I just had my fifth scope to remove scar tissue from my knee. This surgery was with a brand new doctor who sees a lot of this stuff, and my post-op protocol is different than anything I've ever done before. I thought I'd post some information and keep up on my progress, hopefully to encourage anyone else out there having problems with adhesions. They are a nightmare, I know.
Pre-op: I had developed patella baja (aka patella infera) and my kneecap was smashing into my shinbone and the underlying joint through ROM. The pain was debilitating, though taping helped for a day or so. My knee would also lock up, I was missing about 20+ degrees of flexion and 3-4 degrees of extension. I walked with a limp. My main complaint was pain that nothing would address except icing, elevating, and narcotic pain meds.
I had the arthroscopic lysis of adhesions on December 20. Within two minutes of waking up in post-op I was placed in a CPM bending between 30 and 70 degrees. The pain got so bad I was given fentanyl, dilaudid, and finally a small amount of morphine. The first day and night were the worst.
What was done: The doctor basically used a shaver and laser tool to remove scar tissue from all around the knee. The worst scarring was below the kneecap--my patellar tendon was completely scarred down (immobile) and my IT band was adhered to the bone as well. The entire empty space that is supposed to be beneath the kneecap was filled up with scar tissue. Removing this is called an anterior interval release. Then the doctor cleaned up some damage on the back of my kneecap and we were done.
Here's a summary of the first week post-op protocol.
*I spent 24 hours in the hospital for pain control and IV antibiotics
*NO WEIGHT-BEARING WAS ALLOWED, no exceptions. I was allowed to use crutches as long as I didn't put my foot down, but ended up renting a wheelchair because I was so exhausted (altitude) and drugged that I was pretty unstable.
*My first PT session was on the afternoon of my surgery--OWWWW.
*Starting the day after my surgery, I had PT two times per day, for about 90-120 minutes each time. The main focus has been getting ROM back and preventing swelling. I started with wall slides, quad sets, and patellar mobilizations. I have to do these four times per day at least. Then I have another set of strengthening and stretching activities that I do twice per day.
*I will keep the CPM and sleep in it for 2 weeks, set at 0-70 degrees. This is supposed to keep me from getting stiff during the night (tell it to my back).
*If something causes sharp pain, irritation, or swelling, then we stop doing it. I have to ice and elevate multiple times per day. If I feel the knee getting hot or starting to puff up, I have to stop whatever I'm doing and ice/elevate.
*We have used a number of treatments to reduce inflammation and pain, including ultrasound, air pressure, TENS, and a cryo-cuff.
*The pain has been pretty intense, especially since I'm doing PT twice a day. Despite that, my knee is hardly swollen at all and the kneecap remains fairly mobile. The worst bit is below the kneecap, and it is quite painful to do the mobilizations on this spot.
*I have to take aspirin and wear anti-embolism stockings (very fashionable) for 9 days after the surgery. I must keep the incisions covered with gauze and a tube bandage for 9 days as well. My incisions are all new (he didn't use any of the old ports) and are closed with dissolving stitches and steri-strips.
*I'm happy to report that within 48 hours of my surgery I had 140 degrees of flexion and 0 extension--I can even hyperextend a few degrees, though it does hurt. I'm able to do many of the passive stretches I wasn't able to do before (piriformus, hamstring, ITB), so my knee is gaining flexibility in that way as well. I essentially have full ROM, and have been able to keep it.
This is a completely new protocol for me, unlike anything I've done before. It's very frustrating for me to be in a wheelchair, especially since this town is not built for people with disabilities. I'd love to ditch the chair, but I've never been non-weight-bearing for an extended time on crutches, and at 8200 feet, it's a pretty exhausting proposition. However, I think that not putting any weight on the leg post-op has made a huge difference in my recovery, because I have almost no swelling and very little bruising, plus full ROM. The idea is to keep the joint moving, but it has to be 100% passive motion.
I'd love to hear from anyone else who's had a similar surgery. I'll try to keep posting for my own record and everyone else's--arthrofibrosis is a very rare and frustrating problem. It's also tough to treat--my surgeon believes there is a 40% chance I'll have to have another scope to clean up further adhesions.
That's all for now. I'm off to PT.....
Heather
Posted by Linds (Linds), 28 December 2002
Wow Heather, sounds like you are doing well..I am glad you have found someone who knows how to help you. I can't imagine being in PT right after surgery like that..but I am sure it's the thing to do. I was totally non weight bearing after my LR for 3 weeks..so I can totally relate to that. I hope you continue to recovery as well as it sounds like it is going. Take care, keep us posted Linds
Posted by sha22 (Sharon), 28 December 2002
Heather, It sounds like things are going pretty well for you after the surgery! I'm really glad you found an OS who seems to be helping you with your knee It must be hard to have to be in such intensive PT right after surgery but it seems like it's good for you-140 degrees right after surgery is great news!! I really hope your recovery keeps going as well as it seems to be right now! Good luck and keep us all posted on how you're doing!!
Sharon
Posted by Lbliny (Cari), 29 December 2002
Heather,
I do not share the same problems as you do but I wanted to wish you well and tell you to hang in there you will get through it !!!
I am glad you found a Dr to finally help !!
Feel Better
Cari
Posted by SueJ. (SueJ.), 29 December 2002
Hi Heather, I'm glad to hear from you, I had been thinking about you and wondered how things were going. Sounds as if so far things are looking on the up side lets hope it stays that way! Maybe you can get some cute Ski guy to help you around . I'm sure some tall tale of a massive skiing accident would be very believable! Good luck with your recovery and keep us posted when you can in between PT visits. By the way have you seen the doctor since surgery yet? Is he happy with your recovery so far? Are you in a brace of any kind? I remember that CPM and what a pain it is to sleep in! But you gotta do what you gotta do! This whole scar tissue thing is such a pain, and who would have known we would have a problem with it ahead of time. But I must say that since my problem I have heard of a few more people around with the same problem and then of course there's always someone with a friend of a friend of a friend that had the same problem. But people still keep asking me why did it happen in the first place. It's like it just can happen, everybody heals differently. What more can you say... Keep smiling and bending! Sue
Posted by T_bone (T_bone), 29 December 2002
Hi Heather,
Glad to hear you're on the mend. Hopefully this one will be the charm and you'll be back to your active self shortly.
Posted by kakeela (daisey), 29 December 2002
Hi Heather,
Glad to here that things are going in the up direction after the surgery. I was really glad to here that you found an OS that had options to help. I know that PT has been tough, especially twice a day. It sound like your OS has you on the road to recovery. Hang in there and keep us posted on your recovery.
Daisey
Posted by Tizzy953 (Tizzy953), 29 December 2002
Heather, It is sooo good to hear that you might have found the answer. Even though constant motion has got to hurt you have got to be so excited that you are bending this much. How does the knee feel? You have to feel like there is just tons of room in there after being so strapped down like you have. Hopefully this is just the beginning to the end and won't have to go through it all over again! Enjoy the time in the snow and enjoy New Years! When do you head down to AZ again? Hope all is well!
Kenzie
Posted by Janet (Janet), 2 January 2003
Dear Heather:
Wow! That's an interesting rehab protocol. My scarring wasn't as extensive as yours, but my patella was completely scarred down, also causing some patella baja. My medial and lateral gutters were completely scarred down. After doing the lysis of adhesions, I also needed a LR and partial medial release because of all the scarring.
