAUL - Thank you so much for your support and encouragement!  I really appreciate it! :)  I'm glad to hear that my progress helps you also!  Knowing that actually gives me more strength to continue fighting and trying to get my life back! :)  How are you doing today?  I hope that things are going well for you.  I'm glad to hear that you are generally pain-killer-free (except PT days) and that you are getting a bit more sleep!  I hope that you are able to get even more sleep though, as I know that 5 hours/night is not enough (although, as you said, it's better than 3).  I wonder if your doctor would be willing to prescribe Ambien CR for you.  I haven't taken it yet, but it is what my pain doctor prescribed for me to use when my Ambien runs out in a few weeks.  Anyways . . . just an idea.  Also, have you been outside to enjoy the nice weather today (I think it was supposed to be nice where you are)?  It was sunny here earlier today, but looks like there's a storm coming now.  Please let me know what's been going on for you.  I've been keeping you in my thoughts and prayers.  Please take care.

Heather

LORRAINE - Thank you for the support and encouragement!  I appreciate it a great deal! :)  I'm sorry to hear that you've had such an extra rough couple of days (on top of the rough past months)!  I can understand about the crying (and it can be scary when you cry so much that your chest hurts that much).  If there is anything at all that I can do for you, please let me know.  You can only be strong for so long without letting the feelings come out.  Although it's hard to see it at the time (and I know I have a hard time reminding myself of this when I'm crying), I think crying when going through so much (or after the case sometimes) actually makes a person stronger.  That's just my 2-cents worth.  Please know that you are in my thoughts and prayers.  I'm sorry to hear that your injection site is still sore and that it HURTS to have your pants touch it! :(  I can definitely understand those feelings.  That sounds awful to be able to see the hole in your knee where the needle went in! :(  Thankfully, my injections were in my back so I couldn't actually see any holes because that would have made me extra whimpy about the next injection I had to get. :-\ ::)  How are you doing today?  Has the injection site gotten any better?  what about the pain of the pants touching your knee?  I hope that you are doing better.  Try to keep thinking good thoughts about going to the beach soon.  Do you have a countdown going yet?  How many days until you're there?  I'm jealous . . . a week at the beach sounds great! :)  Please take care.

Heather

GARTH - Thank you for your support and kind words!  It is appreciated! :)  How are you doing?  Please keep me updated.  I hope that everything is going well for you and that the knees aren't giving you too much touble today!  Sorry to hear about the cow and the positive TB test.  Please know that you are in my thoughts and prayers.  Take care.

Heather

DONNA - Thank you so much for the encouragement and support!  I really appreciate it! :)  I'm sorry to hear that you're having more trouble with your knee and that your OS appointment was postponed! :(  I can really understand that frustration.  It's horrible when you feel like you've gotten yourself mentally prepared and then the plans change and you have to wait (and try to get yourself mentally prepared again).  Hang in there.  I'm here for you if you need someone to talk to, vent to, or if you want some interesting quotes (since we both like them).  Just let me know if you need anything.  In your message to me, you expressed understanding that I was probably asking "why me?" and that you would probably be asking yourself in a similar situation.  Well, I do wrestle with asking "why me?" and will probably continue to do so at times.  However, it helps to know you understand.  Well . . . I want to send that message back to you . . . I understand that you may be asking "why me?" with all that you've been through and the appointment being rescheduled and I know I would be asking myself the same question in a similar situation.  You are a strong person and so very kind and supportive of others!  Maybe we will both get answers to our questions of "why me?".  However, we may never know, but we both know the One who does and can rest in that.  Please know that you are in my thoughts and prayers.  Take care.

Heather

CLAIRE - Thank you for your support and encouragement!  It is really appreciated! :)  I'm sorry to hear that it is rainy in your part of the world.  I know that sunshine definitely makes my mood feel better and makes it easier to tolerate pain (also, rain makes my knees feel extra achey).  It's been very sunny here the past few days (and earlier today), but it looks like there is a storm a-brewing right now.  I hope if we get anything that it will be a thunderstorm, as I actually enjoy sitting in the house and watching thunderstorms sometimes (it's better than just having it be cloudy and gloomy outside).  In response to your question . . . yes, I enjoyed the birthday dinner.  It was for my grandmother's 74th birthday and it was quite nice to spend time just sitting around, talking with my family.  How are you doing?  How's the knee feeling today?  I hope things are going better for you!  If you ever need anything, please don't hesitate to ask.  I'm here to support you in any way that I can.  You are in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 10, 2007, 11:53:46 PM
Hi Heather,

Hope that you are doing OK today. These lower pain levels that you are getting must be a good sign. Glad to hear that your pain doctor is willing to try out other treatments if things continue to stay bad. How do you feel about them? Lets hope he doesn't need to that though.

Nothing too much to add about my knees today. The right one behaved and the left carried on with the normal tricks. Had a really unpleasent "double crack" from it when going down the stairs an hour or so ago. I nearly fell over and it hurt a fair bit for a good 10 mns. Calmed down far quicker than I expected it to, which was a nice change. That type of thing can hurt for hours.

Finally seeing the physion tomorrow. I've had to wait longer than usual as the physio that I was seeing had some kind of accident and is off work. I've got a feeling there is now one physio looking after two sets of patients. Understandable why I've had to wait for so long. I don't have to go to work afterwards so I'll have the rest of the afternoon off. It will probably be raining good and proper. We've had a good 2 inches or more today.

Look after yourself

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 11, 2007, 03:00:41 AM
Hi Heather!

6 1/2!! That's fantastic! And I'm glad he's given you something to help you sleep. Sleep deprivation can be one of the most difficult things to deal with. For 3 weeks after my second operation I had horrible nightmares, and woke up lots in the night from pain as I had super sensitive stitches this time, and it made me feel awful, and I think did pretty bad things for my mood.

Today I saw a good friend of mine, and told him about my crying the other night. He's someone who understands me very well and when I told him why I had been crying, he just nodded, with complete validation of everything that's been difficult about this year. When I say that I've had a rough year, and someone who I care about and respect agrees with me, its so good. Its like we were talking about how its different to have someone physically there for you. He's not a boyfriend (I think his wife would object!  ;)) but we have a good level of intimacy in our conversations and it was so nice just to share my feelings, and then talk about something else and have a bit of a laugh. I'm sad you were crying again, but I really think its better out than in. It can't be good for you to hold in all that strain.

As for my knee, the hole has closed up, and now I just have a little bruise. The inflammation has gone down a lot and the pain at the injection site has gone too - thank goodness! I even managed to walk home tonight after my 12 hour day without any pain at all, so I think the injections are starting to work. I had some pain when I went out with my pal earlier today, but this evening I feel the best I've felt in about a year. I'm scared to put a hex on myself, but let's hope that keeps up! My biggest fear at the moment is that something bad will happen and I'll be back to square one. I guess, I know I'll be feeling bad again next Monday when I have the next injection, so the pain's not quite over yet!

