Arthrofibrosis
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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
susan59635 amy1447
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amy1447 susan59635
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Saint2012 amy1447
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susan59635 Saint2012
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laurel65763 amy1447
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Thank you for posting this Amy. I'm sorry you are going through this. Were you tested for allergies to the materials in the joint replacement?
I had an allergic reaction to the dermabond glue they used to close the incision and it caused extreme swelling. When I read my medical records of the surgery, they used chlorhexidine to scrub my leg before surgery, which I had emphasized I am allergic to so I have wondered if it contributed to my knee locking at a -45 degree flexion making it impossible to stand straight or walk. .I am a retired RN who like many, developed latex and other allergies to chemicals. Antibacterial soap caused blisters on my skin which then peeled off and left numbness in my fingertips which has taken 10 months to heal. So I have to wonder about the effects of chlorhexidine getting into underlying tissue when the incision was made. Just as a bee sting or peanut allergy can cause global effects on the body, it is possible more people are becoming hypersensitive and the body's response may be developing scar tissue to contain the irritant. My surgeon had no answer, so I got aggressive with alternative approaches to straighten my leg and gain flexion which is now 125 flexion and zero extension. I have to have the right knee done next and know what to avoid and do. I will do some reading about arthrofibrosis, but I have a feeling it will be "idiopathic" -meaning they don't know what causes a particular condition.
Please contine to post anything you find out as I am sure many are suffering the same way.
amy1447 laurel65763
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From what I’ve read it can be genetic, or allergy can cause your body to become AF, as well as knee replacement and ACL repairs.....Ive always had issues bending after knee surgeries and scopes but eventually got most back. Before TKL I was stuck at 90 and now know why......I can tell you there’s no breaking through it on my own - my knee is cement and I feel it reaching into my thighs......it’s awful. 😫 I will keep reading and see what I find. So far some great specialists for AF in US and none in Canada.....
I am going to be asked to be tested for allergies as well.
ironwoods laurel65763
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approaches to straighten leg. I have decent ROM but while walking the leg does not really straighten out (backwards) and my quad is confirmed damaged. Feels like peg leg. I make myself pick up the knee and roll the ball of the foot as I walk but it is still not automatic.
Working on strengthening exercises but could use some insight.... Therapist just fessed up he has been worried about my straight extension but my last session is this week......
laurel65763 ironwoods
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2 cups Epsom salts in tub of water as hot as i could tolerate (do not burn) stretch in water. Refresh hot water as needed for 20-30 minutes nightly. Leg warmers 24/7 to keep muscles supple. Magesium supplements. Gua Sha tool with magnesium lotion to break up scar tissue used by physical therapist 3X week and sports massage therapist used it once weekly. JAS brace worn 30 minutes 3X day to gradually extend and hold stretch for 30 minutes. It will also gradually improve bend. Required doctors prescription to rent brace. Usually see results in 3-9 months depending upon severity of condition. If I sat, I did leg raises or heel slides. I set up a massage table and did stretches throughout the day since I couldn't stand or walk. It takes patience and perseverance. My surgeon and physical therapist call me the miracle patient because they were sure I would need surgery to remove scar tissue , but ten months post op I have 125 flexion and -0 extension. Now I have to rebuild muscle and stamina.
debbie35639 amy1447
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Hi Amy. I am in the same ocean as you, trying to tread water. I am a 45 yo female who "was" very active. My Dr. told me that "I just produce massive amounts of scar tissue ". (Athrofibrosis). There is no explanation as to why some people do. I had ltkr in October 2017, MUA in November 2017 and just had revision on March 2, 2018. Went for my 2 week check up Thursday, and he said he is giving me 7 days to get to 100 flexion from 45 currently. I am pushing myself daily to get there, but I also have a "cement knee". Nothing my PT nor I have done will release it. I am close to deciding to go to a specialist to see if they might have any better ideas as to why. Almost 6 months of this torture is enough. I still believe with everything I am that this is the worst mistake I have ever made. I am worse off now than I was before the original surgery! Good luck to you. I hope they can figure yours out!
amy1447 debbie35639
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Oh Debbie yes we are definitely in sane boat. My surgeon blew off my concerns at 6 weeks so that’s why I didn’t get scope to clear out scar tissue until 4 months. Argh!!! If you are at 45 degrees your surgeon can’t expect you to get to 100 in 7 days!!! That’s not possible....especially if you do have athrofibrosis. If you have specialist you can go to - definitely do it!
Can I ask why surgeon revised knee? Had something been loose or wrong size? Or just needed that much scar tissue taken out?
I want to be tested for allergies but my surgeon sloughs it off and says “science very soft on that.” So if it’s nit written in stone he’s not buying or looking into it 🙁
Good luck and let me know how you do this week.
debbie35639 amy1447
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My surgeon did the revision because my knee was literally "stuck". He shaved down my knee cap, replaced the spacer at my tibial plateau with a thinner one and actually had his hand and arm inside my leg to grab a hold of and break up scar tissue. It was trying to adhere to my femur. There has been so much trauma to my knee and leg, I really don't know if it is going to be capable of bending correctly anymore. This is all so very frustrating!!
amy1447 debbie35639
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Oh Debbie that’s awful!! I’m at 75 degrees so at least I can walk albeit with a bit of a limp.
My advice is to definitely contact a specialist! I have found a blog that has a ton of information in it and I think it will help you too. Where are you located? I’m in Canada and can find NO specialists here but hoping to find ortho surgeon who has dealt more often with AF...? Not sure my surgeon will refer me though. It’s awgul when you know there’s better methods but the doctors you are dealing with aren’t doing them.
Here is the blog:
https://injuredathletestoolbox.com/aboutarthrofibrosis/
Please keep me posted!
debbie35639 amy1447
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Cementless amy1447
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amy1447 Cementless
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Has your knee been ok then?
Cementless amy1447
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