Problems 13 months after patellar acl reconstruction - any advise?

[Andyandhisboard]

Hello, I'll really quickly introduce myself as I'm new to the forum (though I have ready many threads since my acl reconstruction).  My name is Andy, I'm 25, and tore my ACL playing soccer last year on Jan 31, 2014.  Two weeks later (Feb 13) I had the reconstruction surgery using a graft from my patellar tendon.  They also did a meniscus repair (not trim) during the same surgery.  Ten months later, it was recommended by my surgeon that they go back into my knee to remove scar tissue (my surgeon said they removed a ton of scar tissue) and scope my knee.  Per that recommendation, I had that done November 4th.  Anyway, I'm here now to maybe get any advise on, input on, or even see if anyone has gone (or is going) through problems I'm having now some 13 months after the original reconstruction, and going on the start of 4 months after the second surgery.

I'll try and summarize what problems I'm having and are concerned about at the moment, and then maybe after or in a follow up post provide a more detailed section containing more information about my experience that might help explain why I'm having some of these problems.

Really quick, I must say I feel that I probably went into the surgery under prepared, and I definitely didn't research as much as I would have liked (looking back).  The one part I was prepared with was to expect a long recovery time, to put on some weight, and expect a lot of pain, so I feel mentally I was at least prepared pretty well, and maybe even better than most.  I didn't have any of the post surgery depression I'm reading a lot about now, probably because I expected it to be rough.  But NOW, the past month or two, I feel it has finally hit me, and harder than ever.  I don't know if it's because I'm starting to lose hope that I'll be able to get back to the two things I love most (soccer and skateboarding) or what, but it's getting rough.

Anyway:

TO TRY AND SUM UP MY CURRENT PROBLEMS AND CONCERNS
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So my main concerns are about pains I'm still having in my knee (1 in particular) and the swelling that just isn't going away.  I'm really getting concerned as a buddy of mine (and I have read many, MANY, stories of similar timelines.  Most in fact) had his in the summer, and when I saw him about 12 weeks after, he said he was pain free, had full range of motion, and it looked just like the other, the swelling was gone.  I'm extremely happy for him (and all the others I read about), but it concerns me that most 12 weeks out appear in better shape than mine 52 weeks out (except maybe muscle strength, I'm not there yet, but it's coming back).

Now, before this starts sounding way worse than it is, I must say that I'm not in a horrible situation.  Everyday stuff isn't a problem.  Yes, I still feel pain or have difficulty sometimes doing everyday things, but from what friends and family tell me, everything looks like it's normal.  I'm also currently able to be more active than one would think after reading this thread, however the only real one that is a concern on the knee at this point would be volleyball.  This sounds crazy I know, but after 13 months it's hard not to, and I'm careful to always avoid possible injuries by using my good knee (and it's 9 people per court and not super competitive so I can take it easy).  So even though it appears as if everything is coming along, my concern is that I've been in this situation now SINCE the second surgery with no noticeable improvement. (Okay, to the details now that you can see it's like I'm ALMOST there).

The second surgery was recommended because I had excess scar tissue build up, and that was preventing me from getting full extension (and causing pain if for some reason my knee would "snap" back, like stepping in a little hole in the grass without seeing it).  Also, apparently this whole time due to not having full extension, I wasn't walking properly which didn't help my situation and also prevented quad growth.

The real only big concern(s) is the pain that comes with full extension (for the first time in a little bit at least).  This isn't even always a problem either.  I can get full extension, but this requires a good deal of time stretching.  A plus is that once I'm fully extended and take care of a few minutes of two more exercises, there are times where I feel like I could be back on the soccer field.  My real concerns however, are with the fact that these requirements for the pain to go away don't seem like they are getting any better, or closer to not being necessary, and that it doesn't take long after stretching that I need to go through the entire process again.

Really quick, there are generally three different areas I notice pain.  My biggest concern area would be under my knee, where the graft was taken.  This is the same spot I was having issues with before the second surgery.  From what I can remember, this is the sort of pain that would occur if my knee were to "snap" back.  The difference being that now it's possible to get full extension, this pain just accompanies it, where before I never really got to the pain point without enough force.  The other two occur on the bottom of my knee, one sharp pain directly in the middle, and more of a sore stretch on the outside hamstring (inner and outer).  These two I'm not too concerned with as they tend to happen and go away before the first mentioned pain even begins.  They also occur way less often.