Thanks for your kind thoughts, and I'm hoping that tonight you get to sleep for a bit more than 3 hours at a time.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 11, 2007, 06:56:19 PM
hi there!!

heather firstly i want to apologise for not replying to your e.mail yet,i have had abit of a difficult time at work this week and have been so tired,i also have a water infection at the moment so feel abit run down with myself and feverish.i will reply to it tonight.i promise.
im sorry you felt so bad the other day and had a cry,i hope it made you feel abit better to get it all out,i find it helps me a couple of days later but initially i can feel very drained emotionally and physically.
i hope you are feeling more positive now?? i also think crying can make you stronger (and showing your feelings is definatley not a weakness)
the spinal cord stimulator sounds intruiging....what is this and will it help with your pain levels??
well i'll be off for now.
take care,
thinking of you,
claire x

donna,things are going okay for me,i'm abit fed up with my work at the moment but i'll live!!
i hope you are okay! sorry again about the appointment being cancelled,i know how frustrating it is,my op was cancelled and i think its awful as you pysche yourself up and them are let down!
take care,
claire x

lozzie and garth!!
hello to you both!
i'll reply to you both in my diary!!
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 12, 2007, 07:14:29 PM
Hi Heather,

I am kinda catching up with things and some posts. I read yours the other night and I think the progress is fabulous. To see a 6 is great, although I am sorry to hear about the mood swings. My heart goes out to you. But the numbers seem to be coming down slowly and that is truly good news. I know it is easy to say patience when I amnot in the same situation, but I just want to let you know that I think that you are doing very well with everything before you. I know that your words have helped me tremendously and cannot express that enough.

i will talk more later. Wishing you my thoughts and prayers  :-*

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 13, 2007, 01:05:30 AM
Hey Heather....Was just sitting here thinking about you and thought I would write and let you know. How is your weekend going so far? Hows the pain? I hope you have been able to enjoy some sunshine. :)

I think maybe your mood swings are from all the meds, combined with stress. I know when they put me on meds for an asthma flare up, everyone in my house wants to move out. Lol. Seriously. And the worst part is, I know I am being a "biotch" and cannot control it. Ughhhh.

Im hanging in there. Knee has been swollen alot lately. Pain is tolerable right now. For some reason, I wanna cry at the drop of a hat the past few days. Dont know why. I think everything just catches up to us, and then Kaboom. But Ill be just fine. :)

Please let me know how you are doing. I hope you have a good night.

Hugs....DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 14, 2007, 11:20:42 PM
Hi Heather,

We didn't hear from you over the weekend. I hope its because you were out enjoying some sunshine and were too busy to write.

Please let us know how you're going.

Thinking of you,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 15, 2007, 10:19:24 PM
Hi Heather,

I hope your ok at the moment. I hear you managed to walk a bit with only one crutch. Sounds like progress :).

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: cherising on May 16, 2007, 01:25:07 AM
Hi Heather!   :D
I have been reading all of your diary and previous posts the past couple of days.  I just found out that I will be having MPFL reconstruction with LR to my Right knee.  I am 28 years old and a professional singer.  Used to dance professionally as well but my knee gave out on me when I was younger.  So when I went to my OS, he made it seem like these surgeries weren't a big deal.  Or maybe I just didnt ask enough questions.....wait, actually I dont think I really asked any questions because I was in shock.  Been doing alot of research and you are the only one I have found that has had both surgeries done at the same time and your recovery is scaring the crap out of me.  I am in a professional band and was hoping that I would just be out of commision for a month so I could get back to my performances but I am seeing that is probably not the case anymore   :o
I just made an appt with my OS again to go over everything and have TONS of questions for him now.  But I am honestly so scared for this surgery!  Parts of me doesnt want to do but my knee has been dislocating and sublaxing since I was 14 years old (i have an extreme case of hyperextension).
Any advice or motivation would be greatly appreciated!!
Hope your recovery is going better and I thank you for ALL of your posts and information that will help alot of other people!
Thanks again!
~Cherilyn
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 16, 2007, 02:34:25 AM
Hi All -

Sorry it has been a while since I posted on here.  As some of you know by reading Claire's diary, my laptop went kapputz (sp?) over the weekend so I had no computer and now that I'm staying with my parents again this week I am at their mercy with using the computer here (it can be tough when all of us are trying to find time to get on the computer).  To update everyone, my pain right now is an 8.  The best the pain has been in the last few days has been 6.  However, the pain still goes up to a 10 at some point(s) each day.  I managed to walk about 30 feet with only one crutch during PT yesterday.   However, it hurt alot as my knee repeatedly popped loudly when I was doing so.  My PT even heard it popping.  However, wouldn't you know it, the moment he put his hand on my knee while I was walking so he could try to feel where it was popping, it stopped doing it.  I guess that's kind of like when you go to the doctor because something is swollen or doing tricky things and then it doesn't do it when you're in the doctor's office.  Anyways . . . today my PT was able to push my knee to 100-degrees ROM (but it hurt so badly that I was biting the tip of my thumb to the point that it left indents there for quite a while).  I didn't walk on land with only one crutch today, but I did walk in the pool today with only holding on to the side of the pool with one hand and walked across the pool with holding onto a floating barbell-type of thing.  I really liked the pool therapy because it felt like I was able to get more done with less pain.  I don't have pool therapy any more this week because I have an appointment with the neurologist on Thursday right after my regular PT session.  However, next week I have PT 3 times and each time I am scheduled to start out doing some of my regular exercises in the main PT center (or "land exercises" as my PT puts it) and then will finish up each session with the pool exercises.  I'm glad we were finally able to get the pool therapy started!  My PT and I are hoping that the pool therapy may help me to re-learn how to walk more easily/quickly.  However, we don't really have any idea right now about how long it will be before I can actually ditch one of my crutches and only use one crutch or a cane.  I hope it won't be too much longer because I am so sick of using 2 crutches! :( 

In other news . . . I saw my GP today to follow-up regarding the results of an ultrasound that was done on my liver.  The ultrasound results indicate that I possibly have "fatty liver" and so I now have to see a gastroenterologist to determine if I need to take medication for it, what else should be done about it, and to see if additional tests need to be done to make sure that I don't have some obscure condition that is causing these problems.  I can't get in to see the gastroenterologist until June 21st.  I also found out today that there were some abnormalities on my sleep study so I have to see a neurologist on Thursday.  The test results showed some sleep apnea (but it was so trivial an amount that I don't need to use a CPAP machine), but it did show some sort of limb movement disorder that awakened me many times during the night (without me realizing that I was awake) and it was suggested that I may need some sort of medication to deal with that.  I really don't want to take any more medication or see any more doctors.

I am so frustrated with everything that's been going on and am not able to deal with all of this. :( :'(  The constant pain, other CRPS stuff, feeling like my life has been stolen from me, dealing with all of the medications that I have to take to even exist at the level I do now, side effects of meds, not being able to work or drive, having no end in sight to the pain and other problems, etc, etc, etc has really been getting to me.  :( :'( >:(  I cry at some point every day and some days for hours!!! :'( :'( :'(  There are lots of times that I don't know how to stop myself from crying! :'( :'( :'( I just don't know how to handle all of this in a positive manner! :'( :( :( :'( :'( :'( :'(  I just want my life back!!!! >:( :'( >:( :'( >:( :'(  This doesn't even feel like a life anymore . . . . it just feels like I'm existing (and sometimes not much of that either)! :'( :( :'( :( :'(  Sorry for the venting . . . just needed to get some of it out and don't really have anyone physically around me that I can vent to.

I hope that everyone else is having a better night/week than I am.  I'm sorry that I won't be able to respond to each of your messages directly tonight as I have to get off of the computer in a few minutes (never seem to get enough computer time when I have to share a computer with my parents :P).  However, I will try to get enough time on the computer tomorrow to be able to respond to each of your messages.  Please know that you are each in my thoughts and prayers.  Take care.

