arthrofibrosis, loa

[conno11y]

I am excited that I get to post what may turn out to be a happy story! Thank goodness for kneeguru and the advice to find an OS with AF experience. I have to travel 3+ hours to see my OS, but my knee is worth it.

Brief history: I fell skiing in Jan 2008 and sprained my MCL. My extension and flexion were both limited and I had anterior pain, medial to the patella. A couple months of PT did not solve the problem. An MRI showed nothing wrong, except the sprain and a bruise on my tibia. My OS suspected a meniscus tear that didn't appear on the MRI. In April 2008, I had arthroscopy surgery. There was no tear, just inflamed plica beneath the patella that the OS removed. After surgery, I was advised to 'do what I am comfortable with'. I was off crutches by day 4 and back at work on day 6. I had no immediate PT, no drugs, and very little icing. I resumed PT after 2 weeks, but my ROM was still limited. In fact, it took months to get back to my pre-surgery ROM. When my original OS seemed puzzled by my lack of progress, I sought opinions from 3 more doctors. An MRI showed scar tissue in my fat pad. My currect OS says that the scarred fat pad was blocking my extension because it couldn't move out of the way to allow the femur and tibia to come together. It was also blocking flexion because my patellar tendon was scarred down. My OS says that surgery on a stiff knee is a bad idea. I went into surgery stiff and came out stiff and thus got AF. He says that the initial ROM limitaion was because my MCL healed too tightly and it should have been addressed by more PT.

I had arthroscopic surgery a week ago to remove the scar tissue. I was worried that my tight MCL would still restrict my extension after surgery, but I am THRILLED to say that I can now pull my leg into hyperextension!! My flexion has decreased from 129 to 75, but the OS says to only focus on extension for now. We'll get extension, then work on flexion (without losing extension), then work on strength. I am worried that I will grow scar tissue that will block flexion in the next few weeks, but I will follow doc orders.

I spent one night in the hospital and three nights in a hotel attached to the hospital. I was in a CPM set at 0-30 24h/day (including sleep) and I had a cryo cuff on 24h/day to compress the leg and keep it cold. I got up only to use the bathroom and do exercises. I did my own PT 4X/day, including the following. (A) 10 towel stretches: pulling the leg into hyperextension with a towel for 10 sec and then contracting the quad to try to keep the leg elevated for 10 sec. (B) 10 quad sets: contracting the quad for 10 sec to push the knee down into the bed. (C) 10 min on elite seat: a device that straightens the knee using straps above and below the knee - like heel props on steriods.

Now that I am at home, I no longer have the CPM, but I still have the cryocuff. I have added the following therapy to my 4X/day sessions. (D) 10 straight leg raises. (E) 10 min heel prop with 5 lb weights on either side of the knee. (F) Prone hang as desired: lying on tummy with leg hanging off edge of bed. (G) Standing quad sets as desired. I am supposed to limit walking/standing to 10-15 min at a time and I am supposed to use 'good habits' when walking/standing - i.e. don't favor my good leg.

I am taking 8 tylenol, 4 Aleve, and 2 Pepsid per day. No stronger drugs needed. The day of surgery was pretty good. I woke up nauseas, but drugs fixed that immediately. The IV pain meds worked well. I had trouble sleeping that night because my back was killing me. I may have a pinched nerve from limping for 8 months. The day after surgery was the worst for me. My back is a real problem. I got really nauseas the 3rd day. They say it was a reaction to the anesthetic. I completely lost my appetite, but that has come back now.

I am optimisitic! I can't believe that I can pull the leg into extension equal to the other leg! I have some pain medial to my patella - I am hoping that goes away. Swelling is present, but not obscene. We'll see how it goes. I'm off for another stretching session!

[Mookie11]

Thanks for creating this post op thread. There are so many of us who have struggled with AF. It is great to hear of how others are coping with it and what is working for them. Let us know how you are doing!!!!

Candace

[catwoman88]

Hi Sarah,

Great to hear your progress so far after your LOA, its always so encouraging to hear that extension can be re-gained. My knee is stuck at 45 degrees lacking in extension and to say its getting tiresome is an understatement!, my other knee is so painful now as is the ball of my foot on my bad leg with me hobbling around on tip toes for so many months now due to failed AF surgeries. My knees not been straight for over 1 1/2 years now.

