KNEEtalk

DIARIES => Post op diaries (>300 posts) => Topic started by: annie5970 on November 15, 2010, 03:45:50 AM

Title: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 15, 2010, 03:45:50 AM
Hello Everyone,

Well, tomorrow is the big day! I am scheduled to have TTO surgery first thing tomorrow morning. My arrival time is 5:30 a.m., with a surgery time of 7:30 a.m. I am expected to stay in the hospital 1-3 days, and am getting terribly nervous. I am as ready as I can be, and now am just waiting for lift off in the morning. I have had surgery on this knee 4 times in the past year, plus I had an MUA in July after developing a hematoma in the joint post LR. I developed scar tissue and lost ROM, so an MUA was performed.

I won't go into the lengthy details, but will just state that I have PF issues, maltracking, squinting patellas, patella-alta, subluxations etc. All the usual suspects that precipitate this surgery.

I am getting more nervous by the minute, but put on my game face, take a deep breath, and be brave. I survived stage-3 breast cancer a few years ago, so I already know I am a trooper. However, the level of pain this surgery will cause has be a bit rattled.

I am still undecided about whether or not to have a femoral nerve block, but will speak with the anesthesiologist in the morning about my concerns. I am afraid of the potential complications from the block, and I also understand it only dulls the pain, and does not really reach far enough down the leg to the area where the TTO is performed, so I am not sure it is worth the risk. I have enough qualms about possible complications from the TTO, and just am not sure I want to add to that box of worries.

I will continue my diary once I am back online, and feel like typing (and not spaced out from the meds).

All my best to all the KG's gang.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on November 15, 2010, 04:27:53 AM
Hi Annie, first and foremost Welcome to Knee Geeks and best of luck with your surgery.
I can relate to your feelings of anxiety pre-op we have all been there.
I am guessing that a TTO is the same as a TTT (Tibial Tubercle Transfer)? (sorry I'm not very up with my medical jargon.. I think I have lateral and medial down pat, but that's about it ) :)

I'm very sorry to hear of your battle to beat breast cancer, you must be a very strong person.
On the subject of the Femoral Nerve Block, I had one, and wouldn't have wanted to go thru my op/recovery without it. My anesthetist put it in while I was still under GA so I didn't feel a thing and it was very good in helping relieve some pain. Put it this way, I knew when it had worn off!

When you are feeling better, I'd love to question you on the MUA, this has been tossed about in my case as I have a frozen knee and I'm really unsure what to make of it all. It would be great to talk to someone who has actually had it done before.. if you don't mind.

Well all the best, its awesome you got on the top of your surgeons list, first cab off the rank.. the waiting is the worst part, I didn't go into theater til 4pm and it felt like forever!!

Looking forward to hearing from you on the other side.
Kat xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Bigman78 on November 15, 2010, 10:57:19 PM
Good luck Annie and all the best!!!

Hope the surgery is a success!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 15, 2010, 11:54:54 PM
Good luck! I'll be looking forward to your post-op account of what happened :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 16, 2010, 02:31:28 AM
Hope it went well today for you Annie, and welcome to the board.  Everyone here is the best.
 :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 17, 2010, 01:02:48 AM
Wishing you an easy recovery!  I had my TTT nine weeks ago.  I, too, was terrified of the pain.  I heard such horror stories, some from my OS and PT guys.  I am one of the lucky ones.  My pain has been minimal, as in, basically no pain.  I stopped pain meds before I was even discharged from the hospital.  So there is hope.  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 17, 2010, 06:17:48 AM
Hi Annie,
Hope everything went well! I've been thinking about you the past couple days and sending good vibes your way!  I see Duckie, Kat Walk and Mermaid have already popped over to say hello. They area all great resources having recently been through this and have provided me a lot of support as well! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 17, 2010, 06:20:25 AM
Just saw Melissa said hi too...didn't mean to leave you out on my initial response.  Sorry Melissa.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 17, 2010, 03:45:39 PM
Hello Everyone,

Thank you so much for the well wishes and support. I am home now and on the other side of my TTO surgery. I am in a great deal of pain, and have a ton of blood in my joint (again). The same thing happened back in April after my lateral release, and I had to go back into surgery 8 days later to get it out. It is too thick right now to try to aspirate, so we are trying to wait until early next week, when it is a bit thinned down, and aspirate it with a needle. The pain from the surgery is bad enough, but add the pressure in the joint due to the blood, and it is excruciating!

On Monday, I arrived at the hospital promptly at 5:30 (only slept about 45 minutes the night before), was IV'd, given some xanax, put on my pressure stocking (on the non-surgical leg) and waited. In no time, the anesthesiologist came in, told me he would do general anesthesia (I did not have the nerve block), and that as soon as my OS came in, we would get going. My OS came in around 7:00, calmed my nerves, and wrote "Yes" on my surgical leg. I was taken back on time, and really do not remember much. The anesthesiologist began injecting various meds in my IV as soon as I was in the surgical room, and I was out. I woke up about 1 1/2 hours later, and the pain was pretty bad. However, my OS injected a cocktail in my knee, and around the area of the TTO, so it was dulled pain.

I spent the night Monday at the hospital with injections of Dilaudid every two hours, and percocet every 4 hours. I also was given coumadin and iron, and never slept a wink all night long. I was up urinating every two hours, so the wonderful nursing assistant (who I had met in April when I had the hematoma surgery) was helping me all night long. Yesterday, the OS's PA, who is also his surgical first assistant, was on rounds at the hospital. Due to the blood in my joint, I was told not to begin PT until after I see the surgeon. I was originally set to see him two weeks after surgery, but it was moved up to next week. I was also taken down to 30 degrees on my CPM, instead of beginning at 40 degrees.

I got home last night, and started with chills and a low-grade fever (around 99.6), but did  not worry too much about it. My paperwork says to call if I run a fever over 101 degrees, which I have not. I slept until around 5 a.m. this morning, and have been up ever since.

I was sent home with Mobic, oxycontin, and Norco for BT pain. I am also to take a 325 mg aspirin 2xs per day to avoid blood clots. I am trying to get by with just the Norco, as the oxycontin makes me feel a little wonky, but will take it if push comes to shove. I am WBAT, in a mobilizing brace locked at full extension, and on crutches. My incision goes from the top of my knee, all the way down to about 3 inches below my kneecap. My spirits are up, even with the pain and complications, and I am hopeful for better days ahead.

The blood rushes are pretty bad. When I get up, I do it in increments, allowing my leg to get used to the change in position, and it helps some. I also have a stool to prop my leg on in front of the toilet, which is helpful in alleviating pain. My nurse aide put the bathroom garbage can in front of the toilet for me too, and it was helpful.

It was odd, when I went into surgery, my IV was in the back of my hand. When I woke up from surgery, it had been moved to the inside of my wrist. I guess it must have been a bad line, or popped out and had to be moved.

I will update again as time moves forward.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 17, 2010, 04:15:35 PM
Annie, I'm glad to hear you're home. That'll probably make you feel better alone.

I'm sorry to hear you have bleeding in your joints again. That sounds awfully painful. I can remember having to pee a lot when I spent my night in the hospital. I was up every two hours, but the nurses got me a commode so I didn't have to travel all the way to the bathroom.

Don't skimp on the pain meds...if you fall behind on the pain you'll never catch up and you'll end up back in the hospital. It's not a game you want to play. If you're in pain, take the meds...and then sleep!

That's a large scar for just a TTO. Did you have anything else done while they were in there? I didn't see anything in your original post. My TTO scar is only about 1.5-2 inches long, underneath my kneecap towards the lateral side of my tibia...but my surgeon did say he practiced a new technique for days before he did surgery on me to avoid excess scaring...so maybe I'm a weird exception.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 17, 2010, 07:34:25 PM
Glad you are over the worst part.  It will just get better and better each day.

My scar is about 5 inches, but my OS had to my TTT a different way due to the weirdness of my knee.  I guess that required a bigger incision.  I am very short, so 5 inches on me goes down quite a ways.  In my opinion, a small price to pay for a good outcome. 

Don't be surprised if you don't sleep through the night for quite some time.  Seems be a common issue after this surgery.  Nap when you can.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 17, 2010, 10:15:58 PM
Thanks everyone! I am definitely feeling the pain and burning in the joint. I feel like my knee is radiating heat, although it is not red. I just do not think they make ice that is cold enough :-\

Duckie, I think my incision is so big because he had to clean out a ton of scar tissue. I keep getting so much scar tissue due to bleeding into the joint post-surgically, and here I am bleeding into the joint yet again....very frustrating. I was told that clearing scar tissue out is a lot like scraping the inside of a melon with a razor blade. It worries me about the blood, since scar tissue carries it's own problems, but I will just try to role with the punches.

Do not worry, I will definitely take my pain meds. I would never sit around in pain post-surgically when we have medicine to help with that. I was not shy to ask for more in the hospital when I needed it either. Some nurses are better than others at keeping a good pain-med schedule, so I had to ring the nurse a few times.The whole reason my OS keeps his TTO patients in the hospital overnight is for pain relief, so I expect the nurses to follow his protocol. I am doing pretty well with the Norco and ice, but when it gets close to time for the next dose, the pain really amps up.

My ankle really hurts, and my foot keeps falling asleep, really annoying. I am ankle pumping often, to keep the blood flowing.

My mom is here now making a good, healthy dinner; she is such a good mom...God bless her  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 18, 2010, 04:36:55 AM
Okay, your incision size makes a bit more sense to me now! ;) it sucks that you had to have so much scar tissue removed, though. Odd that it doesn't happen to all of us. The idea of having fluid taken out of me knee squigs me out sooo much! That'd have me running for the hills (if I could run!)

I'm glad you know to stay on top of the pain meds, too many people fall behind on them and end up back in the hospital a few days post-op.

Take advantage of the mommy sympathy card! My aunt (mom #2) took care of me for 2 weeks. Bless her heart! She didn't have to. She's actually recovering from foot surgery now and keeps calling to tell me she understands my pain and struggles sooo much more now that she's NWB and on crutches. Poor thing has screws in her foot. Isn't it odd that I think I'd find that more troublesome than the TTO? Ha.

You aren't the only one with ankle pain. Cdubb is currently going through that! I can remember my foot going tingly like it fell asleep.

Oh! Are you in a ROM brace or an immobilizer?
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 18, 2010, 05:59:06 AM
Hi Annie,
Just reading through your diary now.  Sorry I haven't logged in sooner...I've had a rough day myself and slept a lot of it away due to some increased in pain meds.  I e-mailed you though...so I don't feel too neglectful!  Glad to see that the other TT girls are providing support! 

Definitely keep up on the pains meds...don't worry about taking too much as long as you're staying within the parameters of what is prescribed.  That's why they prescribe them. 

I hear you on the ankle pain...mine has been so painful the past 3 days and only increasing, which is odd since I'm 2 weeks out and my knee kis feeling pretty decent all things considered...that or my ankle hurts so much that it makes me forget about the knee.  I'm even struggling with my heel/toe touch weightbearing because it increases the ankle pain, which I haven't had any issues with weightbearing what I am permitted  with since day 1.  I have had ankle pain since the beginning, but I just attributed it to all the swelling, now the swelling is gone and it's hurts even more.  My foot was very tingly for several days post op.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 18, 2010, 02:39:05 PM
Okay, your incision size makes a bit more sense to me now! ;) it sucks that you had to have so much scar tissue removed, though. Odd that it doesn't happen to all of us. The idea of having fluid taken out of me knee squigs me out sooo much! That'd have me running for the hills (if I could run!)

I'm glad you know to stay on top of the pain meds, too many people fall behind on them and end up back in the hospital a few days post-op.

Take advantage of the mommy sympathy card! My aunt (mom #2) took care of me for 2 weeks. Bless her heart! She didn't have to. She's actually recovering from foot surgery now and keeps calling to tell me she understands my pain and struggles sooo much more now that she's NWB and on crutches. Poor thing has screws in her foot. Isn't it odd that I think I'd find that more troublesome than the TTO? Ha.

You aren't the only one with ankle pain. Cdubb is currently going through that! I can remember my foot going tingly like it fell asleep.

Oh! Are you in a ROM brace or an immobilizer?

I am in an immobilizer for the first two weeks, then I will be switched to a ROM brace. I am getting sort of worried about the immense pressure in my joint from the blood. My knee is burning hot, and I have had a slight fever off and on for two days. I feel bad having to call the doctor about yet another complication (makes me feel guilty in a foolish way).
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 18, 2010, 02:44:12 PM
Hi Annie,
Just reading through your diary now.† Sorry I haven't logged in sooner...I've had a rough day myself and slept a lot of it away due to some increased in pain meds.† I e-mailed you though...so I don't feel too neglectful!† Glad to see that the other TT girls are providing support!†

Definitely keep up on the pains meds...don't worry about taking too much as long as you're staying within the parameters of what is prescribed.† That's why they prescribe them.†

I hear you on the ankle pain...mine has been so painful the past 3 days and only increasing, which is odd since I'm 2 weeks out and my knee kis feeling pretty decent all things considered...that or my ankle hurts so much that it makes me forget about the knee.† I'm even struggling with my heel/toe touch weightbearing because it increases the ankle pain, which I haven't had any issues with weightbearing what I am permitted† with since day 1.† I have had ankle pain since the beginning, but I just attributed it to all the swelling, now the swelling is gone and it's hurts even more.† My foot was very tingly for several days post op.

Annie: Cdubb, I am so sorry about your increased ankle pain. Did you call the doctor? I am considering having to call the doctor myself as the blood in my knee is causing me some issues. The pressure in my joint is so bad, and my joint is radiating heat. I have been running a low-grade fever off and on for two days, and I am worried about an infection setting in. I know the blood is too thick to aspirate this soon out (remember I have had my knee aspirated about 16 times in the past year, so I am a pro at that aspect). I feel kind of bad having to call about another complication though, and I know I should not feel that way, but I do.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 18, 2010, 03:10:39 PM
Annie, definitely call your doctor if something is wrong. Better safe than sorry! I'd hate to see you develop even more complications because you held off on calling.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: KW on November 18, 2010, 03:18:05 PM
Annie, definitely call your doctor if something is wrong. Better safe than sorry! I'd hate to see you develop even more complications because you held off on calling.

I could not agree more!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 18, 2010, 04:19:33 PM
Actually, I do not think the heat is quite as hot today, and my fever is gone for now. If it gets worse, or my fever comes back, I will call right away. His office and the hospital are both an hour from my home, and that can be a bit of a pain at times. I am watching it very closely, and will call if signs of infection set in. The knee is not red, just super swollen and very bruised. In fact, I am bruised from a couple of inches above my knee, all the way down to my ankle, and the back of my knee is also bruised.

I was originally supposed to begin PT one week after the surgery (just some ROM exercises), but he delayed that until I see him next week and get the blood drained. I have my CPM, but I was originally supposed to begin at 40 degrees, and increase 5-10 daily as tolerated. However, due to the bleeding, he pushed my start to 30 degree, with an increase of 2-3 degrees daily. I really hate having complications right out of the gate. I think I will feel much better after the hematoma is removed from the joint. Having too much volume in the joint is really excruciating. It is worse when I attempt to stand, and I can feel every beat of my heart in my knee. I found myself sitting for hours last night, not wanting to get up to use the restroom, because it sets off a firestorm of pain and pressure.

My mom has been here since my husband left for work this morning, making me breakfast, and tidying up the house for me. I think I will send her flowers when she returns to work to let her know just how much I love and appreciate her.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 18, 2010, 04:32:13 PM
Annie,
The bruising is normal.  I have a pic posted on my diary of my leg, but I'll shoot you an e-mail with the pic.  My pic is a week out. It doesn't show the full extent of the bruising on the back of my knee, but you see part of it.  And never feel bad about calling the Dr.'s office.  I am lucky in that I have my Dr.'s 2 PA's e-mails, as well as my Dr.'s e-mail. I don't generally e-mail my Dr. because he has 2 PA's for a reason.  Both his PA's are very knowledgable and a great resource.  I e-mail then all the time!  They actually probably get tired of hearing from me, but you know what...it's my knee...and I need to feel okay about what is happening with it.  When the Dr. has needed to get involved, they copy him on the e-mails and he is just as prompt in responding.  It's comforting to know how accessible they all are. 

That's great your mom is around to help you.  Mine actually hasn't visited since...she knows I have a great hubby around who took a decent amount of time off. He took the rest of the week after surgery, then he took a couple days off (plus had Veteran's day off already) the following week and the days he worked, he only worked very short days. This week he's back to working normal length days.

My CPM is still only at 45 and will be there until 6 weeks out, but that is only due to my ACI, which really restricts ROM increaes and really slows up PT progression.

Hopefully, at a week out, then can get some knee aspirate out.  I've only had my knee aspirated once, but it was due to normal swelling that didn't subside and wasn't thick, post surgical bloody aspirate, so my experience would not be similar to what you've had.

Maybe you'll get all your complications out of the way early and then it will be smooth sailing!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 18, 2010, 06:53:33 PM
My mom is great! However, I am taking my final MBA course, and need some total quiet, study time, and I feel bad telling her that. I do not want to hurt her feelings, or make her feel I am not grateful, because I am so grateful for her everyday of my life. I am a person who needs alone time every single day, my husband understand this about me, and I sometimes just need to be alone, study, and work on my homework. When I have company, even my mom who I see practically every day, I feel like I need to sit and visit, so it distracts me from my homework. I have only a few weeks left to finish my MBA, and I do not want to drop-the-ball now. My mom is a big supporter of me finishing my degree, so I hope she will understand that I need just a couple of alone hours tomorrow morning to work on some homework.

I am going to attempt my first post-op shower tonight when my husband gets home from work. My incision is not draining any longer, so I will wrap it and give it a try. I am a little scared of hiking my leg over the edge of the tub, so we will see how it goes. I feel grungy, so I really want to give it a whirl.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 18, 2010, 07:15:43 PM
Good luck with the shower.  Definitely have your husband there to help you until you get  your method for exiting and entering down pat.  Getting the leg over is the most difficult part.  What I do is get my good leg in first when using a crutch on my left side for stability (since I am only 20-30% WB), then stand with my weight on my right leg and holding the rails on my shower chair, slowly lift my left leg with my left arm in without bending too much, then I am facing the shower chair with my hands on the shower chair rails, I slowly turn and lower myself down. I then prop my left leg on the side of the tub, so it's extended straight. I reverse process for exiting.  It's absolutely exhausting for the first week, but well worth it...I feel so much better after a shower.  Really lifts my spirits.

I'm sure your mom will understand if you want to work on your homework!  Although...I have no idea how you can focus on that now. I have had no desire to do any work right now.  I haven't even logged in through our remote access portal.  I've answered a few e-mail questions from my supervisor, but that's it.  When I return, I'll actually be transitioning into a supervisor role and I haven't even had the desire to look over the supervisor manual or read each client's service instructions to become familiar with when I transition into that role.  I know I need to start thinking about it, as well as planning a more concrete return to work date, but I just can't think about it...I'm tentatively out until 12/14, but really hope to return about 12/1.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 18, 2010, 11:18:59 PM
Hi Cdubb,

To be honest, I really do not feel like doing homework, reading my text, or logging on to class right now. My surgery date happened pretty fast, so I had very little time to plan ahead. Our medical insurance is changing at the beginning of the year, and everyone is required to be on a deductible plan. I had asked my OS to try and get me in by the end of this year, since I did not want to have to come up with $2,000 out-of-pocket at the beginning of the year. I have been on disability for over a year now due to this knee, and I just cannot swing that kind of bill. When his scheduler looked at his schedule, he was totally booked during December, but had a cancellation for November 15. I really only had about 6 days to prepare, but went ahead and took the cancellation date. I had already started my final course for my MBA, and do not intend to drop now that we are almost half-way through. My instructor has been great, offering me extensions on work if I need them. However, I hate falling behind, so I am trying to avoid that.

I actually broke down and called the doctor today, since my pain is getting worse again with the hematoma, and I am hoping they can aspirate enough out to relieve some of the pressure. I did not hear back from one of the assistants until after the office closed, and the PA had already left for the day (most annoying). He said he would talk with her first thing in the morning at 8:30, and be sure she called me back promptly. He said to not move around, keep my leg elevated and iced for the rest of the night. I guess they think I was not already doing just that :P Honestly, that is just about all I can do, so, of course, that has been my routine anyway. I guess my dreams of a shower have been sidelined for the evening.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 19, 2010, 05:53:34 AM
Annie,
I can completely understand why you did your surgery so quickly before the end of the year if your insurance plan was changing. I wanted to get mine in before year end also because prior to surgery we were only about $1500 away from our max out of pocket per calendar year.  When the August scope ended up just being a scope and cell biopsy for future ACI/AMZ and ACI requires insurance approval (it's crazy expensive) and they said it takes anywhere from 4 weeks to 4 months to get the approval and then there is another 4 weeks required for Genzyme to expand the cells, I was getting nervous...ACI is ridiculously expensive, so I did NOT want this to roll into another calendar year with a whole new calender year out of pocket max.  Luckily, my insurance came back with the approval in under 2 weeks from submission.  I'm sure you'll pull through just fine with your last class for your MBA.

Hopefully, they'll try and get something aspirated tomorrow since it's Friday to try and relieve a little bit of pressure to get your through the weekend more comfortably.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 19, 2010, 01:52:23 PM
Thanks cdubb, I appreciate your support. I ended up getting up this morning, and my hubby helped me with a shower. You are right, it was completely exhausting. I had to keep putting on my brace, taking it off, putting it on, taking it off. The darn brace has about a 1,000 velcro straps, and it is a little infuriating, to say the least. I did not sleep well at all last night, and kept waking up every hour. I was so uncomfortable, and just could not seem to get my leg in a good position. I hate sleeping on my back to begin with, so that always is a little tough. My three babies, Josephine, Napoleon, and Ella (chihuahuas) all got on the bed in the night (I think they were cold), and I was so afraid they were going to walk on my leg. It is my own fault; we have spoiled them terribly over the years, and they do not understand that mommy cannot have them clamored all over her right now.

Cute story about Josephine: When I was first diagnosed with breast cancer, we had been thinking about getting a puppy. We had lost our dog to lymphatic cancer several months before, and I was just feeling ready to get a dog again. I wanted a small dog this time (we had shar-pei's for years before getting Josephine), and we went to on the hunt for a chihuahua. I found Josephine when she was only about 3-wks old. We ended up taking her home at 5 weeks (the breeder was moving, and was selling the puppies too early to make her life a bit easier). I tell you, having Josephine to care for took my mind off the cancer, and gave me something positive to focus on. That little dog never left my side, and she just has that "something special" that makes everyone fall in love with her. After my cancer treatment was finished, I sent in her AKC papers, and suddenly realized, she was born the day I found the lump in my breast. I firmly believe she is an angel who was sent to look after me, and we adore her. She made me laugh during a time that was so hard, and I thank her every single day.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 19, 2010, 06:56:10 PM
That is a cute story about Josephine!  It's amazing how animals are so important in our lives and our own recoveries!  I have my cat who sleeps with me every night and I call her my recovery cat.  In her mind though, I'm probably sleeping with her because I'm in our guest bedroom on the main floor (so I don't have to deal with stairs) and she always sleeps in that room and we jokingly call it Biddy's bedroom.

As time wears on, the showers become less and less exhausting...although, even at 2 weeks, 2 days- my heart was racing by the time I sat down on the couch after showing, getting dressed, getting the brace on, etc.   I also had a decent amount of narcotics left in my system though because I take more at bedtime, which I find makes me more tired and more winded moving about in the morning and makes my heart race more.  When I'm just hanging out at home, I actually rarely put the brace on.  I'm permitted to sleep without it now and if I'm just sitting on the couch with my feet up, I see no need to put it on.  My trips to the bathroom are so short, that I don't bother putting it on. So, it's really only on if I'm going to be out ambulating a lot.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 19, 2010, 08:18:13 PM
Hi cdubb,

Thanks for giving me hope about the showering becoming less exhausting. By the time I was finished with my shower this morning, the pain was so bad, I was actually sick to my stomach. I talked with the PA this morning, and she said my pain will likely peak over the next few days, then should begin to slowly level off. The blood is anticipated too thick to attempt a drain this early out, and she hesitates having to keep poking needles in my already painful joint, only to come up empty-handed. The surgeon had sent my CPM to my house prior to surgery, and a core flex ice wrap (I also have a million packs from the hospital). However, they are sending the same company out today with an ice/compression machine to help with the pain, and try to encourage thinning of the blood in the joint. The doctor said if the pain gets too out-of-hand this weekend, he wants me to go to the ER for IV pain meds, and he will admit me for a couple of days, however, I am trying to avoid this. I told her that I hate the oxycontin, and percocet, and asked her to call me in some hydrocodone instead, so she did (norco), and upped the strength and dosage. I was also called in an antibiotic, just to keep an infection from forming. On Tuesday, my doctor is going to attempt to aspirate the blood, and I pray he is able to get a lot of it out.

That is cute about your cat. I completely understand, we call our dogs the "kids", since they really are our children. Napoleon joined our family two years after Josephine, and we have had Ella only a few months. Ella was actually a rescue, and she came to us with a newly broken leg (she was dropped on the floor, and left to run on her broken leg for several days). Unfortunately, the break was on the growth plate, and she was only a couple months old, so, despite our best efforts, her leg is a little crooked, but she run like the wind on it. Long story short, we adopted her, got her fixed right up, and she is a little angel. I tell ya, I am about one step away from being the crazy chihuahua lady  ;)

I was able to talk my mom into going and doing a little of her holiday shopping today, but she calls me every 30 minutes  to see how I am, or if I need anything. She sounds like she is finding a few good deals, and I am so happy for her to get out a little during her two weeks off. I hate that she has been spending all of her time tending to me.

Seems nice to have all the Betadine washed off my leg; no more orange leg. My bruises are really starting to surface now, and I am very colorful. My incision is about 7 inches long....seems a bit excessive, but I am not a doctor.

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 19, 2010, 09:53:13 PM
The showering does get easier.  In a few weeks, you be in and out of the shower without even thinking about it. 

So sorry to hear you are in so much pain.  At least your doctor is offering possible relief.  It will get better. 

My incision is about 5-6 inches long.  There are so many scars on my knee that the length of this one doesn't bother me.  At least it is nice and straight.  It is healing quite nicely.  By the time it is warm enough to wear shorts again, I don't think it will be that noticeable.   
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 19, 2010, 10:32:07 PM
Hi Mermaids,

Like you, my knee is also riddled with scars, so one more is not a big deal. Actually, I do not even care about the scar, as long as my knee improves as a result of the surgery. I have so many scars from cancer treatment and surgeries related to that, it looks like I was in a knife fight...and lost.

I never even had my breast reconstructed after my mastectomy; it just does not mean that much to me. I consider my scars as my battle wounds, and wear them proudly  ;)

Thanks for the support, and vote of confidence about the showering. My mom is picking us up some chinese take-out, which sounds yummy.

I have already started my holiday shopping (all online this year). I am so glad that online shopping has become so prevalent in recent years. It will truly be a lifesaver this year while recovering from surgery. I do like to go out and enjoy browsing, but sometimes the electronic carts are taken, and I simply cannot walk around this year.

The back of my knee is absolutely, shockingly black-and-blue. I remember cdubb said that happened to her too after this surgery.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 20, 2010, 02:41:58 AM
Annie,
I hope the ice compression machine you are getting is the Gameready.  I had it and LOVED it!  It provided more relief than the narcotics at times.  The wrap covered a huge area.  Be careful with the time you use it though because I did get some red/blotchy areas that I can only assume to be related to the machine because they were only in the area of the wrap and the areas where the brace over the wrap created the most pressure.  They are slowly resolving, but still noticable.  I went to using just the wrap without the brace and kept it at 60 mintues.  The spots appeared when I went to 75 minutes.  It was really a blessing at times...even though my insurance didn't cover rental and I was paying $25/day for it!! I actually still have it, but don't use it near as often now. I called for pick up and they stopped billing, but just haven't come to get it yet.  Had I known they would have taken a week to get it, I would have called a week earlier, but then they would have been out same day!

Good luck making it through the weekend! I hope that you can avoid an ER trip.  Everybody responds to this surgery so differently and perhaps all the scar tissue they cleaned up really made it a more traumatic surgery, as well as bleeding into the joint. I think the bleeding is the biggest issue on why you are having pain beyond what I had.  Not that it didn't hurt because it did, but it was totally manageable at home no femoral block and being discharged very quickly post op (somewhat ridiculously early post op when I read other people's accounts- I was in the car 60 minutes after waking up).   Maybe that's why the nurse I had called me her Rockstar patient! 

As for the scar...8 inches does seem a bit excessive?  Must be the scar tissue issue again because the TT in and of itself doesn't carry that large of an incision.  Mine is about 7-8 cm and larger than a standard TT because of the ACI, but I haven't actually measured it. That 's just what my op note states.  Maybe I'll grab a ruler tonight.  It's straight and right down the middle and is healing awesome, so I can't complain. By the time summer rollers around, I think it will be negligible.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 20, 2010, 06:53:57 AM
Annie,

Hope you feel better with the new pain meds and ice machine.

As fir the showers I'm only just getting confortable taking them. I used toners a nap after one! Oh, how far I've come ;)

The incision does seem a bit excessive but if you had scar tissue removal it could be warranted.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 20, 2010, 03:00:29 PM
Woke up this morning feeling a bit like hammer dog poo! Well actually, I feel like my bone was cut, moved, and screwed into a new position....wait I think I know why I feel that way  ::)

Actually, I woke at around 3:30, and knew I should take my pain meds, but fell back asleep, so when I got up a few hours later, I was really feeling bad. I took my meds, have my ice machine going (Donjoy), and it is taking the edge off. The sun is shining so bright here today, and I so desperately want to go to the mall and do a little shopping, but that is not going to happen in any way, shape, or form....bummer!

Yes, my incision seems a bit long, especially considering my OS does a lot of MIS, and is supposed to be a leader in that aspect of surgical protocol. If my incision is long, I have to think he needed to do that, since it is not his norm. My incision runs over my patella, but is a bit lateral (not quite centered). He was going to try to access an old scar, but he felt it was too lateral, so he just made an incision is a slightly different spot. I should have a bit more on the specifics of everything he did on Tuesday when I see him. However, my appt is not until 5:00, so I will likely not get home from his office until around 7:30-8:00 p.m. Hopefully, I will come home with a good volume of the blood aspirated, and a bit of pressure relief.

I am experiencing blood rushes when I stand, and they are very, very painful. I try to put my leg down slowly, in increments, and let it get used to the new position before standing, but it still gives me some significant pain not matter what I do to try to minimize the pain.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 20, 2010, 05:40:35 PM
Yeah, the blood rushes sucked. I stopped having them about 1.5 weeks after the surgery, but it was always a pain in the butt when I went to go pee or something. I dreaded it.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 20, 2010, 06:49:15 PM
Hi Duckie,

I understand your dread with the blood rushes. I have found myself sitting for too long when I need to go to the bathroom, trying to avoid having to get up. By the time I get up to go, it becomes urgent, but I cannot rush to the bathroom and risk falling. Sometimes I think my bladder will burst by the time I brave getting up and facing the blood rush.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 21, 2010, 12:39:39 AM
Wow! I feel really lucky that I didn't too terrible blood rushes.  I did experience them, but not until about 4-5 days out (odd I know) and then they just felt like a lot of pressure.  Did take my breath away a few times, but not to the severity you two describe.  I still mildly get them, but very mild.  Although, I'm so distracted with my ankle now that maybe I just don't notice them as much.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 21, 2010, 05:11:12 AM
Yeah, the blood rushes are very painful.  I had them pretty bad but they seem to be getting a little better now after almost two weeks post op.  I always dread that first time out of bed in the morning.  And the problem is you are trying to hurry so you don't pee your pants and it is a little hard to hold it when you are concentrating on crutching.  I have had some close calls, lol.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 21, 2010, 05:50:50 AM
The blood rushes were not bad with this surgery.  However, with the scope in June, the blood rushes were awful, and they lasted for weeks.  I tried to get up in stages and slowly, but it still took my breath away.  Almost cried more than a few times.  No one could figure out why they were so bad and lasted so long.  Needless to say, I was terrified the same thing would happen with the TTT.  Very grateful to be so pain free this time. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 21, 2010, 04:08:46 PM
Well, I went to bed really early last night, and hoped to wake up with some significant improvement in my symptoms today, but it was not to be. I find that I have been more tired since the surgery, but I suppose that is a normal part of the healing process. I woke up to a lot of pain, as I did not get up in the night to take my meds like I should have. It is difficult for me to sleep right now, even though I feel exhausted, so when I am finally asleep, I just cannot fathom setting the alarm to wake myself up for medicine. I am afraid if I do this, I will not get back to sleep. When I woke up this morning, the pain was pretty awful, and I immediately hobbled to the bathroom, then the couch. My hubby had my ice and pain meds waiting, and was getting the coffee brewed. Once I numbed the leg with ice, and gave my meds about 30 minutes, it took the edge off quite a bit, which was a blessing.

My sister calls everyday to see how I am doing. When I tell her how painful this is, she just says "you knew it would be painful". I guess she does not realize that is not a comfort. A person also knows it would be painful to get hit in the head with a hammer, but if it happens, it is still painful. I do not think a person can really imagine how it feels to go through a bone-cutting surgery, and really do not understand how painful this really is.

I am tired of sitting on my butt, bored, and wishing I was out and about enjoying life. I mean, this knee has had me off work for just over a year now, and me and the recliner have become too close of friends. I have stockpiled so many hours of sitting over the past year that I feel when this knee is healed, I may spend the rest of the my life standing and walking, just to make up for lost time.

Yes, frustration is setting in a bit, but I will get my head back in the game.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 21, 2010, 04:28:06 PM
Annie:
I am not a good sleeper either but I have found it a must to wake up in the middle of the night to take meds.  I ususally can get right back to sleep.  It is just not worth it to try to sleep thru the night and wake up to that pain. If you let the pain meds completely leave your system it takes too long for relief when you do take them.
I know that the boredom and frustration can get you down but it will get better.  I am two weeks out from my surgery tomrorrow and once you start feeling better in general you can have little outings and it really lifts your spirits.
Hang in there.  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 21, 2010, 09:06:15 PM
Thanks for the support Melissa; I truly appreciate it.

I have noticed that since my surgery, I have been craving, and eating, iron-rich foods. While in the hospital, they were giving me iron supplements, but they are terrible on my stomach. I have obviously bled like crazy, and my knee is blown up with blood, so I will just roll with it, and assume my body knows what it needs.