My PT protocol was more "classic." I started home exercises the same day as surgery (quad sets, ROM). I began PT within three days, going three days a week for five weeks. I then went to two days a week for another 2 months. I was able to regain some ROM pretty quickly, but continue to have other problems. 18 months later, I have to say the surgery was a success. I no longer have the tight, pulling pain all the way through my hip. And my ROM is better than before (about 120 flexion, almost full extension). The worse part was getting the patella tendon to work again. It had been scarred down so long, they say it wasn't really moving, the scar tissue was just stretching. My patella can actually move now, but I still have the burning pain in my patella tendon.
I hope you continue to have such good results. Being non-weight bearing is interesting. Maybe it will make the difference between not producing scar tissue again. Keep us posted.
Janet
Posted by Tizzy953 (Tizzy953), 2 January 2003
Hey Heather, I haven't heard from you in a while and I was wondering how things were going? Is the knee getting any better? How was your New Year? We went up to Seattle and stayed at the Westin hotel (same chain as the Phoenicain) It was great we had a beautiful veiw of the Space Needle and saw the show from there. Went walking around Seattle the next morning, I really need to stop doing that, my knee is getting a lot worse and walking that much doesn't help. I usually have to take the entire next day just to recover. 12 more days until surgery. Please keep you fingers crossed that it doesn't get cancelled. I don't know what I would do if that happened, it has gotten so much worse in the past 3 weeks.
Again I hope you are improving by leaps and bounds!
Kenzie
Posted by Laurie (Laurie), 6 January 2003
Well congrats Heather!
You sound much more positive. No infection I hope. He's the man, isn't he. They give you a lot of attention and show you what to do exactly. There is a reason why everyone ends up with him.
Remember though, the battle has only begun. You have got to keep the scar tissue from coming back. Passive movement, patellar mobs ( can't do enough of these), wall slides. Keep the heat out, ice, ice, ice. My only advice at this point is if you feel the scar tissue coming back, then don't hesitate to get the cortizone shot. It stops it from spreading. It was between 2 - 3 weeks out of surgery that it started to come back. You'll know when it starts to come back. It'll start to get hot again and stiff. Stop it before it starts.
I am currently 14 months out of my last scar tissue removal and I am now at about 90%. I had to ride the bike for roughly 8 months with no resistance before he cleared me for any strength training. Once you start strength training it will come back fast. But if you push it too hard too fast, you will only build more scar tissue. Your knee has been messed up for so long and with 5 surgeries it's probably not happy. It's a long haul, but there is light at the end of the tunnel. I fully expect to run and ski again with no pain. Don't give up and don't get depressed.
I'm happy for you.
Laurie
Posted by snowcat (snowcat), 15 January 2003
Hey Heather--
Haven't heard from you for a while. Hope you are still doing well!
snowcat
Posted by hmaxwell (Heather M.), 20 January 2003
Hi everyone. I just got back online yesterday after a month away from my internet connection, so it was great to see the messages of support. I really appreciate it.
I've been in the 'why the heck did I have surgery again' phase for about the last two weeks--any multiple surgery veteran knows what I'm talking about. So I thought I'd post about how things went at certain milestones during the critical first 4 weeks post-op. It was an eye-opening experience for me.
At one week post-op, I was allowed to be 30% weight-bearing and go to PT once per day (plus three times at home), but pretty much did the same PT routine. This included wall slides, patellar mobilizations, spinning with no resistance on a recumbent bike, seated quad sets and straight leg raises (lying on my back isn't allowed for SLR's until week 7-9 post-op...who knew??).
I was able to reach 145 degrees of flexion on my own (just short of touching my heel to my rear end) and better than 0 extension by about 4 days post-op, which my doctor couldn't believe. I think it has to do with immediate, passive motion and the variety of treatments that were done on me to prevent swelling and reduce pain (mentioned in first post above). The ultrasound with analgesic gel was the absolute best. The general philosophy for walking with crutches and any PT exercises was that if they caused pain or swelling, we immediately stopped them. If I came in for PT and was swollen and hurting, the PT session would be focused on gentle ROM work and relieving pain with treatments. For example, when we tried terminal quad stretches and forced ROM work with me lying on my stomach and the PT bending my leg, I had a very sharp flare of pain the next few days. I haven't been allowed to do them since.
This is pretty much how things continued through the one-two week post-op period. I was allowed to take of the anti-embolism stockings at 14 days post-op, and was allowed to get my leg wet in the shower about 18 days post-op.
Heather
Posted by hmaxwell (Heather M.), 20 January 2003
My PT continued and we tried to add more weight-bearing and a few new exercises, but were frustrated by pain flare ups that just wouldn't quit. The kind of pain that two percocet tablets and four advils don't touch....after a week of this, with my knee hurting more and becoming more swollen, I was sent back to the doctor for an evaluation. He was concerned by the swelling and said that normally he would do a cortisone shot (as Laurie had). But due to my history of infection he would not give me any type of steroids to reduce the inflammation. Instead, we had to try something else.
He also decided that new adhesions were already beginning to form in my knee, especially in the suprapatellar pouch (above the kneecap, base of quads). He felt these were the cause of much of my pain; the rest of the pain was due to having my patellar and quadriceps tendons retracted and scraped with surgical instruments. In other words, nothing to be done but wait it out. But he recommended a procedure to help with the quad adhesions and overall inflammation, and I agreed.
The next day I went into the OR for an insufflation, which involves general anesthesia but no incisions. Basically, they knocked me out and filled my knee up with a lot of saline solution under pressure, then left it there to stretch out the knee capsule. Then they took a big needle and sucked out all the fluid they put in (as much as possible). The doctor could actually see and hear the adhesions in my quad popping during the insufflation, which lasted about ten minutes. Then I was taken to the recovery room, given a low dose of long-lasting morphine, and released downstairs straight to PT. I don't remember too much, but I do know I was bending the knee to 145, riding the bike, and doing quad sets and mobilizations right away. My quad felt immediately better, without the pain I experienced after my manipulation.
This procedure is somewhat experimental and is not recognized by many insurance companies. But my doctor felt it would be the best way to get the inflammation and early adhesions out without causing trauma that would lead to further scarring. He said I would probably have to repeat the insufflation procedure sometime in the next 8 weeks, but this was my best chance to avoid a sixth scope in the future. The insufflation only works when the scar tissue is very new--it won't work on fibrotic or hardened adhesions, I'm told. When I asked, I was told that this procedure was half therapeutic, half preventive in nature.
The procedure set me back about 10 days in terms of crutch use--I had been weaning off of them. The pain levels went up in some ways, got better in other areas (like my quad and the pain/tightness I had before on full flexion). In all, it was fairly benign and I would sign up to do it again in a heartbeat if they thought it would help.
Heather
Posted by SueJ. (SueJ.), 21 January 2003
Hi Heather, Glad to hear from you, Sounds as if you've had a busy month. I hope your knee is doing OK, at least he seems to be very pro active in treating and preventing the return of the scar tissue. You sure have a great doctor! Good luck and be careful on the crutches this board is full of people slipping and falling in the ice lately! Keep us informed of your recovery, Sue
Posted by Tizzy953 (Tizzy953), 24 January 2003
Heather, It is soo good to hear from you. I am so glad things finally seem to be going in the right direction for you. It is about time.