I know i've always been told extension is the most important thing to gain rather than flexion as the extensions needed for walking but you can live with a lack of flexion. My flexion used to come back pretty quick after surgeries so that did not seem to be a problem, extension was always the issue, but now my flexion is starting to slip to about 105 - surgery is still over 2 months away , but i'm not letting it beat me, i'm planning a 3 city trip into the states in November - guess my knee can't get much worse before surgery

So glad that you were able to find a great Dr to deal with your AF as we've all been to OS who know little or nothing about this condition and so end up making matters worse. I also owe alot to knee geeks site as without this site i'd been off seeing another OS and i would not even have known that AF was the cause of my knee issue. I'd have just gone with what they told me.

Sounds like you've pretty much got your exercises worked out the ones you're doing sound simliar to the ones i try and still do the best i can. Keep up the good work and keep us posted.

Lianne

[conno11y]

I'm sorry you have to wait so long for your surgery, Lianne. I'm glad you're not putting your life on hold completely though. Good luck to you.

I had my follow-up appointment with the OS last week (2 weeks post-op). I can't get my leg to hyperextend using my quad (in other words, I can't do an active heel lift), but I can still pull the leg into hyperextension with a strap or towel. Since I have maintained full extension, we have added some flexion work to my home exercises. I'm hoping that once I regain quad strength, I will be able to hyperextend my leg using my quad. But we won't work on strength until I have a full ROM.

My home exercise program now includes the following: 2-3 flexion sessions per day and 3-4 extension sessions per day. Immediately following each flexion session, I do an extension session to make sure that I am not losing any extension. I have 5 extension stretches: (A) 10 min heel prop with 5 lbs on either side of the knee, (B) 10 towel stretches with a quad set between each to try to keep the heel lifted, (C) 10 straight leg raises, (D) 10 standing quad sets with a band pulling forward my thigh, and (E) 10 min in the elite seat. I have three flexion stretches: (A) 10 wall slides, (B) 4 flexion hangs for 30 sec each, and (C) 10 heel slides on the floor, with a quad set between each. I have been keeping track of my flexion progress by measuring how far I can move my heel on the floor. I am supposed to use 'good habits', including walking without a limp or bent leg. Whenever I am standing, I am supposed to keep full weight on the bad knee in a locked back position. Whenever I am sitting, I am supposed to have the leg fully extended. I have to admit that this is hard. When my leg is fully extended for more than a few minutes, I have too much pain to concentrate on anything else. It is also hard to walk without a limp since I am so very slow.

I am disappointed with my lack of progress when it comes to flexion. I have been bending for 1.5 weeks and I still can't get to 90 degrees. I was at 129 degrees before surgery and the OS got my heel to my butt while I was under. But, I haven't lost extension and that is very important. I have some anterior pain and pressure that concerns me. It is medial to my patella and I'm hoping it is just my MCL complaining (my original injury was an MCL sprain). I also have some pain beneath my patella (posterior to it) upon flexion. The OS said that my patellar tendon has shortened somewhat. I am hoping that this pain is not the beginnings of infrapatellar contracture syndrome.

I returned to work four days ago (3 weeks post-op). This is a challenge. When I was off work, I was stretching for 4-5 hours/day. (I guess I am pretty slow when it comes to inflicting pain on myself.) Now that I am at work, it is harder to get all that stretching in. I am trying to incorporate some of the extension stretches at work, but it is hard to experience pain publicly. I'm off all drugs, except an occasional Aleve when my back starts acting up. I have some trouble sleeping from both knee and back pain.

That is all for now. I go back to the OS in 2 weeks!

[MartinsGirl]

Hi conno11y!

I'll be checking back on your thread to follow your progress. I had AF after my surgery back in October of 2007. I was stuck at 75-80 degrees flexion and was 10 degrees off of full extension for a while. My OS even talked about me getting an MUA if I didn't get my extension down to zero. For weeks I worked with my PT and did exercises to stretch out my scar tissue and I eventually got down to a mere 1 degree off full extension. Since then I am now at 0. I'm not sure if I have hyperextension, but as you even said, it's essential to at least get full extension in order to properly walk, etc. Right now I'm at 130 flexion. My good leg only gets about 136 flexion (I know that flexion can range from 135-150 depending on the person). It was a long road to recovery, but I'm pretty much here. Reading your post makes me think back to when I was suffering and was frustrated, etc. I fully understand your frustration with lack of flexion progress. It took me weeks to get past 90 degrees, then 100, then 110, etc. I made tiny increments of progress. Back then I was very frustrated, but now I know that even though my progress was slow, it was still something to hang onto.

I too have pain when I bend. I had more pain a few months ago. That's because I had a microfracture repaired and a piece of meniscus removed. My OS said that my knee would always hurt in that one spot whenever I tried to bend it past 130 degrees. So even though I can't get heel-to-butt I'm still happy.

You'll see more progress. I can tell you're a very determined person so you likely want to be up and about, able to bend fully, in no time.