Does anyone else ever do this? I typically crave the foods that contain something my body is in need of, but I am really craving iron, Vitamin A, and Vitamin C foods right now.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 21, 2010, 11:25:07 PM
Hang in there Annie! I'm still struggling with feeling so dependant and and overwhelmed with everything at times.  The fact my right knee isn't really too much better doesn't bode too well for the spirit either knowing that I will more than likely need to do this again...gotta see how the left ACI/AMZ takes first before I know what to do with the right.  I may ask more questions about other, newer technologies like DeNova next time for the cartilage defect...still won't get me out of the AMZ (TT) part of the procedure though.  I tack that on with some other stressers, like when I return to work, and the fact when I return, I'm heading into a promotion as a supervisor, as well as a personal issue I was just notified of on Monday...get's a little hard to breathe if I think about it all at once. So, I refocus back to getting my left knee well enough to return to work and then I'll tackle the new job when I'm back and I can't do anything for the right for a while anyway...as for the other issue...well...time will play out what happens there and most is out of my control. I'll e-mail you on tha that later Annie..don't think I've mentioned it to you in our e-mails.  I just am so thankful that I have a wonderful husband supporting me though all of this! 

As for the cravings...haven't really had them, but didn't really when I was pregnant, but I'd say roll with it and eat what your body wants!  Go for some spinach!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 22, 2010, 07:00:03 AM
Annie, it's perfectly normal to be tired after surgery. For weeks I had to take a nap to get through the day I notice have no endurance anymore. I'm almost 7 weeks post op and couldn't walk 4 blocks and up 3 flights or stairs without needing a breather! This from a girl that would walk 45 blocks in NYC without even blinking!

As for cravings I found I was craving milk, ice cream, and othe calcium rich foods. But nothing too bad. I think I just wanted ice cream to make me feel better!

I swore to myself and to anyone that will listen that I will be taking up biking as my new "sport" as soon as I get the go ahead from my OS. I've been told I can't run post-op and that I can't play vollyball or softball (my two sports) due to high impact on my knee and likelihood of dislocations (I play cather in softball). I want to take up spinning and then invest in a bike this summer so I can start training. Good for my quads!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 22, 2010, 03:19:31 PM
Hang in there Annie! I'm still struggling with feeling so dependant and and overwhelmed with everything at times.† The fact my right knee isn't really too much better doesn't bode too well for the spirit either knowing that I will more than likely need to do this again...gotta see how the left ACI/AMZ takes first before I know what to do with the right.† I may ask more questions about other, newer technologies like DeNova next time for the cartilage defect...still won't get me out of the AMZ (TT) part of the procedure though.† I tack that on with some other stressers, like when I return to work, and the fact when I return, I'm heading into a promotion as a supervisor, as well as a personal issue I was just notified of on Monday...get's a little hard to breathe if I think about it all at once. So, I refocus back to getting my left knee well enough to return to work and then I'll tackle the new job when I'm back and I can't do anything for the right for a while anyway...as for the other issue...well...time will play out what happens there and most is out of my control. I'll e-mail you on tha that later Annie..don't think I've mentioned it to you in our e-mails.† I just am so thankful that I have a wonderful husband supporting me though all of this!†

As for the cravings...haven't really had them, but didn't really when I was pregnant, but I'd say roll with it and eat what your body wants!† Go for some spinach!

Annie: Hi cdubb,

Yes, definitely shoot me an email, and let me know what is going on. I hope I can offer you the same support you have been kind enough to extend to me.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 22, 2010, 03:24:14 PM
Annie, it's perfectly normal to be tired after surgery. For weeks I had to take a nap to get through the day I notice have no endurance anymore. I'm almost 7 weeks post op and couldn't walk 4 blocks and up 3 flights or stairs without needing a breather! This from a girl that would walk 45 blocks in NYC without even blinking!

As for cravings I found I was craving milk, ice cream, and othe calcium rich foods. But nothing too bad. I think I just wanted ice cream to make me feel better!

I swore to myself and to anyone that will listen that I will be taking up biking as my new "sport" as soon as I get the go ahead from my OS. I've been told I can't run post-op and that I can't play vollyball or softball (my two sports) due to high impact on my knee and likelihood of dislocations (I play cather in softball). I want to take up spinning and then invest in a bike this summer so I can start training. Good for my quads!

Annie: Hi Duckie,

I am so sorry you have to give up things you love to do (I guess we all have to some extent). My OS has not yet laid out my long-term limitations. However, he was very up front in telling me that I will most certainly need a joint replacement in the future, but we are hoping the TTO will hold that off for a few years. My OS did tell me that I could go through the TTO and find that it has not offered enough pain relief, and I will need a TKR sooner, rather than later.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 22, 2010, 07:30:56 PM
I took up knitting before my surgery so I would have something to do.  Between knitting, reading, and Facebook, I managed to keep myself entertained.  Yes, I was thrilled when I was able to get up and do more

I am always ravenous after a PT session.  My OS gives me grief about my weight.  After surgery, he recommended a high protein, high fat, low carb diet.  It hasn't been hard for me to follow those orders.  I have been craving meat and cheese, preferably together, as in a huge bacon cheeseburger. 

A few weeks ago, I attended a meeting where they served huge steaks... big, thick slabs of filet mignon wrapped in bacon.  I was seated at a table with only men.  I was the only who finished the steak.... and I desperately wanted everyone's leftovers, but it would have been a little rude to ask strangers to pass their plates over to me.  I was also the only who finished the dessert.  The guy next me must have thought I was starving.  He didn't touch his dessert, and discreetly pushed it over to me with a big smile. I finished that one too. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 22, 2010, 11:48:27 PM
When I went to my Dr. in late Sept. to get the ball rolling on my second ACI surgery, my Dr. actually asked me if I was as skinny as I could get??  WTH!!!  I looked at the nurse who was in the room and asked her if he asks everyone this and she laughed and told the Dr. that no woman is as skinny as she can be.  That is not something you ask a woman.  He said don't get me wrong, you are still in good shape but every pound you can take off puts less pressure on your knees.  Duh!  I know that but it is not exactly easy to lose weight.  Who knows what my weight is going to do now that I sit around all day and do practically nothing. :(
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 23, 2010, 12:48:54 AM
Ok, I might get kicked off the list, but......

I lost weight after my surgery... almost 10% of my body weight in a week.  I was eating, but perhaps not as much as usual.  I hated to ask people to fetch snacks for me every couple hours.  We set up a stash of snacks next to my bed, but it wasn't the same.  My surgeon wanted me to gain weight before the surgery because he knew how many calories I would burn during the healing process.  When I woke up in recovery, I asked for food.  They said no.  :(  I sent my husband to pick up food so I could eat as soon as I got to my room.  My appetite has definitely increased since the surgery... and that is pretty scary considering how much I ate prior to the surgery.  I had dinner about an hour and a half ago, already thinking about a snack....

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 23, 2010, 03:18:17 AM
Mermaids,
I am pretty sure I lost weight since my surgery too...but really don't know because we only have a digital scale and since I am not yet permitted 50% weight bearing, I can't stand on it to get a reading without getting and error message.  Apparently our cheap scale from Target requires even weight distrubution to give a reading.  My appetite is just a bit depressed since surgery and even when I think I want something, I eat a couple bites and get full.  When I'm home alone, I also don't don't want to bother getting up and dealing with the hassle of getting a snack or lunch.  Today, I had a handful of dried Cracklin Oat Bran as my lunch and my breakfast was coffe....didn't even think about it until hubby was cooking dinner and the basil smell wafted out from the kitchen as he was food processing the basil for the pesto and my stomach growled...even then, I only ate about 1/3 of what I normally would. I'm not complaining though... while I am by no means overweight at 5'11" and 155....there's always extra around my middle I could lose...
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 23, 2010, 04:18:18 AM
I have no idea if I have gained weight yet because I am the same way, can't really manuever myself onto the scale to get a good reading.  I don't feel like I have gained because I am the same way as you Mermaids.  I am up here in my bedroom and the kitchen is downstairs so there definitely isn't any quick runs to the kitchen for a snack.  My husband had some baggies filled with snacks at first when I was getting sick at my stomach and couldn't eat meals but those have gone away and he hasn't filled them back up yet. lol.  So I know I am eating less just worried about the lack of activity.  I have discovered that I like vanilla frozen yogurt.  My daughter had a birthday right before my surgery and my Mom can't have dairy and we were getting an ice cream cake.  So I bought her some frozen yogurt to eat and when my stomach was upset from the pain meds I had some.  Now I feel myself craving it every night.  ;)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 23, 2010, 02:05:25 PM
He Everyone,

I am very tall (6'1"), and very thin, so I really do not want to lose any more weight. My mom and husband make sure I eat often, almost too often. I do not typically eat breakfast, but mom is here every morning to fix me "a little something to eat", and I appreciate her doing that, so I eat it.

As an update to my recovery, last night around 6:30 p.m., I got up to use my CPM, and noticed that even the brace was hurting my knee and tibia. I crutched into the bedroom, and began my CPM session. The pain was so bad, I actually began to cry a little, and had to reduce the flexion a bit to tolerate it. I was WBAT, and had been able to put slight weight on my leg, but now I cannot even put light weight on my leg. In addition, the back of my knee is so painful, I can hardly stand to use the CPM, since it pushes on the back of my knee. I was hoping it would improve, but when I woke this morning, it is the same way. I just do not understand what is happening, and am a bit worried. I have my first post-op late this afternoon, and pray everything is ok. Some of the bruising is fading, but the back of my knee is still black with bruising? Very strange and worrisome.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on November 23, 2010, 03:45:02 PM
Annie, I'm really sorry to hear you are in pain and worse yet worried about it, but I don't blame you. I too had a rough first few weeks, and WB made the pain unbearable, so I can empathize. Where are you feeling the intense pain? Did you by chance have a femoral nerve block? I did and as I have only just found out (at 11 wks post op) all my intense post op pain (both in my thigh and calf) was due to the femoral nerve being injured by the block at surgery. I pray all is ok, do post an update about how you go with the OS appt when you are feeling up to it.
Kat xx

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 23, 2010, 04:08:08 PM
I'm hoping everything is okay too Annie.  It does seem strange to regress with WB and struggle w/ the CPM.  I hope the Dr. tells you that it is just part of the normal healing process and due to your already bleeding into the joint vs. a new problem.  I'm still only permitted heel/toe touch WB until 4 weeks, but that is my docs protocol for this.   X-rays today should sort out the position of the bone and see if everything is okay there.    I wouldn't worry about the bruising in and of itself though, as at my 9 day post op I was told that even though my bruising was significant, it could still get even worse than where it was at (it really didn't though).  The dark blue bruise at the back of my knee is just now beginning to fade at almost 3 weeks post op and new bruising appeared on my ankle in the past few days, so I'm taking that as  good sign the ankle is maybe improving and working through it's recent issues.   
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 23, 2010, 04:54:12 PM
Annie, I'm really sorry to hear you are in pain and worse yet worried about it, but I don't blame you. I too had a rough first few weeks, and WB made the pain unbearable, so I can empathize. Where are you feeling the intense pain? Did you by chance have a femoral nerve block? I did and as I have only just found out (at 11 wks post op) all my intense post op pain (both in my thigh and calf) was due to the femoral nerve being injured by the block at surgery. I pray all is ok, do post an update about how you go with the OS appt when you are feeling up to it.
Kat xx



Hi Kat,

The worst of the pain is below the knee, runs up the medial side, farther down my shin, and behind my knee (I know it is a few different areas). I did not have a femoral nerve block, nor did I have an epidural. My OS injected a "cocktail" into the surgical areas, that made them numb for the first 12 or so hours, but no block was done. I know the area below my knee is the area of the osteotomy, and it is bulged out a bit, which my OS already told me it would be. I really hope I am healing ok, as I wanted to be an overachiever in that area of my recovery, but I guess my body will have its own plans on that point. I have an hour ride to the OS's office today, and am a little worried about sitting with my leg down that long. In addition, my OS is only in the office one day a week (pretty common system for surgeons), and he typically is running behind. It is not unusual to wait 2-2 1/2 hours before actually seeing him, and I dread sitting in the waiting room that long. If it gets too bad, I think I will ask the receptionist if they will allow me to sit in a treatment room with my leg elevated while awaiting the doctor. I do not want to cut in front of anyone, I just want to be a bit more comfortable. I would call to see how behind he is before heading down there, but I need x-rays, and his x-ray tech will leave before I see him, so I want to be sure to get them done before he leaves for the day, so I need to be there at my scheduled time (which is 5:00 pm). As it is, I am being worked in at the end of the day, especially since the office actually closes at 4:30 pm. I was not supposed to have my first follow-up until two weeks post-op, but when they could see I bled into the joint, it was moved ahead, and I had to be worked in.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 23, 2010, 05:08:14 PM
Annie,
Hope the travel to the docs goes smoothly, as well as the visit itself.  I'm sure that they'll be able to get you into a room to make you more comfortable...and you know what...they should also try and get you in and out.  Most of the other people are probably not 1 week post op of an ostetomy surgery who bled into their joint and had an hour drive there and another hour home.    At my post op, I was exhausted crutching around.  I had to go to the main downtown office and the parking garage is huge to navigate just go get into the building.  They the x-ray tech called me back, then back out to the main waiting room, then the ortho tech called me back and luckily, they just left me there and his PA came in after that.  My next visit, I'm going to the smaller office in the suburbs.

As for the location of your pain, that is where my pain was located also, but not to the severity you describe. It also went down into the ankle and continues there.  Reduced significantly by this point.  So, hopefully, the the OS tells you the pain normal but just increased in severity due to the bleeding into the joint.  At 2 weeks out, you hopefully, will be feeling much better.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 24, 2010, 01:06:13 AM
When my husband had knee surgery many years ago, it was with a different surgeon, who was dreadfully slow w/ appointments.  The waiting room was always crowded with no where to prop up a leg.  I brought in a small rolling suitcase with pillows inside.  When my husband sat down, I pulled out the pillows and organized them on top of the suitcase so he could elevate his leg.  At first, people looked at me oddly, but after they had been sitting there for two hours with throbbing knees and feet, our suitcase and pillow arrangement looked genius. 

I have never understood why ortho waiting rooms do not have something for people to prop a leg on.  Fortunately, my OS runs a tight schedule and I seldom wait more than a few minutes.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 24, 2010, 05:05:45 AM
Ugh, I can't imagine waiting for that long to see my surgeon! The longest wait I've had is 45 minutes and that was the day before he left for vacation for a week. Definitely understandable. He also told me he took on a few emergency cases that would have had to wait a week to see him...so I forgave him for it! I think I waited 20-30 minutes today after my x-ray.

I've been having some pain in the medial side of my knee, down a bit below my kneecap. It's definitely tender there. Mostly, it's my calf. But I found out that a bakers cyst is causing the stabbing pain in the center of my calf when I flex my muscles and stand.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 24, 2010, 07:25:12 PM
Well, yesterday was my 1-week post op, and I must say, my OS was surprisingly on schedule. By the time we got there (1 hr car ride), my leg hurt so bad, I was sweating. I had x-rays done, and his PA came in to get me started. She checked things over, and said the blood still felt too thick to aspirate (I was terribly upset by this), but my OS would make the final call. She said due to the holidays, she wanted to ensure I would not run out of meds, so she would write me scripts for both my pain med and anti-inflammatory with refills. My OS came in just a minute later and said that everything I am experiencing is to be expected 1-week out from surgery. My quad has totally shut down, but he said it will come back. He wants me only doing patella mobes, quad sets, and using my CPM...period. He said this will be a long, hard recovery, and we are in no hurry to get things going again. He said to think of this as if I had broken my leg. When a bone is broken, patients are typically put in a full cast, but with TTO surgery, we are put in a brace so we can sneak out of the brace to work on gentle motion and quad-strengthening exercises. Unlike a cast, we have the opportunity to ensure the quad does not waste away, and we do not stiffen up for months. However, the bone is still broken, and can be easily damaged if I were to slip, fall, twist, or torque the knee. If this happens, I will likely be back in the OR for more surgery.

Unfortunately, his PA was right, the blood is far to thick to aspirate, so he will try at my appt next week (Tuesday). His TTO patients typically do not even follow-up 1-week post op (his standard protocol is 2-weeks), but since my knee has been such a force-of-nature and puzzling for the past year, he is keeping a very close eye on things.

My x-rays were crazy! The screws go all the way through the bone, and out the back. I asked him if he used screws that were too big, and he laughed and said they have to countersink the screws. He said to think of the bone as a tube. If the screw ended inside the bone, it has the potential to move up and down. If it goes all the way through, and out the other side, it will not be able to move.

He said the bruise pattern down my leg (stopping mid calf) and at the back of my knee tells them a lot. He said the area where the bone wedge was removed continues to seep blood for a while. If I was sitting with my leg down, like they said not to do, the bruise would move down my leg, into my foot, and heel. He laughed and told me that he can tell if the patient is doing what they are supposed to be doing in terms of elevation by the bruise pattern (I am doing it right, so he was happy about that).

I told him this has been the most painful experience of my life, and he agreed. He said it is far more painful than TKR, and recovery is longer.

Oh, when I was ready to leave the office, his assistant handed me the prescriptions, and my surgical pics, and I hobbled to the car with my mom and husband and went home. The ride home was awful, and I was glad to finally get home with ice and my leg up.

I never looked at my prescriptions yesterday, but when I saw them today, I was a bit puzzled. The PA did not put a quantity on my pain med, but she wrote instead "1 to 2 pills every 4-6 hours as needed for pain, 60 day supply, 1-refill". I was a bit puzzled, and wondered how the pharmacy would deal with this when no quantity was noted (I think they must include a quantity)?  I do not need to fill either script until probably Monday, but this is the oddest script I have ever seen. I called the office and spoke with the PA who wrote it, and she said "Oh my goodness! I wrote your script wrong!" She is going to call it in for me to pick up on Monday (per my request) instead, and told me to scrap what she wrote yesterday (glad I called). Funny how nobody caught this yesterday. His PA wrote it, his assistant gave it to him to sign, he signed it, and they handed it to me. I guess none of us really looked carefully at the script.

Anyway, I still have a knee full of blood that is thick as molasses, and have to wait until next Tuesday to get it drained. I will have my evaluation with PT on Friday morning, and go from there. My OS warned that my PT not be overzealous or aggressive in any way with my knee. I love my PT, and she is very careful, and follows OS directions to a T. If she ever has a question, she picks up the phone and calls his office right away...she is awesome.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 25, 2010, 05:51:16 AM
Annie,
Glad you had an update.  I've been thinking about you today and meant to sent an e-mail, but I actually have been busy and got out to a movie!  Yes...a movie at 3 weeks post op!  Then went to a wine bar for a glass of wine too...exhausted when we got home, but it was good to be out.

While I'm sorry to hear that they couldn't aspirate any blood yet, I'm glad to hear that everything is to be expected.   Interesting about the bruising pattern and they Dr. being able to tell if the patients are doing what they are supposed to.  Wonder if mine was the right pattern or not.  Mine went into the foot and heel?  I iced and elevated a lot and did what I was supposed to when I was home, but on days 2 and 3 post op, I had the unfortunate anesthesia complication of urinary retention and had to be out and about crutching around more than I would have liked to to go to urgent care and to the Dr. the next day for cath removal.  Wonder if that led to more blood tracking down my leg....and maybe the inflammation of the periosteum I got???

My screws go all the way through the bone also and were countersunk more than normal because I'm a "slender female"...and that's a quote my Dr...not my own words...  I thought it was crazy looking at the x-rays too. 

Hang in there!  You may not notice huge changes day to day, but I bet week to week, you'll slowly get there!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 25, 2010, 02:24:20 PM
Hi Annie
Sorry they didn't asprirate the blood out of your knee. Hopefully next OS visit.
Hang in there.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 26, 2010, 04:23:04 AM
Annie,
Glad that your Dr. said everything you are feeling is expected, although I am sure that doesn't really make you feel any better.  Was hoping for your comfort that they would be able to aspirate the blood for you.  Although I had fluid aspirated from my knee at a little over a week from surgery and it was not fun at all.  Don't want to scare you but the needle is huge and I actually have a scar right now where they went in.  That is defintely not something I want to happen again.  But for you the discomfort will be worth it in the long run.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 26, 2010, 05:50:33 AM
I'm sure a post op aspiration is more painful than a non post op, just a large, swollen knee aspiration.  I've had that done when my knee just randomly swelled and wouldn't go down.  The needle was huge and the Dr. was surprised I actually wanted to watch, but I'm kinda weird that way. I get more nervous if I can't see what is going on.  It certainly wasn't comfortable, but I wouldn't describe it as painful.  Now....and a recent post op knee with a lot of thicker fluid...totally different situation!!   They did inject something to numb the knee before they aspirated it though, so if that wasn't done, then I don't know what it would have felt like.  It did get really sore that evening though.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on November 26, 2010, 06:27:24 AM
Oh Annie, sounds like you have had one rough week. I really hope you get on top of the pain. Its good to hear the OS says everything is ok, its just a downer they couldn't get rid of the extra blood. One would think that it would feel quite a bit better once that happens. I can relate to having to get through the exercise or in your case the CMP machine when you are dealing with an awful amount of pain. This is my case on a regular basis. I hope you start to feel better soon.   
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on November 26, 2010, 09:15:10 AM
Hi Annie

Just found this and put 2 + 2 together...I know I replied to some of your posts prior to having the TTO set up when you were wondering what would be next...and here you are the other side of the TTO and hopefully seeing this as the road to a way better functioning knee. I am sending my thoughts to you that you have a smooth recovery and that this yakky blood can be aspirated next week to help more healing. Clearly this is a long road but I have all fingers crossed it is what you need and will bring you a stronger knee.

Take care and just wanted to wish you well

Lottie x :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 26, 2010, 05:15:38 PM
Thanks everyone for the support; it really does mean the world to me.

I hope everyone had a good Thanksgiving holiday.

My husband got up this morning at 3 a.m. to hit some doorbuster sales (silly man), and he said he would never, ever do it again. Our local target was lined up for several blocks, so he never made it there. However, he did hit some other stores and got a little holiday shopping accomplished.

I had my first PT this morning at 10 a.m., and when I came out, my husband was asleep in the waiting room, slightly snoring! I was horrified, and we were all laughing at him.

PT was horrible, as expected, and I now feel like I am immediately post-op again. She did very little, just some patella mobes, quad sets, lymph drainage, and measured my ROM. I am currently at 3 with extension, and 42 flexion....yuk! I showered before PT, so I was already toast when I got there, and am now hunkered down for the rest of the day.

It is freezing cold here in Michigan today, and I saw some snow fly on the way to PT! I am not ready for the cold and slippery walking for sure.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 26, 2010, 05:24:20 PM
Annie,
Glad that your Dr. said everything you are feeling is expected, although I am sure that doesn't really make you feel any better.† Was hoping for your comfort that they would be able to aspirate the blood for you.† Although I had fluid aspirated from my knee at a little over a week from surgery and it was not fun at all.† Don't want to scare you but the needle is huge and I actually have a scar right now where they went in.† That is defintely not something I want to happen again.† But for you the discomfort will be worth it in the long run.

Annie: Hi Melissa,

I have had fluid and blood aspirated from my knee 16 times in the past year, many times a week or so post-op, and it stinks. My OS sprays the area with this stuff that freezes it before putting in the small needle with the numbing agent, so it is tolerable. He then gives the numbing medicine a few minutes to cook before putting in the big honking needle for aspiration. After aspiration, my knee is actually worse for a few days, but should offer some relief in the long run. I think the worst was after my lateral release in April, when I ended up having surgery a week later since the blood was so thick, and my joint was stretched to the point of bursting. They tried to aspirate first, and I could not tolerate the pain at all. In the end, they could only get a tiny little bit out, and it was thick and jelly-like. They sent me straight to the ER for emergency surgery to shave out the hematoma. It took him 2 1/2 hours in surgery to get all the hematoma tissue out of my knee, but when I woke up from surgery, I finally had relief from the pain and horrendous pressure the hematoma was causing.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 26, 2010, 06:48:43 PM
Hi Annie
Sorry the PT sucked the strength out of you but I found the first few tend to do that.
Hope the drainage next week goes well.
Healing thoughts coming your way.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on November 26, 2010, 06:50:54 PM
Annie,
That sounds positively horrific.  At least you were sedated.  I am a big baby when it comes to needles. Just reading about the needles makes me queasy. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 26, 2010, 07:59:47 PM
Annie:
Really feel bad for you.  I went through that once and never want to again.  I also had the smaller needle with numbing medicine, but it didn't seem to really help.  Maybe he didn't wait long enough for it to help.
Anyway, you are a strong woman and sending hugs your way that you will be out of all this pain soon.

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 26, 2010, 11:05:03 PM
Annie,
That sounds positively horrific.† At least you were sedated.† I am a big baby when it comes to needles. Just reading about the needles makes me queasy.†

Ann: Mermaids,

I was not sedated when they attempted the aspiration when I had the hematoma. I went to his office, where the aspiration was attempted. Once he could see that it was not going to come out (as he suspected), I was sent immediately to the hospital to be admitted. I had nibbled on a piece of toast that morning, so they would not operate until the following morning, but the pain was so bad, I could not even think straight, so they admitted me right away, and scheduled me for surgery first thing the following morning. I ended up having to stay in the hospital for a few days with a drain in my knee. When I was told that I was collecting blood again in my joint after my TTO, I was alarmed because of the previous experience. However, they told me it is pretty common to bleed badly during TTO, so I relaxed a bit. I do want it drained out for pain relief though, and because blood in the joint can easily fester into a big infection.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 27, 2010, 06:49:22 PM
Afternoon Annie,
Hope you are having an ok day.
Take Care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 27, 2010, 10:32:25 PM
Thanks RKnees4. I woke up this morning with a little less pain, but then I used my CPM, did my quad sets, and heel slides, and the pain lit off again. I can see I have a long road ahead of me with rehabbing this knee, so I will try to be a little more patient. The blood rushes have improved though, and I am thankful for that. They still catch me from time to time, but not as bad as last week. My heel slides are a bit pathetic right now, but my quad seems to be waking up a bit, so that is progress  :)

Something happened with my CPM today, and when I started my session, it just kept going and going. I jumped to hit the Stop button, when it realized it was not stopping, and it was going all the way to 90 degrees? My ROM is only in the low 40's right now, and I did not turn up the machine to 90 degrees, so  I am not sure what happened. I almost undid the straps and rolled off the machine, but when I stopped it, the machine decreased back to 42 degrees, where I had it set. Now I am a little leery of the thing, since I have used a CPM after several different procedures, and nothing like that has ever happened before. That is a good way to cause damage, and I still do not know what in the heck happened? If it happens again, I am going to have to call the rental company to come and swap it out for a different machine. Just before it happened, the controls flashed a message that the motor was disengaged? Makes me wonder if something is up with the unit. I do not need a CPM damaging my knee; I could do that all on my own without the help of technology blunders.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 27, 2010, 11:22:15 PM
Yikes Annie! I might call the CPM company just to report what happened and get a new machine before it happens again.  You don't want the CPM to push you beyond where it's safe to go.  Even though I'm allowed to dangle to 90 passively a couple times/day, I have not been permitted to go beyond 45 in the CPM, which is where I've been since day 2 post op...kind of boring to not be permitted to progress, but I have to protect the ACI graft! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 28, 2010, 03:48:54 AM
Wow Annie,
That is scary to think about!! I am with Courtney I think you should call the company and tell them what happened and be assured it won't happen again or have them swap out the machine.  Just thinking about that makes me cringe!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 28, 2010, 05:03:41 AM
Hi Annie
I bet that was totally scary. I don't know if I would trust it to use it again.
Hang in there the quads will wakeup and doas they are told. Just keep at it.
I was fortunate with my first TTT mine never shut down. I was rather surprised actually.
The healing on this is slow hang in there it will get better.  Remember this is a long haul surgery.
But as time progresses you will get stronger.
Take Care Annie,
Have a good night.
Actually it is 12.00a.m. where I am in Canada.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 28, 2010, 06:05:56 PM
Hi All,

Thanks for your thoughts on the CPM. Machines and technology are both a blessing and a curse at times.

I must say, I am feeling a little sorry for myself this morning. I am having a regular pity-party. Seems like everyone is getting ready for the holidays, shopping, putting up decorations, and scurrying about, while I am stuck here protecting my newly cut bone.  :(

I will get over my self-pity and get on with it, but I am just having  bad morning.

One thing I noticed this morning, and I was wondering if anyone else has experienced this: I was working on my heel slides, and when I get to a certain point (not very far yet), something bulges out just below my patella, in that normally soft area of the knee (not at the TTO site). It is large, hard, and I think it is part of the reason why my knee stops at that point. It really bulges out....a lot. I do not know if it is just the fluid in my knee, but it seems way too hard for that (trust me, I have had fluid 17 times now). A little concerning, but I guess my PT and OS will look at it Tuesday. I have also noticed my foot turns a bit purple when I get up and crutch around. I think the swelling is just causing a bit of a lag in circulation, but I will keep an eye on it.

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 28, 2010, 06:18:44 PM
Hang in there Annie, we all have blue days and believe me I know exactly how you are feeling.  I woke up with pain in my knee pretty bad for the second morning in a row and was feeling very discouraged and sick of this whole thing.  It does not seem fair that life is going on for everyone else as usual and we are stuck with this knee nightmare.  But, I just try and focus on the big picture and how much better my life will be when this works and there will come a time when I won't even think about my knee anymore.  Won't that be nice??  Don't beat yourself up for having a pity party, we deserve one once in a while.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on November 28, 2010, 10:34:08 PM
Annie

Sorry you're having a blue day. Thats totally allowed though, it is horrible to see people charging around with no knee issues when you're in so much pain and feel so restricted. BUT this is going to get you back to a way better knee, but as you've said it isn't a quick recovery. Everyday though is a step forwards. I would definitely check the CPM machine out, it shouldn't be doing that. It will probably have an error code logged so they can check out what is going on, don't risk your rehab with a dodgy CPM!

Not sure on the hard bit, I guess you mean its kind of bulging where the fat pad is? Hopefully the appointment on Tuesday will shed some light. Take things steady,don't be afraid to vent on here - its what we're here for!

take care and sending hugs

Lottie xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 29, 2010, 01:31:17 AM
Evening Annie,
It is OK to have those stop the world and let me off days.
Last year I had the same problem at Christmas, freshly sliced and diced knee and no patience to sit and wach the world in high speed around me.
Totally a normal feeling. Hang in there, chin up!
Take Care Annie,
Healing vibes coming your way. :D
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 29, 2010, 04:41:54 AM
Thanks everyone for the support during my down day. The pain in the bone is really kicked up tonight, and I am having trouble sleeping, so I thought I would check in on the board.

Lottie: I wondered about the fat pad area myself. When my OS did the TTO, he scoped it first. He had just been in there six weeks prior, but he said there was extensive fibrosis tissue in the fat pad area that he extracted. I wonder if it is just a swelling response in that area. Cdubb also suggested possible bursitis, but I will show it to him on Tuesday, and see what he thinks. I tend to scar very easily, quickly, and severely, and it is a vicious circle of cleaning it out, and it building back up. Typically, by three weeks post-op, the scar tissue takes hold again, and my joint mobility is severely limited in response to the load of scar tissue. My OS likened removing it to scraping the inside of a melon with a razor blade, which is also why I keep getting blood and fluid in the joint after each scar tissue clean up.

I was working on my heel slides earlier, and got a sudden, sharp, then deep stabbing pain in the area of the TTO. Since then, I am getting that blood rush feeling again when I attempt to stand up. I hope I did not push it too much, and damaged something inside. The blood rushes had significantly subsided until I did that earlier today. Also, my laptop crashed earlier today, and my son-in-law was here for hours getting me back online. In the meantime, I had to use our desktop PC to get a little homework accomplished, but 5 minutes in, with my leg down at the computer, the bone pain was too severe, and I had to stop.

Thankfully, my laptop is back up, so I can elevate my leg while working on my class. I only have two more weeks and my MBA will be complete, but I cannot even consider having to work everyday without my leg elevated, so it was imperative that my laptop get fixed ASAP.

My mom is back to work tomorrow, so she won't be here all day to help me while my husband is working like she has been the past two weeks. My sister the next two weeks off, but I know she has things she wants to do while she is off, so I do not want her sitting here everyday to weight on me. She offered to help anyway she can, but she also followed it up with a long list of things she wants to do during her off time, so I do not think I will ask her to help.

My mom works just around the corner from my house, so she will be here each day during her lunch hour to make sure I am eating, and my dogs are taken outside. There are several steps to get to the back door to let my doggies outside, and I do not want to attempt them when nobody is home, just in case I fall down. That would really stink. I am not the most graceful person on the best of days, so I am not chancing it. In fact, my mom made me promise I would not even try, and I made the promise to her. It eases her mind a bit, so that is fine with me. I have MS, but I really do not have any symptoms right now. In fact, I have been in remission for a few years, but I do lose my balance from time to time.

I will check in tomorrow, and I hope everyone is doing well.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 29, 2010, 05:20:36 AM
Annie,
Definitely DO NOT beat yourself up for having a pity party...this is a long recovery and you've already been so much before with this knee and otherwise....it's only natural to feel blue when you see others scurriyng about, shopping, decorating when you get exhausted taking a shower and are so dependant on others and also in so much pain.   Even with my relatively uneventful recovery to date, I've broken down a few times out of frustration of my limitations and how much I'm relying on my husband for everything.  Plus narcotics mess with your head and make you more emotional than you may otherwise be...at least they do with me.  I was actually telling my husband today that the initial days post op for me weren't terribly difficult and painwise I managed much better than I thought, but it's now when I'm approaching 4 weeks out and am still at the same weight bearing, still crutching around, still having to spend 6 hours in a CPM, still unable to drive....that's what is so hard for me.  It's a long, slow process with lots of ups and downs.  So hang in there! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 29, 2010, 02:16:17 PM
Hello,

Well, it was two weeks ago today that I had my TTO. Last night, I finally got to sleep, on my back, and I must have flipped over, but my leg stayed straight. I was jolted out of my sleep, since the action caused me to twist my leg. When stuff like that happens, I am reminded that my leg is in fact broken. I got out of bed this morning, and the pain is pretty bad. However, it worsened yesterday, for some reason, so the twist was just salt-in-the-wound.

Tomorrow (Tuesday), I follow-up with my OS late in the afternoon, and I hope my op report is available. When I followed up last week, the transcription was not yet in, so I was only given some pics. The pics of the back of my patella made me hungry....crab meat and cotton candy anyone?