I hope it continues inthe right direction. I really am so happy for you.
Kenzie
Posted by hmaxwell (Heather M.), 28 January 2003
Well, just a quick progress note. I'm now 5.5 weeks post-op, and definitely better than I was two weeks ago. Functionally, I'm better than I was before the surgery, but pain-wise I'm not. In all, I am cautiously optimistic about my progress--there has been real progress, but I still have so far to go.
Anyway, I ditched the crutches a week ago and had some serious problems with instability, knee popping, and hyper-extending (OUCH) at first. We focused on my quad strength by doing Russian Stim while I did quad sets and straight leg raises for about a week--what an amazing difference this has made. I did the Russian Stim about 3-4 times per day, every day, for 15 minutes each session. That's a lot of isometrics, but it worked--I have definition to my outer quad and even some to my VMO!! And the hyper-extendis getting better, though it's still a surprise when it happens. The knee continues to pop, but not as often or as sharply as before.
Two huge milestones: A week ago I managed to touch my heel to my rear end and then to actually fold my leg underneath me and sit on it! So I have full, unencumbered range of motion back--YAY!
The second big advance is that for about 3 days now I have been walking without a limp. I can only do it for short distances, but it's a huge thing for me. I haven't walked like this since before my lateral release in September of '01.
Despite this progress, my pain and swelling continue on a daily basis. The patellar tendon pain is calming down somewhat--it's still there, but not as sharp as it was before. The worst pain is in the quad/suprapatellar pouch area and the whole lateral aspect of the knee. The pain there has actually been increasing, in the all-too-familiar stabbing, hot sensations. Grrrrrrr.
But I'm going to focus on the progress made. I'm still very limited in what I can do, but hope to start 1-2 minute sessions on the elliptical trainer and treadmill next week. In the meantime, I'm staying away from malls, grocery stores, art festivals, and my computer--as all of these encourage me to overdo things and cause rebound swelling and pain. I just have to be patient, I guess.
That's the update. To anyone with popping, bad tracking post-op, or hyper-extension problems I can't stress enough how much my home e-stim unit helped with these issues.
Heather
Posted by TracyS (TracyS), 29 January 2003
Hi Heather,
Those really are 2 huge milestones!!! To go from crutches to no limp in a week is really big. Hope you can keep that scar tissue at bay this time and keep that heel to butt going too.
I think of you every time my patellar tendon barks at me, so I'm thinking of you often. Hang in there. Tracy
Posted by Janet (Janet), 29 January 2003
That's great news! Isn't it wonderful to see such obvious improvements? And to think you're almost ready to start the treadmill! Keep up the good work.
Janet
Posted by oneillii (oneillii), 29 January 2003
Hi Heather,
Congratulations on your progress! Wow--full range of motion...you must be delighted.
I'm curious about the e-stim unit you mentioned for tracking and hyperextension problems (both of which I am still having)...What exactly is the e-stim unit and what do you do with it at home? How does it help?
Thanks so much and HAVE FUN on the treadmill!
Susan (PS Where in the US are you? I am in the San Francisco area but fly all over for Southwest, so chances are I've been to your home town...
Posted by hmaxwell (Heather M.), 30 January 2003
Susan,
This is my third attempt to post, complete with full blown computer crashes, so I'll keep it short. The e-stim unit sends and electrical signal to pads you place on the skin, and these cause the muscles to contract. When placed over the VMO and lateral aspect of the quads, and when the patient clenches the muscles during the 15-second contraction, it can help build muscle quickly with little to no impact on the joint.
My unit is a BMR Neurotech, and they have a web page www.bmr.com Your PT should also be able to tell you about it--ask about TENS, e-stim, Russian stim, IFC...there are lots of names for it. I needed a prescription to get mine, but my insurance company did buy the unit outright after a month. I use it at home 3-4 times a day. There is also a second program that sends short little pulses, and these help to reduce joint pain.
The really great thing is this unit can be used on any part of the body where there are large muscles or soreness--back, shoulder, calf, etc.
Hope this helps.
Heather
PS I'm in Southwest HQ territory, Phoenix.
Posted by oneillii (oneillii), 31 January 2003
Hey Heather,
Thanks for that, will check it out...
I am still completely dazzled by the idea of you actually sitting on your bent leg! Wow! Hook me up to the machine NOW
Take care, Susan PS The Paradise Bakery in PHX airport is my favorite airport food!
Posted by wofford99 (wofford99), 3 February 2003
HI Heather- Thank you so so much for taking the time to post all this info. This is so helpful to me. You and I have emailed before but I have had 12 knee surgeries. My last one was a year ago and my IT band is tied down due to scar tissue as well as my kneecap,etc. The scar tissue is attaching to bone also. However, my doctor will not operate again and I am absolutely miserable. I am in pain managment and on a lot of pain meds and still in PT. I've been in PT for a year and a half. What was the main reason your doctor did this surgery-the pain or decrease in range of motion? The surgeons I have seen disregard scar tissue as a problem- they make me so mad. What can I say to get these orthopedic surgeons to listen to me? Thank you! Margaret
Posted by hmaxwell (Heather M.), 3 February 2003
Margaret,
Like you, I went through a series of doctors who would not operate further or treat the scar tissue 'for fear of making it worse.' I went back to my original surgeon, who said he was out of ideas, but agreed that the knee could not be left like it was as the unnatural forces created by the scar tissue were causing serious cartilage damage. I got on the net and started reading medical journals, trying to find OS's who dealt with/researched/wrote about scar tissue. Several names came up repeatedly, and I saw two of these surgeons for consults.
The first was wonderful--very nice, very thorough--but he wanted to do an open procedure to address the patella baja created by the adhesions. I was really glad he took my pain seriously but FREAKED at the idea of an osteotomy for scar tissue problems. I saw the second surgeon I'd selected, and he had a whole protocol that involved arthroscopy and intensive PT. That's what I chose to do.
To answer your question--my pain was the deciding factor in performing surgery. My pain had persisted for 6 solid months despite intensive PT and other therapies too numerous to count. I actually had decent range of motion going into the surgery (about 115) but everything was accompanied by pain that got worse and worse. I was effectively disabled.
After I had surgery with my new doctor, he told me that my knee was so filled with scar tissue that no amount of therapy would have worked. I watched my copy of the surgery video, which arrived in the mail the other day. It was truly mind-boggling--the amount of crap in my knee was unbelievable. What's worse is that I now have damage to the articular cartilage on the tibial plateau, which was the result of the unnatural position of my patella caused by all the scar tissue. This is not something I had previously, it can be directly attributed to the scar tissue. Further, the Chondromalacia Grade IV lesions previously noted on the back of my kneecap have deteriorated to the point that they are now into the underlying bone. The technical term is osteochondral lesions, and they ranked mine at Grade II. That's some serious stuff, and all the result of adhesions.
All I can suggest is that you do the same thing I did--research arthrofibrosis and find out if the authors of the medical papers practice near you. I had to go out of state for treatment, because I was determined to stop fooling around and do things right.
If you would like information on my surgeon or some of the ones I researched during the last year, I'd be happy to send the info to you. You really need to find a doctor who will work with you on this, as the scar tissue can often become a problem that is worse than the original factors that led you to surgery.
Please let me know if I can help.
Heather
Posted by hmaxwell (Heather M.), 6 February 2003
Hi there.