Heather

PS - Cherilyn, MPFL reconstruction with LR is a big deal.  My OS made quite a point to explain to me that it is a major surgery with major rehab/recovery time.  However, please keep in mind that my case is not the norm for this surgery.  I have had the complication of developing CRPS before my knee was fully rehabbed and so recovery/rehabilitation has not gone as well as it should have done.  If I were you, I would definitely make sure that all of my questions were answered prior to agreeing to the surgery.  However, please try not to worry too much thinking that things will be as difficult for you as they have been for me.  I have seen others who have had the same surgeries and have not had the kinds of difficulties that I have had.  If you have any questions for me, please don't hesitate to ask.  If there is anything that I can do to help you out, I would be glad to do so.  Please keep in touch and take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 16, 2007, 06:07:47 PM
hi there heather!!
just a quick note here to let you know im going to reply to you more in a return e.mail!!
"speak" to you soon!!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 16, 2007, 10:31:06 PM
Hello Everyone -

Things are rather gloomy here.  The weather is quite stormy today which does not help my mood any. :(  Pain is currently an 8, but it still goes up to a 10 at times each day.  I've been very tired all day, actually I've been tired for weeks now.  In addition to the pain; I'm still struggling with dizziness, swelling, trouble concentrating/focusing, trouble remembering things, extreme stiffness in my knee (and moderate stiffness in my ankle), sweating on my left leg (when nothing else on me is sweating), left leg switching from being much hotter than the rest of me to being much colder than the rest of me, red splotchy skin (on left leg) with purplish streaks in it, etc.  I've cried a couple of times today and am still having a really difficult time dealing with everything that has been going on for me the past few months! :'( :'( :'(  I'm not sure how to handle, in a positive way, the constant pain and the feeling that my life has been stolen from me! :'( :( :'(  I just don't know what to do!  How is a person supposed to deal (in a positive manner) with the CRPS (pain and other symptoms), meds, side-effects of meds, other medical stuff going on, not being able to work, not being able to drive, financial difficulties, not being able to participate in other activities one enjoys, not being able to walk without the use of crutches, etc, etc, etc????!!!! :'( :'( :'(  Especially when one doesn't have someone physically around them with whom they can discuss emotions and mental state type of things??? :'( :'( :'(  I apologize for the negative posting.  That's just the state that I'm in.  Actually that's the state that I've been in for quite a while now, it's just that my ability to try to convince others (and myself) that I'm more positive than I am has been crumbling to pieces all around me lately.

I apologize that I'm not able to directly respond to each person's message on here right now, but my sister and brother-in-law just got to my parents' house for dinner so I need to get off of the computer.  I will try to log on later tonight (if my parents don't need to use their computer the whole evening after dinner) to respond directly to each of the messages.  I hope you are all having a good night/week.  Please know that you are each in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 17, 2007, 01:59:44 AM
Hi Heather,

I've replied to your email as well, but please don't feel that you have to apologise. We're here to help you however we can, and its ok if you can't get onto the computer or don't want to. Remember you are coping with a great deal, and your feelings of aloneness are to be expected. I'm really sorry for how you're feeling, but if it helps, I do know exactly what you mean with the aloneness part of things, and I can definitely empathise with all the other stuff. I bet it just seems like it'll never have an end, doesn't it.

Please don't give up, and come here for a vent any time you want. Remember we are here for you and that you have lots of wonderful doctors to help you with everything that's going on just now. I know those things don't replace having that someone special to share this with, but there are people who love you and want to help you be better.

Take care, and a big hug,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 17, 2007, 08:05:17 PM
hi heather!
i thought i would add a quick response to you here aswell but i have just finished replying to your e.mail!
i agree with lozzie,you do not have to apologise at all,i would also find it very difficult to try and be positive dealing with all the stuff you are having to deal with right now.
there are alot of people on this site who worry about you and care about how you are feeling ..........me being one of them!!
take care and i have you in my thoughts!
love,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 18, 2007, 12:19:46 AM
Heather,

                 DITTO               

Claire x and lozzie are right !!

Have a hug, Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 19, 2007, 09:13:40 PM
Hi Heather,

I hope your doing ok at the moment.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 19, 2007, 09:41:20 PM
Hello Heather,

I just wanted to check in and see how you are doing and hope the pain scale is same or maybe a little BETTER  ;D ;D ;D.  I hope you are enjoying the weekend and will find you soon.

All my thoughts and prayers !!

 8)  Saul   :-*  and a hug !!!
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 20, 2007, 12:24:19 AM
Just sending lots of big H-U-G-S to you, Heather, and to let you know I am thinking about you.  :D

Donna :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 20, 2007, 01:46:15 AM
Hi Heather,

I just wanted to let you know that I'm going away for a week and probably won't be able to get near a computer. I hope you're ok, and I will be thinking of you.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: step on May 20, 2007, 12:28:05 PM
Dear Heather,

Sorry I haven't been writing to you for so long: I went back to work, so it was so tough to find time to be online from home, especially as I wasn't well at all, so I would crawl back home every evening and find it hard to do else than the mandatory tasks.

But I'm getting better, even if I'm far from being OK. So this is a short note to let you know I'm there, to send hugs and well-wishes, and prayers - as everyone else in their earlier notes.

A big hug,

Lennie
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 20, 2007, 02:15:40 PM
hi heather,im concerned i have not heard from you.
i hope you are doing okay and want you to remember i'm here for you!!i hope you got my e.mails okay?
take care.
im keeping you in my thoughts.
claire
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 25, 2007, 01:59:43 AM
Hello Everyone -

Sorry for the long silence on here, but I was admitted to the hospital last Thursday (5/17) and was just released yesterday morning.  Things happened so quickly on Thursday that I didn't have a chance to tell anyone (other than my parents) that I was going to the hospital.  On Thursday I met with a neurologist in my town for the first time (this is the same appointment that I had tried to get out of when I went to see my GP last Tuesday . . . as you'll see in a few moments, I'm sooooooooooooo glad I did not cancel this appointment ;D) about my sleep study results, so the neurologst went over the results and discussed the medication prescription with me.  Then he asked me what was wrong with my leg, so I told him that I have CRPS and he said "you haven't moved that leg since you've been in the office".  I told him that I move it more at home, but that I still have trouble with movement due to the pain.  We discussed some more about the pain and other symptoms that I have and the surgery and time frames for how long ago everything started.  When he heard that this had all started within the last 6 months for me, he seemed pretty confident in telling me that he could "fix that" (CRPS leg).  It was explained that by "fixing it" it did not mean he could cure it because there is no cure, but that he could get it into remission.  The neurologist said that he has had good success with using a 5-day course of intrvenous Lidocaine so that the pain goes into remission (varying degrees and varying lengths of time).  He said that you have to stay in the hospital the entire time you receive this Lidocaine treatment because you have to remain on cardiac monitoring the entire time because the Lidocaine can mess with your heart rate and blood pressure among other side effects.  He said that he could begin that treatment as quickly as that day, if that is what I told him I wanted to do.  Since I was already in so much pain, I went to the ER and asked the ER doctor to call the neurologist in on a consult.  So that started my hospital stay and my intravenous course of Lidocaine.  This is a treatment that my pain clinic doctor never even mentioned.  My OS also consulted during my hospital stay and he has never heard of this treatment, but he said he wanted to see me in his office 1 week after I was released from the hospital so that he could see the possible effects of this treatment after the course of Lidocaine is done.  The neurologist seems to know a lot about this condition and said that he could show me a stack of articles at least 6 inches tall documenting the success of this particular treatment with the condition.  I feel so very blessed that my GP referred me to this particular neurologist for sleep study results and that I kept the appointment with this particular neurologist (after my GP had told me last Tuesday that I either needed to see this neurologist or I could take the results to a neurologist in another town whom I had previously seen)!  Now for all of you who are still reading this  . . . the burning/CRPS/nerve pain has gone down to . . . drum roll please . . . . . . . . . ..  . . . . . . 0.5.  Yes, there is no need to adjust your screens you are reading that correctly, I said a "0.5"!!!!! ;D ;D ;D ;D ;D

Now, there are still the "normal" aches and pains in the knee that go along with rehabbing a knee, but the horrible overriding "blow torch under the skin" CRPS nerve pain is just barely there at the moment.  Now just keeping my fingers crossed that it will stay that low.  I see the neurologist again on July 2nd, so we will see. 

I will update more as soon as I can, but I'm still staying at my parents house right now (just out of the hospital and adjusting to new meds, etc) and my parents are having some carpentry work done on there house so it's a bit tricky as to when I can actually get to the computer desk at the moment (not to mention having to share computer time with my parents).  Oh well, right now, I'm just so glad to have found such drastic pain relief nothing much is bothering me today.  Thank you all for you thoughts, concerns, and well wishes.  I apologize that I'm not going to get a chance to respond to you each individually at this time.  However, please know that you are each thanked and thought of each day.  Please take care.