Keeping my fingers crossed that he can aspirate the blood and fluid from my knee tomorrow.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 29, 2010, 03:02:40 PM
Crab meat and cotton candy...that's exactly what mine is like too...although, since I had the ACI to repair the damange...hopefully, not anymore on the left.  Although the scope pics from my right looked like that too.

Fingers crossed that he can get some fluid out tomorrow.  Too bad there isn't something that they can inject into the joint to break up the fluid and allow it to be aspirated easier. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on November 29, 2010, 06:06:18 PM
Well, I can honestly say I have no desire to have crab meat OR cotton candy at the moment. Thanks, girls.

Annie, you're doing well for 2 weeks out. Don't get discouraged. You've got a long road in front of you and it can seem daunting at the best of times. We all have out moments! I promise. I'm still having some and I'm almost 2 months post-op.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 29, 2010, 09:41:30 PM
I do think I am doing well for being only 2 weeks out. I mentioned my OS's PA fumbling my scripts last week, when she did not put a quantity on them, but wrote "0 Quantity" "6-Month Supply". I called her on Wednesday, and she apologized, said she did not know what she was thinking, and said she would call them right in for me. A quantity must be placed on pain med scripts, so the script was not worth a hill-of-beans. As of 45 minutes ago, they were not called in (I think she got busy and forgot). I feel bad, but I went ahead and called the office again a few minutes ago, but I think I sounded frustrated with her in my message. My mom went to pick them up at my pharmacy twice over the past few days, but they were never called in. I still have enough to get me through tomorrow afternoon, but I definitely do not want to run out. I hate asking people to run errands for me in vain, so I will call the pharmacy before I send someone again, just to be sure they are there. Between that and the flower delivery guy today, I have had it.

When I was in the hospital, some of my co-workers tried to send me flowers, but I was discharged before they arrived. After I was home, one of my co-workers emailed me to see if I had received them, and I said I had not, but maybe they would bring them to my home. Four days later, the florist called to get my address, but I live an hour away, so they said they would wire the order to a florist closer to my home. A week and a half went by, still no flowers. My co-worker emailed about them again, and I told her I felt so bad, but maybe, at this point, it would be best if they got their money back from the florist. Today, I received a call from the florist delivery guy saying he tried to deliver them earlier today, but nobody was home. I told him I have been home all day, every day for 2 weeks (with the exception of one doctor appt, and one PT appt), so I knew that was not true. He came around a few minutes later, and come to find out, he was trying to deliver them to the bank repo house across the street....nobody has been home there for about 2 years :)

The flowers are really pretty.

What a day!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 29, 2010, 11:17:10 PM
Evening Annie
Hope the flowers brightened your day a little.
Nothing like running out of pain med when you really still need yhrm.
Been there bought that shirt.
Here's hoping they aspirate your knee.
Take care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 30, 2010, 01:24:41 PM
No worries RKnee's, my OS's PA called in my script yesterday, and has been filled, and picked up. With the long holiday weekend, I am sure they were very busy yesterday, but it all worked out. If only I had a crystal  ball, I would not worry about things so much.

I took a shower last night, which was a little easier. However, my knee absolutely doubled in size in the 10 minutes I was in there. It really does not surprise me at all though. Between the heat of the shower, not having my leg elevated while in there (I do have a shower chair), and the blood settling back into my joint when it is not elevated, it swelled terribly. By the time I got out, I crutched quickly to the living room, wrapped in a towel, and my husband was following me with my jammies, ice, and  my brace. Once I was dressed, braced, elevated, and packed in ice, it went down a bit. I thought it would be best to shower last night, instead of trying to shower, go to PT, and ride 2 hours round trip today to see my OS. I am trying to spread the misery around a little, so I do not stress the joint too much today.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 30, 2010, 01:44:08 PM
Morning Annie,
Glad to here you are all stocked and ready for just about anything.
What a good husband.  My 18 year old is my care taker.  When she finally leaves I will have to take care of myself I guess.
Hope all goes well.
Take care,
Healing rays heading your way.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on November 30, 2010, 05:15:05 PM
Annie,
Good luck at your OS visit!  Keeping my fingers crossed that they can get some of that nasty fluid build out of there and provide some relief of the swelling pressure! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on November 30, 2010, 05:34:57 PM
Annie

Good luck with the OS visit. Hoping you get some good news and some pain relief. Let us know how things went. Thinking of you

Lottie x :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 30, 2010, 10:16:32 PM
Hi Everyone,

Well, I received a call this morning from my OS's office, letting me know he had to take a family-emergency day off today, since his wife gave birth to their child early this morning. However, they asked if I minded seeing his PA today, which is fine with me. She is his surgical first assistant, and was in the OR during my TTO. They asked if I could come in at noon, rather than 4:00, so I did. She was able to drain out some blood and fluid, but I was disappointed in the smaller-than-anticipated amount. My tissue is very inflamed, so the aspiration was horribly painful. She kept having to pull back the needle, and push it in at different angles, to get to some of the pockets of blood. I turned pale, and was sweating bullets by the time she stopped. I was told to go straight home, pack it in ice for the rest of the day, and am on total rest for 48 hours. I am banned from PT and my CPM for 48 hours while the aspiration damage heals. The aspiration will cause additional swelling, and a bit of bleeding inside the joint, so I have to just take it easy.

The good news is that I am progressing, in terms of bone healing, as I should be at 2-weeks out. However, I have to go back in 2 weeks for another follow-up with my OS. Typically, his TTO patients follow up at 2-weeks, 8-weeks, 6 months, and then annually. However, because I had so many funky issues over the past year, he wants to watch my progress more closely (which is fine with me).

I am doing  ok, but aspirations post-op always cause a big bump in pain and swelling in the short term, so I am kind of whiny tonight (lucky for my hubby). My sister stayed with me until my husband got home from work, to make sure I was not up, moving around too much to get snacks, something to drink etc. I have a very loving family, and I really am a lucky person to have them in my life.

So that is my status tonight. Just gonna hang out, watch some TV, do a little homework, and chat with my hubby. He put some pot pie in the oven, so we are waiting for it to cook to have some dinner.

All my best to everyone.
Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on November 30, 2010, 10:33:36 PM
Hi Annie,
Glad they were able to get at least a little bit of the fluid out for you.  Should help you in the long run.  I know what you mean about the pain of the aspiration though.  When they aspirated mine it was the same, kept moving the needle around and in and out.  It was most uncomfortable.  They were able to get 35 ccs out of mine, what about you?
You take it easy now and let your knee rest some.

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on November 30, 2010, 10:38:56 PM
Hi Melissa,

She was only able to get about 20cc's out today, so they will likely try again in two weeks. It was still a little thick, so it is still hanging out. Seems like my aspirations typically run between 20-45 cc's, but the fluid just keeps coming back over and over. Hopefully, that will not be the case this time around. I am staying hopeful that the TTO will be successful, and my days of monthly aspirations will be behind me.

All my best,
Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on November 30, 2010, 11:15:51 PM
Evening Annie,
Hope it is feeling better in a couple days. :(
At least they were able to get some out.
Take Care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 01, 2010, 08:41:39 PM
Hi Everyone,

Not too much to report today. I have been suffering pretty bad since my aspiration yesterday, so I have been taking it easy, and icing often. I looked around this morning, and my house just seemed untidy, and I burst into tears. My sister called to check on me during my meltdown, and she zipped on over, and cleaned cleaned up my house. My hubby cleaned it on Saturday, but some chores have to be done practically every day, and I just wanted to jump up, grab the vacuum, and sweep the floor, but I can't. 

After my sister cleaned up, I needed to run to the pharmacy, and she took me. It seemed nice to get out of the house for 10 minutes, but by the time I was home, my knee and bone were throbbing terribly. The good news is that wild cherry M&M's are out for the holidays, and I got four big bags! That is considered part of the fruit group, isn't it? I think it is close enough  ;)

Hopefully, by tomorrow the pain from the aspiration will settle some, and I can move around a little bit more. My knee is stiffening up more by the day, even with the CPM, and I worry about scar tissue again. It seems like my ROM is worsening, rather than improving, a worrisome development.
r
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 01, 2010, 08:47:46 PM
Hey Annie
Hang in there girl,
Nothing like the messy house to make you upset.
That is the part that almost drove me nuts last time.
Absolutley wild cherry m&m's are a fruit group, especially if they give you a smile. ;)
Hope tomorrow is better for you.
Take care, Ice and elevate.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 01, 2010, 10:18:26 PM
Never had the cherry M&M's...but I've already gone through 2 bags of the mint M&M's!  Yum! 

Hang in there with the ROM.  It's not good that it's stiffening, but it's still too early to worry.  I stiffened up a bit last week, but I seem to be getting it back okay.  All you can do is control the things you can control, which is using your CPM as directed, doing your HEP, etc.  No use worrying over things you can't control...although...that is easier said than done....
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on December 02, 2010, 10:03:29 PM
At a time like this, cherry M & M's are definitely part of the fruit group.   :)  The psychological benefit of getting out of the house is worth a little extra discomfort.  You can't stay cooped up until it heals. 

A good friend convinced me to hire a cleaning service after my surgery.  They just hit the hot spots, kitchen & baths, because it would be insanely expensive to have them do the whole house.  Even just doing the kitchen & baths has been awesome!  My teenage boys can manage the rest decently, but they never got the kitchen & baths as clean as I like.  Once I got off crutches & out of the brace, my husband began questioning the continued use of the cleaning service.  I reminded him that even in the absence of physical apparatus, I am still healing... and will be for quite a while.  I cannot kneel, especially on a hard bathroom floor and I do not know how to properly clean a bathroom without kneeling down. 

The cleaning service took so much stress from me.  I hate not being able to do things for myself and I cannot sit while the house goes to pieces.  After the cleaning service leaves, I love seeing the sparkling counters and floors.  It really isn't an indulgence.  Without the service, I would have tried to do the cleaning myself and probably would have hurt myself. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on December 02, 2010, 10:10:14 PM
Mermaids, I absolutely feel you about the bathroom and the kitchen. I don't know how to clean a bathroom without squatting and kneeling...and I can't really do that right now. I'm doing my best though. Unfortunately, we don't have the funds for cleaning services. It would have been nice, though!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 03, 2010, 03:29:46 AM
Duckie
Even after being more than a year out from surgery it is hard because I still can't kneel on the post-op knee.
When I get the other knee done it is going to be impossible to do it.  Kind of ticks me off, but was warned about the possibility of not being able to kneel again.
Six of one half a dozen of another, sore knees or kneeling it is a trade off.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 03, 2010, 08:28:44 PM
Hi Everyone,

Sorry I have been MIA the past couple of days, but with less than 2-weeks remaining to finish my MBA, it is crunch time.

I had PT today, and since my OS has put strict constraints on what I can do right now, my physical therapist does not have many options just yet. He is only allowing assisted range-of-motion, patella mobes, and lymph drainage at this time, so my appt only took about 30 minutes. Hopefully, after my appt with my OS next week, he will lift some of the guidelines a bit, so I can make a bit more progress.

I tried to show off at PT today (stupid move), and show just how far I could push my knee to bend (stupid, stupid move), which is not far at all, but far enough to hurt myself. Now I am hunkered down with ice packs (smart move).

I will try to police myself a bit better in the future.

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 03, 2010, 10:12:55 PM
Annie,
Sorry about the overdue on the bend.
It is so hard to judge sometimes.
Goodluck with the MBA.
I am working on My HBa. I am one of those late in life students.
Just took me awhile to figure out what I wanted to take.
Take Care,
Just 2 weeks to go.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: duckie857 on December 05, 2010, 02:57:01 AM
Annie,

good luck finishing that MBA. Keep your mind on that :)

Try to stay safe with the exercises. We can be our own worst enemies sometimes.

- duckie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 06, 2010, 09:11:10 PM
Hi Everyone,

I hope everyone is doing well.

Over the weekend, I wanted to get out of the house a bit, so I asked my mom to take me to the grocery store. We arrived at the store, and all of the motorized carts (amigos) were in use. Since I cannot walk around the store, we sat in the car, with a view of the amigo area, waiting for one to free up. After 30-minutes of waiting (I have a handi-cap parking sticker, so we were in a good spot to see the amigo-storage area), I felt bad to hold my mom back, and told her we should just leave and go to a different store. She said she would go in and see if anyone was in line to cash out with an amigo, and she found someone. She stalked the poor man all the way to his car, to ensure I was able to get the cart next. Now, here is the part where I rant a bit: The 3 amigos that the store has were all being monopolized by morbidly-obese people, not the elderly, not post-op patients, or others with disabilities. I must admit it ticks me off. Frankly, the extremely obese gentlemen who my mom stalked may have benefited a bit from doing some walking. I know, I know, it is a poor attitude on my part, but darn it, without the use of a motorized cart, I cannot go out anywhere right now. I should also say that I hate it when people finish using an amigo, and do not plug it back in to charge. I have been on them before post-op, and had the power run out while I was half way through the store, with quite a few items in my basket. Very frustrating.

Today, I received a call from the ortho company who brought my CPM, letting me know my rental period was done. The machine was picked up today, and when asked how far I advanced on the thing, I had to tell him that I have never been able to get above 65 degrees. He looked at me and said that "is not good." I tried to explain to him about the blood in my joint, and my OS's adjusted, scaled-back protocol in my case. When I see my OS on Thursday, I will not be at all surprised if he re-orders another 21 days on the CPM. To be honest, I do not want the machine back yet again. It is a pain in the butt, frankly, and an inconvenience. I am tired of using a CPM, as this was the 4th time I have had the machine in the past year. My husband has to get me up so early in the morning, so he can put it on the bed, and then unload it before bed. I am always worried that my youngest doggie, who is a little naughty, will sneak in my room and chew on the cord. I am anal about the machine, since I am sure they are very costly, and I do not want to be responsible for paying to replace it should something happen to it. I have noticed, from past experience, that PT does more to help me regain my ROM than the CPM. I am hoping my OS loosens up my restrictions a bit this week, so I can make more progress without having to use a CPM yet again. I guess I am just getting sick of all the medical equipment taking over my living space. Between crutches, a walker, a cane, a DonJoy ice machine, the CPM, a shower chair, raised toilet seat, 3 different braces, numerous MRI, CT, and x-ray films, and my e-stim unit, it is getting to be a bit too much.

I ranted to Cdubb earlier today about this, but felt I would add this to my post-op diary, since it is how I feel right now.

Obviously, I am feeling a little overwhelmed right now....sorry for the negativity.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 06, 2010, 10:06:30 PM
Hi Annie,
You are NOT being negative you are telling it like it feels.  I hope it has helped a little.
I does almost seem like the equipment defines our lives at times, but know this to shall pass. Hang in there.  Hopefully the OS will let you do more soon.
That hubby of your sounds like a real gem. Hang in there Annie it will start to get better soon. You can make it.
Take Care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 06, 2010, 11:03:56 PM
Thanks for the support. I know I will get through; I always do, but it gets tiresome at times. I have struggled through MS, cancer, blood clots, many surgeries, and now, what I like to call "The Year of the Knee." It just seems like I have been the recipient of so many crosses-to-bear, it is almost (almost) funny at times.

My husband is almost 11 years older than me, and I am the one breaking down piece-by-piece. Poor guy, I bet he thought he was getting a nice young thing when we married, and I used to jokingly call him a cradle-robbing pervert....joke is on him I guess. He never complains though, he just jumps in and does what needs to be done with a smile and compliment. I am sure a lot of my KG's friends can relate to the guilt involved in a long medical issue. Although I know it is beyond my control, I still feel guilty for putting my wonderful family through so much.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 07, 2010, 12:41:26 AM
Annie,
I am sorry you have been the recipient of more than your share.  Unfortunately it happens.  I hate when it happens to nice people though.My guy is 10 years older than I am. He is falling apart like I am as well. Too many years of doing hard physical labour.  I also call mine a cradle robber.  I am sure he thought he was going to fall apart years before Me.  Not your fault Annie. S**t happens and some get way more s**t than others.  My knees have been crap since I was a kid. Up until the last few years I have managed to hold most of the pain in but no longer. You are indeed a strong woman. I think all families need at least one with long term illnesses so they learn compassion, how to care take and be generous and kind.  It makes for a wonderful learning experiences.  My brother was born physically disabled and I learned so much from having to care for him and still care for him.
Take care Annie.
This funk will lift and you will turn the corner on this challenge as well.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 07, 2010, 09:24:34 PM
Funny trend with these boards with a lot of our husbands being "cradle robbers".  My husband is over 14 years older than I am.  He'll be 46 this month and I'm 31 (32 in April). Kat Walk and her hubby also have a similar age gap.  His body is probably younger than mine though! He can run and jump like I never could! We used to enjoy tennis and long walks...now I'm lamed up...hopefully this is a temporarly situation though!

Annie,
You've definitely had more than your fair share of medical hardships.  Hang in there!  You're a strong woman!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 08, 2010, 12:43:12 AM
Cdubb
Yes isn't that hillareous.  I married at 21 and all the guys my age were just totally too immature.  I have always been older than I am.  Kind of a bummer actually.
My friends were all years behind me in that respect.  The age thing has always worked for us so I look at it as a plus.

Annie I hope your day is going better.
Take care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 08, 2010, 01:02:39 AM
Well, I can jump on this bandwagon too, but my husband is only 4 years older than me.  I have had so many problems the last couple of years he jokes that I am falling apart before his eyes.  Never expected all of this, but he has definitely stepped up to the plate and taken great care of me.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: kasia_ny on December 08, 2010, 05:48:22 AM
My husband is 6 years older than me and has a really bad back.  It goes out few times a year, but when it does... In September he was so bad he could barely move.  It lasted until Halloween.  I was in a lot of pain from my knee and he was in a lot of pain too.  Simple things like laundry or throwing the garbage out were a problem for both of us.  His parents had to come to help us with carrying some stuff, how embarrassing!

Annie:  I hope you are feeling better!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 09, 2010, 01:42:08 AM
Kasiany, I totally laughed out loud with your comment about the inlaws helping you two carry things!! Hysterical! 

Annie,
Hope you're getting along okay. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 09, 2010, 04:13:10 PM
Kasiany,
I laughed too.  Totally know what you mean too, my husband also has a bad back.  He has a ruptured disc.  He just takes care of it with meds and is totally against having surgery.  I told him now that I am an old pro at surgery that maybe he should just get his back fixed and he was like no way.  I'm not as brave as you, I would be a big baby about it.  Men!!  haha
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 10, 2010, 03:10:53 PM
Melissa,
As an insurance adjuster who has seen many many back surgeries go very bad, I agree with your husband. If he can manage okay, he should avoid back surgery.  I have seen good results too, but the general rule that any ortho or neuro has said when I've seen them present during in services or CEU's is that you never operate for back pain in and of itself.  You operate on the back when there is leg pain and and there are functional deficits related to the nerves that the disk is encroaching on. i.e. radiculopathy, diminshed reflexes, foot drop, bladder incontinence.  Herniated discs are also self limiting and many people improve over the course of a year - 2 years, but most people don't have the patience to wait that long.  That being said, I have had claimant's be absolutely miserable due to the searing nerve pain and can't walk, etc. and improved very rapidly after a microdisectomy or laminectomy.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 10, 2010, 10:11:28 PM
Hey Annie,
So how are you doing today? I hope the pain is starting to ease up a little.
Still snowing here in ON, makes for miserable knee weather. 
Take Care Annie,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 12, 2010, 12:22:57 AM
Hi Everyone,

Well, I had another follow-up with my OS on Thursday, and it left a little depressed. My OS began to lay out how long this recovery will be, and it was a little startling. He said that during my next follow-up on January 4th, he will x-ray my leg, and based on how well the bone is healing, may unlock my brace to my point of flexion. My ROM currently stinks,  and he wants me to try to make improvements in this area prior to the 4th, so my brace can be unlocked to a decent position. He said that I can WBAT on two crutches right now, and go to one crutch when I am comfortable. When my brace is unlocked, I will go back to two crutches, then down to one crutch. At some point, he will remove the brace altogether, but I will be back on two crutches again, then down to one, then off crutches. Once I am off crutches, then more aggressive PT will begin. He said there is a fine line right now of increasing PT, and being too aggressive in PT. He noted that being too aggressive could easily result in re-fracturing the TTO site (or causing additional fracture). When I am looking at a long-haul recovery, I do better with small, digestible pieces, and looking too far ahead seems overwhelming.

Today, I decided to try a little holiday shopping with my mom. We got up early, so we could arrive at the mall when it opened, so I could get a motorized cart. When we arrived, all the motorized carts were already taken, but they had a regular wheelchair available. It is so frustrating to use a wheelchair, and I felt down about my mom having to push me around. I tried to put on a happy face, and enjoy our little outing, but the crowds were horrid, and there seems to be very little tolerance for people in wheelchairs. My mom pushed me into a store, and I was looking for a small pillow to purchase, to place under my ankle where the foot support was digging in, and my mom pushed my foot into a display, and did not realize what was happening and turned the corner. My foot was caught, and twisted medially. I actually screamed as my foot twisted, and it felt like my TTO site broke all over again. My poor mom looked like she wanted to die, and I burst into tears.

Later on in the day, my mom was making a purchase at one store, so I wheeled myself to the next store over, and my mom had hung some packages on the back handrails of the wheelchair. One of the packages got caught between the wheel and the seat, and my chair was frozen in place. I could not make the package budge, and dropped my soda on the floor of the store, spilling the contents all over the carpeting. I was so flustered, and people were trying to push around me, but with the package stuck, my wheel would not move, so I could not get out of the way. A very nice gal who worked at the store ran over to try to help me, and cleaned up the mess I made, and was finally able to pull the package out. I started to cry again out of frustration.

Needless to say, I just wanted to go home. I am home now, and my knee, leg, and bone are throbbing, burning, and the swelling increased dramatically. I crutched in the door, and my husband was just home from work. He smiled and asked me how my little outing went? I looked at him and started to cry. I guess I was just not ready to try this yet, especially with all the holiday crowds, and I regret even trying. My husband helped me get my PJ's on, got my leg packed in ice, some pain meds, and put a pillow under my elevated leg.

I was so excited about getting out of the house, and doing a little shopping, but it turned out to be a series of unfortunate events.

 :'(
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 12, 2010, 01:55:22 AM
Hi Annie,
So sorry your trip didn't turn out as planned.
People aren't real responsive to wheelchairs.  Nor is this world designed for them.
Just try and take it easy for a few days and the leg will probably settle down again.  If it doesn't you should check with your GP or OS and make sure nothing bad happened. 
Don't look far into the future with recovery. It is a real one day at a time adventure.
That fella of your sounds just wonderful.
Hang in there Annie it will get better.  It is still early in the adventure.  I remember having days like that.
I remember I went shopping with both my crutches and the poor pity looks were just about more than I could stand. I was about 5 weeks out from surgery and by the time I got home I crawled in bed with my ice pack and a handful of ty3's and just went to sleep it was also before Christmas.
I won't make that mistake this time.  No shopping till I am crutch free.
Take Care,
Healing rays heading your way with a big smile attached. ;D
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 12, 2010, 03:36:39 PM
Annie,
Sorry your outing didn't turn out as planned.  I haven't tackled any mall shopping, but I could imagine that would be difficult this time of year with the crowd. Good for you for trying though!  I've stuck to solo store outings like Bed, Bath & Beyond, Target or Kohls.  I actually think I'll be more nervous doing those when I am off crutches though because then there is no beacon shining out to others around to steer clear!  Keep trying and eventually, they'll just become easier!   My first outings I attempted at about a week out were exhausting....now at 5 weeks, 4 days, I have pretty good stamina and have not taken any pain meds in probably over 2 weeks and being up doesn't really increase pain, but it does increase swelling.  Although... keep in mind, I have been told I am not the norm and I am recovering quicker than the average bear....so don't use me as any example...  As I've said before though...there is a good chance you may ultimately pass me up in your rehab with the ACI portion of my procedure making my protocol slower than as straight TT.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 12, 2010, 03:50:49 PM
Thank you Rknees and Cdubb for your words of encouragement and support. Last night was very rough, and I could not stand having my patella, medial joint line, or TTO site even lightly brushed.

When I woke this morning, the pain and swelling have not subsided, and I guess it will be a long day. We had some snow here last night, and the weatherman is calling for snow all day today. I really wanted to get some things done today (outside of sitting in the house), but it does not look good for me.

As the holidays are nearing, it seems like the demands on me are not stopping, as we are expecting company on Christmas, and I have shopping to accomplish. Some of the dinner items (lobster tails, prime rib) are on sale this week, and I really need to get them before the price rises. We have king crab legs at my mom's on Christmas Eve, and lobster and prime rib at my house on Christmas day. Also, me and mom make a lot of cookies (next weekend), and it seems that everyone is looking forward to me doing that again this year, even in the face of my recovery from this surgery. Honestly, I really do not feel like making cookies this year, but I do not want to disappoint anyone. I can see the holidays this year are going to be more stressful than usual.

I also need to finish up my final term paper, and get it submitted by Wednesday to finish up my MBA. I am beginning to feel a little overwhelmed.

I hope the increase in pain and swelling come under control soon, or I guess I may need to call my OS's office to ensure nothing happened when my leg got twisted yesterday. I think when my foot got caught and twisted, I twisted my leg the opposite direction (a reflex reaction), and really torqued it good.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 12, 2010, 08:10:02 PM
Annie
I have a question for you Annie.  Will Christmas come even if you don't do all you usually do?  Will the people that truly love you care if you baked your usual million cookies?  Will that great guy of yours really care if you feed him lobster or a can of soup?  Will this outcome really change the world as you know it or is it just a bump in the road you can work on for next Christmas.  Just my thoughts. ::I had the exact problem last year had my surgery the 10th of Nov. Was a pokey healer and was still on crutches at Christmas.  My girls all stepped up and did what I couldn't and what didn,t get done just didn't get done.  Everyones expectaions were just brought down to a more reasonable level.  I get the frustration, the anger, the resentment.  But what is truly important about Christmas is the simple times you spend with family and friends, and your overall health.
Take Care Annie,
Things will slowly get better.  If you need to have a cry do so.  A very old dear friend of mine always Tells me a few tears are always a good thing.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 13, 2010, 12:25:44 AM
Hi Rknees,

Yes, of course you are right about the holidays, and I know that. I think I am the problem, more than the people in my life. I have always bit off more than I can chew, and pile on too many expectations for myself. I think the expectations come from me, not other people. When I think about the holidays, I think about the wonderful time spent with family, and the memories we have made, not all the other stuff. I think I am just feeling down about how the past year has been one surgery after another, and just desperately want some normality back in my life.

I will get over my funk, and just enjoy the holidays with my family. I think yesterday, trying to shop, just really hit home in regards to how much I cannot do yet, and it bummed me out.

My three little dogs were so cute when I got home from hell yesterday (I mean the mall). They just knew I was upset, hurting, and feeling down, and they all gave me millions of kisses. I tell you, nothing in the world is quite like a pet to pick up my spirits. They really just know what to do to make me feel happy and loved.

It is so cold and snowy here in Michigan today, and all three of my chihuahua's are laying in front of the fire place in their sweaters, just as content as can be. I could take a lesson from them on enjoying the little things in life. My husband shoveled them a little path in the backyard, so they can go out to potty without sinking in the snow. Too cute.

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 13, 2010, 02:12:14 AM
Annie I can relate.
I am also very hard on myself, to try and do for everyone.  But one thing I have learned over the course of the last few bad knee years(3) is that we can't be everything to everyone.  I am so glad to hear how wonderful your friends and family are.
Just work on the paper, and then worry about what you can or can't do this year.  Give your self permission to do less and be good to you.
Pets are one of the best things on earth. We have 4 kitties. Ones mine one for each kid at home and an extra that just needed us. Speaking of kitties mine just jumped up and is now sleeping across my chest with her head on my shoulder.  She has replaced my babies that have all grown.  It is miserable her in Ontario as well just across the lake, same storm.  It is wet heavy snow.  I can just bet it is going to be like this when I go for my slice and dice.  Can't say I am thrilled.  Not looking forward to the pain.  Can't believe I am letting some guy I hardly know bust a second leg and screw it back together.  Kind of reminds me of a horror movie. Then lay around for 2 weeks while I am NWB no brace which scares me. One wrong move and pain is just out of this world. 60 days to wait.  Already been waiting since June.
Well good luck with the paper. Keep us posted on how the knee feels over the next few day. :)
Take Care Annie it is a pleasure to get to know you.
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 14, 2010, 06:33:50 PM
Afternoon Annie,
How's the paper coming along?
Hope you have manged to knock it down.  I have trouble writing papers on heavy duty pain meds.
Just thinking about you.
Take care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 15, 2010, 04:46:24 PM
Hey Rknees,

Term Paper.............Check

MBA FINISHED!!!!!!!!!!

Yes, I finished my paper last night, and turned that 32-page sucker in.

My final paper was on Jack Kevorkian and Physician-Assisted Suicide

It was a very interesting paper to write, but is one of those issues that branches off to a million different directions.

Now, I just have to wait for my final grade (should be posted no later than Monday). If I can pull off an "A" in this class, I will graduate with a 4.0 GPA! I am carrying an "A" in the class right now, but the term paper is worth 25 percent of our total grade, so anything can happen.

Had PT this morning, and my physical therapist is a little worried about the increase in medial-joint pain, and swelling since the twisting incident over the weekend. My bone pain has been jacked up since that happened too, and she worries about the screws backing out of the bone. In other words, I may have a screw loose.... ;D
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 15, 2010, 09:06:13 PM
Annie,
Way to go. An A, typical over achiever. ;)
Hey I bet that is an interesting paper.  Lots of directions are good.  4.0 most excellent. Must feel great to be finished the MBA.  Still working on my HBA in Religion and Culture.  Be lucky if I finish by the time I am 55.
Waiting on my grade from my final.  Won't be an A I will be doing well to get a C+.  Your typical remember 300 pgs worth of stuff and then try and regurgitate it in some sort of discernable order.  Not my strong suit.
As far as loose screw I think most of us have those... ;D You may need some x-rays to make sure all is well.  Still snowing here in ON doesn't look like it will ever end.
So glad you are finished one of those heavy loads.
Take Care,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 15, 2010, 10:48:39 PM
Way to go Annie, quite an achievement.   :D
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 16, 2010, 02:10:39 AM
Great job on the MBA!  I'm sure you'll pull off an A and graduate with a 4.0...and you call me an overacheiver when it's you all along!  I've just be incredibly lucky with how my recovery has gone! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 16, 2010, 02:18:53 PM
Thanks everyone for the congrats on my MBA. My final grade came in yesterday, and I did earn my "A"! I have officially graduated with a 4.0 GPA, and was so delighted when I received my grade, I called my entire family! Everyone is really jazzed, and my mom is as proud as can be.

Now that I conquered that hurdle, I can concentrate solely on getting this knee together. Still have a ton of medial joint pain, and my patella feels like it needs to pop. I am pretty concerned with one other thing: When I work on my heel slides, my patella is now beginning to grind. This is terribly worrisome, and this surgery was supposed to fix that. I am hoping it is just from the swelling and edema, and will quit once the swelling goes down, and the rest of the fluid is removed (hopefully on January 4th). Does anyone else still have grinding after TTO (TTT) surgery? If so, what has your OS said about it? Any input on this is appreciated.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 16, 2010, 02:29:46 PM
I have one more question: I have been experiencing a ton of peeling skin on my knee over the past couple of weeks. It is not just flaking skin, it is peeling in large areas, and no matter how much I moisturize it, it will not stop. Has anyone else experienced this after this type of surgery? No matter how much flakes off, it just keeps peeling and peeling.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 16, 2010, 03:29:14 PM
Annie
The skin peeling will slowly improve.  It is a result of the swelling and damage the surgery causes the skin. Plus most of us tend to be very cautious the first few weeks after surgery and can't and don't scrub with our usual vigour when showering.  The grinding could be several things the swelling from fluid the weakness from non use.  Try not to be to freaked out yet.  You are still early in this marathon. It took me 9-10 months before it really felt somewhat normal again.  It is a matter of getting used to the new normal.
Way to go on the A
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 18, 2010, 01:56:59 AM
The peeling skin is due to the swelling. I had a lot when I had my toe surgery last March. This time around, I just had a little on the outside of my calf, but my swelling has been in check for the most part.  With the toe surgery, my doc told me that the swelling is what causes it.  You've I think had more swelling than a lot of us.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on December 18, 2010, 08:46:53 AM
Hi Annie, I have just caught up on your diary, you have been through the ringer haven't you?!
Well Done on the 'A' - that's fantastic and I am sure you deserve it, especially since you had to work on your paper following major surgery.

I had the peeling skin thing, but on my foot, and only a little on my knee. My foot really swelled badly, so it makes sense hearing the other girls saying its caused by swelling. I have also developed the grinding, and a bit of clinking and clunking (I had a TTO and LR). I've asked my PT and he tells me its caused by my patella tracking differently to what its use to and its nothing to worry about. I'm like you, I worry about absolutely everything!

I hope your pain is at least a little better than the last few weeks, the bleeding into the joint wouldn't help, and I can certainly understand your concern about scar tissue. I am now 16wks post op and am stuck at 40* ROM. I have to have an MUA in January and am scared stiff. I am really worried about scar tissue in my knee, as I have a tendency to scar and bleed etc.. (I too had to go back to the OR following another non knee surgery to have a hematoma evacuated..)

I can also relate to your feelings of compulsion in regards to the Christmas baking. I always bake every Christmas (last year I started a pastry chef apprenticeship which came to a screaming holt because of my knee accident) and I have many people who are asking me if I'll be doing my usual baking whilst putting out their hand - hinting for their share.. I've bought stuff and I was suppose to start today, but I'm having a bad pain day and I'm just not up to it, and I feel bad about slothing around, doing very little that is productive. But its so much harder than normal right now, trying to do anything in the kitchen whilst on crutches. I find I get frustrated with the crutches, so I stop using them and I hobble around putting my weight on the kitchen bench and pay for my stupidity later with swelling and pain. It's my own fault, I am really bad at just saying no. I get the feeling you are the same!

Its sounds like you have a fantastic husband and family who is willing to help, so don't feel bad about having them help you. I know how you feel, and 16 wks on, I have learned its better to accept that fact than fight it as it just makes you more miserable than you need to be. They love you alot and they wouldn't be so forward in helping if they really didn't want to. I too have had my fair share of illness and operations and I have had to rely on hubby alot. I'm really blessed that he is such a gem and is so good about taking care of me. You'll get your independence back, you just have to hang in there, and have a little cry here and there if it helps you feel a bit better..