Here's my update--I'm at about 6.5 weeks post-op and on Monday was allowed to do some time on the elliptical trainer, then the treadmill (after my normal 20mins on the bike). I have to be honest--it was brutal. I wanted to cry the whole time on the elliptical, but I kept going because I know how quickly it will help me build my quads up. And I'm DESPERATE to do some kind of exercise! So I got through five minutes on the elliptical, with shooting pain above my knee the whole time. Normally, you are not to exercise through shooting pain, but my OS and PT both warned me that it was going to hurt the first time I did any kind of weight-bearing exercise. They were right. It got a little better after the first minute--I guess my quad finally remembered how to fire correctly.
After the elliptical, I did 5 minutes on the treadmill at 2.5 mph, which felt a little fast. My kneecap was snapping all over the place because my quads were tired and stressed from the elliptical. I was really hurting when I got off, then my PT took me over to the wall and gave me a thera-ball and had me do 20 1/3 squats. Same shooting pain as the elliptical, above my knee. I think it is where the adhesions were removed twice in a two week period, so I'm sure some of the scarring is coming back.
I was really disappointed to have so much pain, but my PT wasn't surprised. He said "what did it feel like the first time you walked on it post-op?" It felt horrible. He said it would get better, and as long as swelling didn't balloon up and the sharp pain didn't continue, we would keep increasing time on both torture devices.
The GREAT news is that I did both the treadmill and elliptical again today, and had only moderate pain. It was much easier for some reason. I even went 6 minutes on the treadmill. The squats still REALLY hurt, though, so we will have to re-evaluate whether I'm ready for them. But I'm going to focus on the fact that today, for the first time since my LR surgery in September of 2001, I did just over THIRTY WHOLE MINUTES OF AEROBIC EXERCISE!!! 20 minutes on the bike, 5 on the elliptical, and 6 on the treadmill at a brisk walk. YIPPPEEEEEE! It felt really good to get my heart rate up and break a sweat that wasn't induced by pain!
In all, I'm really pleased. The only flies in the ointment are the daily pain and swelling, as well as the surprise hyperextensions. None of these areas has really improved at all in the last month, though my activity level has gone up. So we will just continue to monitor and see. I'm supposed to call my doctor for an update, but am afraid they'll want me to go back to Colorado for another insufflation procedure. I don't want to be on crutches again We'll give it another week and see how things go.
Hope everyone's knees are doing well.
Heather
Posted by Janet (Janet), 6 February 2003
Heather:
I am so impressed that you are able to do so much so quickly. And I am jealous of how fast you are walking on the treadmill! That is my main complaint: my slow pace and the short time I can walk. I have worked up to 30 minutes at 2.8 on the treadmill, but I can't begin to walk that long or at that speed on the ground. I am coming up to my four year anniversary for my original injury, and it has been almost two years since my last surgery. My pain is usually tolerable with the Celebrex, but my functional limitations have definitely changed my life! I'm still anxiously hoping that Dr. Wojtys has some answers when I see him. It's only three weeks now until my appointment.
Anyway, congratulations on how well you are doing. Keep up the good work.
Janet
Posted by oneillii (oneillii), 6 February 2003
Hi Heather
CONGRATULATIONS! I know how important it was for you to get on the treadmill and the elliptical trainer...how great for you that you've reached that milestone!
Good luck in the rest of your therapy! Susan
Posted by Tizzy953 (Tizzy953), 6 February 2003
Heather,
This is so exciting!! I am so happy for you. You have come such a long way and you deserve all the happiness you have. I am sure it is frustrating to still have pain, but look on the bright side (now that there finally is one), you are doing something that you have been able to do for so long and it even got easier the second time around. You are moving in a positive direction, and even if you have another insufflation procedure, look how well the first one worked! The second has got to be even better.
Good luck and keep us posted.
Kenzie
Posted by lbdeharak (Linda), 6 February 2003
YAY Heather!!! I am still waiting to do the elliptical and treadmil. My surgery was 11/6. Good for you. Keep up the good work and keep sweating!
Linda
Posted by Mustang29 (Mustang29), 6 February 2003
Hello...
I had arthroscopic surgery on 1/31 for what was thought to be either scar tissue, torn cartilege or both. My OS actually found 2 huge masses of scar tissue - one below the kneecap and the other around and behind my ACL. He also found a partly torn ACL. My follow up appointment was this morning and my OS wants me to begin some light exercises (walking, stationary bike). He did not mention formal physical therapy. I have e-mailed him to clarify whether said exercises should be performed on my own or through formal p.t.
I should probably mention that I have had the same knee scoped before (also for scar tissue). I have been in pt prior the scope (but only briefly as therapy made the knee much worse), but have seen the same OS and therapist for a variety of issues (broken ankle, sciatica, and previous knee sugeries).
What has everyone's experience been with formal therapy post arthroscopy to remove scar tissue? Timing? Length of treatment?
Thanks for the help...
Posted by write2queenofknees (write2queenofknees), 7 February 2003
[color=Purple][/color] Hey Heather,
My name is Becky and I am having scar tissue removed from my right knee on tuesday the 2/11. I had a tkr in june of 2001 and now I have scar tissue built up around it and it clunks when it hyperextends. It is very painful especially when climbing stairs, now walking is difficult. My left knee was replaced last June and it is hard to get it to maximum strength because of my right knee...I hope this arthroscopic procedure works! Nice talking to ya.....Good luck with your knee! Becky in NC
Posted by hmaxwell (Heather M.), 7 February 2003
Thanks to Janet, Susan, Kenzie, Linda, and Becky for your wonderful messages. I'm so pleased to be dong something that could sort of be considered exercise...it feels like I'm a whole person again. Mind you, like Janet I am unable to translate 8 minutes (!) of walking on the treadmill to walking around the grocery store, but am hopeful that will come with time.
Linda, just hang in there--you will be allowed to do cardio work according to your protocol, which is much stricter on weight-bearing than mine. And I thought MINE was bad! I don't know how you keep the patience up, but I'm figuring if you can do it for all these months I can try myself as well.
Janet--I really hope Dr. Wojtys will have something to offer you. He's done so much research and so many papers on scar tissue. He's got to be ahead of the other doctors you've seen on how to treat it. He understands what it can do to your life, and I'm really praying he will be able to develop a program to get you back to where you want to be. Please keep us posted on what he says.
Becky--good luck with your surgery! It's such a relief to get that junk out of your knee. You really should improve by leaps and bounds afterward. Plus, since much of your scar tissue is probably adhered to the prosthesis, your recovery should go much faster than mine did (I had a lot of bone & tendon that was scraped and cleaned up--OUCH!).
Kenzie--how did work go? And PT? Keep that knee moving in your approved ROM, because you don't want to end up posting your own horror stories about adhesions! Seriously, I hope that everything went ok.
Susan--did you look into getting an e-stim? It really helps build the muscle. Plus, my PT is going to show me how to use it on my VMO while I'm doing things like step-ups and balancing. It's supposedly going to help tracking while I do it...we'll see.
Well, I'm off to ice and elevate. The knee is very swollen today, but I did 20 minutes on the bike, plus 8 minutes EACH on the elliptical and treadmill. I did have more pain today than the last time, but it wasn't enough to make me stop. And the knee feels better now than I thought it would--in fact, it feels better than my 'good' knee which is red and has two highly localized pockets of swelling. Nasty, nasty knees. Give me a break!