Heather ;D ;D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on May 25, 2007, 03:06:09 PM
Hi Heather,

Thats fantastic news about you hitting 0.5, I hope it stays that way, or can at least be better contolled now. It must be one heck of a relief.
Will you be able to resume normal PT etc now that the pain is down?

Have you got around to getting that laptop fixed yet? Is it a hardware or software problem? I may be able to give you some pointers if its windows playing up as I have been covering a load of that in my course.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 25, 2007, 04:13:32 PM
Heather....I am sooooooooooo happy for you!!!! :) ;D :D  :-* I was so worried about you and that is fantastic news!!  ;D ;D ;D ;D Prayers definitely work! :D

I posted in calendar of events. I dont mean to make this short, but after you read, you will understand.

I will check back in on you later on....

Hugs....Donna ;D
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on May 25, 2007, 05:17:26 PM
 :o :o :o  Heather   ::) ::) ::)

I do not know what say but "Holy Sh*t!!!!!!!!!!!!!!   That is fantastic news!!!!!!!!!!!!!

WOW !!!!!!!!

Congrats

ENJOY THE HOLIDAY WEEKEND        PARTY TIME

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 26, 2007, 03:08:21 AM
Hello Everyone -

Nerve pain is still down to a 0.5!!! ;D  So far, so good!  I still get scared or worried that the overriding horrible burning pain is going to come back with a vengeance any time, but right now I'm enjoying any time that I can have with such drastic relief from the CRPS pain.  I'm trying to maintain a nice healthy balance between thoroughly enjoying this pain relief and really pushing myself to rehab my knee while not doing anything that would stupidly set off the nerves to go all haywire again so soon.

I had a day with no PT or doctor's appointments, so the big event for the day was going to some yard sales with my mom and nephew.  I sat in the car and looked at some of the yard sales while my mom walked up to check the prices.  However, there were a number of yard sales that I got out and walked around over some questionable terrain (ie, uneven ground, uncut hay, sudden drop-offs on the side of the road, etc) and my knee/leg seems to have held up pretty well.  My knee is a bit more sore/achey tonight most likely from what I did earlier today, but I think it held up well. 

Oh . . . I forgot to mention . . . I'm now walking with only one crutch also! ;D  I don't wear a brace or anything, I just use 1 crutch for some support.  I took walks down the hallways each day while in the hospital when a nurse was available to walk with me (wasn't allowed to walk by myself due to risk of falling).  One day while in the hospital I walked the length of a long + a short hallway with NO CRUTCHES!!! ;D  I went into the hospital on Thursday using 2 crutches and after 3 days or so on the Lidocaine treatment, I walked with no crutches!  That same day I did 1500 leg "kick outs" (those things where you sit on the side of the bed or a chair and straighten your leg and bend it again)!  I decided I may have been a bit over-excited and tried to do too much that day, so the next day I cut back to using 1 crutch and only doing 1300 "kick outs".  My neurologist had heard about my walk with no crutches and how often I was doing the "kick outs" before he even came in to see me the next morning and he seemed quite pleased with all that I had been doing.  I told him that I thought that I may have been over-doing it a bit and he pointed out that keeping it moving and doing the exercises was going to be the main thing that was going to get me better and improve this condition.  Every day when I was in the hospital, after the nurse took me for a walk, I would stand at the bar in the hallway doing all of the PT exercises that I could do without having the actual exercise machines there on the floor.  Nurses, my roommate, and various people commented on how I was doing my PT exercises each day.  I was just so excited to have had the CRPS pain go down so drastically that I was more than happy to put the extra "uumph" into doing my PT exercises to rehab the knee and to keep the ankle, knee, and hip joints on that leg moving so the CRPS symptoms would go into remission and stay there as long as possible.  When the neurologist came to see me the morning that I was being discharged from the hospital, he asked if I was walking out of the hospital with no crutches and was going to hang them up on the wall.  When I told him that I thought that my leg wasn't strong enough yet to go without the crutches permanently but that I was only going to be using one crutch instead of the two I had come in on, he said that he'd better not see me using two crutches, that I was to use no more than one crutch and to keep the leg moving.  So . . . I've been following that advice.  Since I've come home, I've only been using one crutch and have kept the leg moving as much as possible.

Sorry for the long message . . . I just realized how much I've rambled on about my walking and self-PT stuff at the hospital.  Thank you all for your support and help through such a difficult time!  I can't believe the change that came for me in a matter of days after so many weeks/months of problems and pain!  Just keeping my fingers crossed that this is the beginning of a nice lengthy remission.  Thank you for all of your prayers!  They seem to be working! ;D  This neurologist really seems to know what he is doing with this condition and know ways to get the condition into remission.  Thank you all for the congrats!!!  I wish and pray for the same kind of relief for each of you!  Garth, I'll have to get back to you about the computer stuff because we still haven't had a chance to get it looked at yet; but I think it's a software (operating system) problem.  Donna, I'll have to check your calendar of events as soon as I'm done here.  Saul - Enjoy the holiday weekend you party dude . . . congrats on losing the mechanical leg and crutches!  Please know that you are each in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 26, 2007, 04:06:30 AM
(http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif) (http://i4.photobucket.com/albums/y128/lozwich/applause.gif)

THAT IS SUCH FANTASTIC NEWS HEATHER!!!!!! and its great that you told us all the news, not ranting at all, its great that we can share your successess! I am so very happy for you!

Shall we go out dancing this weekend then??  ;)

Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 26, 2007, 04:23:55 PM
Lorraine -

Thanks for the congrats! ;D  How are you doing?  How's the vacation going?  Are you still on your vacation or are you back already?  If I had the money to do so, I would throw a big celebration beach party for all of us to attend! ;D Although I would definitely need to get a tan before that as I've noticed that my legs look like they belong to a ghost or something (except for when my CRPS-leg still decides to become a rainbow - all shades of pinks, reds, purples . . . the Dr. says we'll worry about all of these other symptoms later, but that we were just focusing on getting the pain into remission first . . . that's fine with me!)! ;) ;D :P :D  I know I still have a long way to go with rehabbing this knee and that the CRPS stuff with this leg is something that I will have to deal with for the rest of my life as there is no cure for it; but right now I am so pleased to be getting such relief from the CRPS nerve pain and possibly getting this into remission!  This neurologist sounds very knowlegeable in this area and it was so nice to be given the hope that he could get it into remission and then to hear him talk about different things that can be done then to keep it in remission or to get it into remission again if it were to begin to flare up again. :)  I'm sure I will still have my up and down days, but right now I just feel like a weight has been lifted off of me like there has been this huge boulder blocking the path for me and the boulder has suddenly been moved off the path so that I can continue along the way towards getting my life back! :)

CRPS nerve pain-wise . . . so far, so good . . . the pain has stayed down at 0.5 so it is just barely there.  I'm still struggling with limited ROM and the "normal" aches/pains that go along with rehabbing a knee.  I'm also having quite a bit of trouble sleeping comfortably as I notice that my knee stiffens up on me quite a bit, I'm now no longer sleeping in a brace, and trying to adjust to a bunch of medication changes (significantly increased dosage on one, added two meds, stopped taking narcotic pain medication, etc.).  I think it's just going to take some time to get the sleep thing to get straightened out and although my knee is most definitely uncomfortable at night, with the CRPS nerve pain being so drastically reduced and with all of the other medications that I'm on, I don't want to be taking a narcotic pain medication for my knee at this time.  However, these are all small prices to pay for the significant nerve-pain relief I feel and the hope that I have of getting my life back over time (work, driving, bowling, chasing my nephew around, etc)!