Anyhow, that's enough of my rambling.
Take Care,
Kat xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 18, 2010, 11:04:27 PM
Thanks everyone for your support.

Kat: I also had an MUA (in July), and do not want another one. It really increased pain and swelling for a couple of weeks, and the PT was pretty aggressive afterward.

Those of you who have followed my diary know that I had a twisting incident last weekend. Well, my physical therapist is concerned, and wants to contact my OS. My knee just looks "off" since the incident. It is more swollen, boggy feeling, increased fluid, and appears to be scarring down. In addition, it is taking on a slight bruised appearance across the patella tendon, and up the medial side.

Well, I went to my mother-in-law's house today for a holiday dinner, and you will not believe what happened! They sat me at the head of the table, with another chair off to the side for my leg to rest on (very thoughtful). One of the children in the family backed up, and plopped right down on my knee! I let out a terrible yell, and she put her hand on my shin, and pushed herself off of me. I could not believe it! The child in question is a bit overweight (I am being kind), and now my bone feels like it has been split in two. I just cannot believe my luck with this leg, and I am ready to lock myself away from the world at this point. I guess that call to my surgeon is inevitable now, since it seems that she did some damage to my leg. To make matters worse, the child began to cry after I yelped. All I could think was "what the heck are YOU crying for; I am the one who got hurt, I should be crying." I tried to smile and say I was ok, but inside I was crying like a baby. Then I had to sit there the rest of the time with my knee and bone getting stabbing pains in it, and try to act like it was not happening, just to save her feelings. I think I will just sit here in the house for the rest of my natural-born life where it is safer.

I guess Murphy's Law is shining down on me.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 19, 2010, 02:42:19 AM
Oh Annie,
So sorry to hear of another mishap for that knee.
Sounds like you need some x-rays of that poor knee of yours.  I would be hobbling off to the nearest ER to get it checked.  You don't want to leave that too
long if it needs to be refixed.
Will be thinking of you.  Keep us posted.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 19, 2010, 03:20:34 AM
Oh my gosh Annie, I am so sorry that you are having such bad luck with everything.  I hope that you will find out that everything is ok!

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on December 20, 2010, 09:52:29 AM
OMG!!!! You poor thing.. I really feel for you right now. I cannot even imagine how painful that would be. My son fell on my leg a few times in the early days, and I swore my head off coz that was bad enough, but to have a "heavy" child sit on your leg.. ?? I hope the parents of the kid grovelled..

I'd definitely get that checked. The last thing you want is to have it continuing to heal crooked. That happened to my son last year. He fell and broke his wrist. The stupid ER dept didn't put on the cast right and the bone moved. We had no idea of what was going on until his check X-ray 2wks later. The poor thing had to have his arm re-broken and straightened and the healing process started all over again.

I think we need to put you in a plastic bubble til you get better Annie  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on December 20, 2010, 10:52:10 AM
Annie, I forgot to ask about your MUA in July..

Was it a straight up MUA or with scope? Did the OS tell you why you were unable to bend your knee? What was your flexion like before the MUA?
I'm at 40 degrees and have been stuck there for 4 wks. Up until then I was at about 20-25 degrees, then my GP put me under a twilight sedation while my PT tried to get a bit more flexion. They got it to about 40-45 degrees before hitting a hard stop, but following that session it started to tighten up and my PT and I had to work really hard to keep it there for the first 2 wks. In the last 2 wks I have maintained the 40 odd degrees, without loosing any ROM but just can't get it any further. I feel like something is going to snap inside my knee. My OS tells me this is really unusual for TTT and LR. Trust me to be the "unusual" case, I always am.. But you know all about complications don't you!!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 20, 2010, 02:40:51 PM
Hi Kat,

Well, first, the parents of the child who sat on me did not even look like they felt bad. I felt like I was supposed to console the kid, since she was bawling, and I did not want to ruin the holiday dinner, so I just tried to suck it up. However, I was crying inside, and just wanted to go home. My mother-in-law had made dinner, and she is getting up in years, and her health is not good. I did not want to make a scene and ruin it for her more than anything. We were having a good time eating and visiting before that happened, and I did not want to be the person to bring everyone down. In addition, the same parents of the kid who sat on me have another child (she is younger), and she kept wanting up on her mother's lap, then she wanted down, then she wanted up, then she wanted down. Since her mother refused to tell her children "NO", she kept hoisting her up and down, right over my leg, and the kids feet were kicking the entire time. I was a nervous wreck, and was just waiting to get kicked in the knee. It was like she had no clue how bad her child hurt me, and did not seem to care if the other one kicked me. Now, I have a couple of spots at the TTO site that I cannot even brush against. It just feels like a newly broken bone. I tried to gently rub it when I got home from the holiday dinner, and it hurt so bad, it made me a little sick to my stomach. I do not dare try to touch it now, since it is throbbing while I type this message. My mom and sister are completely furious about this incident, and want me to call my OS asap this morning.

When I lost ROM in July, it was after my lateral release. I had bled so bad into the joint, they had to go back in 8 days later and clear out the hematoma tissue. I was in the hospital for a couple of days with a drain in my knee, and on IV pain meds and antibiotics. I was told that a hematoma like that can just sit and fester into a big infection. After that happened (2 surgeries in a week), I just lost ROM, and could not get it back. I had so much scar tissue, and they decided to do a MUA. I was put under, and they just bent my knee until they could hear the scar tissue break. A scope was not done at that time, but on October 1st, they went in and cleaned out masses of scar tissue. Six weeks later, when the TTO was performed, I had more scar tissue on both sides, under the patella, all around the fat pad, all the way to the tibia. I just build up a lot of scar tissue pretty quickly. I cannot remember what my ROM was prior to the MUA, but it did help me get my ROM back. I am struggling with ROM again since the TTO, but I anticipated it would be slow coming back. I have a lot of swelling, and fluid/blood in the joint, which does not help me to bend my knee. I have had fluid drained from my knee around 18 times in the past 12 months, and it looks like it will need to be aspirated again at my next appt.

I think I will call my OS this morning, and just let them know about both the twisting accident last week, and the crushing incident a couple days ago. What made matters worse was when the kid sat on me, and I began to scream, she placed her hands on my bone, and pushed herself off of me. It was like adding insult to injury. Honestly, I should write a novel about all of this.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 20, 2010, 07:11:27 PM
Hey Annie
How's the knee feeling today? :o
I got the make for my course, not quite the achiever you are but a B- suits me fine.  The prof was absent throughout the course.
Well take Care Annie.
Keep us posted.
Will be thinking of you.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 20, 2010, 11:07:49 PM
Hey RKnee,

Congrats on getting through another course. Sometimes a hard-earned B- is sweeter than an easy A. I was lucky to have really strong instructors throughout my program, which helps so much.

My knee is trashed today. I have a spot that I cannot even brush against (TTO spot), cause it feel broken in two. It is that deep, bone bruise, bone break feeling that makes me a little sick to my stomach.

I called my physical therapist this morning to let her know what happened over the weekend. She was already on my back last week about calling my OS after the twisting accident, and she was adamant today that I call him. I did call the office today, but my OS is in surgery all day. His assistant called him at the hospital, and he wants to see me on his next office day (Wednesday), first thing in the morning for an x-ray. I am praying nothing is wrong that will require a surgical fix. Worse-case-scenario: I need a surgical fix, but I hope it can wait until after the holiday.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 21, 2010, 01:47:24 AM
Hey Annie
It was agood idea to call. An x-ray should show if there was damage to the site or if screws have shifted.  Sorry you are having to deal with this and really sorry about the pain.  It can be so frustrating. I hope you don't need surgery again.  But if you do there are many of us here cheerring you on and sending prayers your way. ;D
Had that been one of my kids they would have had some major corner time and an earful.  Please keep us posted.

The professors absense was a huge problem.  Even though it is an online course surely she could have shown up once a week to see if anyone had any questions.
Whenever she did post she was so hostile I wouldn't ask a question if my life depended on it. I call them Crackerjack box Phd's. I think that type is more suited to research and writing not teaching..
Take Care Annie.  Will be thinking of you. ;)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 21, 2010, 04:45:41 PM
Hi Rknees,

Are you taking your classes online? I ask because you mentioned your instructor posting, which would indicate an online format. I have done both onground and online. My Associate degree was done entirely on-ground, my Bachelor degree was a mixture on on-ground and online, and my MBA was done entirely online. During my Associate degree, I had an instructor who was absent 80% of the time, and it was a very, very hard class. I remember thinking how horrible it was to not have any lectures, guidance, or opportunity to ask questions. Shortly after, she was let go by the college. That was such a hard quarter, and I remember spending countless hours trying to make sense of the material.

I actually work for a college, and teach courses online from time to time (not while I am off on disability though). However, I log in several times a day, and welcome all student questions. As soon as an instructor shuts down the opportunity for questions, you can be sure the learning environment will fall apart. One thing we always joke about is how acquiring a Ph.D. seems to cause the recipient to lose a good deal of common sense. Just because a person has a Ph.D., DBA or the like does not make him/her a good instructor. I am sorry you had to experience an instructor like that. Do you have the opportunity to evaluate your instructor, so you can be sure your voice is heard?

I have noticed that since my TTO, the tightness in my knee is tenfold. I have a very large lump in the area of my patella tendon (which I know if the moved bone area), and the lateral side of my knee is so tight, when I do my heel slides, it is so painful. The lump at the front of my knee is so tight, when I bend my knee, it turn completely white. It is making it very difficult to gain ROM, since it feels like my knee is going to split in two. Any one else have this after this type of surgery?

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 21, 2010, 08:35:39 PM
Hi Annie,
Yes I am doing online courses.  No University in my city.
Yes I did do the online eval on her and she lost big time.  I am just hoping they do something with her.  She is also an on ground prof at the same University.  I poor pity her students.  She was absent almost continually.  I understand that most on-line students are older but there were many from the onground University in their first year I expect it was a total turn off for them  The class average for that course in the spring was a C-.  Kind of speaks volumes doesn't it.  I have only had one other like her. So out if the 9 classes I have finished only 2 were a headache.  Pretty good odds actually.  My womens studdy course the the best Prof I got an A I attribute it to the excellent teaching job of the prof.

That tightness is normal I still have it on occasion. They slice the tissues around the tendon to move it and that is what you are probably feeling.  When you see the OS tomorrow mention it to make sure no damage was done to that area after the kid mishap.
Take Care Annie,
Rknees4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 23, 2010, 12:03:56 AM
Hi All,

My knee and bone feel just stinking awful tonight. First, I saw my OS today, had the x-ray, and no additional damage was done in response to the two accidents (thank goodness). The x-ray showed only a minimal amount of union of the cut and moved bone (bummer). I was so hoping that the x-ray would indicate my bone is almost completely healed, but it was not to be† :'(

Only a small portion of the top of the moved bone has formed a union so far, but I am hopeful that it will heal in time, after all, I am not really that far out just yet (between 5-6 weeks).

I have a lot of intense sensitivity on my knee, TTO site, and down my shin. My OS suggested taking a towel, and gently brushing it across the hypersensitive areas. He said it will help to desensitize the areas. It is worth a try, and may help anyone else who may be experiencing this as all those little nerves are waking back up from their nap since surgery.

PT was horrible today. We tried a couple additional things (small things), like ball squeezes and pushing my heel into the bed. Both of those exercises caused too much pain in my bone, but I managed to get through them. I hobbled out, came home, and am staying put, elevating, and icing.

I guess the day had a mix of good news, bad news, and difficult PT. Although, I am glad to add a few new things to my PT, but hate the pain and swelling increase afterward.

Oh well, like Scarlet always says...."Tomorrow is another day."

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 23, 2010, 12:09:33 AM
Annie,
That is great news that there wasn't any damage and you won't require more surgery.  Hopefully things will start to feel better and your rehab will become easier.  Try to have a Merry Christmas with your family and forget knee troubles for a while.  Just stay away from those hefty kids, lol.

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on December 23, 2010, 12:13:50 AM
Sorry your leg feels awful tonight.  Just focus on the positive that there was no damage in the mishap with the child sitting on your leg!  Like I told you earlier, I wouldn't fret about the lack of union of the bone yet.  I know I told you this, but others may be reading and find it useful, but at my 5 week post op appt, my doc didn't even do an x-ray because he said it would still show as being broken.  Did you ever obtain your op note? Do you know if they needed to do local bone grafting for the anteriorization part? I had local bone grafting done based on my op note and maybe that takes longer to show as healing?
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 23, 2010, 01:05:02 AM
Evening Annie,
That is good news that the kid incident didn't do more damage. :)
Sorry about the slow healing though. :'(  My 6 week x-rays showed very little difference from first x-rays.  My OS so kindly reminded me I wasn't 20 anymore.
It takes time.  Hang in there and try and enjoy the holidays now that you know what is going on.
Sounds like a good night for that ice, elevation and a pill.
Hang in there Annie remember it is a marathon.
Take Care,
Healing rays headed your way.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on December 23, 2010, 02:42:57 PM
Hey Annie, I must say I was very relieved for you that there was no movement of bone or such..
I'm so sorry its so painful, honestly I can really empathize with you. When I was at 6 wks, it seemed like everyone else was so much better that I was. I also had next to no bone formation at 4-5wk, when I had my 1st check X-ray. I just had an Xray done at 12wks and its healing well. Don't stress about it, it will heal it just needs more time. 

Well, I better run, Merry Christmas to you and your family, try and enjoy it as much as you can. Next year will be better, it has to be! (or at least that is what I am telling myself   ;)  )

Cheers,
Kat xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 23, 2010, 02:44:03 PM
Hi Everyone,

Thank you all for your continued support. You have all been a lifeline for me, and I truly do appreciate all of kindness.

cdubb: No, my op report was still not in. I am actually going to call the hospital today, and try to find out where it is, and ask for it to be faxed to my OS's office. Something obviously got mixed up, since the reports are usually back within the week. The only thing they have is the hand-written report (which is scant, and provides no details), and the op pictures. Very strange.

If I do not post again for a couple of days, it is because of the holiday rush, but I want to wish all my KG's friends a very Merry Christmas, and healing thoughts your way.

All my best,
Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 24, 2010, 03:32:49 AM
Hey Annie,
A Merry Christmas to you as well.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 28, 2010, 01:14:57 AM
Hi Friends,

I hope everyone had a lovely holiday.

My holiday was great with my family, and a lot of yummy food. Nobody bumped my knee, twisted it, slapped it, kicked it, or knocked me down. I think in light of recent events, it was worth mentioning.

I am getting a little worried though about my progress. The swelling in my knee does not seem to want to recede at all, and the amount of fluid seems to be increasing. In addition, my bone is still on fire, and I have been having a lot of night pain. Just the pressure from the pillow under my knee and bone hurts, and I keep waking up throughout the night. I would think things would begin to improve some by this time, and due to my history with this knee, I am beginning to get a little worried. It also appears that a couple of small, round bruises have appeared on and around my incision, and it is beginning to adhere down (scar tissue build up). I have also noticed that any tightening of my knee that flexes my patella tendon is horribly painful, but I am not too worried about that just yet, since it was moved, and is likely pretty sensitive. The constant medial joint line pain is a bit upsetting though, since I had that prior to this surgery, and was hoping it would improve.

Maybe I can make some progress tomorrow in PT, and I will feel a little better about my progress. Although my PT is out this week, so I will be working with her assistant. She did bring her assistant in during my last appt, to go over everything she can and cannot do with my knee. My PT has been with me for months, and she understands how funky this knee has been, and even gave me her home phone number, just in case the appts do not go well, or I have any questions/concerns.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 28, 2010, 02:45:59 AM
Hi Annie,
So good to hear you made it through Christmas without a mishap. ;)
Hope your PT goes well tomorrow. Don't let the new one do stuff you know she shouldn't.
I had all my girls home for Christmas and the hormones were flying.
Only 45 more days till surgery then I join the sticks group.
Well Take care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: nmf3 on December 28, 2010, 10:34:50 PM
WOW....that is the ony word I can muster Annie.  Reading your story makes all of my pain and worries and difficulties seem so trivial.  Bless you for being such a strong and wonderful fighter! Keep up the good work.  I am 2 weeks and 1 day post op of my own TTO and LR on my Rt. Knee. 

I hope you heal quickly.  good luck!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 29, 2010, 04:35:33 PM
OK, Enough Already! I woke up this morning with spasms and sharp pain in my knee. It really stinks that I have to pack this knee in ice right out-of-the-gate in the morning.

My PT was "concerned" yesterday at my appt, since it appears I have more fluid in my knee this week than I did last week. Looks like I might be headed for aspiration #19 in the near future....lovely.

I am feeling angry today  >:(

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 29, 2010, 05:45:41 PM
Hi Annie.
Sorry to hear the day is sucking before it really starts.
If you feel angry be angry for a bit, but it takes a lot of energy you probably don't have.
Hope the day gets better as time goes by.
With be thinking of you. :'(
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: nmf3 on December 29, 2010, 11:22:45 PM
Oh Annie....that sucks. I am so sorry!!! :( Why does it keep filling with fluid?? Gosh this stinks....they should just put in a drain for you!!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on December 30, 2010, 01:16:08 AM
So sorry to hear that Annie, that sucks.  Hope your day got better!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 30, 2010, 02:45:37 PM
Thanks everyone for understanding my crappy mood yesterday.

Hi nmf3,

Really cannot say why my knee keeps filling with fluid. My knee seems to think something is wrong, and is working overtime. Typically, the synovium puts out fluid to lubricate the joint, but in my case, my synovium is kicking out too much in an attempt to heal. It is sending all this healing stuff (fluid, swelling), but is going overboard. Clearly, my joint is irritated, and my knee is doing what it can to make it better, but on a grand scale.

They really cannot put a drain in my knee, since it could lead to an infection. Think of it this way: an open hole in my knee to accommodate a drain could allow bacteria to get in the joint. I had a drain for a couple of days after the hematoma surgery, but only while I was in the hospital back in April. However, after they pulled it out, the fluid just kept building up.

Getting my knee aspirated stinks; I never get used to it.  :-[

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 30, 2010, 09:58:31 PM
Hey Everyone,

I just returned from PT a little while ago, and had a rough time. First, my PT immediately could see that the amount of fluid in my joint has increased since Tuesday. I just cannot believe this is happening AGAIN! She poked around my joint, to feel the fluid, and it hurt like hell.

I have a lot of skin sensitivity in the area of the incision, since it is kind of numb, but feels funny. She used desensitizing tools on it today.  They are a bunch of little sticks with different materials on the ends (cotton, rubber, wool, etc.), and gently rubbed them over the sensitive areas to desensitize the incision. That was ok, but the problem (the big problem) is the joint itself (inside).

The only thing left is TKR, and I am beginning to think I should have chosen that option instead of TTO. Yes, I was given the option, but I still have good cartilage, so I wanted the TTO instead. UUGGGHHHH!!!!!!

I do not want to regret my decision, and I am still early out, but this is beginning to slide back into the issues before the TTO, and I am alarmed.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 31, 2010, 08:53:26 AM
Hey Annie,
Sorry to hear the fluid is still building up.
Hang in there girl this surgery takes time before you really know what it is going to be like.
I get the frustration and anxiety. The choice thing is never easy.
Me just up in pain it is almost 4 a.m. here in Canada.
Well better go take something so I can get some sleep.
Take Care,
Sending healing rays your way.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on December 31, 2010, 03:01:22 PM
Hi RKnees,

I hope you were able to get some sleep last night. It really is tough when knee pain keeps me from sleeping well, so I totally understand.

How have you been doing overall?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on December 31, 2010, 06:48:40 PM
Hi Annie,
I am fine just the pain build up last night.  I get tired of taking stuff so I often don't take anything then the pain gets out of control.  Yada yada yada, everyone knows the story they have lived it and are living it.  Just the usual anxiety of approaching surgery and the need to get stuff done because I will be out of whack so long. 
Yes I finally slept.  My better half was just getting up at 4:30 to head to the barn and I fell asleep shortly after that, and slept till 10 am.
Take Care Annie
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 02, 2011, 05:04:56 PM
Hi RKnees,

I hope you are doing well? Has sleeping been a little easier yet?

I was working on my quad sets last night, and when I did my quad sets, then moved into my heel slides, my knee stuck again. This is extremely upsetting to me. My knee did this before the TTO, and was a big issue. It almost looks like my knee sucks in on both the lateral and medial sides, then when it releases, it slowly pops back into place. This happened before when I was scarred down, so I am not sure if that is happening yet again?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 02, 2011, 05:29:56 PM
Hey Annie sorry you are still struggling,  Hang in there, it could just be the amount of fluid in the knee, and weak quads as it slowly atrophies.  Keep trying the PT and really elevate when not using the knee.
Take care,
Rk4.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 03, 2011, 03:00:00 PM
Thanks Rknees,

I am elevating, icing, going to PT, and resting, but my knee is simply not doing well. I feel like the bone break is improving, but my knee is getting worse. I went to my mom's house yesterday (she made me dinner and we watched the end of the latest season of Dexter, since we missed a couple episodes), and just getting showered and ready blew my knee up so bad, I was toast by the time my husband dropped me off. It is just too familiar; seems like it is just going right back to the mess it was in prior to surgery, and I am feeling hopeless at this point.

 :'(

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 03, 2011, 09:34:07 PM
Hey Annie
My knee still blows up like a basketball if I over due.  When ever you have a bone break it takes a long time for that to go away.  Another one of those everyone is different things.  I know a few people who broke ankles who still blow up on bad days after years. So it is an indecisive thing.
Sorry it is getting to you this knee junk is just a long hard road.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 03, 2011, 09:57:15 PM
I think I would be more settled with the long recovery, if things were not sliding back into the old problems. You are right, this knee junk just plain stinks. When I see people on tv, in public, or around my house walking easily, running,jumping, kneeling, squatting etc., I feel a pang of jealousy, and wonder if they know not to take it for granted?

I will never take pain-free, easy, mobility for granted again.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on January 03, 2011, 11:21:10 PM
I was never a runner. Never really saw the allure of running. However, I would like the option of running if I so desired. That and being able to kneel on the floor. Now not only do I have to ask for help with the high shelves, I also need help with the low ones.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on January 04, 2011, 02:03:25 AM
I was never a runner either, but I'd love to play a little recreational tennis. That would be a bonus though...I just want to get back to living life without always thinking of how every activity may impact my knee(s).
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on January 04, 2011, 05:57:46 AM
I second that one Courtney, plus I must be able to play golf and 18 holes would be nice without aching knee.  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on January 04, 2011, 01:59:52 PM
I am not interested in doing anything athletic.  I just want to be able to work all day, run errands, take a vacation withou pain. At 46, I don't think that is asking for much.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 04, 2011, 02:37:41 PM
Hey All,
I just want to walk with out the hobble.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 04, 2011, 03:31:57 PM
Sounds like none of us are asking for much, just an increase in quality-of-life. I feel like I have missed out on so much over the past couple of years due to this knee, and I took a leap-of-faith with my TTO, but the same problems are popping right back to the surface, and it is too upsetting. I feel like screaming.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: KW on January 04, 2011, 03:53:53 PM
Hi Annie,

Just wanted to through this out there....

Don't be so hard on your self...You are not even 8 weeks PO yet.† You have barely broken the surface of a TTO recovery and rehab. Remember total rehab takes 6 to 12 months.† I know it feels like all the same things are happening as before the surgery but give the rehab time.† Things are sooooo weak right now that the new alignment is not doing it's job.† Things are going to pop, crack, snap (Rice Krispies anyone!!) and hurt just from being moving things around....until those quads really kick into gear.† PT is your friend right now....Just keep it up and things will get better but it takes time.

Best of luck from someone who has survived 12 knee surgeries!

Karen† †
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 04, 2011, 07:24:02 PM
Thanks Karen; I appreciate the support. I know the recovery will be long and tough, and I am settled in my mind with the bone pain (I know that will take substantial time to resolve and heal). However, when things stop improving, and begin to move backwards, I start to worry. It has been a very long 1 1/2 years with this knee, and I was hoping the TTO would change things for me.

PT was rough today, and my physical therapist is going to call my OS today. It appears that my joint is getting stuck during flexion at the point of the tibial plateau, and then there is an anterior shift at about 45 degrees of flexion. It is a very abnormal joint movement, and causes deep joint pain. She is going to let him know what is happening, and how to proceed. I have experienced a lot of issues with scar tissue, and we are not sure if that is what is happening yet again. I had an MUA in July when I scarred down so bad after my lateral release and subsequent hematoma surgery, but my ROM is coming along so far, so I do not think another MUA is on the horizon. He will likely need to clear out all the scar tissue again surgically, but I will wait and see what he wants to do (do not want to get too far ahead of myself here).

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 05, 2011, 01:49:45 AM
Hey Annie,
So sorry to hear the joint is sticking, wish there was something I could say to make it better. :(
Just know that we all care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 06, 2011, 07:48:53 PM
Thanks Rk4,

I just came from PT, and I lost 20 degrees of flexion since Tuesday  >:(

The swelling has also increased, and things are tanking fast. My physical therapist called the OS's office just before my appt, but had to leave a message on the triage line. As soon as they call her back, she is going to call me.

This is incomprehensible, and I am feeling pretty down.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 06, 2011, 09:27:30 PM
Hey Annie,
That is a real bummer :( Annie,
Hope you get some answers quickly. ::)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on January 07, 2011, 01:21:03 AM
Oh Annie, I hope they get you sorted out quickly. Going backwards is no fun.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: nmf3 on January 08, 2011, 07:46:14 AM
ANNNIIIIEEEE!!! :( I am so sorry sweets!! I feel your sorrow....although you have had far worse luck than I.  I returned to work this week and I too have taken SEVERAL steps back in PT.  All of a sudden I can no longer do my quad set flexes or raise my leg.......I am so scared that I have messed something up.  I hate it too bc today is Friday so I get to agonize all weekend and come up with terrorizing "what if" situations.

Ugg sweets......I am sending happy thoughts your way!!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 09, 2011, 03:45:34 PM
Oh no nmf3, I am so sorry you are also having setbacks! It is frightening to think something may be wrong, and after a long-haul, it becomes a devastating scenario.

My PT did speak with on of my OS's PA's on Friday, and she has no idea why my tibial plateau seems to be catching and shifting. I am so tired of "I don't know", increased pain, swelling, and problems, and all the frustration. She said I "should" be able to do certain things in PT that I cannot yet do, and it makes me feel like a loser. I realize that a certain progression is expected post-surgically, but someone needs to let my knee in on that, because it seems to have its own plans for how my recovery will go. Last night before bed, I was sitting with my leg up, and began to bend it, and the pain, which I can only describe as a ripping sensation on the lateral side, had me almost screaming. This morning, the upper portion of my incision is raised up, and my patella hurts on the lateral side. My knee is painfully grating (still), and I feel like nothing has changed in response to the surgery. I am ready to just hack my darn knee off and be done with it.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on January 09, 2011, 04:02:23 PM
After dealing with all the frustration prior to this surgery, I'm can't even imagine the frustration that you currently are experiencing when things are continuing to not go as expected.  You're knee was already so compromised prior to this surgery, that you're recovery is going to be a bit more prolonged than many other TT's since you started in a condition behind many of us.   I'm sure the doctor and his PA are just as equally frustrated as well.  Dr.'s don't like it when their patients don't do as well as expected post op.  Maybe it's time to get a fresh set of eyes on your knee.  Talk to your OS about who he would recommend for another opinion, so he's involved in the process.  Maybe they can talk and brainstorm ideas. 2 heads are better than 1!   Somebody else a bit more removed from the situation may be able to provide a more objective assessment and have fresh ideas to bring to the table about why things are happening and the best course proceeding forward.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 09, 2011, 11:17:23 PM
Hi cdubb,

Well, I already had a second opinion prior to this surgery. The 2nd opinion doc looked at my good knee, and told me I needed TTO surgery. I really did not like the guy at all, and it sounded to me like he does the same cookie-cutter surgery on all of his patients, so I high-tailed it out of there (bad feeling about him). My very first surgery, back at the beginning of 09 was with a different surgeon as well. He refused to believe he did not fix my knee, and said I was "just getting old" (at 39 years old). I was referred to a rheumatologist, and she found nothing abnormal in my massive blood work, and recommended a surgeon (after another MRI). I asked who she might recommend, and that is how I found my current OS (who I really do like). However, my knee seems to be a subject of wonder to all, OS's, rhematologists, and PT's alike, but I am considering yet another set of eyes and ideas in another attempt to get to the bottom of things.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on January 10, 2011, 03:13:00 AM
You're knee definitely seems like a mystery that it just is so problematic.  You may be able to compile all your records and films and get somebody to review them prior to actually seeing you.  Although, it may be worthy to actually examine your knee with that funky shifting you're getting.  I think enlisting your OS's help in finding the best possible doc to examine you and review your records would be the best way to find the right doc. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 10, 2011, 05:00:43 AM
Hey Annie,
Hang in there. Sending healing rays your way.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 14, 2011, 05:07:03 AM
Hey Annie,
Hope you are Ok and not any worse. ::)  Was just thinking about you so I thought I would say Hi. :)
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 15, 2011, 10:04:56 PM
Hi Rk,

I have been MIA a bit lately because things are not going well at all. In PT Thursday, my knee stuck every singe time I bent it, so we had to stop. My PT measured my knee prior to beginning PT, and after each exercise, and the swelling just kept increasing. I have a lot of fluid in there now, and laid awake last night until almost 3 in the morning with sharp pain in the area where it is sticking, down into the patella tendon, and the fat pad area. The sharp pains started right over again when I got up this morning, and has me grounded. I just do not know what to do anymore, and am tired of feeling like a broken record.

I just cannot imagine what is wrong now, but would guess the scar tissue is back, and wreaking havoc once again inside the joint.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 17, 2011, 08:28:41 PM
Oh Annie  :-[

I know I don't post often here but I have been reading your Diary from the start. I have been MIA too due to moving house and I'd hoped to find you were improving when my internet was restored....how frustrating and upsetting for you to be faced with all this again. I really think you MUST see your OS urgently to evaluate what the next stage is. It does sound like the scarring is coming back fast, and you need a surgeon who is experienced in this and who can try and get the knee under control (through whatever is the best method) and then tailore rehab specifically for reducing the likelihood of it happening again. You really shouldn't be having such a tough time, my heart goes out to you when this TTO was meant to be getting back to function. Hang in there - I know you'll fight for the best outcome possible but you really need a pair of eyes on this knee who understands repeated scar formation and how to handle it.

Sending big hugs and hopes that this nightmare finally starts to improve.

Take care

Lottie x :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 17, 2011, 08:44:10 PM
God bless you kindness and concern Lottie; I appreciate it more than you know. I actually put in a call to my PT this morning, and am waiting for her to call me back. I simply cannot continue to go to PT, be able to only do things I can accomplish from home, push myself, and wind up in agony for three days. It just seems so counterproductive, since swelling and fluid cause more scar tissue, and the simply PT modalities we are trying are causing more swelling and fluid. It is such a vicious circle, and I am tired of having to go to the OS and tell him it is starting again with the scar tissue. I am frustrated, my family is frustrated, and I am sure my medical team (OS, PT) are also frustrated.

I have PT on Tuesday and Thursday, and the pattern is this: On Tuesday, I have been down for four days, and get the knee somewhat stable. However, just getting showered and ready for PT causes more swelling. I begin to backslide after my Tuesday session, and by the time Thursday rolls around, we can hardly do anything. However, after my Thursday session, my knee is a mess, and I have to spend 4 days with my leg elevated and iced, just to be ready to start all over again with this pattern on Tuesday.

I have done absolutely everything asked of me to get this knee going again, and feel like a failure when this pattern begins all over again.

I hope you are doing well Lottie? You mentioned you moved; how is the new house?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 18, 2011, 04:41:11 AM
Hi Annie,
Sorry to hear you are still struggling. :'( Know that I have been thinking about you.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 18, 2011, 11:52:25 AM
Annie

You are NOT a failure. Scar tissue is somewhat beyond your control once it has started up again and you need proper external support. I agree with the PT vicious cycle. I am no expert on scar tissue or AF but what I read seems to indicate a very specific approach is needed and there is an optimum time for treatment and the RIGHT PT. You deserve better support than people just saying they don't know what to do. This is your knee, and you need it! I would definitely stall on the PT and let the knee calm down, and see what can be done to stop this scarring getting worse. My fingers are crossed.

Thanks for asking about the move - we are getting sorted! This is a lovely house, right in the middle of countryside and I love it. We hired packers and removal men this time, as I have killed my knees in the past humping stuff about. This time I am just dealing with a duff back (probably from falling on my derriere in the snow in December - was so happy not to fall on my knee I didn't notice I slammed my butt and elbow into the ground!). We have two cats who have to stay in for a while and they are currently going mad - but they'll love it when they are released. We will have MANY gifts! (Dead and alive I suspect...)

Let us know how the knee goes. I wish you could see some positive improvement, knee woes just TAKE over your life, and you've had more than your fair share. Sending more hugs and best wishes

Lottie xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 18, 2011, 05:46:50 PM
Thanks Rknee, and Lottie, I am so blessed for your support.

I just came from PT, and we could not do anything at all. I woke up this morning feeling like I have been kicked in the back of my knee, and the sharp pains are excrutiating. My PT is very concerned, and placed a call to my OS this morning, and is awaiting a reply. The patella tendon is very puffy now, and the swelling has increased again. She put high volt e-stim on it, and some ice, but had to turn it off when the sharp pains began again. The Baker cyst is much larger today, hence the pain at the back of my knee. I will keep you posted as this gets sorted out. My PT said that sharp pain is a red flag that something is wrong. The grating behind my kneecap is terrible today, and it feels like my patella is skipping over something when I try to bend or straighten my knee.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 18, 2011, 07:08:41 PM
Hi Annie

Ouch.  :-[  This sounds painful and horrible and scary. I hope you get some news from your PT and OS soon. Surely the doctor needs to see you urgently? I don't know what to think it could be, but clearly you are in pain and your function is not good. That cannot be right and needs sorting out. I bet you would like to chop this knee off or wave a magic wand. I can only say hang in there - in my work with people who've had horribel road accidents I have seen legs that really shouldn't even be there and the people get back to great function. I've seen muslces transplanted to make toes work, more metalwork than you'd see on an ocean going liner holding legs together..etc etc. Not saying that to make you feel bad but to kind of say that things DO get better eventually, but you NEED the right diagnosis and treatment NOW. No one doubts your fighting spirit and your BRAVERY in dealing with this. I am truly inspired by your courage and the fact you take time to help others on here and appreciate our ramblings.