I'm an elementary school teacher and went back to work 1.5 weeks post op. I was on crutches (NWB) for 6 weeks. I totally hear what you're saying about not having time to stretch. I barely had a moment to sit down. I still think back and wonder how the heck I managed to be at work for 4.5 weeks on crutches, and hardly ever sitting down.

I remember how hard it was to keep my leg fully extended while sitting. My PT told me to do that while watching t.v., and even had me putting ankle weights above my knee with a rolled towel under my ankle so that there was some pressure pushing down on my knee as I sat and watched t.v. It hurt a lot at first, but slowly it hurt less and less.

So is your quad atrophied? I think that's what you were saying since you cannot do an active heel lift). that was so frustrating for me too. It was due to my 6 weeks of being non weight bearing.

You will see progress.....slowly but surely. I'll check back to see how you're doing. Wishing you a quick recovery
~Nevella

[conno11y]

An update: my initial optimism is fading. Surgery was just over a month ago and the good news is that I can still pull my leg into hyperextension with a strap. My quad is too weak to push the leg straight on its own, but the knee feels pretty loose when I stretch it out using a strap or weights.

The bad news is that I have been working on flexion for 3 weeks and have made no progress. I still can't get to 90 degrees. I took steroids this week to see if that would help, but I see no difference. I am confused because before surgery, I could pull the knee to 129 degrees. Why can't I get there now? I understand that the tendons, ligaments, and muscles have been immobile since my accident in January and thus need to be stretched out. But if they were stretched enough to get to 129 before surgery, why aren't they now? I don't think it is new scar tissue, because I've been doing PT everyday since the day of surgery. Although I didn't start flexion work until 2 weeks post surgery, that doesn't seem long enough to build more scar tissue. I still have some swelling, but it is not obscene.

Pain is blocking my flexion - mostly a stretching pain, but sometimes more sharp pain. I stretch for hours and hours a day - it is always on my mind. I went through torturous forced PT in the past and I think I would lose my mind if had to do that again. I wish there were drugs that could take away the pain so that I could progress. I've tried Vicodin, Tylenol3, and Darvon. None worked on acute pain and they all make me sick anyway. I would put up with the nausea if I could just make some progress.

Can anyone explain why I've had such a loss of flexion after surgery? I know it is common, but I don't understand the reason. Has anyone gone through something similar?

[MartinsGirl]

I'm sorry you are still stuck with flexion And I'm even more sorry because i have no idea what could be causing it If you have sharp pain, then for sure you should not try to push past it.

I didn't do any flexion until 2 weeks post op and that's when my scar tissue formed. I was stuck below 90 for about a month. But i still made tiny increments. So, are you not even progressing by 1 degree?? Do you still go to PT and they measure it each time? Even 1 degree is progress.

I hope someone can offer you some info. Maybe post your question under the "emergency" thread??? I'm so sorry.....

[conno11y]

I live 3.5 hours away from the OS and PT, so I only go every few weeks. I had a PT appointment yesterday and I am encouraged that she was able to get me to 103 degrees in a torture device called a flex seat. I got to 96 degrees on my own during a wall slide, so I am encouraged that I've broken that 90 degree barrier! The PT said that it may take 2-3 months to regain flexion. That seems optimistic at this rate. She let me bring the flex seat home and I will start using it to up my self-torture tonight. Hooray .

One good thing is that the majority of my pain feels like stretching pain now. The sharp anterior pain/pressure that had me worried has faded. As much as I hate the pain, at least it doesn't feel like I am breaking something. My only worry now is that as I bend, I am crushing my patella into my femur and damaging it.

I wish one could measure pain objectively. No matter how I describe it, I feel like everyone suspects that I am exaggerating. I hate feeling like a wimp. I know my dad thinks I should be able to power through this. I just wish they could know how bad it is. I wish my husband could know so that he wouldn't judge me for my daily bouts of crying. He never says it out loud, but I know he thinks I am too sensitive.

Nevella, why didn't you work on flexion until 2 weeks post-op? Was it because you were focusing on extension or was there another reason? Do you have restrictions in your life now due to your knee? For example, could you happily hike in the woods and keep up with others? This is what I want to be able to do. I also want to be able to return to yoga. Of course, the first step is being able to walk without a limp. But it would be so nice to know that at some point, I will be able to be active at will.

Thanks for keeping tabs on me!

[MartinsGirl]

hey you!