Anyways . . . I hope that you have had a good relaxing, refreshing vacation!  You most definitely deserve it! :) ;D  Please let me know how you are doing.  You are in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 26, 2007, 05:57:31 PM
Hi Heather,

That's great you're off the narcotics! I hate taking painkillers, especially after the example of my mum who has taken what in my opinion is too many painkillers throughout her life, and now she has pretty horrendous arthritis and is looking at having a hip replacement at 62, and the painkillers don't work for her very well. Also, just the way pain drugs affect people's moods, I think its a positive step that you have managed to find something that means you don't need them anymore. I think you're right about the sleep thing, I guess your body clock has been all mixed up and its going to take a bit of settling. The stiffness at night wouldn't help. Sometimes I wake up in pain these days (nights??  ;)) and its seems like its for no reason. My skin still sometimes hurts around one of the incisions and that can annoy me at night too. I'm really glad you've got your pain down, it'll definitely make all your young careerist stuff a lot easier!

As for me, well, I don't know that the holiday helped at all, or if maybe what is going on with me is something that only time can heal. Like I said in Claire's diary, I'm back to work on Monday, which will help me take my mind off things, but I seem to only have negative thoughts these days. Some days were really nice on my holiday, but I feel lonely a lot of the time, but also kind of annoyed with myself for being so gloomy. I keep reminding myself that I've been through so much this year and have really pushed my willpower to its limit (even quit smoking and had a visit home to Australia in the middle of all of this too!) so its natural to just be exhausted by life, but I really worry that I'm going to become this grumpy old spinster with lots of cats and a bad attitude! One of my closest friends is leaving in 2 weeks, and almost all the others are going at the beginning of August and I'm scared I won't make new friends, won't be fit enough to join the hiking club, will never lose the weight I put on because I'm getting older and its more difficult each year and blah blah blah. I take my knee medicine and do my exercises to make me physically better, but I feel like I don't know what to do to make the mental effects go away. I just feel so sad. Maybe I should try some more counselling, but I don't have a lot of the symptoms of full-blown depression, so its even hard to motivate myself to do that. I guess life's been on hold this past 12 months while I've been having the surgeries, and its a big task to get the energy to rebuild it, especially in a country that's not my own.

That's not very cheerful is it??  :) Its funny, because I feel gloomy but also ok at the same time and have long moments where I feel very happy indeed. I just found out that I'm going out to dinner tonight, so that will be good! Its rainy today in Bogota, so I'm just pottering around doing washing and stuff and enjoying being back at home.

Take care, and thanks for your lovely message. I hope you're having a nice weekend. That beach party sounds like a great idea!
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on May 30, 2007, 12:54:46 AM
Hi all -

Not much to post today, but I wanted to update a bit on things.  Nerve pain is still down to around 0.5.  The "normal" knee pains that go along with rehabbing a knee have been flaring up for me a bit the last few days, but especially today.  I think the main reason for the increased "normal" rehab knee pain today is that I had a double-dose of PT today . . . I had pool therapy and then followed that up with the regular land exercises PT!  Ugh!  It was nice to see how much I could do, but it was tough! :-\ ::) :P  Oh well, I survived it without the nerve pain increasing. :)  Now the trick is to keep the knee from stiffening up on me the rest of the evening. ::) :P  Other than the PT stuff . . . I'm still just trying to adjust to the changes in my medications and trying to find a way to sleep comfortably (haven't been very successful in the sleep department so far :().  Also, I have an appointment with my OS tomorrow afternoon to see if there is anything else that can be done to increase my ROM since I'm still only in the 95-105 degree range.  I'll update you all when I have some more information.  Take care.

Heather

LORRAINE - I'm very sorry to hear about the tough time you've been having with things lately and that the vacation didn't really seem to help. :(  You have had a really rough year and have demanded a lot of yourself (mind, body, spirit, willpower).  It's going to take some time before all of those reserves are built back up again.  I know it's tough to do, but please try to cut yourself a break and not be so hard on yourself.  Also, please keep in mind that a person does not have to have full-blown depression to benefit from counseling.  However, I can understand how not having a lot of the symtoms could make it harder to motivate oneself to do the counseling.  Please feel free to drop me an email if you ever want to "talk".  I'm here for you in anyway that I can be.  You are in my thoughts and prayers.  Please take care.

Heather 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on May 30, 2007, 02:37:40 PM
Hi Heather,

Thank you so much for your lovely message. I'm coming to realise that maybe the holiday did have a purpose after all, because I feel a lot more comfortable that things aren't so good for me just now. I was always the capable one in my family, and to give myself permission to only deal with small things, or one day at a time stuff has made life a lot easier. Its hard at the moment, because my schedule has changed radically, from working mornings to all evenings, which takes a bit of getting used to, but I'm sure I'll get there. Learning to ask for help has given me some nice surprises too. I never thought getting my knees fixed would have such an effect on my personality!   ;)

I'm so glad your pain is still down to .5! Please let me know how the OS appointment goes today. We don't want you having one of those nasty MUA's, but maybe he can suggest some other alternatives. I haven't been back to the pool since I got back from my holiday, but I'm glad that you've been going.

Anyway, thanks again for your lovely message. It was nice to hear from you, and I hope things continue to improve.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on May 31, 2007, 03:01:39 PM
Heather....Its so good to hear that you are doing so much better. Getting the pain under control is a major accomplishment. :) Hang in there, girl. You are gonna be just fine.

Hugs...DONNA
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on May 31, 2007, 08:02:25 PM
hi heather!!
im so sory i have not been in touch,ive updated my diary with more info but ive been feeling pretty crap lately.
i will reply to your e.mail in the next couple of days.
im so so pleased for you that you pain levels have been reduced so much!! i cannot say how good it is to hear things are finally looking up for you and you can start to try and get your life back again after so much pain.
take care for me and i'll be in touch soon!
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 01, 2007, 03:05:45 AM
Hi All -

Thank you all for your replies, support, and encouragement.  I really appreciate it. :)  I will try to update more tomorrow because I don't really feel much up to typing tonight about what all has been going on for me with my knee, my OS visit yesterday, etc.  I'm in a bit of a funk/depressed mood at the moment.:( :'(  There are a lot of different things going on in my life right now (knee stuff, not working, financial difficulties, various kinds of losses, strained/changed relationships, etc). :'( :-\  Thankfully, the nerve pain is still down at 0.5!  :)  I'm just hoping that it will stay there and that this means that I'm at the beginning of a remission from the CRPS pain and that we (neurologist and I) can get some of the other symptoms (swelling, skin discoloration, etc) to also go into remission soon.  The pain in the knee itself, however, is about a 5 or so and sometimes goes a bit higher so it is definitely in the uncomfortable range.  At least I know that the pain in the knee is "normal" for rehabbing a knee (even if it is rather delayed by quite a few months due to having to deal with the CRPS nerve pain before the knee was rehabbed after surgery).  :-\  Anyways . . . like I said, I will try to update more tomorrow (or at least sometime over the weekend).  Please know that you are all in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 01, 2007, 04:16:50 AM
Heather,

We can definitely agree on 2 things, the first is the financial garbage and the second is not working or for me I have started looking again now that I know I will be able to do some things soon. And yes, it can be depressing, and I think that they have been contributing factors of how I have been feeling or acting. We will get through this !!!!!

Lots of Love !!!!!!!!!!!     :-*

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 01, 2007, 06:25:17 PM
Hi Heather,

Its good to hear you're medium ok, although I know how much all the other stuff that refuses to stop just because you have bad knees can be a real drag. I feel like all I can cope with now is looking after my knees and anything else is just too hard! I haven't been at work for the last few days because I've lost my voice, which makes teaching a bit of a challenge! I've got cabin fever already, and I just called the doc to see if I can at least use some machines at the gym since I don't want to use the pool while I've got a respiratory problem and he basically said no. Still no bicycle and no elliptical cross trainer thingy either! Stupid knees! At least I've ordered a book from Amazon which is a good guide for yoga for people with injuries. When it arrives I'll be able to at least exercise at home, and try not to think about the money I've wasted on a gymnasium that I can't use!