Keep your chin up. Is there any medicinal chocolate around?  :-*

Hugs,

Lottie x
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: nmf3 on January 18, 2011, 08:17:10 PM
Dearest Annie,

I find it so hard to complain about my surgery when you are sitting here in so much pain with so much mystery.  I wish I could take your pain away.  I wish I could help! Please know I think of you often and when I am having a bad day I think of your bravery and misery and you give me strength and inspiration.  Hang in there friend! :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 18, 2011, 08:24:18 PM
Thanks Lottie, and nmf3, your friendship and support are keeping me going. I am confused, worried, and miserable. Whenever I try to get up and move around a bit, it sets off a firestorm of sharp pain, and I am tired of sitting in this stupid chair. I am actually beginning to feel jealous of those around me who can walk, run, go up and down stairs etc. I sit and wonder if they take it for granted?
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 18, 2011, 10:23:11 PM
Annie

It is bedtime here in the UK so I shall be signing off soon. I hope you get some time with a doctor tomorrow. This is not right and you need to be seen. Yes, i think many people take mobility for granted. I know I did. I remember running down hills at top speed (top speed for me anyway!), crawling around on my knees, hiking for 14 miles, snow shoeing, dancing for hours....and I NEVER thought of those bits in the middle of my legs that were so crucial. I think we just assume our bodies work. When they fail us, it is a shock, especially when we are used to being active. I know I said to myself that if my knees improved I would just be HAPPY and not worry about trivial things like is the washing in, have we got bills paid, what if I'm late for work...etc etc...but it is easy to always find something else to worry about even when a health condition settles. So, I understand the jealousy. It is only human to feel that way. But stay strong - this WILL get better. Something is wrong in there, and it will be diagnosed and it will be improved. Keep pushing to get your knee back.

Big hugs and let us know what tomorrow brings. My mogs also send a hug and a cyber meow. (from their current prison house!)

Lottie xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 19, 2011, 03:27:19 AM
Hey Annie,
Just checking in again. Sorry about the pain.  I sat with my pair up in the air today as I over did yesterday painting again.
I am just a slow learner. Hope they can get the situation sorted out soon so you can have some relief. This knee stuff is sometimes just a vicious circle.
Well my thoughts and prayers will be with you this night. :)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 19, 2011, 02:49:08 PM
Thanks Rknees and Lottie; I am blessed to have friends like you.

Got up this morning with my knee grating so bad, it feels like it is dragging over a gravel driveway. You can actually hear the grating, aside from feeling it. My "good" knee is also giving me some trouble, and I found myself icing both knees last night. I try not to pay too much attention to my "good" knee, but over the past year, it has been bothering me more and more.

Rknees: I can;t imagine trying to paint, and I hope you are taking it easy today.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 19, 2011, 03:42:26 PM
Morning Annie :)
No I am painting half the livingroom today and the rest on Friday.  I have to rest one day inbetween.  I probably shouldn't be as the knees are like basketballs, but I couldn't stand to look at the walls while I am totally laidup. The good knee is just jealous of the bad knee and would like some tender love and care as well. ;)
I found I had the same problem after the first surgery the "good knee" was just terrible. After PT i would get the PT to ice them both.
Hang in there this is a marathon.  Hopefully they will see a reason for the problems soon.
Take Care,
Will be thinking of you.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 19, 2011, 07:07:41 PM
Hey Annie

Sorry to hear about the sound effects. Not desirable. My knees both grind like mad, I can hear them and it puts me off squatting down or extending them whilst listening (loud music helps!) but mine haven't been through the surgery wringer. You certainly need someone to look at what is going on and I hope you get some progress on that today. Your good knee is getting to do all the work so it is protesting - I am sure it will settle down once the naughty knee gets kicked into behaving. I have one "better" knee but that too also plays up when the "bad" knee is seriously unhappy. They are a matching pair...for sure.

Hang on in there. Hugs,

Lottie xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 21, 2011, 09:11:02 PM
Hello fellow KGers,

My physical therapist finally talked with the PA at my surgeon's office, and I am supposed to stop all PT until he can look at it and do some x-rays. Because it is sticking and locking, and I have to physically manipulate it back in place, something may be wrong. The Pa asked my PT what it looks like when it locks, and she described how it sucks in on both sides every time it is bent, and even when I contract my quad during SLR's, but neither is sure why it is doing this. So, until after I see him next week, PT is stopped.

My biggest fear is that is has healed incorrectly, and he will need to re-break it and set it again. I expressed this fear to my PT, and she said she is afraid of the same thing; not too reassuring. Just not sure if it is a scar tissue thing, or something in the way it is healing, or the hardware, or something else altogether.

This really stinks!

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on January 21, 2011, 10:24:55 PM
so sorry!!!  try to not let your mind go to dark places until you meet with the doctor.  it may not be as bad as you think. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 21, 2011, 10:41:37 PM
Hi Annie

I'm so sorry things are so frustrating for you. At least you have a review SOON with your OS although I know it must be so scary wondering what is going on. As mermaids said, try not to think the worst - easier said than done. However there is a logic in expecting the worst and then anything better is a bonus in a warped way. It is what it is at the moment. You have done everything you could to get it under control and now you need some expert advice. It HAS to be something that can be worked on and some time it WILL turn a corner and get better. I can only imagine this is a bit of a dark no man's land at the moment with no clear answers. I have been thinking of you today. I hope you get some respite from the pain this weekend and can enjoy some relaxation.

You are right. It DOES stink. But you'll get through it. Being defeated by a pile of ligaments, cartilage and bone is NOT an option. But it sure feels like it at times I know.

Hugs and purrs xxxxxx

Lottie  :)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 21, 2011, 10:53:02 PM
Thanks Mermaids and Lottie; I appreciate the support and words of encouragement. On one hand, I guess it is best to hold PT for now, until we have a better grasp on what is happening. As it stands now, every time I bend my knee, it sticks, so I really cannot do anything with it. Furthermore, when I contract my quad, the joint sticks, so I am kind of at a loss. On the other hand, I have noticed that the patella tendon area is beginning to feel tight and stiff, so I feel like I need to keep working it, but when I try to do some home PT, it just keeps sticking, and I have to twist it around and push on it to get it to let go. Every time that happens, the sharp pains start, so I am trying to be a compliant patient, and wait until it is examined. Seems like time is important though in getting this figured out. I do not want to regress further with rehabbing this knee, and have to back way up again.

I guess it is what it is, no matter what I want it to be.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 22, 2011, 04:31:23 AM
Hey Annie
Sorry to hear about the stalled PT, but perhaps it is better so you don't do anymore damage.  Hopefully it is something that can be fixed with out drastic measures.
Managed to finsh all the painting I am going to do so I don't have to look at the mess the walls used to be. But the knees aren't very happy about it, they arestill quite swollen.  So hopefully a weekend with little time on them will help. :'( I hate doing nothing. I always have lots to do, with a house full of pets and 2 kids and hubby. Well time to crash, the knees are really sore tonight.
Take Care, keep us posted, positive vibes coming your way Annie. 8)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 24, 2011, 04:25:51 PM
Hi Everyone,

Just a little update: Well, the weekend was quiet. I only left the house once to go have a bite to eat with my mom. The weather has been right down bitter cold here, so staying home was not a problem. We went to our local Olive Garden, and it was so packed, we had to wait almost 40 minutes for a table. The hostess saw me come in with crutches and my brace, and she ran to get me chair to sit in while waiting. Of course, all the seats in the waiting area were taken, but she placed me in an area of high traffic, and my leg was out in front of me, right in the path of everyone. My mom stood next to my leg, guarding it from all the people mulling around. I swear, my poor mom looked like she was going to have a nervous breakdown about someone bumping into my foot or leg. I have to admit it was a little annoying that the seats were taken mostly by children, who would not get up and let me sit down. I remember when I was a child, my mother would have made me get up and stand if someone came in on crutches, or an elderly person needed to sit down. Times have certainly changed.

Anyway, back to my knee (sorry for the small rant). My knee is still very swollen, sticking, and it feels (and sounds) like a rusty hinge. It feels like something is either in there scraping across the joint when I bend or straighten my knee, or it is not quite tracking correctly, causing the rusty-hinge phenomenon. I envision a door that is not hung quite right, and the hinge is not engaging quite right. I cannot accept this. The TTO was meant to fix my alignment issues, not make them worse. If this is a good as it gets, it is unacceptable. I am finally resigned to the fact that I will likely need this knee replaced sooner rather than later. I am certain that I should have picked that option when given the choice, and skipped the TTO altogether.

I think I finally just got mad about the whole thing, instead of feeling sorry for myself.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 24, 2011, 05:12:56 PM
Hi Annie

I've been thinking about you. Sounds like a nightmare protecting the leg from all those people. WHY don't children let adults sit down now? I totally agree - even at places like doctors or hospitals they hog the seats when older people come in or people on crutches etc. So rude!! My mother would have made me get up, and then when I grew older I would do the same. We came back off holiday recently and had to get a shuttle train thingy between terminals. It was busy, and a guy got on with a young baby in his arms and a backpack. We were the only people to offer him a seat! There were children and all sorts on the (few) seats that existed.

Anyway - rant over here too. Its too bad about your knee, but angry is actually good as it sounds like you're going to channel that into a positive outcome. Don't beat yourself over the TKR choice. If your cartilage and ligaments were fine then I too would have gone for the TTO. We make the choice that seems right at that time, and in many ways it is the right one because thats the one we make. You can't know how things will turn out. I guess the question is how much has the TTO actually failed and how much is feeling wrong because of possible scar tissue and muscle issues. Do you have any follow up scheduled with your OS? Maybe this op is saveable without resorting to a TKR with the right approach now, do you think your OS really understands the scar tissue regime and rehab should you need further removal?

You must be SO fed up with all this. Stay smiling if you can. One day that knee will be back to serving you functionally and this will be a bad memory.

With hugs,

Lottie xxx (and two very bored cats who want to go out and explore!!)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 24, 2011, 05:37:02 PM
Hi Lottie,

I  understand how your poor cats feel. I have three chihuahua's that love to go outside in the summer, running and playing. However, it is far too cold for them now, so they run out, go potty, and limp back in with cold feet. Poor little angels; I love them so much. All three plaster themselves to me at night, trying to stay warm and cozy.

I am not sure how much is caused by scar tissue, and I am not so confident that my OS places as much importance in the devastation that scar tissue can cause. He always puts me on a CPM post surgically, knowing I tend to scar down, but that is about as far as he goes to devise a protocol to curtail it from building up again. I see him on Wednesday (late afternoon), so I will know a bit more at that time. Seems like scar tissue problems are not well understood by most OS's, but it is causing a nightmare for me. I talked to him about my concerns of scar tissue coming back after the TTO, since he took out so much scar tissue, but he simply said he did not think it would build back up. He gave no real explanation why he felt that way. He took so much scar tissue out; it was everywhere. It was in both the medial and lateral gutters, the fat pad, pre-patella area, and extended all the way to the tibia. I feel like I am caught in a vicious circle of scar tissue, with no real relief in sight.

From what I have read by Noyes, scar tissue can cause mechanical issues, which in turn cause the destruction of cartilage. I got up and around a bit this morning, emptying the bathroom garbage cans, and making the bed. Now I have increased swelling, and sharp pains again on the medial side and my surgical site. This is simply not going to do for my desired lifestyle. I am usually an extremely active person, and tend to have an abundance of energy. I want to enjoy life again. I am an avid gardener, but had to turn my back on it almost completely last summer, and simply enjoy my Perenials, but I really wanted a full-on garden again this year, and plant some annuals, and a vegetable garden.

I hope things improve soon, so I can begin thinking about the garden I want this year.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on January 25, 2011, 04:02:51 AM
Annie,
So sorry to hear that you continue to have problems.  I hope they figure out something for you soon.
Is your OS Dr. Noyes, I noticed you mentioned him in your post.  He is my OS who has done all my surgeries.

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 25, 2011, 03:02:04 PM
Hello Melissa,

Thank you for your well wishes. No, Dr. Noyes is not my OS; I did read through his lecture on arthrofibrosis in the information hub, and have noticed that he has been of great assistance to other KG members who suffer from problems with debilitating scar tissue. I do have an amazing OS, one of the best in the midwest, however, he is not an AF specialist, and I am beginning to realize that maybe I do need to see someone who understands and specializes in AF, the problems it causes, and places it hides in and around the joint. I cannot keep going in this circle of surgery, scar tissue, surgery, scar tissue; it is exhausting, frustrating, painful, and disappointing.

All my best,
Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on January 26, 2011, 02:48:45 AM
Hi Annie,
Wishing so much that things would get better for you.
Yes, Dr. Noyes has done all of my knee surgeries and he is very good.  Thankfully I have not had any scar tissue issues so I haven't had to use his expertise with that.  However, today when I was at therapy the lady next to me had surgery with Noyes last week.  She and her husband traveled to Cincinnati from Canada to have her surgery.  He removed a band of scar tissue from her knee.
I hope you come up with a solution that works for you.  :)

Melissa
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 28, 2011, 05:57:45 PM
Hi Annie

How are you? I've been working away for a few days and wondered how things were now I'm home with a glass of wine and central heating! Were you due to see your OS this week or am I dreaming that? Busy old week here. Mogs have finally been allowed and are delighted with their new countryside exploring. I have a bet on which one brings the first gift and what it will be......

I hope you're having some relief from the pain. It certainly sounds like you'd benefit from a scar tissue specialist taking a look at your history and your knee's current status. You deserve to move forwards after all this time.

Hugs

Lottie xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 28, 2011, 06:21:36 PM
Hi Lottie,

You were correct, I had an appt with my OS on Wednesday. Let me begin by saying that my appt was scheduled at 4:00, but he was running three hours behind! I never even saw him until just after 7:00 p.m.

First, his PA came in to see what my knee looked like, since she had talked with my physical therapist, and was told it is catching and locking. She saw it catch and lock, and said I might have scar tissue impinged in the joint line, or synovitis impinged. Then my OS came in and said he was not certain if it is scar tissue.synovitis, or muscle weakness causing my patella to not glide correctly. Now, I am not really on board with that, since my quad strength has been good, and I know exactly what scar tissue and synovitis feel like, since it has plagued me so many times in the past, and it it doing the exact same thing. He then asked me what my PT was having me do, and when I told him, he hit the roof. He asked me if she even knows how to work with TTO patients, and those with patella-femoral issues. He was pretty mad, and said that in having me do short-arc quads at this point, the surgery could be ruined, and a non-union could occur. He all but begged me to drive an hour to his office 3xs a week for a couple of weeks to work with his PT dept. He has never asked that of me before, and has always said I can go anywhere I choose, but this time, he was sure that his PT dept would be able to come up with a better protocol, and after a couple weeks, I could take the protocol back to my local PT.

I agreed to work with his PT for a couple weeks, and think it will be beneficial for two reasons: First, it will give his PT a chance to see just how bad my knee is catching and locking, and they can report it directly to him. Second, it will help my PT here in my area. I think it will be a good thing, since three other PT's have been completely in awe and confusion when it comes to how touchy my knee actually is. I think it will be a good dose of reality for him. I was a little upset that he was so mad at my PT, since she called twice to ask about a protocol, and nobody ever gave her any good direction.

I also have to continue wearing my brace for a few weeks, and walk with one crutch. He wanted to see me back in 2-3 weeks, but when his scheduler looked at his office days, he will not be in the office in 2-3 weeks, so I have to wait and see him again on March 2nd.

Although I have fluid in my knee, he did not drain it this week. He thinks it will further irritate my knee to do that right now, but his PA's will monitor it while I am in PT, and drain it if it gets any worse.

So, basically, I am still in the stupid brace, still walking with a crutch, am changing PT for a couple of weeks, and nobody really knows why it is catching and locking. Honestly, for waiting around 3 hours, not much was really decided, done, or figured out.

My knee locked so bad last night, it has been aching and aching since then. I really just give up sometimes.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on January 28, 2011, 07:06:39 PM
Oh Annie  :-\  Ugh. I had hoped he would have a epiphany and be able to tell you what was going on. I guess the good thing is that he recognises you need some extra help and by going to their PT facility it is a direct feedback to him and the team. I also guess that not rushing into anything else surgical is a good plan at this stage as the knee is so traumatised. I can only imagine how frustrating it is to be told it could be muscle weakness - to my non medic brain the symptoms you have are more than that. OK weak muscles won't help but if you can't work the knee fully it is catch 22 to get them stronger. I don't think locking, severe pain and the swelling are down to a bit of quad weakness. BUT seeing a different PT, hopefully one specialised in dealing with knee surgery and complications can only be a good thing. Ugh to the brace and crutch continuation, but hopefully the knee will start to calm down with the right approach.

How frustrated you must feel. This IS one step forwards though, albeit a baby step. You're in a different system and fighting your knee to come back!

Take care. Anything planned for the weekend at all? I hope you get some me-time and some relaxtion. It is Friday night here, and it is a bit of a ritual for a curry to be delivered. I hope the delivery man has a sat nav and a torch! I figure I eat pretty good all week and hit the gym so I deserve some indulgence! And probably a DVD to accompany it, and hubby is just building the fire. Cannot beat a real fire.  :D

Hugs xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 28, 2011, 09:20:34 PM
Hi Lottie,

Sounds like you have a wonderful, relaxing evening planned. My mom called me earlier and asked me to go to dinner with her, and I immediately said "YES". I am not sure where we are going yet, anything sounds good; I am starving.

I completely agree that quad weakness is not the issue here. I do not have that giving away feeling, which typically accompanies quad weakness, and since I have been down this road before, I know it is not what is going on. Maybe once his PT works with me, he can confirm that something more diabolical is going on inside my joint. If things do not begin to improve quickly, I am calling for an appt with Dr. Teitge. He is only about an hour from me, and I understand he is a wonderful OS, and has been recommended to me by several people. He is supposed to be a great doc for all things related to the PF area of the joint.

Annie

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 29, 2011, 02:54:09 AM
Hi Annie,
Sorry the drama continues.  Typical OS blame PT for the problems and never accept some of the blame. >:(  At least with you doing PT there you have a chance at someone else seeing the problem which is a positive thing. :) I have been thinking about you .  Only 13 days until the slice and dice for me. Well better go.
Take Care, and keep us posted. We care and understand your frustrations.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 29, 2011, 02:16:02 PM
Hi RK4,

Wow!  Your surgery date is sneaking right up. Do you feel ready? By the time I had my TTO (after a series of scopes and failed surgery), I was more than ready to have something more substantial done to fix my knee. I only had five days notice between deciding to do the surgery, and the actual surgery date though, so I did not have too much time to get nervous. I wanted it done by the end of the year, and my OS had a cancellation. When they asked me if I wanted to take the canceled spot, I said "Yes", so it happened really fast. If I had not taken the cancellation, I would have had to wait until after the first of the year, and my insurance was changing to a deductible plan, so I definitely wanted it done in 2010.

Yes, I do feel like my OS is pushing the blame off on my awesome physical therapist. I do agree though that it is a good thing to go to his PT for a little while, so they can relay to him what is actually going on. Maybe he will be more receptive to his own PT than he was to my local PT. I know my PT sent him a progress letter prior to my appt last week, letting him know how bad my knee is catching and locking, so he had the letter prior to seeing me. I really do hope his PT has a few tricks up his sleeve to rehab this knee, but I am not going to get my hopes up too much at this point. I think it will be good for them to see with their own eyes just how bad my knee actually is, and how it is catching and locking almost 100 percent of the time when I bend it. I wonder if they will be as shocked as my PT when they get a load of my trick knee?

Thinking of you RK4, and hoping you are not getting too nervous about your upcoming surgery. I am looking forward to reading how your journey goes.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 30, 2011, 01:52:55 AM
Evening Annie,
Do I feel ready? This has been in the wings for me since early summer. Yes and no, yes because I am tired of the subluxations and almost constant pain.  But I also know it won't fix the damage I have already done.  The wear and tear is there and he can't do much more than try to smooth it out a bit. But if it hurts less I will be happy when alls said and done. I just want to be able to walk a few miles at a stretch.  Nothing wild and crazy like sking or skydiving. No because I am not looking forward to 2 weeks NWB, and painful PT and snapping scar tissue and all the stuff that goes along with the surgery.  I swelled so bad last time it took me 3 months to start to unswell.  I had the football knee so long I thought it was going to be permanent. :o

When will you be going for your first PT with the new guys?  I hope the knee totally misbehaves so they can see it in action.  Then maybe you will get some answers from your OS that are better and way more accurate.
Take Care Annie
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 30, 2011, 03:32:31 AM
Hi RK4,

I will pray that your surgery gives you some relief from the pain and subluxes you have been suffering with for so long. I wish you could have had your surgery much sooner. Waiting so long must be agony for you.

I have my first PT with my OS's guy on Monday. I also hope it acts up, and puts on a good show for them. I have no doubt it will, it does it little act every single time I bend it. It is really swollen today, and I had difficulty sleeping last night. At around 3 a.m., I was finally just drifting off, and my doggies leaped out of bed barking their heads off at something outside. I finally got settled back down, only to be woken back up at 8 a.m. when one of the guys who works with my husband came over to carpool to the job site (my husband is a roofing contractor). I finally gave up, hobbled out of bed, and saw what can only be described as Santa Claus sitting on a bucket of tar in my entryway, waiting for my husband to put on his work gear and head out. I am not sure who the worker was, but he looked like Santa, and I think I gave him the stank eye for waking me up. I cannot imagine why he banged on the door, when I would have expected him to just slide down the chimney. My husband had brought the bucket of tar in the house last night so it was not frozen when they needed to use it today.

My knee is such a darn mess, and it is making me very, very grumpy, so I hope his PT can handle both me and my very odd knee.

I agree, having him see first hand what I am dealing with will likely be a benefit in getting to the bottom of what is actually going on.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on January 30, 2011, 09:54:23 PM
Hey Annie,
I hear you on the grumpy, does exactly the same thing to me. >:(  Goodluck tomorrow let us know how it goes and if it does it's totally misbehaving thing.
Take care will be thinking of you.  It is easier to worry about someones else than yourself. ;)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on January 31, 2011, 08:03:17 PM
Hi Everyone,

Had my first PT today with my new physical therapist at the OS's office, per his urging. My appt was at 10 a.m., but it was 11:30 before we got started. I have a 2-hour round trip drive to his office, and PT took about an hour once we got started, so half of my day revolved around PT. I will say that if they continue to make me sit there for 1 1/2 hours, I will chuck it in and go back to my local PT.

I did get a copy of my surgical report today, and it noted that I had a Fulkerson's procedure, and my fat pad was severely scarred down with fibrotic scar tissue that encompassed the entire retropatella area, and extended into the lateral retinacular area. It was also noted that the entire back of my patella is breaking down.

The new PT said that the fat pad area is again thickened, and sticky, which is why my joint is sticking and locking. He said that since I had a TTO, and 4 other surgeries in a year's time, it could take 12-18 months for my knee to heal and feel better. I honestly wanted to cry when he told me that. He only bent my knee once to measure ROM (yes, it did stick when I bent it), and worked mostly to reduce swelling and work on my quad, and also some stretching exercises.

I was scheduled to return on Wednesday and Thursday, but switched my Wed to Friday, since the weather here is predicted to get very nasty tomorrow, and snow through Wednesday night, with a snowfall total of 12-18 inches! Since I have an hour drive, I am not going to go if the weather is nasty. I guess most of their Wednesday patients were calling to switch their day, so I am not the only one.

My knee is pretty flared up now, and I noticed that the bio-feedback was painful. It was painful mostly when I let go of the quad contraction, feeling like my patella is under pressure.

We will see how it goes.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on January 31, 2011, 09:31:51 PM
Oh Annie, your story makes me want to hug my PT guys. An hour's drive is a lot, but there is some benefit to working with your OS's PT team.  The close communication can be a huge advantage in a complicated case.  That's why I refer to my PT guys and my OS as "my team."  They talk about case quite often, comparing observations and brainstorming new ways to torture help me. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 01, 2011, 12:57:52 AM
Hi Annie,
Well the surgical report sheds lots of light on the problem doesn't it.  The noise is from the patella grinding on the surrounding cartilage. Sorry to hear about the long recovery time frame, but just a regular non complicated TTT can take up to a year to feel normal. So really not alot off of that.  I never believe and OS when they say it will be better in six weeks.  When I busted my arm when I got hit by a truck as a kid it took 3 month to start to feel better. It is a difficult surgery at the best of time. :)  Hang in there YOU CAN do it.  You are a strong woman. Get out the ice and elevate after PT it will help.
Will be thinking of you.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 01, 2011, 01:55:02 PM
Hi Annie

I've been away with work again but have been thinking of you. PT sounds like it was in some ways positive, although I can imagine the timescale was enough to make you want to cry. However, at least with understanding and the right approach it sounds like this knee surgery is going to be having a decent outcome. As you say, time will tell. I have the rearside of my patella breaking down, and I know how scary it is to wonder how long it will last, what is aggravating it and so on. Its not on that they kept you hanging around for an hour and half though, really out of order. I have all my fingers crossed for a better outcome with some systematic PT and at least if it doesn't help, then they are placed right next to your OS to consult with him. As said, get that ice out and elevate as much as you can.

Keep us posted, and big hugs

Lottie xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 04, 2011, 03:56:41 AM
Evening Annie,
Was just thinking about you so I thought I would say HI.  Hope you had an OK day and that you had at least one positive thing happen.
I had my pre-op labs and such done.  Looks like I am a go for thurs next week. Not sure how much I am looking forward to it this time as I now know what I am in for,(lots of pain agony pills and frustration.) Still not sure how my already post Op knee is going to handle the extra work.  But I have a feeling it won't be good, just from the painting I did I know it won't be a happy camper.
Well better go.
Take Care, have a good day. :D
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 04, 2011, 08:41:28 PM
Hi Rk4,

Sounds like you are ready to go on Thursday! I will, of course, be thinking of you, supporting you, and waiting for your post-op status reports.

I had PT again today with my new PT at my OS's office. I had a very swollen, painful knee when I arrived today, so things went just horrible. They did not do a lot of the exercises planned, due to the shape of my knee today, but they did bring in the large exercise ball. They asked me to put my feet on the ball, and lift my hips off the table. Immediately, my knee locked. I had to force it out of the lock, and it made such a loud pop, it could be heard three tables down. It actually brought tears to my eyes, but my PT did not seem to think it was a big deal, and told me that it would happen for quite some time. They put the bio-feedback leads on my quad, and when my muscle was completely relaxed, the monitor kept jumping all over the place. It would go from 6-2,000 without me contracting the muscle? Very odd. The PT said that I need to work on relaxing my quad. It is hard when I have been guarding my knee so fiercely for 2 years to just relax it and let him do deep tissue massage on it. Needless to say, I came home in a terrible, depressed mood, and my knee is just throbbing since it locked up. I am not a PT or an OS, but it just does not seem right to have it lock that way. I did rock back and forth on the bike today, with my patella grinding away.

I have read through so many post-op diaries, and this just does not seem right in comparison.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 04, 2011, 10:02:27 PM
Oh Annie,
I am so sorry you are having such a horrible time, unfortunately your OS didn't connect all the work done on your knee with the scar tissue issue.  You may have to find yourself a specialist in the AF field to help you get it sorted out.  Maybe it is time to start looking for one so you don't just go round and round.  Know my thoughts and prayers continue to travel your way. Hang in there I can feel your total frustration. :(
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on February 06, 2011, 01:44:13 PM
Annie, how you describe your knee grinding, sounds like mine. I have had all the scar tissue released, it was scarred down over the patella tendon region, my OS released it but couldn't remove it as apparently I started bleeding into the joint so he got of there quickly. I'm 2 wks post op and everytime I bend or straighten my knee there is this horrible audible grinding sound and pain. Sometimes it sticks and hurts so much, I have to force it over that point to get relief. It feels like my patella is getting hooked up on some scar tissue. My OS said all the noises and feelings are the scar tissue and patella rubbing on each other. It's horrible isn't it.. mind you, yours sounds worse than mine.. I feel for you, its not nice at all. :'(
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 08, 2011, 06:00:22 PM
Hi Kat,

Yes, this just stinks. After PT Friday, and my knee locking and popping, I was cursing PT all weekend, since it caused such a horrible increase in pain and swelling. I had PT yesterday, and told them how bad the weekend was, and they scaled things back, and did not ask me to attempt the bridging exercises again. I actually saw a different PT yesterday, since the guy I have been seeing was off, and she was much more informative, and open to a conversation that was more of a give-and-take. The guy I have been working with the past week or so allows very little patient input, and I am not happy with that. No one person has all the answers, and he really is not familiar with all the irregularities of my knee over the past 14 months. For some reason, I am lacking confidence in him, but I cannot put my finger on it. His bio is very impressive, he has multiple degrees, including a Doctorate and an MS, but something is just not clicking with me?

How is your knee holding up Kat?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 09, 2011, 01:53:02 PM
Morning Annie,
Hope you have a good day.  :D
I wish there was something I could say or do to make this better for you but I am as helpless at fixing this as you.  :'(  Know that we all care and are here to lean on.
Take care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 09, 2011, 02:09:44 PM
Hi RK4,

I am so glad to hear from you. I have been thinking of you all week, hoping to "see" you here before tomorrow (Thursday). I want to wish you luck on your surgery tomorrow, and let you know I am thinking of you. Will you be starting a post-op diary?

Please let us know how you are doing post-op.

All my best to you.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 09, 2011, 11:47:08 PM
Hey Annie
Thanks for the good wishes, need all I can get. I can't believe I am doing this again, the first time was a real nightmare. I didn't have much help as my better half farmer was still out in the field.
You will be able to find me up on emergRN's thread Smillie and I hag out there with several others.† Seems to be where I feel most comfortable.
I will personally keep you posted here when i am able.
Thanks again, I hope your DR is finally realizing he doesn't have things under control and sends you to someone who can help.
Take Care till I can get back here.
Surgery is 12:00 noon.
Rk4 big hug† ;)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Melissa S on February 10, 2011, 06:11:01 AM
Good luck with your surgery RKnees!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 11, 2011, 04:38:33 AM
Hey Annie,
I am still alive, pain off the charts though. :'( :'( :'( Thanks for the prayers and good vibes, definitely necessary.
Take Care of that knee.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 11, 2011, 03:32:50 PM
Hi Rk4,

I have been thinking about you, and am grateful you posted a note to let us know you are out of surgery. I am so glad you made it through the surgery, but I am so sorry about your level of pain. Are you home now? I hope you can get the pain under some control. Please keep me posted on your status, and surgery details when you feel up to it.

Sending prayers and healing vibes your way.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 12, 2011, 12:09:45 AM
Evening Annie,
No was home within 7 hours of surgery.† Treat them and street them.† Our hospital always has over crowding issues and some surgerys my OS was doing were cancelled for that very reason yesterday. Feel quite crumby tonight, have a fever and still having trouble getting a handle on the pain..
The knee was in poor condition which I already knew. He cleaned it up the best he could, did the LR, and Trillat (TTT) The computer screen is doing my head in I have a head ache and my eyes kill.
I will have to say goodnight.
How is that problem child of yours doing? What is happening with PT.† I know this has also been a long hall for you and I do get it.
Take care,
Prayers heading your way as well.
Rk4 :(
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Kat_Walk on February 12, 2011, 04:12:46 AM
Hey Annie,

I def. think patient input is important in regards to PT. Otherwise how do they know if they have pushed too much at the last session, or if a certain exercise aggravates things?! My PT is good like that. He always checks to see how I pulled up from the last round, and how things are feeling overall before he does anything for the start of a new session. I have noticed you lovely US girls seem to get treated by a few PT's in a clinic. It's different here, my PT is mine! hehe! Well, short of him being sick.

I think you are going through way too much and it is time to refer you to an AF specialist, or even a rheumatoid specialist (if heard about this on the AF boards..), you can't just keep chasing your tail and living in pain. Something has to be done. I lived this nightmare for 5 months and I basically pushed and pushed until they did something, I refused to accept the "wait and see" approach, it just sucks!!

Thanks for asking after me, I have had an amazing few days. It has really floored me. I go to church every week, or at least I try (hadn't been for nearly 5 months til recently) and as crazy as this may sound (and I know to most it will sound wacked out!) but someone asked if they could pray for me, as it was obvious I was struggling on the crutches. I figured it couldn't hurt, so I said yes, over the past few days, it has improved more than the whole 5 months since the original TTT! Maybe you need to get someone to pray for you Annie!!  :)
The grinding and locking is still there but mostly when I am not weighting on it.. strange I know, its when the PT lifts my leg up and bends it then it crunches and hurts, but walking is ok. I finally ditched the crutches 3 days ago... Hallelujah! hehe, I'm getting all churchie on you.. LOL!

I'm keeping you in my thoughts and prayers.. And you too RK4, sorry to hear you are having a horrible time. It really is a nasty operation. Glad to hear you made it through the surgery safely.

Kat xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 12, 2011, 02:57:41 PM
Hi Kat and Rk4,

Rk4: I am so sorry about how awful you feel; I completely understand, and hope you are able to get the pain under control. I remember having a fever after my TTO (the 2nd and 3rd days). I began to panic, thinking I had an infection. My OS assured me it is normal after that surgery, and it did go away after the 3rd day post-op. I always feel just dreadful when I have a fever (makes my eyes hurt, my head ache, and my body ache), so that coupled with the surgery pain was terrible.

I am sorry your knee was such a mess; hopefully your OS was able to do enough to give you some relief. Seems like all of us are getting TTT's in an effort to prolong the inevitable TKR, which is likely in many of our futures. My OS gave me the option of TTO or TKR, and, after much deliberation and conversation with my OS, I decided on the TTO. Now, I am wondering if I picked the wrong path, but time will tell.

Please keep me updated on your progress.

Kat: I also believe that prayer can help. I had so many people praying for me during my cancer, and it was so comforting. I do have a lot of prayers coming my way, and it makes me feel hopeful.

PT has  been very rough. Same old routine: Go to PT on Monday or Tuesday, which flares my knee up. Go to PT on Thursday or Friday with my knee flared up from earlier in the week, which means we are limited with what I can do. My knee gets so bad that it takes my entire weekend with my leg elevated and iced to get the swelling/pain down enough to start all over again the next week. It reminds me of chemotherapy. When I had chemo, it would make me so sick, I could barely stand. I would be so sick for about 12 days, which only gave me two decent days before it was time to start the process all over again.

My PT asked me to go back on two crutches for a while. I am not happy, since it feels like taking a step backwards, but it is what it is I guess. When I was at PT Wednesday, I thought it might be a good idea to make an extra appt for Friday. When Friday morning came, I was so swollen and painful that I called and canceled the appt. My knee just cannot handle three days of PT in a week, and it is disappointing.