Next, let's assume I haven't already stretched so I can get my knee straight.  The pain in front starts around an average 4-6 degrees (not all too shabby).  I'm very limited in stretching options if it's been more than say 30-45 minutes with me leg bent.  Using both my own muscle strength (quad) or my body weight to try and stretch it straight causes too much pain.  The only way I seem to find is laying on my stomach with my leg hanging off and a weight around my ankle.  This way still hurts a little, but it's way less and generally only takes about 30-40 seconds to go away.  Also, in the same time, my leg feels more straight than my good leg.  Stopping now though isn't enough to cause the pain to go away.  Generally it takes about 5 minutes with the weight for the pain to get better.  Now, at this point, my knee was straight for 5 minutes, but I still require 2 more stretches.  The first, I basically do a "calf stretch"  with my foot half on something an inch or two tall.  The force of my weight on my knee while getting it straight still causes  the same pain, but it's bearable and after 5 sets of 20 seconds with all my weight on it, the pain is finally gone.  This is the same case when trying to get it straight using my own quad strength.  5 sets of 20 seconds generally rids of the pain.  After all of this, I'm finally at that point where I can pretty much always get my leg straight with weight and while flexing, and after doing my other exercises I sometimes even feel like I would be able to be back on the soccer field (even though I know better).

Now that I've finally gone through this process to get my leg straight, I'm going to try and explain the issues.  First, even when I'm doing my exercises and my knee is feeling good, there is still one that gives me a little trouble.  Standing on a 5 inch step with my right leg (reconstructed), I need to lower myself until the heal of my left touches the floor.  The problem is once again after raising myself back up.  I need to get straight, but that same pain is there and lasts about 4 seconds with my weight on it.  This happens every time, there is something about the bending that brings the pain back slightly.  That seems to really be my only concern after stretching and I'm feeling good.  My balance is a little off and what not, but that will come with time.  Now, the real problem, because this is the rest of the day, in between doing exercises.  The longer I go without doing something to keep my leg straight, the worse and worse it gets (some days are better than others, but still not great).  In general, I'd say after about 2-3 minutes of sitting or something, the pain is back, however little.  At this point I try to put my foot from my bad leg on the other and flex while pushing down with my hands to get my knee straight.  At this little time it's not too bad, it takes maybe 15-30 seconds of holding it straight like that and the pain seems gone.  By 20-30 minutes, the pain is almost too much for me to get it straight without using the weight on my ankle and laying down.  However, using the same method as before on and off for about 5 minutes, I can get the pain to go mostly away.  And generally by 50 minutes to an hour, it's just too much and I will be walking wrong until I can get home and use the weight to get my leg straight again.

That last paragraph is basically the issue.  The fact that I can get it straight after some time and feel good is a sign in the right direction.  The problem is that for the last four months (roughly, since the second surgery) it has been this day by day, and I can't say I've noticed at all that the time it takes for the pain to come back has increased at all.  I've gotten pretty disciplined when I'm gone all day (like if I have 2-3 classes one day) to sit with my foot on the other and just constantly flex to keep it straight.  At least this way I'm walking right throughout the day.

We have been refraining from increasing the intensity at physical therapy until I can get it straight, but as I said it doesn't seem like we're getting much closer.

So, where I'm at today with regards to fixing these issues...  My PT left a recommendation in her notes that my surgeon can see saying she things I should use a splint called the dynasplint, basically pushing down on my knee at all times to keep it straight for 6-8 hours a day.  At my last post op visit, my surgeon walked in, saying that it looks like I'm still having some issues and that he thinks my PT's recommendation is a good idea.  He then mentioned he thinks the swelling is because I keep pinching the tissue which is causing the pain.  He then walked out for a less than 2 minute appointment before I can ask any questions and was in with another patient when I asked the nurse if I was done and she said yes.  Awesome, right? 

I've currently been using the dynasplint for 3 weeks now, and I can say initially it seemed like it may have helped to have more "good" days with regards to how long it takes for the pain to come back.  However, now it still seems the same, and today has been one of the more rough days, I can hardly sit for more than a minute without having to stretch for a minute or two.  Though I can say, now that I've been sleeping in it, I'm not necessarily certain the whole 8 hours I'm sleeping my knee stays propped up so the splint can do it's job.