That's probably over-reacting a bit, but I just feel so fed up and frustrated today!  >:( Feel like its not just my knees anymore, but my whole body letting me down!
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 01, 2007, 06:38:56 PM
hi heather,
i hope soon the other aspects of your life get sorted out and get better like the crps pain.
i think its bad enough having to put up with pain without all the family/financial stuff on top of it all.
i will reply to your e.mail this weekend so we can catch up on each others problems and try and help each other out!
take care and im thinking of you!
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 01, 2007, 11:17:55 PM
Thank you everyone for your support and encouragement!  It means a lot to me!  I just wanted to let you all know that I've read your messages and really appreciate it.  However, I'm not up to typing/talking much tonight because I'm really feeling in a funk.  I've got a lot of different things weighing on me, contributing to this depression.  I apologize for not being more "up" and ready to talk lately.  I will try to update and talk more sometime over the weekend.  Please know that you are all greatly appreciated and that I keep each of you in my thoughts and prayers.  Take care.

Heather
 
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 02, 2007, 03:25:34 AM
Heather,

All is understood, probably more than you may realize. Iknow for me the last week my moods have been all of the place. But take care and I hope you get some rain on, since you are the other side of the mountains your weather is so different. The mountains tend to block alot of the weather patterns. have a very good weekend !!!!


Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on June 02, 2007, 05:22:47 AM
Just wanted to send a big hug to you Heather. Feel better.... :-*

Donna
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 02, 2007, 05:32:33 PM
hi heather,
i will respond to your e.mail this weekend and you can "talk" to me about your problems if you want to?  :-\
i felt really low with myself last week and can really relate to how all aspects of your life can get you down at once,i think if one thing goes wrong everything seems to go wrong,you end up wondering if things could get any worse.
i hope things soon start to improve and you can get your spirits lifted in some way to help you through. :-[
remember you have many many cyber friends on here who care about you and are here for you too!
love claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 03, 2007, 10:20:27 PM
Thank you everyone for your supportive and encouraging messages!  I appreciate it!  Saul, I'm getting some rain right now and it doesn't show any signs of stopping.  Donna, thanks for the hug (and sending one right back to you).  Claire, I just posted a short message to you on your ROM diary.  Once again . . .thank you, everyone.  I'm sorry, but I'm still not up for really talking much at the moment as I'm still feeling rather depressed. :( :'(  There are a lot of things going on (some of which I'm not even sure how to put into words) and I'm just not sure that I have the energy/willpower to express myself in words at the moment.  I apologize that I haven't been talking with you all/been more supportive of everyone lately.  However, I want you all to know that I keep each of you in my thoughts and prayers daily.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 03, 2007, 10:29:19 PM
Hi Heather,

Its raining here too, although its rainy season at the moment, which means its going to rain for at least another month. Its nice to go to sleep listening to it, but not so much fun during the day!

Don't worry about not being supportive, you've been so helpful to all of us, now its our turn to support you! I'm always here for you, and if you feel like talking on MSN, or sending me an email, feel free. I don't like to pry, but if its connected to those other things we talked about, maybe I can help? Remember its ok to feel down. I was starting to feel better, but like you read on Claire's diary, I've done something to my knee, and while I can tell its nothing too serious, it feels like a bit of a setback. I'm a bit worried about going to work tomorrow, but can't really cancel, since I had Thursday and Friday off for my sore throat.

Please take care, and I'm here for you if you want to talk.

Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 03, 2007, 11:00:45 PM
Lorraine -

Thank you for your support and understanding.  To answer your question . . . yes, at least part of it, is connected to the things that we talked about before.  Thank you for your offer to talk, but I don't have access to MSN Messenger at this time (my computer is still down and my parents don't have any kind of Instant Messenger on their computer).  However, I may take you up on the offer to talk via email when I feel up to talking (ie, trying to put into words what I'm experiencing) a bit more.  Thank you for the support.  Good luck with work tomorrow and let me know how it goes.  You are in my thoughts and prayers.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 03, 2007, 11:14:15 PM
hi heather!
i have sent you an e.mail this evening and responded to you in my ROM diary but thought i'd quickly reply to you here too.
like lozzie,i'm here for you also and if you feel up to e.mailing to "talk" about your troubles i'd be very pleased to listen!
i can relate to you not really knowing how to put your feelings in to words i felt this way last week and felt so physically and mentally drained i could not bring myself to type as i felt on such a "downer" with myself ,it does take willpower and alot of energy that sometimes you just do not have!
i will be off all week next week so will keep "popping" in to see how you are doing,
thinking of you,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on June 05, 2007, 12:56:10 AM
Hi Heather...Just wanted to let you know I am thinking about you. I am sure that everything that you have gone through lately has just caught up to you....in many ways. We all know, that along with these knee problems come many other problems as well, not necessarily physically. And eventually, it takes its toll on you...hence depression. I will continue to keep you in my thoughts and prayers. Hang in there, girl. It is gonna get better. Just keep trying to see the bright side of things. I hope to hear from  you soon.

Many hugs...DONNA :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 06, 2007, 06:01:02 PM
Heather,

I hope that this finds you well and everything is going ok and the pain levels are still good. I hope the therapy is going well. I won't say pain free, but hopefully this is also manageable.

My thought and prayers are with you,

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 07, 2007, 03:40:23 PM
Hi Heather,

Sorry I haven't been in touch, I've been pretty sick, and am still not feeling too good. Its all immune system stuff, but now I have coldsores on my lip, so I feel ugly as well as under the weather!  :( I've also had some dramas with some things in Australia that I've had to deal with over email which is really frustrating, and makes everything take longer. I think this morning its finally all sorted, but these little dramas happen about once a year, and they always seem to come at the worst possible moment!

I hope you're feeling ok and that your pain is still down.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 07, 2007, 09:29:17 PM
Claire - Thank you so much for your support!  I'm sorry I haven't responded to your message on here or to your email yet, but I do plan to respond to the email more fully this afternoon/tonight.  Thank you for everything.  "Talk" to you soon.  Take care.  - Heather

Donna - Thank you very much for the kind words, hugs, and support!  I really appreciate it!  I do feel like a lot of things have finally caught up to me and like I have been pushed into a pit of depression.  I'm trying to look for a positive way out of this pit and trying to not focus on the negative ways out.  Thank you for your prayers.  I can definitely use them.  I'm keeping you and your family in my prayers as well.  Please take care.  - Heather

Saul - Thank you so much for the encouragement!  I've been having nerve pains in my foot that can sometimes go up to a 5 or 6 and have had some nerve pains in the outer side of my leg the last few days that can go up to a 3 or 4.  I've called my neurologist to let him know what's going on and to see if there's anything that should be done for it because he had mentioned that the sooner we can catch the nerve pains when they start the better the chances are that we can control it with pills (instead of something more invasive).  I'm hoping that we can keep all of this still manageable, but I"m afraid that this CRPS stuff may be starting to go all crazy again! :-\ :'(  Trying not to worry about it, but it's hard!  Also, I'm not really saying much about it to my family because I don't want them to worry that this is starting all over again and that the Lidocaine treatment may be wearing off! :-X :'(  Oh well, not much I can do about it at the moment . . . just waiting to hear back from the neurologist's office.  PT is going alright.  There is one exercise that we have cut out for the last few days because the back of my knee has been hurting (PT thinks it's my hamstring).  Other than that, we've added some weights since I got out of the hospital and that seems to be okay, tough, but okay.  Yesterday, the PT assistant managed to bend my knee to 106* (with me biting my lip while she did so :'() which is the best we've done since the day after my Lidocaine treatment was done.  Pool therapy has gone well.  I feel like I can do a lot more in pool therapy, but I have to watch out because I really stiffen up extra easily once I get out of the pool.  I have regular PT and pool therapy both tomorrow.  Double dose of PT.  Ugh! :P  Anyways . . . I hope everything is going well for you.  Take care.  - Heather

Lorraine - Thank you for your support!  Please refer to Saul's part of this message to see how I'm feeling.  I hope to get a chance to send you an email in the next few days explaining a bit more about what's been going on for me.  I hope that you start to feel better soon.  Please take care.  - Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 08, 2007, 01:41:04 AM
Heather;
  I've been reading your post and know that you have another shoulder to lean on and 2 more ears that listen very well. Take care og you.