My knee is still catching, sticking, and locking daily. I also have painful grinding under my patella that worries me a lot.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 12, 2011, 04:51:37 PM
Morning Annie,
I don't think you made the wrong decision. If you are having this much problem with scar tissue you would be in even worse shape with all the foreign knee parts sticking together.
Hang in there girls this is a marathon not a sprint.  After my first TTT it took close to a year to feel better. I still have days where it feels better than the week before. It just really takes longer than the OS says.  I think they all need to have one done on them then they would be way more honest about recovery time.
Well my eyes are killing me time for some sleep. Also very stoned.
Take care,
Positive thoughts coming your way. Hang in there you CAN do it.  ;)
Rk4 8)
excuse the errors.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on February 13, 2011, 04:15:17 AM
Annie,
I'll second what Rknees4 said...if you have scar tissue issues, a TKR doesn't mean those issues go away.   I'm sure there are plenty of TKR people that developed AF on the AF boards.  My only WC claimant that developed AF, was a TKR patient.   I know it seems easy to think that you should have gone the other way with your surgery choice, but it's not that simple unfortunately. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 13, 2011, 08:36:38 AM
Hi Annie it is 3;35.Am, up in pain so I thought I would say Hi.  Try and have a good one.
Rk4 :-\
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 13, 2011, 02:51:12 PM
Hi cdubb and Rk4,

Rk4, I am so sorry you were up so late with pain. I hope you were finally able to get some sleep this morning? How are you doing today?

I know a TKR would not be without the same scar tissue problems, I guess I am grasping at what if's right now. I have noticed that the more my knee catches and sticks, the more the back of my knee feels like it has been kicked. I do have a Baker cyst, and it is visibly much larger the past couple of weeks. I always think of the Baker cyst as a symptom that something is wrong inside the joint, rather than a condition on its own. My knee suddenly got so painful yesterday, I was just about in tears. It has become difficult to put weight on it, and my medial joint line is horrific. I had my leg elevated last night, and needed to get up to use the restroom. When I put my leg down, bending it, I got such a horrible pain across the top of the knee. It was one of those pains that takes several seconds to build, and it felt like my knee was lanced with a hot poker. I actually sat there expecting to see blood begin to pool on my sweat pants. I am not sure what the heck happened, but I imagine that some scar tissue got pulled.

My PT told me that only .5-1 percent of TKR patients actually develop scar tissue like this, and the percentage is even lower for post-scope scarring. I am in that tiny percentage of patients who develop this devastating condition. I told him that I feel a certain amount of guilt in not getting better, and continuing to have these problems. He said that it is not my fault, or anything I did, but rather, just biology. Even with his understanding that scar tissue is the likely main culprit, I am not sure he truly understands how to treat my knee, and is experimenting. He had me loading my joint in a big way on Wednesday, and it sent me into a tailspin with swelling and pain. I still have not really recovered from Wednesday's PT session. When I go to PT on Tuesday, I am going to have a talk with him about how bad my knee has been post-PT. I cannot keep doing things in PT that cause more swelling, which leads to more scar tissue. My new PT has several college degrees, including a Doctorate of PT, and he teaches PT at a local college. However, due to the rarity of my my condition, I am not sure his approach is really helping me.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 13, 2011, 04:33:01 PM
Hey Annie,
Finally got some on and off sleep.† Just waiting on my mega 11:00 am meds to kick in so I can have my nap. It is just amazing how surgery can take all the starch out of you isn't it. I feel your pain Annie. :'( :'( one for me one for you. ;) i think the bakers cyst is an indicator of meniscus problems The scar tissue issue probably instigated more problems within the joint.† Definitely a question for Phd Pt† ???
well my world is spinning again so I will say bye.† will be sending good vibes your way.
Take care Annie.
Rk4 8)
excuse the errors just to tired to fix them.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on February 13, 2011, 04:41:43 PM
Annie,
You really need to get to somebody who deals with these scar tissues issues on a regular basis instead of somebody who just dabbles with it.  I believe that there is a pretty specific targeted approach surgically and PT wise to get optimal results. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 13, 2011, 10:37:11 PM
Hi cdubb,

Yes, I agree, and plan to talk with my PT on Tuesday. I intend to mention that a trip to an AF specialist looks like my only option at this point. I feel like nobody is telling me what they think. I have a feeling they realize this is not going well, and likely will not improve. I just want someone to tell me that, so I can make some tough decisions. I think my prognosis is guarded at this point, and I hate being the one in the dark about all of this.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 14, 2011, 05:27:35 AM
Evening Annie
thought I would catch you before I sign out for the night It is 11:23 pm and waiting on my 11 oclock meds again. The knee is just a totally swollen sore mess. Did the old misstep on it tonight which of course sent the pain coursing through the whole leg. Just can't seem to win today. Between the post op blues and the pain, it has been a reallly hard day. :'( :'( :'( :'( I am not a cryer to start with so it makes it that much harder for me. Finally can feel the meds kicking in.  Tried to run minimal amouts as my OS doesn't do refills so Have to use carefully.  Hope my GP takes pitty  me again this surgery and gives me a few extra's even if it isn't top of the line stuff.
Well I am rambling i must be getting stoned. :P  The knee is starting ache a little less.
Take care Annie, know my knee is having sympathy pains for it' s friend.
Rk4 and I am not fixing the errors. ;)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 14, 2011, 11:03:01 AM
Hi Annie

Been following how things are going. I'm so sorry that there isn't any real improvment. I think you're completely right not to be pushing things in PT that are setting of a chain reaction of pain. I also agree that you need an AF specialist to assess and decide on your next course of action. If anything else surgical is done then you need someone who can work within the window of opportunity to make sure you deal with scar tissue and get the best out of any future work that may be done. It does sound like your current team aren't quite "on top" of things and in fact, you are having to do the bulk of the advocacy work and research. I have evry faith you'll find a way through this, but you need the right support and approach from the medics to get this knee back on track. An AF specialist would be the next logical step to my untrained brain. I am guessing the emotional and psychological side of this whole nightmare is probably even worse than the physical side. As you say, the prognosis is guarded but isn't it better to KNOW what your options are so you make an informed choice rather than being kept in the dark. I always think its so easy for doctors who see you for an hour (if you're lucky!), give you some advice then toddle off to their happy knee normal lives whilst you pick up the pieces and deal with the daily pain. I know they don't choose to be that way. but clearly only the patient has to LIVE with the effects of their decisions.

I guess I'm just saying that hang in there and fight for a proper AF specialist to look at this knee now. You are young and there must be stuff that can be suggested to get this knee more functional and in less pain. IF a TKR is suggested then you must get the right post op support to make sure it works. I know I will need replacement parts one day, and it is a sobering thought.

Sending much love and hugs and just to say I am following all your posts - been busy with in laws visiting here and work getting busier so this is my first chance to write a proper reply. You are often in my thoughts when i check up on KG.

Hugs xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 14, 2011, 04:29:08 PM
Hi Rk4,

It is so unbelievable to me that your OS would perform such an extensive, painful surgical procedure on patients, and not give any pain medication refills. It almost seems cruel to me, to make you have to go to your GP for additional pain relief (if needed). I think the OS's should see it through to the end, and not push pain control off on another physician. This approach is making you so careful with your prescription, you are not likely to get your pain under control, and keep it under control, as you are trying to ensure you have enough to make it last for a while. I sure hope you can get your pain under control, and have a better day today. Being in constant pain brings us down emotionally, and does not promote a good outcome. My OS firmly believes that pain control is an important aspect to recovery.

Hi Lottie,

It is so good to hear from you. I laid awake too late last night with my knee issues running through my mind. I think I am just plain mad now about all of this, and am tired of running around in a circle with this. I have an appt with my PT tomorrow, and want to have a talk with him about all of this. He told  me during my first visit that despite all my scar tissue problems, he would begin me on the standard TTO protocol, and see what needs to be adjusted from there. I do not think he fully understands the complexities of my knee problems, and how it is anything but "standard". He has a Doctorate degree, but clearly is not well-versed in issues with scarring. He told me that all of the TTO's my OS has performed have been successful, and that makes me hopeful. However, I think what he is missing is the fact that although the actual TTO may be a success, the scar tissue will continue to cause me big problems.

Funny, my husband took pics of my knee at different points over the past year to take to my OS and my PT, showing them what is happening to my knee after light activity, and he took a couple of pics over the weekend. The current pics look absolutely no different than the pics taken prior to the TTO. Although I would still expect some post-op swelling, it seems alarming to me that nothing has really changed at all.

My knee still feels like a rusty hinge. It moves like a door that has been hung slightly crooked, and a few times has made a sound that can only be described as bone banging into bone. Very odd.


Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 14, 2011, 06:21:02 PM
Hi Annie

I think that unfortunately having lots of academic qualifications doesn't always equate to someone being a good practitioner and adapting their knowledge to the individual. It also sometimes means that arrogance can creep in and perhaps that person doesn't ask for help when in fact they don't know what to do next. I work as a psychologist and many academic geniuses I have come across in my career don't have a clue about how to make an anxious, scared, upset person feel at ease to get the best out of them. i work predominantly with people recovering from brain injury and trauma, and all the books in the world won't teach you how to gain trust and help them relax so you can find out what they need. PT is different as its more physically based, but the basic client-therapist relationship is the same. It sounds to me like you have little faith or trust in your current person which is not good for your knee's health. I think getting mad about things now is a good move - channel that anger into finding someone to fight your corner. You deserve it. Your TTO probably IS a success, in orthopaedic terms - but it isn't getting chance to work properly because of the scar tissue and because that in turn stops you doing anything to strengthen the knee and actually let the new alignment take effect. HOW frustrating. I wish I could wave a wand and get that darned scar stuff out for you.

I'm off for my Euflexxa shots tomorrow. I had one in my worse left knee last year and I think it helped. I certainly cut down on pain meds and was able to cycle and hike more without pain afterwards. So, I'm having both done and also have some questions for my OS about general stuff. I think my patellar tendons keep getting inflamed and I want him to have a feel! I have to take the train to London to get them done, so will be packing my ice packs in a sandwich box to stick on the knees on the train home, and probably treating myself to a large vanilla latte and some carrot cake for managing four shots (two in each knee as he injects local into the joint first, which is just awesome as the knee suddenyl feels NORMAL!).

Take care Annie and keep us posted on the PT visit,

xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 14, 2011, 08:08:13 PM
Hi Lottie,

I hope your shots help alleviate the pain in your knees for a while, and everything goes well tomorrow. Just before follow-up appts with my OS, I also begin compiling questions for him, and I write them down. He is typically running behind on his office days, and a three-hour wait time is not unusual. If I do not write things down, by the time I actually see him, I am ticked off from waiting, and tend to forget what I wanted to inquire about. In addition, showering, getting ready, an hour ride to his office, and sitting for three hours is usually more than enough to cause a big relapse in swelling/pain, so my OS appts usually end up causing a situation that takes several days to get back under some sort of control.

I have been doing more research, since it seems like my patella tendon is scarring down. This is especially worrisome, since it was just moved to the new position in November, and I worry about scar tissue ruining what was done.

When I was in PT last week, I began to pose some of my questions/concerns to my PT, but another patient interrupted us with questions, and just stood there conversing with my PT while he was working on my knee. I really do not like the setup in this PT center. All of the patients are lined up on tables, and the gym is a few feet away. If I have something to discuss with my PT, he gets interrupted continuously, and everyone can listen to our conversation. My local PT office has rooms for patients, and a gym area. If I want to speak privately with my PT about my progress, or have questions, nobody interrupts or listens to our conversation. I am always leery about medical situations that allow other patients to listen to patient conversations with medical personnel, but I am probably the minority on this issue. By the time the patient who interrupted us finished his lengthy conversation, which included discussing his inability to sleep at night and the Superbowl, my PT was finished working on my knee, and I lost track of our conversation. I get the feeling my questions are only half answered, and not entirely welcomed.

Again, good luck tomorrow Lottie, and keep my posted on your progress.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 15, 2011, 01:16:51 AM
Hey Annie,
The OS worries about addiction as he does use the powerful stuff.  I personally don't blame him for the approach.. I live in the oxy capital of Canada.  There are more people per cap addicted to the the stuff than you can imagine.  My best friend works for my GP so I am almost gauranteed appropriate pain control.
Went to my first Pt and had 105 degreeflex.  Not to shabby considering they busted my leg 4 days ago. I will probably be stuck there now that my knee is reaching maximum expansion.(Huge) Pain is slightly better tonight but is toasty tonight. Need more ice.
sorry about the rude people at PT not nice to bud into other peoples conversations. :o
Take Care, Annie, will catch you up tomorrow.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 15, 2011, 06:37:18 PM
Hey Annie,

How did it go today? How rude that people butt into your conversation at PT. I blame the PT most of all, he should firmly and politely tell the other person that he is treating YOU at that time and listening to your concerns. He can always catch up with the others next time. Perhaps you should go corner him when he is treating that person next time and quix him?!! Its really not on, you need to have some space and time to ask questions. I think sometimes professionals get a tad worried when their patients pose questions that are tricky. They seem to duck the issue when in fact, an honest answer even if it is "I don't know but I'll find out" is way better. Being fobbed off is just the worse thing ever. I hope today was positive and the knee is calmer. Let us know.

I had my shots - no issue apart from the right knee has a tighter tilt on the kneecap and wriggling the needle in for the local was a tad ickier but hey, in the scheme of what people deal with it, it was a breeze. I like the OS that does them, very down to earth and answers my questions. He doesn't think I have tendonitis although with tracking issues the patella tendon takes a bashing so it probably does get a bit upset at times. We talked about PFJR (not there yet!) and a scope to tidy things up but he feels given how I'm functioning we should just carry on conservatively. I like that approach! I don't think he'd find much to tidy up, and something like a TTT wouldn't help me as I have damage medialy and laterally and it would simply load up a different area possibly with worse outcomes. So, fingers crossed that the Euflexxa helps. It usually peaks after about 4-5 weeks. So watch this space.

Sending hugs Annie, and hope you're OK

xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 16, 2011, 04:19:24 PM
Hi Lottie,

I had a long talk with my PT yesterday, and feel a little better about how we are going to proceed. At first, I arrived, and the assistant asked me how I have been, and I told her that my knee is just terrible, and the exercises we have been doing is causing too much pain and swelling. She went right ahead and asked me to do all the same things. I simply refused to do a couple of things that are causing me too much pain, and I was getting right down disgusted. I work directly with my PT at the end of my session, and laid it out. I know he reviewed the op report for my TTO, and the pics, so he is aware of where my extensive scar tissue was found at that time. I told him that the report only represents one snapshot in time, and he would do better to review all of my op reports, which will give him a much more clear picture of my knee. I mentioned to him that I had a scope six weeks prior to the TTO, and I was so full of scar tissue, it was just everywhere. Six weeks later during the TTO, the scar tissue had returned in many of the same places, and was already hard, fibrotic scarring. He did say that he had a patient once that also built up scar tissue so fast, he would be scarred down within a week of surgery, and it is a challenge to combat this issue. I also have so much bone pain all of the sudden. The bone pain begins at the TTO site, and travels down my shin about 6 inches. This really has gotten so bad, weight bearing is terribly painful. The bone pain has worsened significantly since joint-loading exercises were added last week. He said that it is likely just some irritation, but if it continues, he is going to have me get a quick x-ray, to be sure I do not have a stress fracture.

My PT tried some taping yesterday, in an effort to alleviate the pressure on my patella tendon (which has hardened up terribly). When I started for home, I noticed that every time I slightly bend my leg, the tape was pulling on my shin, and causing horrible bone pain. I ended up taking the tape off this morning, and will tell him how bad it hurt my bone at my next session on Friday.

I was armed with pictures of my knee after PT, and the pics really helped him understand just how bad my knee was over the weekend. He asked me which anti-inflammatory and pain meds my OS has me taking, and I told him. I mentioned that I meant to call the PA yesterday morning for refills, and he immediately ran over and got the refills called in for me, so they were ready when I got to the pharmacy.

At the end of my session, he does deep-tissue massage, in an attempt to break down some of the more shallow scar tissue. It hurts like hell, and I normally tense up my knee during this horrible process. He told me that I need to try and relax the muscles, but it is hard when someone is hurting you. I told him that I would not relax and let someone hit me in the head with a hammer either, and he said that I made a great point, and he had not thought about that way. All in all, I think we had a good long talk, he understands some of my concerns, my long journey with this, and I feel a little better about him.

We will see how Friday goes.

I am glad your shots went fairly well. I will pray that you get some relief from the shots, and can hold off a little longer from the PFJR. I think it sounds like you are making good choices regarding treatment and surgery. If both your lateral and medial sides are being worn out, a TTT may make matters worse. I was a little alarmed that my OS shifted forces in my knee to the medial side, when that is the side most affected by joint-space narrowing. Since the TTO, I have so much more pressure and pain on my medial side, and it makes me wonder how quickly the surgery will cause me to need a replacement? Please keep me posted on how the shots work for you. I have tried synivisc in the past, but it did not help me at all. I kept building up fluid, so they kept removing the fluid, giving the shot, and the next week, I would have another effusion to deal with. When you got your shot, did your OS have to remove any fluid from your knee?

All my best,

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 16, 2011, 05:54:24 PM
Hi Annie

So good to hear from you. It sounds like FINALLY your PT has an understanding of what is happening and whilst he might not quite have the solution at least he now appreciates the sheer hell you've been through and are still going through. That can only be a good thing. I have to say that taping never helped me either, my first PT did it to unload the tendon and help tracking but I think it actually placed more pressure medially and just made things hurt more. She also had the wonderful idea of stretching out my lateral retinaculum by deep massage and manipulation - OMG that was a BIG mistake with Grade3-4 defects and the knee protested in a big way. I moved to a different PT the next year who was simply wonderful and took me back to basic strengthening of ALL the leg muscles, no nasty squats or anything, but lots of glute work, hip work, stretching and gentle quad building. She was wonderful and her army of exercises still form the basis of my leg training now. I actually think she saved me from rushing into a scope with terribly weak leg muscles and a lot of inflammation. Anyway, back to your session. I wonder why the bone pain has started up so suddenly? I hope it isn't a stress fracture on top of everything else. I wish I could say something of any use to help, but I can only say that i really hope things improve even a little bit soon. This must be so frustrating and exhausting.

I saw three OSs in my quest for knee relief. The one I see for the shots was actually the most traditional of the three, and said that cartilage repair technqiues, like MACI etc are good for isolated lesions but for a knee with early wear and tear its pretty pointless. His view is keep the knee as strong and healthy as I can. and when the time is right we'll talk fake parts. I think from his view yesterday he feels that the knees are generally pretty decent, yes the patella is wearing both sides but my scans show the bone shape is still intact (I have an apex and dips and things that are important apparently even if no cartilage covers them!) and although the trochlear grove is showing signs of wear I still have "slippery stuff" as he calls it. So, we shall plod on. I am in no rush for a PFJR and I respect that he doesn't try and force me into a scope for the sake of it. I think I am lucky that at the moment activity doesn't create pain at the time - I just get the diffuse ache afterwards if I overdo things. Then its time for coffee and a hot cross bun, like now!

Forgot to say that no fluid was removed, he was very pleased with the look and feel of the knee apart from the slight tenderness on the patella tendon which I need to be mindful of.

Good luck on Friday, I shall be thinking of you, Hugs xxxxxxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 16, 2011, 07:31:31 PM
Hey Annie,
Good to hear you had a chance to talk to PT PHd. I hope he is doing some reading up on this so he can better help you.  Sorry about the pain.
Me just the usual, pain and soreness.  Tired from lack of good sleep. Well take care, Annie
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 18, 2011, 04:06:55 AM
Evening Annie
It is exactly 7 days since surgery it has been a 7/8/9 kind of pain day.  Woke up this am it was 7 Went to PT bent it to 125 degrees it was a 9 bordering on 10, now it is back to a 7/8  I was hoping it would quiet down a bit but not to happen.. Looking through my scrawls from alst surgery the pain levels were very similar only difference was the ROM took  4 weeks to get to 120 I just keep  thinking about you guys with scar tissue and I want the knee bent before it happens. soi I am just reefing for all its worth.
Well Girl I am stoned silly and drooling on the keyboard and my eyes are bugging out so I will say good night
Hope you have a GOOD day tomorrow. :)
Take Care, will be thinking of you for inspiration to keep bending 8)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 18, 2011, 03:08:05 PM
Hi Rk4,

I have been thinking of you, hoping you are doing well. Bending to 125 degrees this soon is extremely impressive....Excellent job! You are only a week out from your surgery, so your pain levels are not surprising. Please do your best to rest, ice, elevate, and take your meds on schedule. Try to break the pain/swelling cycle as best you can.

I have PT today (yuk!), and am not looking forward to it at all. I had several horrible bouts of pain yesterday, seemingly from nowhere. I have a big increase in bone pain this week, and that is worrisome. I also have horrible sharp pains in my medial joint line, and the back of my knee is VERY swollen and painful. Honestly, if this is how my knee is going to feel, I do not think I am going to be able to manage the new alignment. I am sure a lot of this is in response to the scar tissue, but it stinks nonetheless.

Please keep me posted on your progress, I am sending healing thoughts your way.

Lottie: How are you doing since your shots?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 18, 2011, 03:45:23 PM
Hey Annie,
It is a downer day for me.  Lonely, bored and in pain not a good combo. :'( Just about out of the heavy duty pain meds.  After the weekend will have to take something less effective. :'(.

Sorry the knee is being BAD, Scar tissue can cause major havoc on the knee joint.  Keep reading and start looking for an AF specialist.  you may just have to wait this out and clean out the scar tissue and then start rehab especially designed for your knee probs.. Your OS showing any humility by getting you someone who can help?
Will be thinking of you also, and wishes you less ppain as well.
Take Care Annie.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 21, 2011, 06:35:16 PM
Hey Annie

How did PT go on Friday? Sorry I've been AWOL, had a bit of a weekend as my 101 year old Grannie was taken into hospital, she has a bad cough and chest infection and things are a bit bleak. But so long as she is comfortable we have kind of realised that at 101 you're doing really well! I hope your PT brought some positive things. The pain you had last week sounds horrible. The bone pain increase must be scary, and I can only imagine this is all SO frustrating. I guess don't dismiss the new alignment yet,as the knee probably isn't getting chance to work with it properly because of the swelling and the possible scar tissue. It probably doesn't know which way its meant to be moving. If only you could get it calm, swelling down and then start building up some strength. its a vicious circle isn't it.

I'm doing OK since the shots, I know it will be several weeks before I feel a benefit if at all. On the last one in the left knee i think i got peak effect about 7 weeks after. My right knee (the one which has never been scanned but makes all the same noises and signs as the left one!) has been sore, he struggled with the joint line behind the patella as its tilted more and I have bruise and general soreness. Its nothing in the grand scheme of things, and its been clicking loads. Clearly my loose bodies are on the move! I've been cycling and stuff to get the new fluid moving about. Patella tendons feel really tender, so they are getting iced and I've got some tape on the right one to lift the pressure off the insertion. i don't mess with trying to shift the kneecap but taping the insertion upwards for half a day seems to help me. Honestly, we could all be PTs or OSs at this rate...I sometimes think we understand more because we live with it...

Let me know how things are going. I hope this week brings some knee improvements for you. And Rknees4, I hope your bone pain is reducing too!

Lottie xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 21, 2011, 06:59:32 PM
Afternoon Annie,
You have been on my mind so I thought I would pop down as see how you were.  I guess everything is the same as you haven't posted at all.
Will keep you in my thoughts and prayers girl.

Lottie,
Thanks for the concern still hurts more than I would like but it has just started to scale back a bit.  I think today the LR is bothering me more than the TTT site.
One day it is one thing one day it is another joys of knees being chopped apart and put back together.

Take Care all.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 21, 2011, 07:12:35 PM
Rk4 - One day at a time indeed! Knee woes definitely make you live in the moment - but the moment often isn't quite where you'd like to be! Glad the pain is scaling down a bit. I had a LR suggested to me last year, I have patella tilt but my TT insertion distance whatever is OK, plus I have medial defects so shifting the patella with a TTT wasn't seen as being the best plan for me. I think its funny when the OS talks so easily about a LR "just a little release of the capsule via its anchors to help the knee move freely". Then the PT I saw said "LR - ouch, that'll be SORE!!". So, you know what to expect I guess having been there before. Hope the mood is lifting. Every day passed means one day closer to better knees.  ;D

lottie xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 21, 2011, 07:23:05 PM
Hey Lottie
I know mine will never be a hundred percent painwillbe my friend now for life.  My OS was honest in that respect.  He will say it will probably still give you problems because of the ware  already done. At least he didn't paint a perfect picture which makes it a little easier to accept the fact.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 21, 2011, 11:44:08 PM
Hi Lottie and Rk4,

So glad to hear from you both.

Lottie: You are right, things are just the same here. Friday PT was another mess. Tuesday's PT session started another swelling attack, so PT was limited on Friday. My regular PT was at a conference on Friday, and the gal I worked with did not even want to do the deep-tissue massage due to swelling and fluid in the joint. We also skipped the full weight bearing exercises to give the joint and bone some rest time. Oddly, the LR site (done last year in April) has swelled back up. It feels like a little lump is in the area, and when touched, it reminds me of having a lumpy bruise (extremely tender). It bothered me so much (just like it does now) before the TTO, but my OS cleaned out a bunch of scar tissue from the site twice since the LR, and now it feels the exact same way yet again. Lots of bone pain, joint pain, clicking, catching, sticking, stiffness, and the back of my knee is very swollen. I actually was scheduled for PT this morning, but we got about 10 inches of snow and ice overnight, so I had to reschedule. Driving an hour in this mess was simply not going to happen. Unfortunately, when they rescheduled me, they put me on for Wednesday and Thursday. My PT understands that two days in a row on my knee is not a good move. I asked to at least have one day between sessions, but the girl who scheduled said that my PT is not going to be in on Friday. She is stuck on me working only with him, but twice he has been gone to a meeting or conference, and I worked with a different PT. He has everything laid out, so it should not be an issue to have another PT oversee me on Friday; I will speak with him about it on Wednesday.

Rk4: I am sorry you are still feeling poorly. Although I am glad you OS did not pull any punches, telling you right away what to expect post-op, it stinks to be told that pain will follow you no matter what surgical intervention is undertaken though. I certainly understand the pain of a LR; mine is still giving me problems (done back in April), but fibrotic scar tissue keeps reforming in the area, and seems to be making the lateral side tighter than before the LR in response to the scarring.

Yesterday I decided to make homemade meatballs and spaghetti sauce....big mistake. It is quite a lengthy process, and a quarter of the way through the meatballs, my knee was getting pretty bad. I had already started, so I finished them, and made the sauce, but by the tim:(e we ate, my knee was as big as a grapefruit  :'(  My mom was totally ticked off at me to making them in the first place. I sometimes do not think anyone understands how boring and frustrating it is to sit around day after day, month after month with this stupid joint. I just want to do some normal, every day things just like everyone else. She acted like my swollen, painful knee was of my own doing last night, since I got out of my stupid chair to try to do something for a change. Very frustrating. I am damned if I do, and damned if I don't.

Annie

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 22, 2011, 07:20:18 PM
Hey Annie,
Good for you and the meatballs. :D  Sometimes we just have to over due just to keep our sanity.  No different than me and the painting.  Instead of looking at the grapefruit knee as somthing bad, try and look at it as an extra big accomplishment, that for once justifies the pain and agony the knee is in..  I hate just sitting around hurting sometimes just have to go for the gusto and ice elevat and pop the pain pills the next few days. :D  It keeps us and those around us sane.  I am proud of you. ;) But sorry for the aftermath. :-\
Take Care,
Rk4 8)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 22, 2011, 08:56:18 PM
Hi Rk4,

Thanks for the vote of confidence about the meatballs (wish I could have shared them with you). My sister is moving, and I have been banned from helping. Honestly, since my PT put me back on two crutches, that would be a little tough anyway, but I drove over to the new house today and kept her company while she did some unpacking. A change of scenery seemed really nice. We went through some old pictures, and it brought back some really great memories.

How are you holding up?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on February 22, 2011, 09:50:39 PM
Change of scenery is indeed good for the soul.  This recovery is such a long process that it is important to keep one's spirits up. 

I think it is also helpful to push it physically once in a while.  yes, there is swelling and pain afterward, but some of that is required to move forward. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 23, 2011, 09:49:23 PM
Well, I just returned home from PT, and, as I already knew, the fluid in my knee has been increasing over the past week, and my PT said it will need to be aspirated.....again. This will make 19 times that my knee has been drained, and it just keeps coming back over and over again. Things are not going well, and the area below my kneecap is hardening up. I also told my PT that I have a hard, long lump in my lateral side, at the upper portion next to the patella, which he could also feel. I feel like "here we go again!", and I am feeling helpless to stop this process.

Anyone else who has had a TTT, is the area below your patella hard, or is it pretty similar to the other knee?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 23, 2011, 10:55:02 PM
Hey Annie,
Well I am bored out of my skull but still stuck on WBAT and it isn't tolereated to well.  :-\  Wish I could help with your question but no, other than the hard lumpies along the lateral side.  I have a few of those but have managed to smooth them out over time with lots of rubbing on Knee fix 1
Went to PT  yesterday and managed 134 degree bend that will probably be my max.  But paying big time today for it. Swelled like crazy and hurts alot more than I would like.  Pain med change probably isn't helping that. :'(
Annie one thing I have learned about the knee surgery merry go round it is a crap shoot. But in your case the OS should have known he would run into problems especially with the scar tissue issue.
Well got to go eat stomach is hungry.
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on February 23, 2011, 11:11:23 PM
Oh no!  Not more aspirations.  I have never had that done. Hope I never do.  My husband needed it done after his scope many, many years ago.  I saw the nurse come in with that huge needle on a tray.  I asked my husband if he *really* needed me there.  Before the word "no" was out of his mouth, I was down the hall and hiding in the waiting room. 

I do have a firm, lump just below my patella on the lateral side.  I always assumed it was swelling that would eventually go down.  Since I no longer have swelling issues, but still have the lump, I guess it is not swelling.  Dunno.  I have no feeling on that side of my knee so it doesn't bother me. 

So sorry you having such a terrible time.  I keep hoping that one day, everything will click into place and you will see some improvement. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on February 24, 2011, 12:17:53 AM
Annie,
Sory to hear about your ongoing struggles.  As for the area below my knee... my TT knee has a very pronounced bump and almost looks like an Osgood Schlatter's bump.  It's quite pronounced.  My right knee fat pat is softer.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 24, 2011, 02:42:10 PM
Hi Everyone,

Thanks for your replies. I also have a bump below my patella since the TTO, but my OS told me before the surgery that would happen. It is not the TTO-made bump that concerns me. The entire area below my patella and the patella tendon are all hardened now. I have cording at the upper portion of the lateral side too, as well as the medial joint line area. Something is obviously very irritated since I am building up fluid yet again. Unfortunately, the areas that are hardening and have palpable cords are areas where I keep getting scarring. Of course, many of the areas I tend to harbor scar tissue are too deep in the joint to massage, and I fear they are scarred down again. I have past the 12-week mark now, and, the scar tissue will be hardening now, becoming fibrotic again.

Rk4: Did you get your meds changed? Are the new meds not as effective? I am so impressed with your flexion this soon out! I understand how bored you are; I am still bored most of the time. I always have a stack of books beside me to keep me company though, and my doggies are always clowning around, making me laugh. I believe I have read a couple hundred books since this nightmare began.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 24, 2011, 10:29:02 PM
Hi Annie

Nooooooooooooo I was gutted to read that the knee needs aspirating again. I was hoping to check in and read some positives this week. This darned knee just isn't behaving. You must feel so frustrated and also worried. The scarring down of the area under the patella sounds horrible and must be concerning. That is such a sensitive area isn't it. I've not had surgery but that area for me is the one that gets swollen and inflamed, and my fat pad is mishapen because of the trauma that goes on under the kneecap. Then your patella tendon gets yanked about, placed under stress and....things just don't get chance to settle down. Remind me of the next time you will be seeing your OS? Surely with you seeing his team of PTs but still having issues he cannot dismiss this. Have you got any chance to see an AF specialist to get the best solution identified?

I kind of laughed about the meatballs and then getting blamed for doing too much! My hubby always says the same to me when i decide to shovel snow, climb onto sheds, scramble down a bank and then get stuck at the bottom, try and run up 180 steps at a riverside stately home last year (I used to do that in my sleep - why not now?!!!). But you just need to feel normal don't you. I bet the meatballs were stupendous.  ;D  Sometimes you just need to cope with the pain after to feel you've stepped back into control.

Stay smiling. Your posts always show your spirit and bravery. I like that. You'll get through this.

Lottie, and hugs from the mogs xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 24, 2011, 11:10:15 PM
Hi Lottie,

I think I was sticking my head in the sand about the fluid, but it is increasing, so it is impossible to continue to ignore it. Yes, I am frustrated, yes, I am worried. I have an appt with my OS next Wednesday at 5:00, so that means I will not actually see him until between 7-8:00. He has been out of the office for the past couple of weeks, so I anticipate he will be running extremely behind yet again. He will waltz in tan and relaxed from his extended vacation, while I will sit there pasty white, with a swollen, painful, fluid-filled knee. We will be like polar opposites for certain.

I hope he has some answers and a solution. If I knew for certain what the course of action will be, I think I would be a little more settled with this in my mind. It is really tiring to hurt 24/7, and I am mentally, physically, and emotionally tired of it.

I wish I could have shared some of my fantastic meatballs with you Lottie; they were wonderful.

How are you doing?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 25, 2011, 07:03:10 AM
Hey Annie,
I hear you on tired of the pain. It can suck the life out of you. It is 2 am here and waiting on my pain meds to kick in so I can have a little more sleep before it is morning morning. :'(
Not feeling that great either.  :P  Had PT yesterday and 136 bend. I think that didn't help the leg.  TTT  site sure is giving me a run.  Hurts like crazy.
Sorry about the fluid build up and the need for another aspriation.
Know that I will be thinking of you.
Rk4 and someone get the truck off my leg and head :'(
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 26, 2011, 07:09:54 PM
Hi Annie

Just popping by to say Hello. Good luck with your OS on Wednesday. I really felt for you when you drew that mental image of him all tanned and relaxed and busy and you with the misbehaving swollen malfunctioning knee. Unfortunately however great the doctor may be, they don't have to "live" the journey and unfortunately, that means they never really get it. They may know their medical stuff but sometimes their whole appreciation of bummed out knees just isn't there. That whole 24/7 hurting is completely draining. I have not gone through anything like as major as your whole surgical nightmare but I look at pics of me when I got married, about 6 months before the whole knee nightmare and I swear I have aged 8 years in 2! Pain grinds you down, in all areas. He needs to come up with some solutions as to what happens next. If you need scar tisue dealing with then you must have an OS with a strict AF regime afterwards that is proven to work. If not, then he needs something to get the knee calmer and able to build function. Goodness I wish I would send a magic wand to get that kne on the road to recovery.

