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Arthrofibrosis

Posted , 9 users are following.

amy1447
amy1447

Well, my surgeon has finally come to the conclusion that my lack of flexion since day one, four months of intense and painful physio with no results on my “cement knee,” and scar tissue that re-cemented my knee just one week after scope to clean it out - is because I have arthrofibrosis. He says there also may be allergy. He doesn’t even want to look at that part. He has only come across it this bad once before, and he manipulated that person 4 times before he was able to hold scar tissue off at about 100 degrees. The thing is - I’ve bern doing a lot of reading and manipulation not great for it - the trauma and bleeding in the knee just causes more scar tissue, and unless using a burning wand during scope, debriding makes it worse as well. Which I can attest to right now as I can feel the scar tissue reaching into my thigh. I’ve heard hours and hours on the CPM machine after as well as Graston Technique to try to rid any scar tissue that develops after......but I’m worried. I don’t see any arthrofibrosis specialists in Canada where I live, and fear I’d be paying tens of thousands to go to US. I’m not sure my surgeon is willing to listen to me, or read up on best practices if he just wants to manipulate over and over. And this can end up to be quite debilitating. Has anyone else dealt with AF, and if so how did it all work out and what procedures/physio was then done?

Argh this has been a long and frustrating process. 😞

2 likes, 27 replies

27 Replies

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  • susiemah
    susiemah amy1447

    Posted

    Amy my consultant thinks I have arthrobibrosis too. My first TKR was April 2017 and despite throwing lot s of money and time at physio I only reached 95. I couldn’t walk due to other knee and so had to have that one done in Jan 2018 and stuck at 80 at 8 weeks. He has given me 4 weeks to get to 95 or he wants to manipulate. I am in the UK and 52. 

    I am am so worried and meant to go back to work in 4 weeks. My knee feels like cement and my first one has never lost the right band feeling. 

    I do do physio for an hour four times a day, elevate and rest in between. I go to hydrotherapy every other day and physio twice a week. I have spent a small fortune topping up what the NHS offer but nothing works. 

    I am am unsure about the manipulation. 

     

    • amy1447
      amy1447 susiemah

      Posted

      Oooh Susie I know how you’re feeling. It’s awful. From what I’ve read manipulation not good for AF as it tears and bleeds inside which starts making more scar tissue. What’s recommended is scope using a want that burns it away rather than debriding it and causing more and more tissue build up. I don’t know how many surgeons have those...? Also tons of time spent on CPM machine to keep it always moving, with no aggressive physio for awhile (as it also makes it worse). I’ve also read Graston Technique therapy helps 

      Wish me luck trying to convince my surgeon if these things!! 

    • amy1447
      amy1447 susiemah

      Posted

      Susie - I have to tell you that I was scoped/manipulated with threcither people who are now doing very very well. I didn’t mean to scare you. It’s just if it is AF it’s harder to make progress and you usually need more than one....my surgeon did 4 with his last patient before it “stuck.” I’m going for another one next week. Sigh.......what else can I really do...? Wish me luck!
    • susiemah
      susiemah amy1447

      Posted

      Thanks for responding. I have to make a descion before my appointment on 30.4.18. Trying very hard but bend won’t go past 80. Very frustrating and not sure what to do as I need to go back to work. 
    • amy1447
      amy1447 susiemah

      Posted

      If you’re stuck there and have been for awhile and it’s not moving I’d personally go for the manipulation. If you don’t have AF chances are it could  really help - like it did the three others who had it done when I did. They just weren’t progressing but after manipulation they are all over 112 degrees. One is at 120. 

      I’m the only one who got to 100 but then my knee filled back up with scar tissue and I’m back around 75-80. But that’s 5 degrees more than I was. Now hoping for way more this time knowing about the AF and will be doing rehab differently. 

      So either way.....it could work for you. 👍🏼 

  • susiemah
    susiemah amy1447

    Posted

    How can I tell if I have AF? The doc has suggested it. 
    • amy1447
      amy1447 susiemah

      Posted

      There are certain sign such as, of course, stiff knee that is “stuck” with little improvement over weeks and months despite PT, some swelling, heat in the knee that doesn’t go away (that’s a big one I’ve been told), pain when sitting with leg down.......pain that doesn’t go away when trying to flex or extend....

      I have all of these but what convinced my surgeon was that after my scope/manipulation I made good progress for about five days - with hard work, got to 100 degrees but then knee started tightening up and there was nothing I could do....within 10 days it was locked up tight again and I lost almost all flexion that I had gained. I was devastated. That’s when he diagnosed me. 

      Hope this helps, 

      Amy

    • debbie35639
      debbie35639 amy1447

      Posted

      Hi Amy. I wanted to update you on the things that are happening with me. I have been diagnosised "complex regional pain syndrome" (CRPS). I went to a third opinion. Basically, every nerve in my leg that had the tkr done is "p****d off". It actually could explain everything that is going on. I am with a pain clinic and will be starting a round 6 nerve blocks starting this Monday. They have changed up all my meds and added new ones. I will be getting with my PT and discussing the best treatment from here. My doc that told me he wanted me at a 100° bend in 7 days has caused way more issues. That was the worst thing that I could have done for this. I want so badly to be angry at every single person, but, thst would serve no purpose. All I know is that they need to help me fix this because thus can not be my future. I am only 45. I have so many things to do, Grandchildren that need me, a family to take care of..... I pray with everything that I am that they can help me.

    • amy1447
      amy1447 debbie35639

      Posted

      Oh my gosh so you have been diagnosed with CRPS AFTER going through the pain of MUA and revision?? Would they have been necessary had you been diagnosed earlier??

      How do they know that it’s CRPS instead of arthrofibrosis? Did they do nerve testing or something? (Wondering if I should also be tested for this) I’m so sorry you’ve gone through so much and I feel your pain. I’m going for another scope/manipulation on Wednesday and I don’t even know for sure if it’s what’s needed or if my surgeon actually knows how to help me 😩

    • debbie35639
      debbie35639 amy1447

      Posted

      No. I'm pretty sure the MUA and revision were both unnecessary. They diagnosed me mainly because the appearance of my leg alone. It is a completely different color(kind of purple-ish), hot, shiny, very sensitive to light touch.... the pain clinic doc actually had other nurses come in and take a look, it is so bad I guess. I want so badly to be angry at my doc... I hope for his sake he doesn't understand crps any better than I do at this point. I basically have to start from square one but in a completely different direction this time. If I can just get this pain under control..... I am praying with everything I am that we can stop the progression and I can heal.

    • debbie35639
      debbie35639

      Posted

      You might talk to your doc to see if crps might be a possibility with you before the MUA!!!
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