Angel
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 08, 2007, 03:04:26 AM
Angel -

Thank you for the kind words and offer of support!  I really appreciate it!  How are you doing?  I hope you are having a good night.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 08, 2007, 04:30:48 AM
Hi Heather;
  I'm doing pretty good, just going through a couple of those feel sorry for me days. Knee wise, it's getting better with each day. I just get tired of my own company. I slept too much today and now I'm wide awake. Take care and remember I'm here if you ever need to vent, or cry or whatever makes you feel better.


Angel
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 08, 2007, 02:35:45 PM
Thanks, Angel!

I'm glad to hear that the knee is getting better each day! :)  I can also definitely relate to the "feeling sorry for me" days.  I went through a few up and down periods of those earlier on in the course of the knee stuff following surgery.  Now it's more than "feeling sorry for me" days and it has definitely moved into the realm of depression at this time.  Many things have been weighing on me from all sides and have pushed me into a dark pit.  Although I don't necessarily see any positive ways out of this dark pit at the moment, I keep trying to remind myself to keep looking for a positive way out.  It's just really hard right now.  Anyways . . . I hope you are having a good day and that you were able to finally get some sleep.  Please take care and know that you are in my thoughts and prayers.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 08, 2007, 02:50:20 PM
hi heather,
thank you so much for your e.mail,i am going to reply to you shortly.
i wish there was something i could do to make that dark pit a little brighter or shallower.
you have my support in any way i can help and i understand how things can build up so you feel there is no way out.
i will always be here for you to vent to and be a "cyber shoulder" to cry on if you need it.
take care,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 08, 2007, 04:25:49 PM
Claire -

Thank you very much for the support and kind words!  I really appreciate it!  I will check my email later today after I get back from my double dose of PT (regular PT and pool therapy . . . Ugh :P).  Thank you for the offer to be a "cyber shoulder" to cry on if I need it!  Your support and friendship means a lot to me and that helps to shine a small light into the dark pit.  Thank you very much!  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 08, 2007, 07:42:29 PM
Heather,

I am sorry to hear about the uncomfortable situation and at least it is still better than before. Hopefully, as you are pushed to the limits in therapy, your muscles, tendons and ligaments will begin to wake up and also with this progress the nerves will also. Pt is hard regardless of where you are at in rehab. Even still for me, it wipes me out that day and the day after I am usually ina fog. I still have the hyper sensitivity in the knee, but as the therapist pushes me it seems to get better, just a little and now it can be extremely itchy. All in all, it is still progress and that is what counts. I know that concentrating on the rehab and everything that goes along with it is very hard, but making progress is a positive influence on everything and again every little step forward is a major step in how you feel and the same goes for all of us.

My thoughts and prayers are with you and it truly is good to hear from you.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 08, 2007, 08:00:32 PM
hi heather,
i hope the double P.T went okay today,urrgh,one session is enough without two!
do you dread going as it is so painful or is it good to get out?
i agree with saul about P.T wiping you out and it being hard on us.
my new P.T is good and pushes me further then my last one but i felt alot more achey after the first session with her then the guy i used to see.
i really hope the increase in your pain levels comes down again,if it does,do you think your ROM may improve as the PT may push you more?
do you still see jamie? i hate it when you see your O.S and feel they are rushing you.
well i'll be off for now,i just thought i would pop in to see if you have been on the site!
take care and i'm thinking of you.
claire x

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 08, 2007, 09:51:09 PM
hi heather!
i'm back!! i am going to bed shortly but wanted to let you know i will send you another e.mail tomorrow.i hope P.T went okay for you today.
take care and you are in my thoughts and prayers,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 08, 2007, 10:49:33 PM
Saul - Thank you for the kind words and encouragement!  PT is definitely tough and can wipe one out the rest of the day.  I know that part of the pain I have (the part in the knee) is "normal" for rehabbing the knee.  The part the scares me is the burning nerve pain that I have in my foot and in parts of the lateral side of my lower leg (these are areas where my CRPS pain was quite bad).  I received a call from my neurologist's office this morning and was told that the neurologist wants me to give it some time at the higher dose of Zonagran (I just increased to 300mg daily on Wednesday as was scheduled when I left the hospital).  The person I spoke with said to give it until Monday or Tuesday to see if it helps.  Keeping my fingers crossed that this can be gotten/kept under control.  How are you doing?  I hope that things are going well for you.  Please take care and know that you are in my thoughts and prayers.  - Heather

Claire - Thank you for everything!  I just sent a response to your email.  To answer some of your questions . . . I still work with the same PT and although PT is tough, it is good to get out and I like the people at the PT center.  You are in my thoughts and prayers.  Please take care.  - Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on June 09, 2007, 05:27:29 AM
Hi Heather....I just wanted to thank you for taking the time to leave me your note of sympathy. It meant alot to me....

I do hope that things are continuing to get better for you. I think of you often....

Hugs...Donna
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 09, 2007, 12:18:47 PM
Hi Heather;
   I hope this finds you feeling better. I hope that your PT went well. If there is one thing that I've learned through this site and my own surgeries, we have to take to take it one day at a time. I've never been one to that tho. I've always made plans ahead of time, and this planning anything one day at a time doesn't sit well with me. I'm working on it, but find it most difficult. I think thats why I get in such funks. But this site and all of you wonderful caring people have helped me more than I can ever thank you for.
   Hand in there Heather, things will slowly start to come around. Just know that a lot of folks are here to help you in any way. My thoughts are with you.



Angel
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 09, 2007, 03:40:55 PM
hi heather,
how did the double PT session go yesterday?
bet you feel abit sore today?
i replied to your e.mail earlier,thanks for your reply.it was good to hear from you again.
please let me know if i can help in anyway.
take care and you are in my thoughts.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 09, 2007, 05:42:54 PM
Heather,

I will tip my hat t you, O do not have enough pills to to go through the "you know what " with a double PT. Are you crazy???  (lol)


Please take care

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 09, 2007, 07:31:17 PM
Hi Heather,

I just wanted to leave a quick message saying that I'm still here. I'm still dealing with this exhaustion and have lots of symptoms that my body is stressed. I've got lots of coldsores - more than I've ever had in my whole life of getting them, and I just feel soooo tired all the time, regardless of how many vitamins I take or healthy meals I eat. I'm trying hard to look after myself, and having a long weekend this weekend is going to help a lot.

Its good to hear the PT is going well, although tiring, and I hope the other stuff is clearing a bit too. I'm not sure why, but a lot of my negative thoughts and feelings have fallen away now, and I feel very quiet inside. Not happy just yet, but definitely better than before. My best friend here is leaving on Monday, and my other friends are leaving in 6 weeks, so I'm going to have some grief to deal with, which I'm not looking forward to.

Anyway, I just wanted to check in and say that although I'm not posting much at the moment, I am thinking of you.

take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 09, 2007, 09:20:10 PM
(http://i165.photobucket.com/albums/u62/kiddthekatt/hug.gif)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on June 12, 2007, 11:17:32 PM
Heather,

I've just read the last few pages of your diary. I'm sorry to hear about the depression, although its quite understandable considering everything that you have had to put up with over the last few months. I've been on the verge at times recently. Progress with my knee has been really slow (nhs), when I am working, I'm doing a job that I don't particulary want to be doing yet I'm stuck there at the moment because of my knee. The uncertainty is the worst thing, which I'd guess is causing you some grief.

As for the nerve pain, I hope that upping the meds helps and that a more long term solution can be found.

I hope things begin to improve soon.