Take care,
Heather
Posted by hmaxwell (Heather M.), 7 February 2003
To Mustang29--sorry, I didn't see your post on page two of the thread.
As for PT, all I can do is repeat what my surgeon (who specializes in treating scar tissue problems) has told me. He said that the therapy post-op was more than half the battle. I did 'formal' therapy in a PT clinic twice a day for the first week after my surgery, plus another 2 times per day at home. I also slept in a CPM every night for close to a month.
However, I could have done most of the therapy at home. The reason I went in to the clinic was for patellar mobilizations, ultrasound, jobes (sp? anti-inflammatory treatment using air pressure), and e-stim. These were all therapeutic and make the patient feel better treatments. Everything else I did was pretty standard--straight leg raises, wall slides, quad sets, spinning on the bike, stretches.
I think you should definitely talk to your doctor, ask why he/she thinks you keep forming all this scar tissue and what you can do differently. I don't think you *need* to be in formal PT, but it could probably make you a lot more comfortable. Ultrasound is lovely on a sore knee, and the jobes treatments were amazing.
Good luck with your recovery.
Heather
Posted by hmaxwell (Heather M.), 17 February 2003
Hi all. Another update on my recovery.
The bottom line is that I have made a lot of progress and my life is definitely better now than before the last surgery to remove scar tissue. My pain has gone from a constant 6/10 and increasing as the day goes on, to maybe 4/10, with some good spikes after PT to keep things interesting.
However, I am nowhere near where I want to be--I'm better, but not there yet. I'm trying to focus on the progress, but feel frustrated because everyone thinks that because I'm better I must be 'cured.' Far from it. As I said in a post to Ellen, I went from unbearable levels of pain and physical limitations to merely debilitating. The biggest continuing problem is pain and swelling. I'm doing a lot more in PT, and every afternoon I sit with ice on my leg, my tens unit plugged in, and measure the hours until I can take my next painkiller. I do formal PT every day of the week, except for Sundays.
I'm still feeling pain in the old familiar locations below the knee, with some good snapping of my IT band to top things off. All we can do is stretch and massage it, but it's still pretty painful. I'm having shin splint-type pain, which the PT feels is referred pain from the patellar tendon, so we know it's not healed yet. Finally, I've got that lovely, all through the knee ACHE that you can't point to and say 'it hurts here' because the whole joint hurts. I know that I have several grade II osteochondral (into the bone) lesions on the back of my patella, and I'm a little concerned about what this may mean for my future--the pain is like my chondromalacia pain used to be, only much worse.
Anyway, it seems like time for a checkup with the OS, and I'm waiting to hear back on that now. I'm not feeling too bad about the way things stand, I just want some advice on how to get even better. We won't know for some time whether things were 100% successful or not, whether I may need further surgery, so I'm reserving full judgement. In terms of function (ROM, increased activity, etc.) I'm doing great. In terms of pain and limitations, I'm doing better but not satisfied yet. And I'm still in more pain than I was when I went in for my very first surgery (LR) 18 months ago!
But I am very glad that I had this last surgery done!
Hope everyone has had some progress on their knee issues as well.
Heather
Posted by Janet (Janet), 18 February 2003
Heather,
I know what you mean about doing better but not good. Better is nice, but I want good! I find myself getting annoyed when people tell me I look like I'm doing better. Of course, I shouldn't. And I never let them know I'm annoyed. Just the other day, a co-worker watched me go down the stairs (I go one foot at a time, not foot-over-foot), and she said I was doing better. I couldn't believe it. I really want to go down normally, and won't consider myself "better" until I do!
Anyway, glad to know you're coming along. It takes such a blasted long time, doesn't it? Hang in there....
Janet
Posted by Laurie (Laurie), 19 February 2003
Heather,
Don't get down yet. It's only been 8 weeks or so since the surgery. Your ROM is great. You are going to have to give it time to heal. It took mine about 6 - 8 months before I had zero pain and all of the heat out of it. I had good days and bad days. You have to look at it long term.
Your on the elliptical trainer already! Remember what Steady said .. "Don't do anything that causes pain or swelling. Swelling causes scar tissue to reform." You have to keep the irritation out. If you are doing too much, then stop it, now. You don't want another surgery. Don't let your PT push you into something. Listen to your body. Go back to basics, wall slides , patellar mobs, ride bike with zero resistance, walk. If you have pain, then you are overdoing it. Is it hot or warm to the touch? If so, then you are doing too much. I know you want it all to be over, but you've come so far, don't overdo it and start the scar tissue cycle again. You don't want another surgery.
I know I sound like a nagging mom, it's just that I've been in your shoes and I know how you feel. I also know that if you push it too hard the scar tissue will start to reform and that's the last thing you want.
Take it slow and don't get bummed out. I'm rooting for you.
Laurie
Posted by hmaxwell (Heather M.), 26 February 2003
Thanks for your message, Laurie.
Dr. Steadman knows all about the elliptical trainer--he's the one who put me on it. He's very pleased with my progress so far. I'm not to do anything that hurts while I'm doing it or shortly thereafter, and those are my only restrictions. Once I figured out the elevation feature on the elliptical at PT I didn't have any more problems with pain. Because I had been working so hard, the PT prescribed a 5 day rest without elliptical, treadmill, etc. (only light exercise), and I had no difference in the pain and swelling during that time. So we are pretty confident that I'm not irritating anything by doing the non-impact stuff.
And the benefits from doing the treadmill (forward and backwards walking), elliptical, recumbent bike and nautilus leg machines--well, it's been phenomenal. I no longer walk with a limp, and the hyper-extensions are almost completely gone. The knee still pops, but much less often (a couple of times a day, maybe) and is entirely due to my VMO. Mini squats, step downs, and pushing off the leg (like balance or stool scoots) still cause pain and are still a no-no, though we do try them every couple of weeks.
I actually have only had three days with heat in the knee, which I'm really happy about--most of those were immediately post-op. If I even get a hint of that feeling, I hit the recliner and slap ice on the knee. That seems to head things off. I definitely listen to the knee.
As for my PT, he is awesome. If anything, I need him to keep me in check. I'm so excited about getting more function out of my knee that I want to try new stuff all the time, but he keeps me in line. Like yesterday. I had had two low pain days and was feeling really good, so I wanted to try walking backwards on the treadmill (this really works the quad). He said ok, but only let me do 5 minutes at 1.0 mph! It was pathetically slow, and I told him. He said *maybe* on Thursday I could go 1.2 mph for 6 minutes....he's very good about not overdoing it. I'm learning to be, because it really does more harm than good to irritate the knee.
Anyway, I spoke to Dr. Steadman through his nurse last week and he's really happy with the way things stand. I don't have to go back to Vail until March, and hopefully everything will be ok at that time.
I'm still far from normal, and still have a good deal of pain, but am encouraged by the progress.
Hope your knee is doing better with all the cold and snow of the Rocky Mountain winter.
Heather
Posted by lbdeharak (Linda), 27 February 2003
Hello Heather,
Glad to hear that you are making progress! Just keep listening to that knee so that you don't wind up starting all over.
Did the five days off feel good? Sometimes it seems like my whole life revolves around when I am going to fit in the knee stuff!