I didn't work on flexion until about 2 weeks post op because I had a really incompetent PT and I didn't know that I was supposed to start bending asap. I had never had a knee injury and didn't know much about knees and rehab, etc. I just figured I could rest my leg for a week or so. My PT didn't say anything to disagree, so i figured that was fine. Well, in those 2 weeks (or week and a half) I guess lots of scar tissue built up. I wish my PT had been more knowledgable and had told me "Nevella, we need to start working on your flexion right away". My OS's person physiotherapist was too far away for me to go see (I would have to take the train and then a subway, and so I'd have to miss work twice per week.....and i can't do that....especially as a teacher.... i could not just go in later on or on the weekend to make up for lost work time, lol). So yeah, I wish I had started bending right awway. I could have saved myself a few months of painful rehab. But that's in the past for me. And it will be for you too. It will just take a while (just like it did for me). I know it sucks, and is frustrating.

I'm glad your pain is no longer the sharp pain. So if it's stretching pain, you just have to slowly push a bit more each day. I remember those days.

wall slides rock!! Those are what helped me. Do you have one of those swiss balls?? That worked wonders for me. I'd sit on it and hold on to a table or chair with one hand and then slowly rock forward, keeping my bad leg bent as far as i could and my good leg extended. then i would just gently roll forward on the ball, even just 1 degree past where i could go without pain. I hope that makes sense. Have you tried to swiss ball/stability ball. i went and bought one from my local Walmart.

yeah i hated when people just didn't understand the pain. I know lots of people have high pain threshholds. My fiance would have pushed so hard past the pain and he wouldn't have taken as long as I did to recover. But i'm a baby, lol. I don't like pain either. I never cried at PT, but many times I was near tears, or sweating from pushing so hard, lol.

Yes you WILL be active again I still can't sit cross-legged. I just get so busy during the day that I dont' always do my quad strengthening exercises. I still need to build up a bit of my quad muscle. But i'm still much better than I was before. I can run, etc. But I guess my goal should be being able to sit cross legged. But I'm happy with what i can do now. the only restrictions now would be that I can't sit cross legged or squat completely/kneel completely. But I don't need to do that for work, and I don't want to. My OS said that I'm at a great spot for my way of life. If I was a gardener or something, I'd need to be able to kneel. But i'm a teacher, so I'm okay with being able to walk freely, run, etc. I don't have a limp or anything. so I just have to maybe try to push my flexion to 138 (i can get to around 133 and my good leg to 137 i think), and getting my quad back as strong as the other one. that's all. I won't try soccer again, or sports where I pivot, just because it's not worth it to me to have to go through all of this again.

I think i limped until early June. So that was 7 months post op! It was partially that i was so used to it, and my one quad was weak. but now i have no limp. So don't worry, your limp will go away. I got so tired of people saying to me "you're STILL limping??", lol.

ok, gotta go. keep pushin

[conno11y]

Hi Nevella,

I do have a ball and I will give that a try. The flex seat is terrible, but I think it is helping. Thanks for the encouragement!

Sarah.

[conno11y]

Just a little update: the flex seat is great. It's painful and I hate it, but it is bringing results. Being strapped into the flex seat lets me push harder than I can with a wall slide. I previously had a flexionator by ERMI and I think that was a better piece of equipment (more comfortable and easier to track progress), but the flex seat is good too.

I've been monitoring my flexion progress by measuring how far I can pull my heel towards me using a strap. I mark my heel location when my leg is extended and and then when my leg is bent. My heel-to-butt measurement would (hopefully WILL) be 75 cm. On the day I started flexion work (5 weeks ago at 2 weeks post-op), I pulled the heel 29 cm. Before getting the flex seat, I was stuck around 36 cm. But, I've been working with the flex seat for 2 weeks and yesterday I got to 47 cm. If I can gain 1 cm/day, I could reach full ROM in a month!

I can still get hyperextension if I put a strap around my foot. It is stiffer than it used to be and the stiffness seems to be directly correlated with how much flexion I've achieved. I have to stay diligent with the extension work.

I still limp and my lower leg hurts when I straighten (could be my fibular head?). But, I am encouraged by the flexion increases, however slow. I do need to focus more on proper walking.

[conno11y]

I had a bad weekend and am fighting negative thoughts. I lost a few cm on flexion and I don't have an explanation. I can see a (new?) bulge near my patellar tendon and I think its scar tissue. Everyone says that extension is the key to walking without a limp and my PT thinks it's so great that I can pull into extension with a strap. But when am I going to see a functional improvement? I am so sick of the knee pain and back pain and leg pain.

[conno11y]

I feel like I should delete this whole thread since it was so much more optimistic to start. I can still get hyperextension when I pull a strap around my foot, but it isn't as easy as it used to be. I can't get hyperextension using my quad and I can only stand with a straight leg right after I've done my stretching work. I'm limping badly and my back is messed up as a consequence. My passive flexion is past 90 degrees (I'd guess maybe 105), but I can't get to 90 actively.