I'm sorry what I said would be a brief summary of my issues turned out to be so long, it's so difficult to explain my predicament.  It's just hard when it can vary so much, and how everything is circumstantial.

So finally, if anyone can advise, in any way shape or form, that would be great.  Am I on the right track with the dynasplint?  Am I SOL and will just have to deal with the pain forever?  Also, if anyone has gone through anything similar (or currently is) I'd love to hear from you too!

Thanks again so much for reading and any advise you might have.  I'm going to try and reply with more information regarding the details of the physical therapy I when through and anything else regarding prior to my current complaints that might be relevant in explaining why I'm having these issues.

Thank you so much!
Andy

[Andyandhisboard]

I'm sorry, I know this is long, but I would appreciate any advise very very much!

Thanks again
Andy

[kcknee]

Sorry you are having a tough time with recovery. You might want to repost this message under the Arthrofibrosis Board above so you will get more responses. Arthrofibrosis is a term that frustratingly includes patients with a one time excessive scarring incident brought on by inflammation or too early activity (having ACL surgery too soon before a patient has full ROM can increase the risk), a condition called a Cyclops Lesion where a ball of scar tissue can form in the notch after ACLreconstruction causing pain and loss of ROM and the condition where scar tissue keep coming back as fast as can be removed - most rare.

Read through the information on this page:
http://www.kneeguru.co.uk/KNEEnotes/primers/rehab-issues-primer/key-arthrofibrosis-resources-kneeguru-site

It includes info on arthrofibrosis, rehabilitation, knowledgeable surgeons and links to some blogs and diaries.

My entire medical history since I had my ACL replaced has been bizarre, but when I had scar tissue in my knee, and also when my torn ACL had jammed in the notch of my knee pre-surgery forming a pseudo cyclops lesion, I described it as a rubber band around my knee that I could stretch out with effort to get leg straight, but it would constrict over time and my knee would be stuck bent again. I developed a clunk at extension which is a sign of scar tissue at the front of knee by patellar tendon.

Good luck

Kristin

[Andyandhisboard]

Sorry you are having a tough time with recovery. You might want to repost this message under the Arthrofibrosis Board above so you will get more responses. Arthrofibrosis is a term that frustratingly includes patients with a one time excessive scarring incident brought on by inflammation or too early activity (having ACL surgery too soon before a patient has full ROM can increase the risk), a condition called a Cyclops Lesion where a ball of scar tissue can form in the notch after ACLreconstruction causing pain and loss of ROM and the condition where scar tissue keep coming back as fast as can be removed - most rare.

Read through the information on this page:
http://www.kneeguru.co.uk/KNEEnotes/primers/rehab-issues-primer/key-arthrofibrosis-resources-kneeguru-site

It includes info on arthrofibrosis, rehabilitation, knowledgeable surgeons and links to some blogs and diaries.

My entire medical history since I had my ACL replaced has been bizarre, but when I had scar tissue in my knee, and also when my torn ACL had jammed in the notch of my knee pre-surgery forming a pseudo cyclops lesion, I described it as a rubber band around my knee that I could stretch out with effort to get leg straight, but it would constrict over time and my knee would be stuck bent again. I developed a clunk at extension which is a sign of scar tissue at the front of knee by patellar tendon.

Good luck

Kristin

Thanks a lot for responding (and reading if you read my failed attempt to keep it short)!  I will move this over to the arthrofibrosis thread as you recommended.  Do you mind me asking a few more questions?  (Feel free to respond here OR at the post I make after this in arthrofibrosis).

1. Does you making this recommendation mean you're quite confident that arthrofibrosis is the issue (or most likely)?

2. You said AF can occur with too early activity, and in parenthesis said too quick surgery.  You meant strictly too early surgery, and not too early physical activity after surgery also, correct?  And I should say that though my surgery was only 2 weeks after I tore my ACL, after about 10 days, I started questioning surgery because I felt 100%, literally, 100% (as horrible as the days before that were).  I can't say for certain my ROM was 100%, but I remember feeling like I can get back on my skateboard or on the soccer field with no problems at all.

3. Can you elaborate a little more about the rubber band around your knee you described (like are you talking about a physical therapy band, resisting getting straight, but you could do it)?  Also, was this referring to the cyclops region, or AF, or both?  And where would the pain occur when it be stuck bent again?