Keep up the good work! Linda
Posted by wofford99 (wofford99), 27 February 2003
Hi everyone- Heather, thank you so much for keeping us updated with your progress. You have given me hope. I do have a question for all. I have severe scar tissue left knee, and my doctor will not take it out- but I think it's gotten to a severe point. For the past week, my left knee (worse) has been extremely swollen. I was at PT yesterday and they usually saran wrap ice bags to my knees so they get colder and keep them on for 20 minutes. My knee is so inflammed that the ice did not even make my knee cold. My PT came running over and got this look on her face that something is really wrong. I am afraid like Heather's knee that the scar tissue is causing severe damage currently around especially the lateral edge where most of my pain is. All around my patellar tendon it was hot after the ice. In Dec 2001, I had my patellar tendon debrided and the top part of the tibia also debrided b/c it didn't heal from my TTT. I am desperate. No one will touch my knee. My PT said it is going to take something catastrophic for the doctor to operate. That is ridiculous. I think I should call my doctor and tell him about this swelling- what does everyone think? I appreciate any help. Margaret
Posted by hmaxwell (Heather M.), 27 February 2003
Hi Margaret.
I'm so sorry your knee is still acting up. I know exactly the kind of heat you are talking about--I used to sleep with my cryo-cuff on the knee and wake up with the thing burning in the middle of the night. No amount of ice took the fire out.
I'm going to be completely honest and say that from ALL of my research and personal experience, the only way to begin to feel better is to get the scar tissue out. However, the surgery is only half the battle. I could have had my previous surgeon cut the scar tissue out again, but since it kept coming back I knew that we had to do something differently. So did my surgeon--which is why he pretty much released me and refused to do anything further.
That's why I saw a new doctor who has done lots and lots of work with arthrofibrosis. It was a huge leap of faith on my part, but turned out to be a good decision.
I would encourage you to speak to your doctor, but it seems like he just doesn't know what else to do. If just cutting out the scar tissue worked, no one would have continuing problems with adhesions. But in my opinion there is a great deal more involved--namely, a very good rehab protocol developed by someone who understands the persistent, insidious nature of the scar tissue formation.
I would guess from your statements about your doctor that he simply doesn't know what else to do. Maybe you need to see someone else. When you haven't gotten the results you want, you've got to change the mix a little.
Where are you located? I've got tons of research on doctors who have done papers/research on treating arthrofibrosis, and could send you some of my stuff. I would strongly recommend seeing someone who would be able to develop a plan with you. If you can travel, I know who I would recommend hands down....
In the meantime, though, definitely contact your doctor and see what can be done about the inflammation. I had good success with oral steroids and cortisone injection, though in later surgeries I had severe infections that were attributed to the steroids.....
Take care.
Heather
Posted by Janet (Janet), 27 February 2003
Heather:
Sounds like you are doing great. How wonderful to know that you want to move things along faster than your PT thinks you should. That's a good sign! You are an inspiration to me. Please keep posting and updating your progress. And keep up the good work!
Janet
Posted by SueJ. (SueJ.), 13 March 2003
HI, Heather, Haven't heard from you in a while, just wondering how you were doing. maybe your in Vail now for a follow up. Hope things are going well from you and you are just to active to be tied to the computer!! Update us when you can! Sue
Posted by hmaxwell (Heather M.), 13 March 2003
Hi Sue and Janet and everyone. I wish I could say that I was out playing badminton or hiking, and that's why I haven't posted an update...but the truth is that PT is taking up pretty much all my time. With the time that I have left, I pick at work (I'm a writer) and have recently been helping my parents move for the last month (no lifting though).
Painwise, I think things are better--but only because I've been switched to longer lasting pain meds and am getting more effective relief! We also stopped doing knee PT 5 days per week--now we only do it M-W-F in the hopes that the pain would calm down. It has helped a lot, I'm afraid--which is good but also annoys me because I want to DO stuff, not sit around for a full day of rest after doing 30 minutes of exercise! It's frustrating, what can I say?
Part of the pain breakthrough has also come from aggressively working my VMO in the pain-free range--we do this by attaching e-stim to the VMO and then I do things like step ups, leg press, and elliptical trainer. The whole time I'm exercising, the e-stim is firing my VMO constantly, and that forcibly moves my kneecap into the correct position. It's like taping, only it builds muscle strength at the same time. It really works. We are also taping my knees when I'm done with PT, and that does provide pain relief at home as well.
I hit a scheduling snag and won't be going to Vail for my post-op check up until April 1. My doctor is fairly sure he will repeat the insufflation at that time. In all, I'm *really* pleased with my results. My knee mechanics are so much better, the swelling is finally settling some, and my knee is actually tracking pretty darn well. Bad things--the kneecap is still a bit too low (patella baja) and gets VERY painful after any amount of walking or time on my feet; I have sharp pain that radiates from below the knee up the medial side as well (more adhesions or irritated patellar tendon or both); and I have a horrible snapping and pain below the knee lateral to the tibial tubercle. My gait has changed, so we are trying to address this as a root cause of many issues.
But I'm only about 3 months post op, and things have improved so much in the last 8 weeks that I'm optimistic they will continue in the same vein. At this time last year I was on crutches and in agony, so it's an improvement!
I'm thinking of joining the YMCA nearby and doing uppper body work with a trainer. It feels so good to do stuff again. And I'm actually looking at the flower pots and lawn and thinking "I could probably manage to plant some stuff." I recently hung pictures that have been leaning against the wall for about 9 months (no joke) and have been thinking about photography again for the first time in a LONG time. I think getting the right level of pain relief has been a huge part of this process--I actually feel like a real person again, sometimes anyway The thorn in my side is work--as a creative writer, you pretty much have to be in a pain-free, concentration zone to work. I find that nearly impossible most days, either from the pain or the pain meds. I'm working on it, though, so to speak. And I'm planning a vacation in the sun--me, the beach, and NO PT'S OR FITNESS EQUIPMENT IN SIGHT!!!
Heather
Posted by Janet (Janet), 14 March 2003
Heather:
Thanks for posting. I was wondering how you are doing. It sounds like things are still going well for you, but have slowed down a bit. I know it's frustrating. Last time I was in PT, we were really encouraged at the beginning by how fast I was progressing, but then the pain made us slow things down.
We go to the doctor on the same day...April 1. I'm quite anxious about what he will suggest. Hope your appointment goes well. By the way, what's insufflation?
Janet
Posted by SueJ. (SueJ.), 14 March 2003
HI Heather, I'm glad to hear from you and that things are going in the right direction. Hang in there your doing great!!