When I work on flexion, I have an aching pain down the lateral side of my shin bone. That seems new and it seems to be linked to the back pain that I also get during flexion and extension. When walking, I often have pain at my fibula head on extension.

I feel like I could do so much more rehab if I could just block the pain. I'm not taking any meds, but I don't think this is the type of pain that meds can help. I have Vicodin and Tylenol3 and Celebrex and Darvon and Aleve and Ibuprophen and Tylenol and Aspirin in my cabinet. The narcotics make me sick, and I don't think they help anyway. Anybody have a favorite drug?

I guess I'm having a blue day (week, month...)

Sarah.

[MartinsGirl]

Hi Sarah,

Firstly, I'm so sorry that I've neglected your thread. I can't fix my KG notifications so it shows me all of the threads I've ever posted on (so I can't easily tell when a new post has been made). I guess that's my fault for posting on so many peoples' threads, lol.

I'm surprised nobody else has been posting here.

I read in your other post that you're measuring flexion in terms of cms. Over here I'm used to it being done in degrees. So i'm trying to imagine what degree of flexion you have.

Unfortunately I don't know what a fibular head is. So i don't know what you might be experiencing. I remember the stiffness and the limping with my injury. Definitely frustrating. And the loss of flexion. But you seem to be getting there. Slowly but surely!! Yay!!!

My favourite drug, lol, was Motrin IB (super strength). I took 2 of those and it helped my pain at physiotherapy. It also didn't make me sick. But everyone is different. I hope you find something that works, because pain sucks when working on flexion (I know!).

I don't know what the pain down the side of your shin bone could be. I had pain in my knee, but that was where I had the microfracture repaired (and it was normal). I hope you figure out what it is.

Do you see an OS again soon??

Hey, if for some reason I don't post for a while, send me a message, k? Also, if you pop by the thread that I share with my buddy Lenore, you'll meet lots of people and just get a few laughs, and some encouragement. I try to stop by that thread daily (or every other day). You're going through a lot and so you should be around people more (in a thread that is more active). I just don't want you to give up on KGs. There has to be someone here going through what you are (and know what you mean by the type of pain you're describing).

i hope tomorrow is a better knee day
~Nevella

[conno11y]

Hi Nevella,

Thanks for the response. I will try ibuprophen again and see if it helps. The problem is, when I am on drugs, I can't drink and wine is my favorite pain killer these days. It has been 2.5 months since my surgery. I went back to the clinic on Friday for some PT. It had been 6 weeks since my last PT session.

Extension: The PT said my extension was alright. She said that enough time has passed that I shouldn't be making any more scar tissue. If that is true, it is comforting. I have been very worried about losing my extension. I still need to warm up for gravity to pull the leg straight while sitting. I can pull the leg into hyperextension using my arms, but I can't get there using my quads. I still walk (limp) with a bent knee. I am hoping this will improve when I regain some quad strength.

Flexion: 6 weeks ago, my flexion was at 96 degrees during a wall slide and 103 degrees in the flex seat contraption. This time my flexion was 112 degrees while pulling on my leg with a towel and 120 degrees in the flex seat. I can only get my knee to about 90 degrees using just my hamstrings, but I also hope that will improve with strength. I like that 120 number. I was at 129 before surgery, so I am making some progress. I still shift my hip when I go upstrairs and I can't go downstairs at all.

Patella tracking: My patella catches when I bend my leg. The OS said that my patellar tendon has shortened by a few mm. This has me worried about patella baja. But, oddly, it seems that my patella gets stuck up (proximally) when I bend my knee. I have to push it back into place with my hand. I am hoping that is improves as my flexion improves. It simply must improve for me to have a functional knee.

Back: I have lower back pain when I do my stretches for both flexion and extension. I also have pain that radiates down my shin bone. The PT said that I am probably pinching a nerve in my back that correlates with my shin. It limits my PT and really irritates me. I think the only thing that will fix my back is to stop limping... which requires my knee to get better... which is hindered my dang back. Sigh.

The PT added some strength exercises (step ups, step downs, biking, knee extension) to my home exercise program and I will return to PT in 6 weeks. I will see the surgeon at that time and have some Xrays.

I know everybody heals at a different rate and I have to be patient, but this recovery is so much slower than I expected. I thought I was prepared to be patient, but gaining less than 2 degrees per week seems insanely slow. I feel like the success stories that I have read on this site moved much more quickly. Can anyone provide insight/opinions about the rate of recovery? Did you regain flexion more quickly? Did you regain it this slowly but still end up OK?