I wish I could have had some meatballs! I love pasta, but try not to scoff it too often as I love the sort with loads of cheese, and garlic bread..and....more! Thanks for asking how I'm doing. I am OK. After a bit of a flare up after the jabs the knees have calmed down. I am cautiously optimistic the injections will help them cope with daily activity and gym stuff. One day at a time, thats all we can do though.

Hope you are having some pain respite this weekend, keep us posted,

Hugs xxxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on February 26, 2011, 09:30:17 PM
Hi Lottie,

Unfortunately, a pain respite is not to be for me right now. Actually, my knee is more swollen this afternoon? When I was at PT yesterday, my regular therapist was at a meeting, so I worked with another one. She was asking me questions about my knee history, and I had to explain it all yet again. She asked me if I should just give up and live with what I have!? I almost burst out crying! I cannot live with what I have, and think it is just another example of someone who has never experienced this themselves. What I am experiencing now is unacceptable, and giving in and giving up is not a viable option. I refuse to just say this is it, and the rest of my life will be like this. She did not even do the deep tissue massage, since my knee is so swollen and painful. It does kind of seem like PT is wasted on me right now, since we cannot move ahead, and just keep treading water, or going backwards.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on February 26, 2011, 09:53:51 PM
Oh Annie
I am so sorry for the inept PT that is not something you say to someone fighting to get there life back. :'( I feel your frustration in your letter my friend. Don't let those kind of people dictate your outcome.  It is time to find an AF specialist.  Even if it means leaving the state. No one should be resigned to live that way until all viable options have been exhausted.
Know my heart goes out to you, keep fighting, you can have better.
Take Care, prayers of strength coming your way.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on February 26, 2011, 10:32:43 PM
Annie

Oh my goodness how do some of these people end up in professions where they are meant to help people reach their goals? What an insensitive thing to say and how totally frustrating. I totally agree that you need to keep fighting. This is NOT the best it will get - others on here have battled through AF. OK they may not get the perfect knee back but we all of us know that isn't going to happen. None of us on KG will ever win prizes for thr world's most functional knees! But you deserve and will get a knee that lets you live your life. Marathons - No. Normal daily life - yes, and its your right to fight for that. I think it is time to fight for an AF specialist. This knee needs proper treatment. PT doesn't seem to be helping but that isn't your fault - it is because the regime hasn't been right. I know it isn't me going through this but I KNOW you will find a way, and keep battling. This is NOT your knee for ever.

I'm so sorry for such a crass remark being made to you. I hope your doggies are making you smile and at least the fact we understand and want you to get this knee on the mend is a little help.

Rknees4, I hope your weekend isn't too sore, and you're getting a bit of sleep too!

Hugs Annie, stay strong xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 01, 2011, 04:28:43 AM
Hey Annie,
Just about stoned out of gourd tonight.
PT was just a travisty. She thought it would be a good idea to do mini squats just over 2 weeks from a TTT LRcleanup. :'(  I said are you nuts, you won't let me bike with tension and yet you want me to do a squat.  Being the pleaser I am well did one, pain shot through the non post op knee and is now the size of a basketball and I can hardly walk on it., and the post op knee isn't a whole lot better.  The only excercise worse than stairs for bad knees are squats and lunges..  Next time remind me to tell her to take a flying leap off a short peer. I will be in pain for days now. Had to take my last perc I was saving for one of the horrible pain nights but I was hoping it wouldn't be this soon.  Annie sorry to vent but I know you will get it. So now I have a post op knee in pain and my other knee screaming its head off.  It is hard enough to walk on a bad knee without having 2 in the same poor shape. Frustration just total frustration these guys should know better.

Well I hope you had a pain free a day as possible.  Thanks for the ear it means a lot to me :)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 01, 2011, 09:50:30 AM
Rk4,

These darned PTs.  :o :-\  SO sorry you are now in worse pain after being asked to do something to soon, too much. It is so tricky isn't it, you kind of want to try it although everything says to you - this is NOT a good idea. The best PT I had for my PFS symptoms last year just removed all squats, lunges, extension activity from my program and we went back to basics with glute work, hips, knee movements with minimal load......she told me that lunges would never be for me. This frustrates me as I'm attempting to finish my personal training qualification this Spring and I know lunges are a great action for normal legs and knees. I would dearly like to be able to demonstrate one for a client, without falling to the floor in pain! BUT for my own work, and those of us with compromised kneecaps, squats and lunges, just way too stressful. My OS showed me a rubber model of a knee under load in a squat with a weight. OMFG I nearly wept! Hideous! Hope the two knees settle down FAST after this stupid PT. tell her to go run off that pier next time.

Hugs xxxx

Annie - am sending positive thoughts for a fruitful OS visit tomorrow. I have been thinking of you. This is now time for that darned surgeon to get his finger out and get you moving forwards. Enough is enough. Or I'll send the mogs round. Take care

Lottie xxxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 01, 2011, 01:09:05 PM
Oh no Rk4! I would not agree to squats, lunges period. It loads your knees way too much, particularly since you have PF problems, and you are way too soon post-op anyway. I also cannot do short-arc quads without horrible consequences. I have gotten to the point of refusing to do certain exercises that have only proved to make matters worse; it is counterproductive to even try. It always causes a BIG flare-up, and I am then unable to do anything for days. I am actually kind of surprised your PT would even ask you to do modalities at this point that load your joint that much, and would question his/her knowledge base regarding PF patients, and TTT, LR, protocol. It is way too soon in your recovery to load your joint like that. Please speak up and refuse to do that again. I am so sorry that BOTH of your knees are protesting now. It is bad enough to have one swollen, painful knee, let alone two. Please rest, ice, elevate, and take your pain meds. I know you said you took your last percocet, but you must have something else for pain?

Hi Lottie: Thanks for wishing me luck tomorrow. I actually have PT this morning, and then my appt tomorrow.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 01, 2011, 04:49:12 PM
Thanks Annie, Lottie,
I am paying today yet.  They both hurt way too much.  Why is it that I know they are no good for bad knees and they don't.
well have to put the beasts up and get my ice.
Take care at PT and at the OS tomorrow.  Hate to say this but make sure you over due so he can see the mess that exists.  Sometimes the over educated have to see it for them selves.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 01, 2011, 07:22:48 PM
Hi Rk4,

Actually, I did overdo it today at PT since my therapist went and changed just about everything. I swear, my knee could not handle what he had me doing before, so go ahead and increase everything. I am already swollen, and anticipate tomorrow to be a very painful, long day. I worked with bands today, and it was the first time since the TTO. I worked with them in the past, but not since the latest surgery. My PT did scrap the deep-tissue massage, and replaced it with an easier massage. He also took away the ultrasound, and added e-stim with ice. I have an e-stim unit at home, and use it daily, so I do not anticipate much improvement from that PT switch. I have noticed that ultrasound, e-stim, light therapy etc., really do nothing for my knee. I say that since it has been a part of my PT for 2 years now, and my knee does not seem to respond to it. I felt kind of stupid today though, I must admit. My PT placed the leads on my knee for the e-stim, and wrapped it up in ice. All of the sudden, it felt like little needles (like e-stim sometimes does), and I said yelped a little. He turned it off and asked me if it still hurt, and I said it did. He told me it was turned off. The nerves in the area of my scar and just lateral is beginning to wake up, and when there is a sudden temp change (like putting ice on it), it feels like little needles for a couple minutes, then stops. I felt kind of dumb, since he thought I was yelping from the e-stim (after he turned it off), which was not the case. I felt a little silly for a minute though I must admit.

I can pretty much tell you how my OS appt will go tomorrow......He will tell me to be patient, keep doing PT, unload the joint, and ask me if I want to try synivisc AGAIN. He will tell me to ice, elevate, rest, take my meds, and come back in 2-3 weeks. I will wait for 2-3 hours for this, and leave feeling like I was not helped, and no good direction was laid out. I am really not sure what else he can do at this point. It is too early to really make any big assumptions about what is happening, even though I have been down this road a million times before, and already know what is happening.

I was looking through some picture albums yesterday, and found pics of me snorkeling, scub diving, fishing, hiking, and white-water rafting. I want to do all of those things again, and every summer with this bum knee is preventing me from doing all the things I love in life. I do not want another summer sitting on my butt wishing for a better quality-of-life.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 01, 2011, 10:32:18 PM
Annie,

Just to say Good Luck for tomorrow. It is difficult to know that you have the expectation of not getting further with the OS. But, as you say, time is a difficult one and perhaps he would be failing you to rush into something without seeing what results time does bring. As you say also though, having been down that road before it is all too easy to imagine that indeed, time may not bring the positive long term outcome. I have been thinking of you today and wishing that your OS could read this diary. Perhaps then he'd understand what a life changing effect this has and what a fight you're putting up.

I felt sad when I read of you looking at photos of "BK" - Before Knee as my ACLr friend talks about her fateful martial arts accident some 18 months ago. I am the same. I look back and realise how much I took for granted my knees. I know that in relative terms I am extremely lucky to have pretty darned good day to day function - but I miss the lack of concern I had to have for my knees. I was at the gym today watching a 20 something doing plyometric jumps up and down off a box, lunging with weights, squatting etc. She was so nimble, I ached to have her kneecaps for a week! But, you will get back to doing things you love - and water activity is excellent even for recuperating knees so scuba diving would be therapeutic too.  ;)  When my knees were really bad some 18 months ago I used to see a TV advert for some daft home improvement store where they "make over" a train station. I hated it - every activity on there seemed to be something I was no longer able to do and for some reason the daft ad brought it all home. Even the music made me want to weep! But - I've improved, and I could probably manage 70% of what they get up to (no ladders or squatting thank you!). So, I think although you are battling surgery recovery, I know you'll hang in there. When you get in that ocean we want to see a pic of it. 8)

Hugs xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 01, 2011, 10:46:15 PM
Annie
You really do need to tell the OS what is going on and tell him it is ok if he himself can't help that you would rather him be honest than just stab in the dark. That maybe he knows someone with more experience with scar tissue issues.† I think OS's egos often get in the way of patient care. Patients just need to give them an out.

You will get back to some of those activities it is just going to be a while. I am still waiting as well.† I just want to be able to walk a few miles without being crippled the next day.
Hang in there girl.

Yes I do have other pain meds but not as strong so they don't control the pain as well. My Gp God bless his soul always takes good care of me except he doesn't like to prescribe percs.  Our city is the oxy abuse capital in ON so he only prescribes them to his dying patience in pain. Actually I respect him greatly for that quality.
Rk4 ox
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 02, 2011, 03:28:16 PM
Hi Lottie and RK4,

I appreciate both of your support. I was cursing my PT last night (still am this morning) for making such abrupt changes to my program. I am not comfortable with changing 7 things at once, since it becomes difficult to distinguish which particular modality is causing this much pain and swelling. I think I have pretty much decided that I am going to tell my OS that I will continue PT locally. My local PT only changes one thing at a time, and gauges how my knee handles it before changing or adding anything else. I tried to tell my PT yesterday that my upper lateral patella feels like it is terribly bruised, and after all the exercise changes, that area of my patella was so painful, I did not want to bend it at all, or have my pants brush across it. I promised my OS I would go to his PT a couple of times, but I went ahead and continued driving down there for the past month, just so I could give it a good chance. I have a very low mileage lease vehicle, since when I took it out, I was working full-time, and live less than a mile from my work, but I have been packing on the miles the past 1 1/2 years running down to his office all the time. It is costing me a lot of money in gas too to get down there for PT. Something has to give financially, since I am off work right now. I am also going to ask to be switched off Celebrex to something less expensive. The Celebrex is just not doing enough good to continue paying for it. I am not sure my OS has considered the financial aspects of this for me. I have been on disability for over a year, and have lost over 60 percent of my annual income, which is devastating for me and my husband. The financial aspect of this has only served to add to the overall stress of the situation. I will admit it makes me angry to think of all the money my OS has made off of my case over the past 1 1/2 years, and I am not getting better. Of course, he still has the opportunity to go on wonderful vacations, while I am stuck at home with a bum knee, under a pile of bills.

I think I am going to stop now, I am just making myself upset.

I will update tomorrow morning after my appt.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 02, 2011, 03:41:49 PM
Hang in there Annie, catch up to you tomorrow.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 02, 2011, 10:41:33 PM
Annie,
I know exactly what you are talking about.  Yesterday, I sent my OS an email with a similar theme.  He prescribed Celebrex, a pain patch, and acupuncture.  When I started tallying up the costs, I got a little ill.  I asked if the generic that is "almost Celebrex" would be good enough.  I explained that I can't afford to fix my knee unless I work, but I can't work until my knee is fixed.  Cruel irony.  I know he does not deal with the money side of things.  I do not, for even a second, think he is trying to profit from my knee. 

He was very sympathetic.  However, he really wants me to try the Celebrex instead of the generic.  He wants me to go "all out" for a month.  If it's not helping, then we will back off...and try something else.  He is not giving up. 

I do not even want to think about how much we spent last year on my silly knee.  Not to mention the loss of income due to my knee.  I could have that new sports car by now....
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on March 03, 2011, 01:37:48 AM
The costs really do rack up....one reason that I'll probably wait until at least next winter (or even longer) to get my right knee done.  I really feel very lucky in that I have a sedentary job and I recovered quickly enough to return at 4 weeks to my job...and that short term disability paid full salary for the 4 weeks I was out, so other than the ridiculous medical bills, there was no loss of income. 

Hang in there everyone! 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 03, 2011, 11:52:18 AM
Annie

I hope the appointment went well. Let us know how things are. I think being UK based we forget how costly it becomes for those across the water to even deal with getting the medication they need.  Where we are lucky is with meds - I asked my GP for Celebrex last September. He said it was "little different to the others" (I disagree, for me certainly it is the only thing that helps the boggy knee sensation) but still prescribed it, and it costs me £6.50 for a month's supply. Nothing in reality, and I realise how lucky we are with the NHS and medications. A friend of mine with 3 collapsed discs in her neck is on a cocktail of meds, and pays up front. She pays £48 for 6 months flat prescriptions as much as she needs of every med she is on. Amazing service. What kind of cost is it for medications over there?

I think your call on PT is right. Changing 7 things at once is madness. How do you know what is working or not working? Simple logic dictates that isn't a good plan, regardless of the effect it has on your poor knee.

Keep us posted,

Lottie xxxxx

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 03, 2011, 03:29:00 PM
Hello Lottie, cdubb, RK4, and Mermaids,

Well, my appt went ok I guess. First, my x-ray continues to show a healing fracture, so that is good news. My OS explained that my knee is going to take some serious time to get well, compounded by the fact that I had multiple surgeries over the past 12 months, and this will be a slow, frustrating, painful process. He messed around with my knee, and it did the catch and stick in front of him (thank goodness). He thinks my weak muscles are causing that, and once they are strengthened, that will stop. He said that he has been seeing me much more often than normal after TTO, in an effort to carefully watch me for scar-tissue development. He noted that some scar tissue formation (especially after TTO) is normal, but since I tend to over scar, he is watching my progress much more critically. At this point, I have decent ROM for this stage of healing, but there is some indication that I have more scar tissue in the fat pad and patella tendon area.

Here is the thing: At this point (3 months out from TTO), I would likely not let him do any form of surgery on my knee. I think my knee needs a rest from surgery, and jumping into more surgery may not be the best thing for me right now. I talked to him about the financial aspects of this, and how devastating this has been for me and my husband economically speaking. He was really great about all of that. I told him that the Celebrex, at almost $50 a month, is just too much, particularly since it is not working well for me. He changed my anti-inflammatory to something much less expensive. He said that if the Celebrex was working well, but was not affordable for me, they would work to get me samples free-of-charge. However, I do have insurance, and would not feel comfortable with getting samples when so many people do not have insurance at all. Without insurance, Celebrex is around $200 a month, and I would not want to take samples from someone who has success with the medication, but has no insurance at all. He also refilled my pain med, and told me just to give the office a call if I need more meds, or a change in meds.

He also agreed to me resuming my PT locally, saving me $60 a week in gas, and I will stop racking up the miles on my lease vehicle. I told him the protocol was pretty much the same at his PT facility as it was at my local facility, and he was happy to have me continue at home. He said that his PT would be available if my local PT has any questions at all on TTO protocol, and they could kind of work together to ensure I get on the best program tailored for me and my knee. He was very specific about what he wants me to do in PT at this point, to help with the scar tissue issue, so I will relay that information to my local PT.

I asked him if he though swimming would be a good choice at this stage, and he said it would be an excellent supplement to my PT. He gave me some specific instructions on what would be most beneficial to do in the pool, and was enthusiastic about me adding that to my exercise regime.

Ok, now here is the kicker: I told him I need to go back to work. He was not comfortable with that just yet, but I have been off for a long time, and need to get back to work. In November 2009, I took 3 days off for a scope (plica and extensive synovitis clean-up), and everything went wrong. I went back to work half days for a month in March 2010, but then went back off due to horrible issues, and he did the lateral release, which culminated into a hematoma, and second surgery 8 days later. Since the hematoma in April 2010, I have had a MUA, and two additional surgeries. I have not been back to work for almost a year now, and my position can only be held for one year, which is fast approaching. If I lose my job, I lose my insurance, and I desperately need my medical insurance, since it is clear my knee nightmare is far from over. He reluctantly agreed to allow me to return to work on March 21st for half days only, with a ton of restrictions, but I will take it. However, if returning to work proves to cause more problems, he said he will need to take me off again. I will be on half days for a minimum of 6 weeks, but he may extend that, depending on how my knee responds.

He will not remove the hardware from my knee for at least 3 months, and if my knee continues to show signs of scar tissue, he will scope it and clean it out at that time with my agreement.

So, to sum up my appt: My bone is still healing on schedule (still fractured, but a healing fracture), lots of money saved with change in anti-inflammatory and resuming PT locally. I am going to try to go back to work on a limited schedule (I am at least going to try this), got the green light on swimming, PT has been further developed in an attempt to get scar tissue under control, discussed future surgery to remove hardware and possible scar-tissue clean-up, pain meds refiled, his PT and my local PT will work together to continue to develop best PT program for my knee, am still being watched very closely, and must follow-up with him again in a few weeks.

Oh, and we discussed aspirating my knee, and decided to wait. My effusion is not enormous, and with the addition of more motion exercises to my PT, we are hoping it will absorb without the need for invasive action. I am ok with that, since every time it is aspirated, it causes a big bump in pain and swelling.

So, my knee is killing me, is very, very swollen, likely is building more scar tissue, and we are trying some non-surgical modalities at this time to minimize the extent of the scar tissue.

On one hand, I feel like some good things happened at my appt, but on the other hand, I feel like no matter what we try non-surgically, I am going to end up back on the surgical table, having this issue addressed once again. I am probably prolonging the inevitable, but my knee has been through so much in the past year, and I think it needs a break from invasive procedures for a little while.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 03, 2011, 03:36:58 PM
Annie, I agree.  Too many surgeries in such a short period is not good.  If these other things can buy you a few months, go for it.  That's kind of where I am right now.... though my situation has been much less severe.  It is good that your doctor recognizes the practical (money) side of all this. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 03, 2011, 09:58:16 PM
Hi Annie,
That is a lot of positives to hang on to. Good that he realizes the money aspect of the knee issues, and the PT you like. Sorry it is going to take so much longer than you had hoped, but like I said it took me close to a year to feel normal the first time and that was without the issues you are now facing..  Contrary to what most people like to think and OS's like to spout this is a long healing process for most of us. Longer than the 6-8 weeks it takes to heal the fracture site.
More surgery at this time is definitely not good.  That poor knee needs time to regain strenght flex and extension.
Hang in there Annie you can make it through.

Me well still suffering for my squat in the pain department. Not to happy about that.  go back to PT tomorrow and we will be having a long talk about what I will and won't be doing. Squats no, crutches yes,. Anything that will put to much pressure on the site no.  You get the picture I am sure.
Well have to go Annie,
Hang on to all those positives. It will help in the days to come.
Take Care
Rk4  (HUG) coming your way.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: cdubb on March 03, 2011, 10:43:11 PM
Annie,
Sounds like you had a good heart to heart though with your doc, which is good.  Hopefully, the other anti-inflammatory will help.  I personally find that good ol' ibuprofen at 800 mb 3 x's per day works well for me.   Good luck returning to work.  It'll be hard at first because you've been out for so long, but I think mentally (and financially), it will be good for you. 

I had a visit with my doc today also, but mine was pertty much status quo....since I'm moving right along.... oddly, no x-rays though.  I have not had x-ray since my initial post op at 9 days out.  I have no idea if my bone is healing as it should be???
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 05, 2011, 12:49:50 AM
Hey Annie,
The PT and I now have an understanding.  When I say no I mean NO. She felt bad about the blown knee. When it was time for ice she got it for both knees.  I think she finally gets it, just cause the knees are "fixed" doesn't mean they are good. ::)
Hope you had a good day today.  It is rainy and damp here making the knees even more uncomfortable.
Take Care Annie, Be strong you WILL overcome this knee nightmare. ;)
Rk4 8)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 05, 2011, 02:48:47 PM
Thanks for the support everyone!!

RK4: I am so glad your PT finally understands, and hope you have more productive sessions from this point forward. You are so soon out of surgery, I am just horrified that squats would even be considered at this point in your recovery. My OS would have hit the roof if my PT would have asked me to do squats (still might at this point). You have a broken bone for heaven sakes, you should not be loading up your joint like that at this point in your recovery. I hope your heart-to-heart will produce better sessions for you. I am sending healing vibes your way.

I have been continuing with my knee nightmare, and it seems like I have spent so much time on the phone since my appt with my OS, trying to get the list of things we decided at my appt going. I had to speak with my supervisor, HR, my disability company, my local PT, and I needed some additional information from my OS. I must say, my OS has an amazing staff. I needed some additional wording on my return-to-work note in regards to restrictions, and they immediately made the adjustments, and emailed it to me. I also had to find a facility in the area to try some water therapy. I needed a note of medical necessity to get a temporary membership at a local health and fitness center to use the pool. I called my OS, and the note has been sent to me.

I laid in bed last night moaning in pain, reminding me once again how bad my knee actually is. I hope my return to work part-time does not result in a mistake, but I really need to try. I realize my OS was not happy about my return, but I cannot afford to lose my job, and after being off work for the bulk of the past 16 months, I have to try to get back. My supervisor is happy to allow me to park in visitor parking, where I have only a short walk to the elevator. If I have to park in the employee-parking area, I have to walk across the lot, up a long ramp, and through the building to get to the elevators (my office is on the second floor). Parking in the visitor lot will eliminate most of the walking. He has also agreed to bring in a chair for my leg, and I can ice throughout my shift.

I did have a spot of good news: I worked half days for a couple of weeks last year (did not go well at all, so I was put back off), and I actually made less money than being fully off on disability. However, my employer has since added a rider to our disability insurance. This time around, my employer will pay me XX amount, and my disability company will pay the remainder to ensure I reach 100% of my regular pay. In the past, disability only paid an amount to reach 66 2/3 percent of my pay. This is really great news, since I have not made more than 66 2/3% of my pay in almost 1 1/2 years. It is a wok incentive rider, and I am so grateful for it.

Hopefully, the pain and swelling will not ruin this for me.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 05, 2011, 04:55:41 PM
Annie that is good news on the $ front then. Just be sure to take a pillow and lots of ice. If you can at all possible put the knee way up for a 20 minute period while at work I expect you will be able to handle it. You may just have to gut it out for a few months to try and keep the job.† Just make sure you have good pain meds and when you are done work for the day.† Drug up and laydown and ice.† I know you can do it. It will be hard but you have done hard before. :)

Sounds like the office staff at the OS is most excellent.
Well going to go crash just drug up and getting groggy and will be drooling on the keyboard shortly. :P
Take Care Annie I know you can do it. ;)
Rk4† 8)† † Big ((((( HUG)))))
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 08, 2011, 04:34:54 AM
Evening Annie,
Just sitting here getting stoned and thought I would check in.  PT thought I might like to do wall slides today,(squats against the wall) so I said when hell freezes over. Then she wanted to see me walk with one crutch so I gave her both and walked without any then walked back and grabbed them and said when the pain is almost gone at the TTT site you can have them until then they are mine. Left her standing there with her mouth hanging open. Then she said why and I said YOU try putting 250 pounds of pressure on a screw holding a chunk of broken bone in place then we will talk.  So I am sure I am on the PT poop list now for sure..
But I did flex 143 degrees.  I am sure she thinks I am a total nutjob. But I am not going to do something that will endanger my recovering again like squats can.
So I have been doing the PT I did with knee number 1. One more exercise to add. and that 's it. Did 5 minutes on the bike with tension. So they can just back off a bug someone other than me. Sorry I am not going to be better in 6 weeks I CAN tell right now the pain is exactly the same as last time.  Looked it up  and everything is the same except the bend but that is only from forcing it through the pain.
I am just totally tired of the whole thing and it has just been 3 weeks and 4 days.  It still feels like it will be forever before it gets better.

So how is the knee if I dare ask? Hope PT with your own PT is a little less painful and problematic.
Well better go having trouble to type.
Take Care Annie. ;) Hang in there.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 08, 2011, 06:42:08 PM
Hi Rk4,

My goodness! I cannot believe your PT would even suggest wall slides at this point in your recovery. I realize every OS is different in terms in protocol after TTT, and mine would have been screaming at the therapist for even suggesting such a thing. He did not want anything close to that for the first 3 months after my surgery. He said it could ruin the work done, cause a non-union, or fracture. I am so glad you stood up to your PT, and told her that you would not do that yet; all in time, but not yet.

I did see my PT today, and I am rather upset. The first thing she noticed was the increase in swelling at the patella tendon. The second thing she noticed, but almost was afraid to say it, is that my patella is still crooked. In fact, she left the room for a moment, and came back and said it looks like my patella was facing the wall, while I was laying on my back. I told her about the terrible pain behind my knee that nobody seems to want to address (in addition to the Baker cyst, I have soft-tissue swelling back there). She decided to do some light massage, and asked me to roll to my side, she touched the back of my knee, and I yelped. Then I heard her say "Oh my god, the back of your knee has major bruises all over it." What the heck!? I had bruising right after surgery, but it faded away, now I have unexplained bruising all over the back of my knee? It is in the crease, and runs in vertical strips on the medial side. It also seems to be causing a heaviness in my lower limb, and I cannot put even a towel behind my knee, since it causes my lower leg and foot to go numb in about 2 minutes? What the heck is happening, and why is my patella still squinting? I know a major artery runs behind the knee, but why am I bruising?

I am impressed with your ROM. I have been going to PT for the past 3 months, and I can only manage about 111, and my "good" knee can bend to about 158 (yes, I am hypermobile). I am extend my good leg to about -15, and my surgical leg to around zero (not too bad, but certainly not like before). I have functional ROM, but need more flexion. My OS is now worried about scar tissue, so we need to work on ROM a bit more.

I am just going to sit here now, with ice, and worry about the unknown cause of my bruising.

I hope you are feeling ok today?

Annie

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 08, 2011, 07:01:05 PM
Hey Annie,
Just a thought.† I know someone who had a baker cyst slowly rupture and left the stiations you are describing.† Could your bakers cyst be leaking causing the mess behind your knee? A good question for your PT† Plus the abrupt changers your other PT made could cause excessive bleeding intothe tissues behind your knee. You do have fluid build up which with no place else to go would have the potential to find the back of your knee.† I would expect that would also cause a great deal of pain with possible blood in it.. Like I said just a thought.

That bend is about total max other leg is about 135 since surgery. It took me along time to get that.
Actually the knee hurts more than I would like.† Did my round of PT at home and iced but swelled like crazy as it always does. So just the same old same old. Just totally bored out of my skull today.† Between that and the pain, like just stop the world and let me off.
Hang in there Annie.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 08, 2011, 07:01:59 PM
Hi Annie

Been meaning to post since your update last week and got bogged down replying to another few posts and then been to London today for work. I despise London and the train travel down there!

I am glad your OS listened, took note and understood your concerns. I REALLY hope that going back to work part time is successful, for both your soul and your bank balance. It is horrible to lose so many parts of your identity with these knee injuries and I hope work brings back some sense of normality. I agree that further surgery probably isn't the best plan - your poor knee has been through so much already. The bruising must be a worry. Was it bruised when your OS saw you last week? I really have no idea why it might be happening - did your PT feel it was fresh bruising? Oh my goodness on the patella still squinting - although if the muscles aren't able to work to make the new alignment functional then it may still appear to be "out". Its SO hard visually to look at whether the patella actually is out or just settling so it seems that way because the muscles are not functioning properly. Please try not to panic too much on the patella thing - easy to say, I'd be gnashing my teeth in frustration I know. I really don't know what to say apart from I wish so much that you could get a break with this knee (not literally...) and see some positives. hang in there. I am thinking of you often.

Rknees4 - wall slides - ha ha ha ha what are some of these therapists ON??? Did they skip the knee rehab classes??? Hmmm, lets break the tibia, stick in some screws, wait 3 weeks then get some nice squatting going on. Honestly, you wonder what they think of. I love your trick and comment with the crutches. I hope you are getting some respites from the pain now that its getting near to a month. You are doing SO well, that ROM is awesome.

Annie, take care and keep us posted. If you have any worsening numbness and bruising I wonder if its worth a call to your OS or even the ER? I just don't know what to suggest.

Big hugs xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 08, 2011, 07:10:21 PM
Thanks Rk4 and Lottie. I really do not know if the bruising was there when I saw my OS last week, he never even looked at the back of my knee, and just said the pain is from all the joint swelling. I hate the heavy, tired feeling elicited from the back of my knee, running down my calf. I also hate that my lower leg goes numb if I even have a pillow under the back of my knee. I also worry about blood clots. I had blood clots before in my jugular vein, all the way down my right arm in response to cancer treatment. I thought it was just lymphedema for several months, before I talked to my oncologist about it. He sent me straight to the hospital for a doppler, and found the clots. Honestly, the pain behind my knee is every bit as bad as the pain at the front of my knee.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 08, 2011, 07:18:06 PM
Annie if that is the case maybe you should get it checked out.. My foot right now has gone to sleep because my leg is down.  when knees swell it can cause all kinds of trouble. If you are concerned maybe you should get it checked just to be sure.  Call your GP. In this case it is better to be safe than sorry. Clots are nothing to fool around with,especially that heavy tired feeling. :-\
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 09, 2011, 04:55:37 PM
Quote
It is horrible to lose so many parts of your identity with these knee injuries

In addition to losing part of your identity, the knee issues can become your identity.  I think of how many people do not know me without knee issues.  It is getting difficult to remember my life before knee issues. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 10, 2011, 09:44:22 PM
After my PT session Tuesday, I spent yesterday recovering with a very swollen knee. I mentioned to my mom last night about the terrible pain and bruising behind my knee. She went into what can only be described as a great big fit. She was immediately concerned about a DVT, and since I do have a history of blood clots, made me promise to call my OS this morning, which I did. I did not hear back from his office until around 4:40 p.m., but they were waiting to speak with my OS directly to see what he wants to do. Long story short, I have symptoms resembling a DVT, so I have to have a Doppler. Now, this is just a precaution, and a rupturing cyst is more likely the culprit. I was given the option of going in through the ER tonight, or by appointment tomorrow. I am going to wait and go by appt tomorrow. Again, this is just to ease everybody's minds, and I am sure it will be fine. So, that is where I am at with this new issue.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 10, 2011, 09:49:27 PM
Oh Annie......I hope all goes well tomorrow. How much can this knee pile on you? BUT good work on getting checked out. Way better to know for sure, DVTs are not to be messed with. Let us know how it goes and I shall be thinking of you. Keeping all fingers and mog paws crossed that it is a rupturing cyst and nothing more sinister.

Hugs xxxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 10, 2011, 10:10:19 PM
Thanks Lottie. I know first hand about having blood clots, only I had them in my neck and arm before. I actually walked around with them for weeks, thinking it was just lymph fluid from my mastectomy (they took out all the lymph nodes under my arm). If I have a blood clot in my leg, I have had it for weeks now. I have been complaining about the back of my knee for weeks, but nobody seemed too concerned, thinking it was just the cyst or caused by joint swelling. I hope it is fine, my mom's heart cannot take another emergency.

I will keep you posted.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 11, 2011, 12:41:21 AM
Hi Annie, Good that you are getting it checked though. Was a little concerned,glad to see you still fighting the good fight girl. You hang in there, hopefully it is just the cyst doing the leaking. Take Care Annie,
Will bethinking about you tomorrow. Let us know how things turn out we will be all waiting on pins and needles. :-\
Rk4.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 11, 2011, 01:28:03 PM
Thanks everyone. I am up early, waiting for the call from my OS to tell me what time to go for the test. It would not do me any good to sleep in and miss the call  :-\

I find myself riveted by the reports pouring in about the earthquake in Japan, and the tsunami warning in Hawaii. Scary to think they have issued a state of emergency, and one of the nuclear power plants is experiencing a malfunction in the emergency cooling system. Wow, I am praying for the people of Japan and the areas of the tsunami warning.

Rk4, how are you feeling?

Lottie, have the shots given you any relief yet?

I will update everyone once I hear that everything is clear (no DVT), which I am certain is the case.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 11, 2011, 07:09:55 PM
Hi Annie

I am thinking of you, and hoping all went smoothly today.

The reports from Japan are just horrendous. You simply cannot imagine being in your house/office and then suddenly a tidal wave sweeps you and your family away. Or, your whole neighbourhood is on fire, or crushed. I think I am lucky in the UK, we are relatively safe from such faults and posibilities, but I try imagining destruction on the same scale in my surroundings and it is like a bad disaster movie. I pray for those involved that they find safety.