I'm still trying to decide if I want to go and see my Os again, I'm not schedualed to, but my knee discomfort is really getting to me and I can't decide if this is expected after a TTT or not. The last thing I want to hear is "give it time" I feel I'm slowly losing ROM, (not much but still.) I alway's stretch it but I'm getting tired of that scar tissue pain (you know what I mean) when I bend it beyond where it want's to be. I'm probably in the !30's with my range, so I don't know,I guess I just keep wanting better, when I was at 90 I thought if I could just get to 120 I would be totally satisfied, now I'm beyond that and now that's not good enough! But oh that pain after sitting!!! We're planning a big vacation this June and I'm concerned about the Plane ride sitting for so long, then all the walking we will be doing. I've been still doing my E-stim and I tried your trick with the e-stim and excerise, it didn't help it still hurt to do the leg lift's, and I gave up doing the stair step/squats things they hurt way to much so I didn't see the benefit. But I have faithfully been doing my exercises in hopes that it truely is a muscle thing, that some day will help. Ok sorry for being so long on your journal, but I knew you would understand, talk to you soon Sue
Posted by Heather_K. (Heather_K.), 15 March 2003
Hey Heather, Glad to hear you are progressing so well. I am sorry for not posting on here very much anymore. With Pt 3 times a week, lasting 4.5 hours and loads of doctors appointments plus accupuncture, my time is limited. You said your pain is better controlled, that is absolultly super to hear, what are you taking now? My GP put me on MS Contin and it does nothing for me, I take the vicodin ES and I am still on muscle relaxers for my back, that actually helps me pass out for a short while sometimes. So you are heading back for more surgery in CO in April huh? I wish you a lot of luck with that. I am having a medial patella femoral ligament reconstruction, lateral release and screw removal ( I hope) on April 7th, I can't wait because the knee is getting worse all the time. I did find out that I need more ankle surgery though, from our favorite enemy~ scar tissue. Even though a portion of my sural nerve was removed, it was only one branch, now the other branch is trapped with scar tissue. Plus my most recent TTT knee is filled up with scar tissue, so this summer will be hopefully a dual surgery, left knee and ankle, both scar tissue, with the screws being removed out of the knee as well. I hope PT is still doing well and I look forward to hearing from you soon. Did you get my last message?
Heather K.
Posted by meg (meg), 16 March 2003
Hi heather. It's hard to back track these threads..somewhere i believe you (?) mentioned a dr. Wojtys. I just saw a dr. edward wojtys listed in ann arbor, michigan. Is this the same OS??
thanks, meg
Posted by hmaxwell (Heather M.), 16 March 2003
Yes, Dr. Wojtys is in Michigan. I believe Janet is seeing him for her scar tissue problems, so you could talk to her for her opinion on him. I've only heard wonderful things.
Heather
Posted by wofford99 (wofford99), 9 April 2003
Hi Heather- Thank you so much for posting all that info about your latest scar tissue surgeries. I am desperately searching for a doc here in North Carolina who may follow this protocol. I am curious how did you find that doc in Vail- I have heard of that clinic. Did you just call them up for an appointment? I have a couple of names of docs in the southeast but I really don't want to send my medical records around unecessarily. I guess I could just start calling.. I am desperate! Thank you! Margaret
Posted by hmaxwell (Heather M.), 10 April 2003
Margaret,
When I got desperate, I started reading online medical journals to see who had done research on arthrofibrosis. Then I started calling and explaining my situation, asking how to see if the doctor thought he could help without me having to travel. I basically ended up speaking to either fellows (OS's in training) or nurses (NOT the receptionist, in other words) who took a case history, spoke to the doctor, and got back to me on how to proceed. With the clinic in Vail, because they have such a high volume of people wanting to get in, I had to go through about a month of calling, telling my story, sending records, waiting for the doctor to review the records, answering more questions, then finally being accepted as a patient and getting an appointment.
So I guess the best thing for you to do would be to start calling the names you have already....you could also call the Steadman Hawkins Clinic in Vail and ask who in your area Dr. Steadman would recommend that you see for arthrofibrosis--maybe he has someone who trained under him and is familiar with the protocol in your state. The chances are you will have to travel...I live in a city of 3 million people and I still had to travel out of state to find the top two prospects for treating my knee. Arthrofibrosis is a very rare problem, and you've also had lots of other complicating factors. You may not be able to find someone who can help you in your immediate area.
Hope this helps--let me know how things go.
Heather
Posted by hmaxwell (Heather M.), 19 April 2003
Hi everyone.
Well, it's been a while since I posted. Not really too much new to report, I've been ordered to continue with PT and exercise as I was already doing, and we've added a few new things to address the dreaded scar tissue...yes, it is returning. BUT it's much less than there was before. It's still very though.
Anyway, I saw my doctor on April 1, and overall he was very happy with the way things were. The ROM is great--I can touch my heel to my butt without too much effort, I can hyperextend with mild pain twinges. The swelling is really starting to go down a lot. I still will get swelling and a lot of pain after I do anything that most people would consider normal, but my knee considers strenuous.
I'm now at the point where I can do some 'reall people' stuff, I just pay for it later. I've been to a baseball game, walked around a museum exhibit for 3 hours, gone to the mall multiple times, stayed upstairs in a 2 story house. Doesn't sound like much, but considering that before Christmas I was physically incapable of doing any of this, I'll take it. I do have a lot of pain after doing these things, though, which is a hint that things still aren't quite right.
The fly in the ointment is this darned patella baja. My kneecap is still too low, which leads to a lot of the chronic pain and inflammation (not to mention chewing up the cartilage on the back of my kneecap and the tibial plateau). We know there's more scar tissue around the patella, because they simply weren't able to get it all out. So now when I fully extend my leg, then then bend it---SNAP! That's not good...apparently the patellar tendon has contracted due to scar tissue and trauma, and the one surgery in December probably wasn't enough to address this problem. However, my doctor said that I've improved so much over the last 3-4 months that he wants to give my body more time to try to heal itself.
So, bottom line is that the knee is looking really good, but there are some problem areas. I'm still on painkillers every evening, which irritates me to no end. I don't get any pain during mild to moderate activity, but I do have pain and swelling after. The wrong step sideways or stepping on a pebble or something will send sharp pain spearing through my whole knee joint. In general, it's pretty irritated. My doctor's theory is that I'm caught in the swelling/inflammation/pain cycle, and we need a medical intervention to interrupt this and get my body to stop sending the pain signals. That means taking long-lasting pain meds on a regular schedule (I'm still resisting this) and doing some new treatments.
New treatments: my doctor wanted me to try acupuncture first, and we are doing this now. It's been very effective for the hip bursitis (!) and IT band syndrome that I've developed over the last two months. Yep, bursitis. It's really painful, but after two sessions of acupuncture and myo-fascial release it has calmed right down. Now we are focusing on the IT band and scar tissue massage. Oh, joy. I'm bruised from the tissue work, but I have to admit that a lot of my soft tissue, lateral side of the knee pain is fading away. Not gone, but much better. Unfortunately, the all-through-the-knee ache isn't helped as much.
If the acupuncture and myo-fascial release don't reduce my pain levels, my doctor wanted me to have cortisone and/or Synvisc injections. However, he also mentioned that I simply may need another surgery in 3 months to get the rest of the scar tissue. With that in mind, I have refused the cortisone treatment. I've had too many problems with infection when I've had cortisone or oral steriods followed up by surgery within a 3 month period. I'm also a bit hesitant on the Synvisc, since it has the same potential for infection. So I'm probably not being the most cooperative patient in this respect, but since my OS is 60% sure I'll need another scope, he understands my position.
I'm still doing pretty much the exact same stuff I've been doing since 8 weeks post-op: elliptical trainer, treadmill, bike, weight circuit for lower body (adduction, abduction, leg press, and seated hamstring curl), step ups, side and straight leg raises with 4 lb weights. Still can't do mini squats, step downs, any lateral motion, or anything involving bending my knee while weight-bearing. I'm also getting manual therapy for the scar tissue and IT band syndrome
Everyone who sees me says they can't believe how well I'm walking, but very few know the effort and concentration involved in not limping....you guys know, though. Would I do the surgery again? In a heartbeat. Am I completely cured? No. Will my knee ever be 'normal' again--I'm told it will not be. Should be fun to see how much I can manage to do to shock them.