4. How has everything panned out for you since?  I hope you're doing better now!

Thanks again so much, I really do appreciate you taking the time to read about what I'm going through and respond!

 I'm especially starting to freak out as I read more and more.  Even people I'm reading about that have had problems post surgery are saying within a year they are back on ski's (or whatever they are doing).  This is scaring me quite a bit.

[kcknee]

1. Does you making this recommendation mean you're quite confident that arthrofibrosis is the issue (or most likely)?

I am only a fellow patient that is making a guess by comparing your symptoms to situations I have dealt with. I do not have training to make any diagnosis. When you see you surgeon next, I would bring up possibility with him. You had said your previous surgery found excessive scar tissue. Remember, arthrofibrosis means "scarring in the joint" and covers everything from scar tissue that only forms a ball stuck it the notch, scar tissue that builds up but can be broken up with the right physical therapy program and aids (dynasplints), and the disorder that is thought to have some kind of genetic component that leads to crazy scar tissue building up. Be aware of the last condition, but don't jump to conclusions that yours is the extreme case. Work with your therapist to stretch out the joint without causing inflammation, if your knee gets hot, red or swollen slow down.

When I suspected arthrofibrosis;
I was first given a full exam with all the ROM and ligament/meniscus tests. The OS could feel the catching on extension and all ligament/meniscus tests were negative.
He then took three x-rays of my knee (sitting , flat and standing) to determine if the graft was placed in the right position. It was.
He then sent me for an MRI to see if there was an obvious cyclops lesion or other problem that could be observed without a scope. He did see scar tissue and edema, but no obvious cyclops lesion.
I was then given a steroid shot in my knee and 6 weeks of PT to see if I can break up the scar tissue on my own without surgery. 
I tried sleeping in a Dynasplint, but results were only temporary.
I did end up having anterior interval release surgery to remove scar tissue.

2. You said AF can occur with too early activity, and in parenthesis said too quick surgery.  You meant strictly too early surgery, and not too early physical activity after surgery also, correct?  And I should say that though my surgery was only 2 weeks after I tore my ACL, after about 10 days, I started questioning surgery because I felt 100%, literally, 100% (as horrible as the days before that were).  I can't say for certain my ROM was 100%, but I remember feeling like I can get back on my skateboard or on the soccer field with no problems at all.

From what I have read, surgeons generally delay surgery for ACL replacement until a patient has regained full range of motion and inflammation of the joint has calmed down, to limit the chance that arthrofibrosis will occur. ( http://www.ncbi.nlm.nih.gov/pubmed/1897645) After surgery, prolonged immobilization can cause scar tissue to build up and limit ROM of joint. However, pushing too hard or too fast at rehab can cause inflammation in the joint and my cause scar tissue to develop in the joint.

3. Can you elaborate a little more about the rubber band around your knee you described (like are you talking about a physical therapy band, resisting getting straight, but you could do it)?  Also, was this referring to the cyclops region, or AF, or both?  And where would the pain occur when it be stuck bent again?

Here is a post I wrote at that time
After this surgery I initially was able to regain full ROM and strength, but since a few weeks ago I've had trouble keeping my leg extension. My PT would stretch out my leg and have the back of my leg flat on the table and then during either the treadmill or strength exercises, my knee will start to feel tighter or thicker inside and my knee will start to contract and be hard to keep straight. My PT was the first to notice this contraction. He would make me get back on the table and push my knee back to flat, usually with a clunk sound. If I went back to the treadmill or strengthening, the contraction would happen again and my PT would repeat extending my knee for me. I have not been allowed to try to run or jump yet since my knee contracted a lot after the only 30 second jog that I was allowed to do. During my last few appointments my PT did not let me use the leg press or the treadmill at all. I have also started to get a pain in the front of my knee below the knee cap and a few times at night my knee will ache inside, towards that same front area, and wake me up. The ache hurts but is more painfully annoying. I have not taken any medication for it. Stairs at times are painful and I walk with a noticeable limp. I do the extension exercises every morning and night, but then I lose the extension again as the day goes on or my activities increase. 

4. How has everything panned out for you since?  I hope you're doing better now!

My case does not match anyone else on this site and would not consider it normal. I developed compartment syndrome which became my major problem and have my 13th surgery this Wednesday to repair a torn retinaculum in my ankle caused by surgery to try to get the pressure down in my muscle compartments.