Thanks for asking about the shots - I'm nearly 4 weeks post shot. My OS says peak effect is 3 months, but on my last one I think it was about 6-10 weeks then wore off. I'm OK, been pushing my exercise a bit more, spinning for 30 minutes, cross training, few more leg exercises without any nasty lunges and deep squats. I had a sports massage today (my good friend is a fab sports therapist and I trust him and no one else to do my legs but never actually mess with my knees as he knows my history). I have hideous knots in my calves, so bad I was crying, and my quads have a tight mass above the kneecap which pulls them up. My hammies were also quite tight but not as bad as the other parts! So, I'm quite sore but I expect the benefits to be felt tomorrow and onwards....I try and have one every 2 weeks if my pain tolerace stands it! Good news today is that my husband secured a new contract for work - one he really wanted. So, we have some champers tonight and tomorrow is my birthday so we are off out with some friends for a big Thai meal in the evening. Yummy!

Rknees4, how are you going today? Hope the pain is manageable. :-)

Thinking of you Annie, let us know it goes.

xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 11, 2011, 09:32:52 PM
Hey Annie,
Just thinking about you and hope all is well. :-\
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 11, 2011, 09:50:02 PM
Great news! I am clot-free as hoped. However, when my OS's nurse called today, she said that the Doppler would also look at all the soft tissues. I thought this was odd, since I have had them before, they are a vessel-only test, unless a second order is submitted by the doctor. She assured me this was not the case, so I thought the process was different at a different hospital. When I arrived, the tech said "I am a vascular tech, not a soft-tissue tech." She did look for a cyst, but said she could not find it? I asked her if it could have ruptured, hence the pain and bruising, and she said she did not really know. So, I am delighted to not have a clot, but still do not know why the pain in the back of my knee is this bad, and why I am bruised? I suppose all the joint swelling could cause pain at the back of the knee? I do know that my PT noted a couple days ago that the structures at the back of my knee went into a "protective spasm" when she touched the area. Maybe the spasms are causing the bruising.

At this point, I am just glad to have a dangerous DVT ruled out. However, she was running the ultrasound wand over the back of knee, and now it is killing me again  :'(

I hope everyone is doing alright? Rk4, how has PT been going since you gave your therapist a bit of a talking to?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 12, 2011, 02:14:23 AM
Hey Annie that is great news about the DVT. One less worry, keep doing the ankle pumps.
As for me.  Down to PT once a week. I think they don't like my independent nature. Go to PT again on Tuesday and see the OS on Wednesday. Time will tell on everything I guess. Knee is pretty sore tonight. Did my 2 rounds of Pt today so paying. The brusing could just be the fluid escaping into the tissues behind your knee from having it up. This would cause pressure and pain.  maybe the Os can shed some light on it.
Well take Care, glad all is well as far as the DVT Annie.
Rk4.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 15, 2011, 12:06:40 AM
Hey Annie,
Was just sitting here in pain and thought of you.
I hope you have had a not to bad weekend. Me I am starting to worry about non union.  It hurts way more than it should by this time, see the OS Wednesday and x-rays so I will know what is going on I hope.
Hope you have a sunny day tomorrow. 8)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 15, 2011, 01:13:26 PM
Hi Rk4,

I am so sorry about the continued severe pain. I remember also being afraid of a non-union, thinking I should have less pain, but everything was healing properly. My OS assured me the fracture was healing, but it is a fracture, and will be painful for quite a long time. You having been through it before, can compare it to the last experience, and if you feel it is not right, maybe a call to your OS for an xray today would not be a bad idea. A non-union is serious, and you need to know asap. It sounded like your PT was attempting too much too soon for a PF patient with a broken leg, and I am glad you refused to continue down that PT path. Is your PT affiliated with your OS? You might want to ask your OS for specific PT guidelines. TTT surgery is not necessarily a common procedure, and if a PT thinks it is appropriate to adhere to TKR protocol, it will not bode well for your recovery. Please keep me posted on what you find out, and how you are doing. I think of you often, and continue to hope you have some pain relief and quick healing.

I was actually going to post last night, but I was frankly a little depressed, and did not want to. Here is what has been happening: Had PT last Tuesday, and it caused my knee to swell like a basketball. Was scheduled for PT on Friday, but my PT had to cancel, because her son got sick at school, and she had to leave, plus I had to go for the Doppler. It took almost a full week to get started back up with my local PT after seeing my OS on the 2nd, and I have only had PT once in almost two weeks. Not good. I can do a lot of my exercises at home, but the lack of formal PT is taking its toll on my knee, and it is tightening up considerably.

I have been trying to do a little more each day, since I go back to part-time work on Monday, but I always wind up in terrible pain, with immense swelling, which scares me about going back to work. Yesterday, I went to a local health and fitness center with my doctor note to get a medical membership to use the pool. My OS thinks it will be a great adjunct to my formal PT to work a little in the pool, so I am going to give it a try. This was something we tried over the summer, but it only made my knee worse, so we had to stop. I have a 30 day medical membership, so we will see how it goes. It did cost me $50, but if it helps, it will be worth every penny.

On my way to the health and fitness center, I decided to stop and look for a new purse. I went to the store, and found a purse that I liked pretty quickly, and made my purchase. I could feel my knee beginning to fight back pretty bad, but I continued on to the fitness center. I had packed my bag with my swim suit and was ready to get in the pool. I got my medical membership, and by the time I was signed up, my knee hurt so bad, and was so swollen, I could not imagine even trying to make my way to locker room, and I went home without swimming. I limped in the house, and my day was done. It literally feels like there are bands in my knee pulling every single time I take a step. To make matters worse, when my knee gets going like this, I cannot hardly tolerate sitting with any pressure on the back of my knee, which is still bruising.

I have a band of pull horizontally across my fat pad area, one across my patella tendon, one above my patella, and the back of my knee is swollen. I am getting really worried about my decision to return to work, even part-time, and I am beginning to think I am going to be crippled for the rest of my life. I know the problems scar tissue can cause, and I can say with certainty that I am scarred down again. I feel like I am not being heard about this, and the importance of dealing with it early cannot be stressed enough in the extensive research I have done on arthrofibrosis. I feel like I am in the same boat with scar tissue I was before the surgery, and the swelling and pain pattern is the same once again. It is really depressing to try and do a few things during the day, only to be sidelined an hour in with so much pain and swelling. Just going down for my Doppler Friday caused an enormous swelling and pain response.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 15, 2011, 01:44:33 PM
Oh Annie

It is good to hear from you. I have been away down in the south for work and stuff so didn't get chance to post after your Doppler. I am glad there is no DVT, but I am so sad to hear that you are struggling so much with just trying to do some normal activity. I can fully understand why the thought of work is scary; although it is good for the soul (and bank balance) if it creates more pain then it must feel like a Catch 22 situation. Thinking that this is it forever is a BIG thought and to be honest, although I am no expert, not one which I think you should dwell on if you can avoid it. You are still soon after the surgery, but also if you have AF  you deserve to see one of the top people who can help you with this. I can imagine that it is a fearful and pretty natural thought to be terrified things won't get better - but posters on the AF board have shown fabulous recoveries with the RIGHT surgeon and stringent AF rehab. I know your OS is good, but good doesn't cut it with some of these problems. Excellent and specialist is what is needed - but gaining that input is challenging I know. Do you have the ability to send scans/X-rays and history to any of the big AF names to review your case? It might give some more information whilst you're in this limbo situation. I WISH you could get some positive news and progress with your knee. I can only guess at how frustrating and saddening it is. Don't give up - you can get things better than they are. I know you have the will and you will find a way.

Rknees4 - I hope there isn't a non-union. My fingers are crossed that it is just being slow and painful. Keep us posted,

Hugs Annie, stay strong. I am thinking of you often,

Lottie xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 17, 2011, 12:51:20 AM
Hi Annie,
Sorry I didn't update you sooner but I was bagged and in pain. The TTT site is healing fine, just a little longer, the cartilage was bad behind the kneecap and on the MFC so he thinks the added pain is a flare up of this from the adjustment of the knee from surgery and cleanup.  He said if the pain doesn't settledown over the next couple weeks he wants to shoot in some cortisone. I also got a script of better pain releif. So can't wait to drug up tonight so I can sleep finally. HE commented on the black suitcases under my eyes and figured I was in pain. ::) Other than that nothing I didn't already know. The condition of my knee when he went in and now.  All in all just a minor inconvenience, another one of those time will tell things.

Hope you had a somewhat quiet knee day.  :-\  Keep icing that baby.
Take Care Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 17, 2011, 01:05:04 PM
Hi Rk4,

Thank you so much for the update; I have been worried about you. Sounds like your appt went very well, and your mind was eased about the non-union. I am also glad that you were given a script for better pain control, that should help you through this cascade of pain much better, and allow you to get some sleep. Did you talk to your OS about the course of your PT so far, and the things your PT was asking of you so early out? I hope you were able to get some decent rest last night.

I am doing the same. I went to the pool on the medical membership my OS gave me, and tried to do some light exercises in the therapy pool. I also floated around a bit. I noticed that every time I bent my knee while swimming, the darn thing was sticking and catching. After about 20 minutes, my knee began to hurt so bad, I got out of the pool. Seems like I have appointments everyday this week. Between PT a couple of days, a dental appt yesterday, a hair appt today, and swimming, I have been up and around quite a bit more than normal. I am trying to do something every day, getting my stamina built up before returning to part-time work on Monday. I am getting nervous about work, since every thing I do causes so much pain and swelling, but we will see how it goes.

Please keep me posted on your progress.

All my best,
Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 17, 2011, 06:53:08 PM
Good idea to build your stamina up before going back to work.  However, once you start work, remember to pace yourself.  Don't think you can work, even a half day, then still do lots of other things.  Work is going to take lots of energy.  You will need to rest that knee.  My husband didn't (and still doesn't) understand this pacing thing.  If I worked 3 days in a row, the next two days needed to be easy days.  It isn't like icing my knee for 20 minutes would make it all better.  It is not just your knee, but your whole body that is recovering.  This recovery takes so much energy.  Dealing with chronic pain takes loads and loads of energy. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 18, 2011, 10:26:01 PM
Hi Annie,
Just thinking about you so I thought I would check in. Hope your knee is not getting worse, as just being the same is always better than worse.  Mine the pain is flaring big time, but the better pain meds are able to control the pain a lot better so I am only half as miserable. My OS isn't a big talker or question asker, so I do the same.  Short and to the point. Pain where it is located and level. Plus one other question is about all he will do. I had a more important question on the pain so it was the one I asked. ::)
Good luck with work make sure you take some ice with you so you can put it up with ice way better than up alone. Take pain meds as soon as you leave work so you don't suffer to long after work.  Remember the higher the knee the better.
Take care Annie,
Will be thinking of you and hoping all goes OK.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 19, 2011, 12:41:30 AM
Hi Rk4,

I am so sorry your pain is so bad, but I am thankful you have better pain medication to help control the flare. I am in the midst of one hell of a pain and swelling flare-up, to the point of being absolutely miserable. Funny, my PT said today "I think you have scar tissue building up all over in your knee again." To which I replied "really!, you think so huh?" I believe I have been saying that for weeks now. My joint is so painful, and my patella feels bruised; I just do not know what to do now?

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 19, 2011, 02:15:21 AM
Time to find the AF specialist ,so he/she can help you get on with your life. You may have to look hard for one but the effort I am sure will be rewarded with improvement. Time to Ask your OS for a referral to one. He knows he is in over his head, just to much ego to admit it.
I wish there was something I could say to help but alas there isn't.
Take care Annie, Big hug
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on March 19, 2011, 07:00:55 PM
Hi Annie

Just popping in to wish you luck with work on Monday. Sorry to read that you're having a massive flare up of pain. I agree with Rknees4, it is time for an AF specialist. Your OS isn't giving you the best chance of geting function back - OK, the knee has been through massive surgeries and is traumatised but the right AF specialist needs to look, inspect, plan and timeline what to do next. There ARE success stories on the AF board even after years of pain and problems with people who have found the right person. I know you have the strength to do it. I am so sad you are feeling miserable. I am sending you hugs and hope the weekend brings some improvement.

Take care,

Lottie xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 19, 2011, 11:50:29 PM
Thanks Rk4 and Lottie. I know the time to see an AF specialist has come, but it seems like such a daunting task to begin again with a new OS. I am in Michigan, and a couple of AF specialists have been discussed on the boards, with success in helping AF patients. Honestly, I am going back to part-time work on Monday, and can already see more surgery in my future. I wish someone from my medical team would just have my best interest at heart, and give me some real direction without thinking of themselves. Money, statistical success rates, and pride has caused this to go on for so long. I just got a bill in the mail earlier this week for several hundred dollars for January physical therapy. My insurance changed to a deductible plan, and I am just beginning to get bills for this year. I am expecting another bill for several hundred more dollars for February PT at my OS's office, and I am still going to PT. I also had to pay to get a 30 day medical membership at a local health and fitness center to try to add some water therapy to my physical therapy. It really is upsetting, since I do not see much, if any, improvement in my knee after almost 4 months of PT since the TTO. I want to fully comply with my OS's wishes about PT, and have done everything asked of me, but $1,000 of PT later, and my knee is still a mess. It is all a bit too much to take some times. I do not even know how I am going to face my boss when he finds out I am going to need more surgery to sort this mess out. I am not saying I will need surgery in a week or month, but it is coming. Makes me feel a little sick to my stomach.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 20, 2011, 03:23:25 PM
Hey Annie hang in there.  Try not to think so far into the future just do one day at a time. That is the way I have had to live for years now and it does get easier to do.  For you that is tomorrow. I know you can do it just take what you need to be comfortable. It may not be totally office equipment put necessary for you. As for surgery yes you will probably need that but it won't be nearly as nasty as a TTO. They will just loosen and remove the scar tissue, no bone work.  For you that should be a piece of cake compared to what you have already been through in your life. You are a very STRONG woman never forget that. ;)
As for the bills, just one day at a time, Go to work Monday and see how it goes.  This knee stuff does get expensive Take a week off PT and do the exercises you know will not make it really bad and cut down PT to once a week for a while. She can only do so much with things the way they are and put the money away for later PT when things will be necessary. Even in Canada we have to pay for pt beyond what the reqired 6 weeks if we need more. I know many who have 1000 dollar bills for the stuff. The system only pays for short term stuff.  I only go once a week now to stretch out what I can have. After that if in want more I have to pay. I am sorry you got the S***Y end of the stick but I know you will come out ahead. I know it all gets very heavy. I also have kids to think about with my knees as they totally put a wrench in our family life.  It is like we are on hold when I am not functioning up to par.  We don't go any where don't do anything, just sit around like a bunch of couch potatoes, I have to make them go out and do stuff without me which they seem to have difficulty to do.
As for the medical team.  Maybe your PT can start the ball rolling for you by sending the OS a note that she thinks an AF specialist needs to be called into the mix. Just because you go to an AF specialist doesn't mean the OS you have now isn't necessary in the long run.  It would actually be in his best interest to get one for you, makes him look competant. Well I have rambled on enough.
Know that I care and wish only the best for you and that nasty knee.  I am also very stoned. :P
Take Care Annie,
Many prayers and a big HUG
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 20, 2011, 03:53:20 PM
I am lucky that my OS gets that there is a money side to this.  He understands that there is not an unlimited bucket of money.  He does everything he can, legally, to minimize expenses for me.  Email and phone calls really cuts down on the office visits.  Sometimes, the PT guy asks me to drop by for a quick look.  He does not bill for those "visits," but it gives him a chance to actually see the swelling, movement, etc.  The system has made enough money off my knee that we all feel quite comfortable with this arrangement. 

This stupid knee has caused me to miss out on a few really great job opportunities.  Instead of dwelling on what "could have been," I prefer to think that something better will come along.... one day.  Through all of this, I have met some fabulous people.  While my current job is not everything I want it to be, it allows me to work with a really fantastic teacher that I would have never met otherwise.  It has also given me the opportunity to reach some students that I would have never met.  Just last week, I was talking to a student about her plans after college.  She is very unfocused, grades are a mess, has been written off by just about everyone...  After hearing describe what activities she enjoys, I suggested she look into becoming a PT.  When I described what a PT does, her eyes lit up.  I have never seen her so animated and excited about anything.  I sent my PT an email, asking about schooling, etc.  He responded in minutes with lots of info and an offer to let her shadow him for a day.  This girl is over the moon.  I don't know if she will ever become a PT, but she is starting to think positively about her future.  She is making plans beyond partying this weekend.  She has been doing homework for the first time ever.  Had it not been for my stupid knee, I would have never worked with this student, never thought about suggesting PT school..... 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 21, 2011, 06:56:55 PM
Hi Everyone,

Thanks for the well-wishes regarding my return-to-work today. I made it in at 9 a.m., and will be working only 4 hour days. I had some things to transport to my office, so my husband loaded them in my car this morning before he left for work, and one of my co-workers met me at the front door, to carry the items upstairs for me (wonderful friend and co-worker).  By 10:30 a.m. my knee looked like what can only be described as a huge purple grapefruit. I had my leg elevated, and had my ice on it, but it still swelled up so bad, I could only hobble to the elevator at the end of my shift. My knee is screaming in pain, and I am feeling pretty down about the level of pain and swelling that happened today. I am alarmed that it was so bad 1 1/2 hours into my shift. I had planned to go to the pool this afternoon, but I just can't; I hurt way too much. My knee is so much more swollen today than it has been in a long time (and that is saying a lot). I need help with this crippling knee. I know it was my first day back, but I kept it up, kept it iced, and allowed my co-workers to help me (they even got my coffee for me, it was really sweet), but I cannot see this working if this is what is going to happen. I parked right in front of the door, and the elevator is right there, so I had very little walking to do. I remember when I went back to work before (half days), and every day of the week, it got worse and worse, until my OS pulled me back off work again (once he saw what was happening). Honestly, I should be able to sit, with my leg up, and ice packs on it for 1 1/2 hours, and not have this happen. I even took my shower last night, so I would have that out of the way this morning, saving me from doing too much before work. I am feeling down, in pain, and lost.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 21, 2011, 11:32:42 PM
Sorry Annie it was such a rough day. :( Just give it a week or two until your body gets used to the new routine. Put it way up tonight and when you get home from work. Hang in there girl, you can do this.
Take care, BIG HUG
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 22, 2011, 12:14:07 AM
I agree.  This is a big change.  Your body needs time to adjust.  After work, put that leg up and let everyone wait on you. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 22, 2011, 06:21:40 PM
Hey Annie,
Just got back from PT knee hurts like mad at the moment, and I am stoned out of my gourd. Hope you are home with your leg up in the air with ice on it.
Take care Annie, My thoughts and prayers are with you. :-\
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 22, 2011, 08:32:38 PM
Thanks for the support.

Kk4, I am so sorry your hurt is so painful. Please try to take it easy now.

I just returned home from PT myself, and my therapist gasped when she saw my knee (it is really bad). The increase in swelling really began last week, and just keeps increasing. She is a bit worried, since the swelling has spread down my leg, in my ankle, and my foot. I think she is going to call my OS's office for a heads-up on what is happening. I have not been this swollen since I was immediately post-op. I know I am doing a bit more now, but I am also taking it easy. I sit at work, leg elevated, ice packs in place, and accept the help my co-workers offer. I need some help, and I hope between my OS, my PT, and me, we can figure out what to do. Swelling makes more scar tissue, and my ROM is going backwards fast in response to the pain and swelling.

I will keep you all posted.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 23, 2011, 07:13:24 PM
Hey Annie have you tried compression stockings of some sort might help keep the swelling down to a dull roar.  Just a thought you should maybe ask someone.
When You elevate a t night do you put it really high, could you get that great better half of yours to massage from the ankle towards your knee with your leg up in the air,,, always helps my leg.
I am just so sorry about all of this I wish there was more I could do or say. Take care,
Know that you are in my thoughts and prayers. :(
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 23, 2011, 07:36:31 PM
Hi Rk4,

Yes, when I elevate, I have it way up in the air (not just sitting with it partially up in a recliner). After my PT did ultrasound, lymph massage, and e-stim yesterday, the swelling went marginally down overnight. However, by the time I got to work, it was right back up again. My limb is as swollen, if not more swollen, now that it was yesterday. I just spoke with my PT, who is calling my OS right now, to get an idea of how to proceed. I cannot do PT at all with this level of pain and swelling, so we need to come up with a solution. My PT is afraid they are going to recommend I go right back off work, but I will counter suggest that maybe I just go down to every other day. That way, I could still do some work, while maybe getting this under control. I cannot miss doing PT because of such an increase in issues, it is only going to allow the scar tissue to get an even firmer hold on me. However, this swelling is going to cause even more scar tissue to form, so I am in a bit of a situation here. I hope we can all put our heads together and come up with something that may help some.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 23, 2011, 09:44:51 PM
I like the idea of compression.  With my setback, my OS suggested compression whenever I will be on my feet a lot, like at work.  I wrap it very snug, not so tight that it cuts off the circulation, but enough to keep swelling from building up.  It restricts my ROM, but controlling the swelling is more important.  It also gives extra support when I am running around school like a crazy person. 

Has your doctor considered steroids or anti-inflammatory prescription drugs to help with the swelling? 

I also like the idea of the massage.  It will probably feel nice and help too.  Yesterday, a friend of mine was listening to my tale of woe with this knee.  She suggested going for a full body massage.  Hmmmm... At first, I thought it was just indulgent.  But then I realized that it is not such a crazy idea.  Pain causes stress.  Stress is not good for recovery.  My hip is starting to hurt again because I sometimes revert back to a limp.  A massage could loosen up the muscles and maybe relieve a little pain.  I think it is worth a try!
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 24, 2011, 01:20:15 PM
Hi Mermaids,

Yes, I have been on a prescription anti inflammatory through this whole mess. We have tried different one's, trying to find one that works well for me, but they all seem to help minimally. I cannot take steroids (allergy), so that is not something I can do. In fact, I cannot even have them on my skin, since I break out in burning hives almost immediately. It is an odd thing that happened after I had chemo, and my body cannot handle the steroids any longer.

My PT actually suggested TED hose too. I will look to see if I still have some left from surgery (they get kind of mangled after wearing them so much, and the elastic gets shot). I may have a pair somewhere, and will give them a try if my OS also thinks it is a good idea. My ROM has been an issue, and I am not certain he will want me wearing them if it restricts my ROM further, but I will find out. My PT also does massage and lymph drainage on my knee during each appointment.

Thanks for the suggestions.

Annie

Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 24, 2011, 08:03:00 PM
Well Annie,
So how did your day go, have been thinking about you so I thought i would check in. :-\
Hope the nasty knee is no worse than usual. Well have to go put mine up was out and about with a friend today so the knee is angry at me. :'(
Take Care, positive thoughts and prayers coming your way. :)
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 24, 2011, 08:53:25 PM
I figured you had tried everything possible, but thought I would throw it there, just in case.  The swelling vs ROM thing can be a vicious cycle.  To get ROM back, you have to exercise it... which causes swelling... and swelling makes it harder to get ROM... so you have to exercise more to get the ROM....  ack!

Hope the work day wasn't too hard on your knee. The last two days of work almost did me in.  Yesterday, I was not sure I could take another step, quite literally.  I was half way between two classes, stopped in the hall, and had to just stand there for a few minutes to gather the courage and strength to get to the next class.  I think I had an extra burst of energy because spring break starts tomorrow. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on March 24, 2011, 08:57:28 PM
Hi Rk4,

I just got home from PT. Again, she really could not do too much because of swelling, so she did ultrasound, massage, etc. My PT did place a call to my OS's PA, and was awaiting a return call. She is looking for some direction regarding what they think we should do? Should we try to further unload the joint, back down work a bit, get me in to drain fluid out of it again? The back of knee is bruised yet again too. The mysterious bruises had disappeared when she looked at the area on Tuesday, but they are back again in the exact same places. Funny how my joint gets so swollen, the back and front of my knee get so darn painful, and bruising appears behind my knee. It is all very strange, and still worrisome. I do not want to say anything to my boss until I know a bit more regarding what the recommendations of the OS will be.

I cannot keep going along with a knee this swollen, and missing out on PT because of it. However, my PT is trying not to make a bad situation worse by causing even more swelling, pain, and joint irritation. I am at a loss.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on March 24, 2011, 09:19:14 PM
Oh sweetie, I feel your pain.  I am in that same trap of needing to do PT to help one thing, but can't do PT because it irritates another thing.  Grrrr.  I need to work to pay all of these medical bills, but I can't work very much because of the pain.  Grrr.  It is all very annoying and frustrating.  I am trying very hard to stay positive.  I am trying to not think long term.  I think about what can be done right now.  Baby steps. 

Hope the OS has some good news for you soon.
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on March 26, 2011, 07:15:07 PM
Afternoon Annie,
Just sitting here with my ice on my knee after my home PT thinking about you. :)
Sorry you are still struggling so, but I expect you do feel somewhat satisfied about having gone to work to make yourself feel useful again.  It is always a boost to the brain.  Glad to hear your PT is doing lymphatic drainage it is good and helps with the movement of fluid. 8)
Well got to go.
Take Care,
Prayers coming your way.
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on April 01, 2011, 12:38:06 AM
Evening Annie,
Hope things are going OK and the knee has decided to give you a little bit of a break. :-\
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on April 04, 2011, 04:19:14 PM
Well Annie it is Monday once again. :)
Just stopping by to let you know I  was thinking about you, and hoping the knee will get used to work once more.
Take Care
Healing vibes on route.
Rk4 ;)
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on April 11, 2011, 06:57:10 PM
Hi Everyone,

I am so sorry I have not posted in a while, but I have frankly been too upset to post. My knee is not doing well since returning to work, and it feels like I have tight bands pulling inside the joint (again). I have an appt with my OS tomorrow, but I do not anticipate he will have any direction for me as I think he is out of ideas. I have been struggling in PT, and got so upset last Thursday, I quit (at least until after my appt tomorrow). We spend all of my PT time just trying to get the swelling down, so I rarely do any exercises, and I am defeated.

In November when I had my TTO, fat pad fibrosis was found, along with extensive scarring of the lateral retinaculum, pre-patella area, and both medial and lateral gutters. I began making normal PT progress until around week 5 post op when all progress stopped. Now, things have gone backwards (again), and the scarring is back. I just think my OS is not well-versed in how to handle this, and as much as starting over makes me feel sick to my stomach, I called today and scheduled an appt with Dr. Wojtys in Ann Arbor. They are able to get me in on May 3, which is a relief. I was afraid I would have to wait three or more months to see him, so a three-week wait is ok. I can see that some of the others here on the board have had some success with Dr. W., and hope you can give me some additional information about what to expect. If you prefer not to post your experiences here, please feel free to send me a private message. I think I am doing the right thing, and since I am at the end of my rope here, I pray he can help me. I went outside yesterday, since the weather was glorious, to help hold a yard-waste bag for my hubby while he raked the yard. In about ten minutes, the swelling/pain in my knee was so bad, I can to come back in the house and elevate my leg. This knee is running my life, and I am tired of it.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on April 11, 2011, 07:13:48 PM
Hi Annie

I have been thinking of you often. I had hoped your absence meant the knee was settling and work was providing some distraction. I am upset for you that things are not better. However, I think you have totally done the right thing in scheduling to see DR W and get a proper direction on how to treat this. People HAVE overcome AF and whilst I can imagine the thought of starting afresh is just terrible, life as it is sounds pretty damn frustrating. A surgeon with the right pair of eyes and experience in this should have a workable plan. I will be sending positive thoughts for the 3rd May, not so far off. I wish i could say something to help, but just know that you are always in my thoughts when I log onto KG and I often wonder how you are doing. Strange how we wonder and worry about people we've never met - but knee geeks understand knee geeks....

Take care and do let us know how the appointment goes. We fully understand if you don't want to be posting if you're upset. We're here when you need us.

Big big hug xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on May 04, 2011, 09:49:04 PM
Hey Annie

Did you have your appointment yesterday? I hope you got some positive suggestions. Let us know when you can. I often wonder how you are doing,

Lottie xxx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on May 04, 2011, 10:13:59 PM
Hi Lottie,

Thanks for thinking of me. I did go to Ann Arbor yesterday and met with Dr. Wojtys. I took all my tests and surgical reports for him, and they did a ton of xrays. I first met with Dr. W's PA, then Doc came in. He noted that my body over heals, causing too much scarring in the joint. However, he asked me to remove my shoes and socks, and roll my pants up over my knees. Then he felt my legs and said, I believe his exact words were: "You have the most profound, obvious case of RSD I have seen in over two years." He asked me to walk, and said that my quad is not firing at all, in response to pain and stiffness. I almost began crying right there, right then. My current OS suggested RSD to me over a year ago, and I got really mad at him, telling him he was wrong, I did not have all the symptoms, and refused to discuss it any further. My PT also suggested it more than once, as did my current OS's PA, each time I got mad and felt like it was a cop-out. I felt like my medical team was just unable to figure out what is going on with my knee, and trying to stamp it RSD. To be honest, I also did not want to have this cross to bear. I feel like I have already had my fair share, and just have a difficult time trying to face this right now. When my shoes and socks came off, and my pants rolled up, I looked down and could see what I knew he would see. He looked at his PA and asked him what the first thing he noticed about my legs was. His PA immediately said "they are totally different colors." My bad leg is also much colder than my good leg, and the swelling was all the way down in my lower leg, ankle, and foot. Dr. W, of course, wants me to have a sympathetic block done, and has detailed how to help with this. One thing he noted was that putting ice on my knee is terrible for RSD patients. I have been icing my knee daily now for over a year-and-a-half. Frankly, ice feels good on my knee, helping numb the pain a bit. I still am on the fence about this diagnosis, since I do not feel that I have all the symptoms of RSD. I have an appt Friday with my current OS's office to get my final synvisc injection, and will speak with his PA about my Ann Arbor appt at that time. I am not sure what to do now? My current OS tried to get me to have a sympathetic block done a year ago, which tells me he could treat me for this condition too. I guess I still am not convinced that is the problem. Dr. W. said that once the RSD is under control (if it is brought under control), he would then consider getting the scar tissue out of the joint. He said that until the RSD is dealt with, I will not progress, and rehabbing the knee is just not possible. I absolutely, positively do not want my spine messed with at all, and it scares me to death. I am so confused, and just need a little time to think things through a bit. Dr. W. calmly looked me in they eye and told me that even though I do not want RSD, there is no doubt in his mind that I have it, and it must be treated appropriately. He did note that although they really do not know why some people develop RSD, it is more prevalent in females, and brain lesions can contribute to this happening. I do have MS, and have wondered for some time if my MS was contributing to my over-healing body and scar tissue problems?

Bottom line right this minute: I am confused, frightened, angry, and a little depressed.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on May 04, 2011, 10:22:40 PM
Hang in there Annie,
We all care and are concerned for you. Even though you don't like the idea you need to be treated so we can get to know a happier Annie. :)
Try not to be scared, you have a great hubby and an excellent OS in your corner now.
Take care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: mermaids on May 04, 2011, 10:37:40 PM
Annie,
Sorry to hear about the RSD.  Not a good diagnosis, but..... you can't get better until you know what you are dealing with.  Definitely take some time to process the info.  Sounds like you found a good Dr. 
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on May 04, 2011, 11:03:59 PM
Thanks everyone,

The thing is, I already have a good OS who tried to approach this diagnosis with me a year ago, so I just do not know if I should use him and his recommended anesthesiologist for treatment, or switch everything and go with the new guy? I also already know the hardware needs to come out from the TTO, and Dr. W., complimented my current OS for how wonderful my alignment now looks (compared to the untreated knee). Both of the OS's are about the same distance from my home (about an hour drive), so that is not an issue at all, but I am just plain torn. I guess I will figure more of this out after I speak with my current OS's PA on Friday; until then, I do not want to make any major decisions about how to move forward. I swear, I rarely ever catch so much as a cold (just had the first one in five years a few weeks ago); I just get things like MS, cancer, and now, apparently, RSD. I am still in denial that I have RSD at all, so I am in a funny place mentally with all of this.

Annie
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Rknees4 on May 05, 2011, 03:33:06 AM
Hang in there Annie,
You will get your head wrapped around all of this in time. It is just a shock to the system. Most of us don't like to know the answer and when we do get it we are not sure how to deal with it. All very normal. :o
Take Care,
Rk4
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: Lottiefox on May 05, 2011, 11:44:20 AM
Hi Annie

I can well imagine that you are scared, confused, frustrated...lost. We NEVER want to hear that we have any form of complication, and goodness knows you have had more than your fair share. I think it is very tough to take on board a diagnosis that you don't want to hear, and of course the natural way is to look for evidence to the contrary. I think as we are all informed patients on here, we naturally question diagnoses. However, the surgeons are the ones who see it every day and with two good OSs mentioning the same diagnosis then I guess you have to start to consider it as a possibility. I know very little about RSD or the block they are talking about. What are the risks? Positive outcome ratios? I wish I could make things better for you - I had a foot op two weeks ago and of course had imagined I'd sail through at rapid pace and have zero issues. Two weeks in, and a wound that got sweaty in the immediate post op days with heavy bandage and a UK heatwave has now healed but cellulitis set in - mild, and I spotted what was going on as soon as it went pink and hurt so my doc saw me the same day and I'm into my pills. NOTHING like your situation but we never want to have things that set us back. I guess you will know more after the appointment this week. Don't rush into anything, this is a big one to take on board but you will get there. You're a brave and strong woman - look at what you've coped with and come through. I don't mean to sound patronising, but I sense your spirit.

Take care and keep us posted,

Lottie xx
Title: Re: Annie's TTO Surgery is Tomorrow! (November 15, 2010)
Post by: annie5970 on May 05, 2011, 03:11:26 PM
Hi Lottie,

I am so sorry you have experienced complications from your foot surgery, and pray you begin to feel better. We all know that complications do happen when surgery is performed, but when it actually happens, it seems a bit unbelievable. I guess we both drew the statistical short straw when we had our procedures done. For me, I think this RSD set in after the very first surgery back in January 2009, which is when my leg got discolored, and the abnormal swelling started. I asked my first OS what was causing it, and he shut me down, saying I was "just getting old", and he could not help me (I was 38 years old when he said that). I also saw a rheumy who did all her tests, and told me I needed a surgeon. One thing I am going to do before making any kind of a decision is to see my neurologist. This RSD is caused by an overactive sympathetic nervous system that has gone haywire. I am not the average patient since I also have MS, and I want his input before I do anything. My MS has been in remission for several years, but I am afraid if my spine is messed with, it may turn the MS switch back on. My body already sees my myelin as a foreign invader, and I do not want fluid injected in my spine, only to throw my MS into overdrive. Frankly, it would be giving up one monster for another, and I will not chance it until I talk with him. Also, this is something he would want input with, since he oversees my MS management. I had my annual exam with him in December, but I was so soon out of my TTO, he did not mess with my left leg during the exam. He is a wonderful doctor, and I trust him completely. I just think that anything dealing with my nervous system has to be ran by him before I jump in and make a big decision.

Annie