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 12, 2007, 11:59:00 PM
Heather;
  Hey, just thought I would drop in and see how you are tonight. I've thought of you a lot the last couple of days. Hang in there kiddo, it will get better. You have to believe it will. I hope the doc can get your pain in control. That will help a lot. Take care and let me know if there is anything I can do to help.

Angel

(http://i165.photobucket.com/albums/u62/kiddthekatt/35.gif)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 14, 2007, 02:07:44 AM
Hello Everyone -

Just a quick message to say thank you for all of your messages of support and encouragement!  I really appreciate it!  To update you all . . . I'm still struggling with depression and the nerve pain in my foot and lower leg has still not gone down.  I got a call from my neurologist's office today and they said that since the medication had just been increased last week that the doctor wanted me to try giving it another week or so to really see if it will start to work.  Sorry this is so short, but I've got to get going so that I can finish packing for my Young Careerist competition since we are leaving early tomorrow morning for the trip.  I won't be able to check messages again until Sunday or Monday, so I hope everyone has a good weekend.  Please take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 14, 2007, 03:02:11 AM
Hi Heather !!!!!!!!!

So sorry to hear about what is going on. It all makes for a terrible situation. Hopefully, your trip will take your mind off of everything. Good luck on your trip and hope to hear from you when you get back !!!

All my thoughts and prayers.

Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 14, 2007, 10:37:41 PM
(http://i135.photobucket.com/albums/q157/graphic_code/dog_cat_animal/dogd2af3a469847_myspace.jpg)

hi heather!!
i hope all goes well for you at your competition!!
thanks for your e.mail and i will have replied to it by the time you get to read this!!!
take care.
thinking of you!!

claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 16, 2007, 03:40:50 PM
Hi Heather,

I hope your trip went well and that the pain wasn't too distracting. I know I haven't been around here much, but I have been thinking of you a lot and wondering how you're going.

I'm ok, still going through "stuff", but my knee is behaving, so that's something!  :)

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 17, 2007, 01:42:15 AM
Hi Heather;
  I hope your trip went well, and you had less pain. Hang in there kiddo.

Angel


(http://i165.photobucket.com/albums/u62/kiddthekatt/35.gif)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 19, 2007, 12:22:45 AM
Hi Heather!

How did you go? Did you win??

Looking forward to your news,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 19, 2007, 03:18:42 AM
Hi All -

The trip was alright.  It was good to get away for awhile and I had a good time seeing everyone (some old friends and meeting some new ones).  However, it was quite demanding on my leg and has made it rather painful (more so than it had been).  I was the Runner-Up in the Young Careerist competition and was told that the scoring was rather close between the winner and myself.  I was told by many people (including the state chairperson and our national BPW President) that I need to compete again next year.  I enjoyed the whole process, so plan on probably competing again next year unless for some reason I am unable to do so.  Anyways . . . sorry this is so short, but am still struggling with depression and do not feel much up to typing/"talking" at this moment.  However, I wanted to update everyone regarding my trip and competition.  Please take care and know that you are all in my thoughts and prayers.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lilrosie06 on June 19, 2007, 06:34:57 AM
Congrats Heather!! You should be very proud of your accomplishments!! Were you here in my neck of the woods for that??

Sorry you are still feeling so down. Hang in there girlie. Things are gonna turn around for you. Have faith.

I love ya....

Donna :)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 19, 2007, 03:00:59 PM
YAY HEATHER!!!

Now don't you go thinking "its only runner up". You did a really good job getting that far, and you had a good time, and went travelling and I for one think you're a champion! I'm very proud of you, and I bet you win next year!

I'm sorry you had a lot of pain, and that you're feeling down. I think after all the excitement to come back home to your normal life is a bit of a downer anyway. I know I hate coming home to the quiet and the sofa and the "just me and my sore knees" feeling at the moment. Remember I'm always here for you if you feel like talking again.

Please take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on June 19, 2007, 03:37:40 PM
Hi Heather, well done on the competition. Not so good to hear it took it out of your knee though. I hope you can soon recover from it.

I'm sorry to hear your still feeling down though. Chin up though. I'm sure you can turn it all around. ;)

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 19, 2007, 06:56:29 PM
CONGRATULATIONS HEATHER ............ ;D

WE KNEW YOU WOULD DO WELL!!

YOU SHOULD BE PROUD OF YOURSELF

TAKE CARE!!

CLAIRE X

Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: kiddthekatt on June 19, 2007, 11:36:43 PM
Heather;
   Congrats!! And I am so sorry the knee had to act up, but know that we are still here and just an email away. Try to get some rest, and let us know how you are.


Angel
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 20, 2007, 09:22:36 PM
(http://www.allglittergraphics.com/thinking_of_you/glitter_graphics/thinking_of_you_graphics_03.gif)
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 22, 2007, 07:16:30 PM
Hi Heather,

Just checking in to see how you are. Don't forget we're all here for you, and hoping you're ok.

Take care,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 23, 2007, 10:02:41 PM
hi heather!
i hope you are doing okay and feeling a little better,i'm thinking of you!!
i just noticed the last post i left for you has disapeared!!
it WAS a cute picture but i guess it was not meant to be used on the net!! maybe has some copyright on it or something??
anyway thought i would leave the picture this time so you get to see the message!!
i will reply to your e.mail again tomorrow,i have been working again today (saturday) so am really tired (i seem to be all the time lately!!)
take care and i'm keeping you in my thoughts.
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: LighthouseFan on June 24, 2007, 02:59:30 AM
Thank you all for the messages of support and congratulations!  I really appreciate!  I apologize for not responding earlier, but have been spending more time at my apartment where I do not have a computer.  Also, I have not felt up to posting.  There has been A LOT going on in my life (struggling with depression, etc) and I feel like I am just barely making it through and do not have any energy, motivaton, mental/emotional focus, etc. to be able to post anything.  I'm sorry for being so distant.  I just can't get myself together enough right now to be able to really "talk" on here.  I am still checking in when I can to read messages and will post when I feel able to do so.  I am very sorry about this.  Please know that I am still keeping you all in my thoughts and prayers.  Take care.

Heather
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: sterns on June 24, 2007, 03:07:10 AM
Hi Heather,

It was really nice to here from you !! I am sorry things are the way there and I have to say that I think I am moving into the depression side of things. Some days , maybe most, it becomes so consuming. Hang in there and my thoughts and prayers are here !!!!!!!


Saul
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on June 24, 2007, 11:30:33 AM
hello heather!
thanks for posting and letting us know how you are,i'm sorry things are not feeling better for you right now.
we are here for you when you feel up to posting.
i will respond to your e.mail later as im going to my mums very soon.
take care and you are often in my thoughts,im here if there is anything i can do for you!
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: lozzie on June 24, 2007, 05:09:14 PM
Hi Heather,

You don't need to apologise for your abscence. Its good to know that you're still around, but if you're not up to posting that's just fine. Do let me know if there is anything I can do to help, but mostly, make sure you take care of you.

A big hug,
Lorraine.
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: garth on July 05, 2007, 08:48:27 PM
Heather,

Hope your felling a bit better by now.
Look after yourself,

garth
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: shortyclairebear on July 14, 2007, 06:18:02 PM
hi heather!
just a quick post to tell you that i am thinking of you!
i hope things are okay for you and that you are feeling abit better.
i will email you over the next couple of days!
take care and remember i'm here for you if you need me!
love from,
claire x
Title: Re: LighthouseFan's MPFL Recon. & LR post-op diary
Post by: West26 on March 28, 2011, 09:52:58 PM
Hi heather! Thanks for being so honest. Im most likely having this surgery in a few weeks and im a little nervous for post op...how long has it taken you to be completely back to normal? How long is your scar? Now is it the incisions that hurt the most? Any trouble with stability after the surgery? In the shower does it hurt/burn the incisions? (not sure how yo spell haha) before surgery what questions should i ask my OS?
Sorry for all of the ? But i figured you would know the answers?
Thanks