Sorry for rambling, but that's the update from Phoenix. For all those suffering with arthrofibrosis, I can't stress enough the need to have a skilled surgeon who really understands both the surgical AND the rehab requirements for this condition.
Take care everyone.
Heather
Posted by meg (meg), 19 April 2003
Heather, thanks for the update! I'm glad some things are going well for you. WE all know the everyday normal people things are a BIG DEAL. It is so odd to think I haven' t walked my dog in 11 months!! And yes, normal gait and posture is really hard to keep up.
I'll be going for my first 2nd opinion (in a year) next week in Green Bay, Wisconsin, since it's the closest. I haven't been as thorough as you in my inquiries of new OSs, so I really don't know what to expect, esp. since he can't do an MRI right away.
My ROM is still really slow, and now I have possible medial meniscus problems, causing me to wince/limp. I just began a soft knee brace which is helping some. I haven't tried using it with the bike. elliptical, etc.
Good luck with your pain. Do you think your bursitis was caused by all the misalignment of your body? I worry about my lower back, hips, and even neck and shoulders from my new bad postures while trying to walk.
Meg
Posted by hmaxwell (Heather M.), 19 April 2003
Hi Meg.
My physical medicine and rehabilitation doctor--as well as my OS and PT--believes the bursitis is a direct result of the knee problems. My IT band got so tight that it started snapping on the top of my femur...that irritated things and got the bursa inflamed. I'm actually having the pain on both hips, but the 'bad' side is much worse. My lower back on the bad side is also quite sore, especially after sitting at the computer.
I've had acupuncture on the lower back, hip, IT band and below the knee. It's really helped with the new pain in the lower back and hips.
Heather
Posted by Janet (Janet), 19 April 2003
Heather,
Once again, you've said something that really hits home with me. I, too, have sooo much trouble doing any bending of the knee while weight bearing. It's frustrating, because the doctors always do a knee exam while lying on your back, and it's not at all the same as when standing. I have to point that out and make sure they have me show them. And although I never walk normally, after about 15 minutes, my knee is so irritated that I don't want to bend it at all. This really keeps me from doing much of anything. When I took my daughter to the mall last week, I actually made it about 45 minutes before we had to rent a wheelchair. At least she doesn't mind pushing me, and it allows me to get out and do more "normal" things.
I also have the snapping when going from full extension to flexion. In fact, you can see it when it snaps. Anyway, keep up the good work. It's always good to hear from you.
Janet
Posted by Laurie (Laurie), 23 April 2003
Heather,
Hang in there. I ended up doing about 20 sessions of Accupuncture. It really did help, significantly. It reduced the heat, swelling and nerve problems I was having.
I also ended up with a misaligned patella. This was solely due to muscle imbalance because I had so many surgeries, like yourself. I really made sure not to over do it and make sure that every excersize session hit every muscle group, so I could balance the muscles back out. In my case, my VMO was really weak. A weak VMO will cause your patella to sit low. It will also make your IT band tight, because it does the work to compensate. If you can sit against the wall with a ball between your legs, squeeze the ball, hold for 15 seconds and repeat several times. If this causes any pain or swelling, don't do it, or make it super simple.
As far as weight bearing pain with bending( like trying to go down a step), I too had this. This was the last thing to go. Here is what I did.
1. I waited until all swelling and heat was completely gone from the knee. In my case that was about 7 months after the debridement.
2. I got a book, put it on the floor and did 4 sets of 25 step downs from the book. Here is the key. If you have any pain whatsoever, the book is too thick. Get a thinner book. You cannot have any pain while performing this or any pain afterwards. If you do, then it's too much, too soon and this excersize will only make your knee worse. So NO PAIN. NONE. The book I started with was less than 1" thick. It was pathetic. But after 3 - 4 months of doing this 5 times a week and increasing the book thickness as I could I am now up to a full step. It's like 12 inches.
The step downs with the book is the ONLY THING that worked for me to rid myself of the weight bearing pain.
Good Luck and don't give up.
Laurie
Posted by wofford99 (wofford99), 23 April 2003
Hi Heather- Your post about your IT sounded so familiar. Mine is very tight and is also popping quite badly. It has scar tissue all over it and now my orthopedic surgeon finally caught the osteomyelitis (bone infection in my tibia from the screw hole from patella realignment), which triggered my awful scar tissue all over the IT band,etc. Most likely, I will have to have surgery to clean the bone and hopefully they will clean out the scar tissue at the same time. If you don't mind Heather, I am going to print your post-op scar tissue protocol and take it to my doctor. It might help me. I don't know if I will be able to follow it though due to the tibia situation. I have heard I have to keep it still and in a splint- this could be another major obstacle after the surgery. We will see. Thank you for all of your posts! Margaret
Posted by windbarb (windbarb), 23 April 2003
Heather,
You are a wealth of information to the rest of us and I hope that you can take at least some small comfort in the amount of help you have given to others on this board (including me!).
I know how you feel about doing "real people" stuff. I went to the mall last weekend for the first time since before Christmas. I felt great when I was able to take my time and browse around while shopping just a couple of weeks after surgery... rather than just going straight to what I needed to get and leaving as quickly as possible. It's nice to be able to use the stairs when I have to go up one floor at work. In fact, given what you've been through, you really do sound like you're doing well in recovery.
And hey... who was given the right to define "normal", anyway! I've taken "normal" to mean somewhere in the middle of all my ups and downs (that's the scientist in me making that definition)... so it's just as easy to have an "up" streak as it is to have a "down" streak. And if you're much like the rest of us, you probably don't spend much time in the middle... it's either up or down! My advice to everyone is to think like a meteorologist... when we say that the "normal" temperature on April 23rd is 58 degrees, we mean that 58 degrees happens to be the average of everything in a range from 25 to 85 (I made up the numbers, BTW... but the concept is true!), and the most common temperature might actually be 52 degrees. We can apply that to ourselves... "normal" is the average of the highest and the lowest, or the best and the worst, and we may never spend a day actually being "normal".
And now that you all know why I'm not normal ...
Your rehab program sounds so comprehensive... I hope I don't regret down the road not doing formal PT at this point. I feel myself progressing, so I'm not too worried... but since I've formed scar tissue once, I do worry that I'll continue to form it. It's helpful to know what others have done to rehabilitate.
Speaking of rambling, I guess that's enough out of me for now!
Cheers, Barb
This page is a thread posted to the kneegeeks forum
at www.kneeguru.co.uk and
archived here for reference. To jump to the archive index please
follow this link.
I can't imagine being in PT right after surgery like that..but I am sure it's the thing to do. 
I hope you continue to recovery as well as it sounds like it is going.
It must be hard to have to be in such intensive PT right after surgery but it seems like it's good for you-140 degrees right after surgery is great news!! I really hope your recovery keeps going as well as it seems to be right now! Good luck and keep us all posted on how you're doing!!
. I'm sure some tall tale of a massive skiing accident would be very believable!
Hey Heather,
I didn't have any more problems with pain. Because I had been working so hard, the PT prescribed a 5 day rest without elliptical, treadmill, etc. (only light exercise), and I had no difference in the pain and swelling during that time. So we are pretty confident that I'm not irritating anything by doing the non-impact stuff.