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Author Topic: New to Forum - Severe Arthofibrosis  (Read 107 times)

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Offline Pegleg_

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New to Forum - Severe Arthofibrosis
« on: February 13, 2020, 06:37:48 PM »
Hi All,

I'm new to the forum, but not new to arthofibrosis. I was diagnosed with a rare form of bone cancer when I was 40, and the tumor was located in my tibia, near my knee. As part of my treatment I had many rounds of chemotherapy and limb salvage surgery (lss), which is much more complex than a total knee replacement. My knee and several inches of my tibia were replaced when my tumor was removed, and my leg immobilized for 6 weeks following surgery so that the patellar tendon could reattach to some of the tissue that used to wrap the steel rod in my prosthesis. I didn't immediately start PT as I needed an additional surgery to achieve clear margins and was also going through further chemo, which knocked me down pretty good.

Not surprisingly, I developed extreme stiffness in my knee and was only able to achieve 20-30 degrees ROM, even when I was doing PT. So, I consulted with my orthopedic surgeon after my treatment had concluded and he recommended MUA and simultaneous excision of scar tissue, which I had done. I immediately started PT after that surgery and also used a dyna-splint several times a day for months until I had to return to work. After the surgery and PT I was able to achieve 40-45 ROM, but plateaued there. I learned that during the surgery, when they had the incision open, they were only able to bend the knee to just past 90 degrees.

Eventually, I needed to return to work -- only to find my role "restructured" and was laid off after a few months. Unfortunately, my ROM never improved beyond 40-45 degrees, and I had exhausted my insurance coverage for PT visits. My knee became stiff again, and has deteriorated to about 5-10 degrees ROM. Strangely, I feel more secure having almost no ROM compared to something where I could catch an odd angle and find myself in excruciating pain.

My life now is very limited. My leg is always in a mild amount of pain, whether I sit, stand, or even when I sleep. I have to use a cane to help me walk, which has resulted in a torn rotator cuff because of how I'm carrying my weight to compensate for my leg. I get exhausted easily because I'm out of shape and it now takes more energy to get around. I'm afraid of being out in crowds because I don't want to be knocked over. I'm frequently confined to my house whenever there is snow or ice, and I feel embarrassed when I go out to restaurants and have to prop my leg up. I can't go to movies, shows or ball games, and flying is next to impossible unless I spend thousands of dollars on a first class ticket.

I'm glad that I've survived cancer, but my quality of life has been diminished. I'm told that this is now a permanent condition, and that my only other option would be an amputation. I'm not ready for that just yet, it certainly comes with its own set of challenges and complications. Despite everything, I do try and stay positive and get out as much as my body allows me to. Things aren't always easy, but they could certainly be much, much worse.

I'm glad that I found this forum, it's nice to see there are others also dealing with this condition. Keep moving everyone!

Offline DogfacedGirl

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Re: New to Forum - Severe Arthofibrosis
« Reply #1 on: February 14, 2020, 02:57:03 AM »
Hi Pegleg,

Wow, what a story, thanks for sharing with us! That is really tough. I hope you can find something that can help, but AF is very difficult.

For your general health and well-being it would be good to find some kind of exercise that you can do, if you haven't already. Perhaps swimming? Or a gym using your upper body?

Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline masoud

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Re: New to Forum - Severe Arthofibrosis
« Reply #2 on: February 21, 2020, 12:10:28 PM »
hi pegleg

as you mentioned AF is permanent and there is no cure for that. a german researcher and AF specialist told me once maybe in 10 years they can solve the scar tissue healing problem inside the joint with some medications.

I think amputation and osseointegration could increase the quality of life...it depends in how much pain you are, if you can sit or stand without pain, walk or swim etc.

if you cant do non of these and you see absolutly no improvement you should consult an OS who does OS. there are some in germany, US, UK, australlia and so on.
they can tell you more.

most of us in this forum are just waiting for a cure from the science. but this can take long time.

for the moment I suggest you CPM, accupunture, deep tissue massage, swim or bike if you can do them.

best regards
masoud






Offline Clarkey

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Re: New to Forum - Severe Arthofibrosis
« Reply #3 on: February 21, 2020, 08:00:58 PM »
Thanks for sharing a moving story of determination beating cancer, then being weighed down with AF with limited mobility. Maybe could look into purchasing a mobility scooter adapted to your limitations, if you cannot afford it maybe might find a local charity providing free mobility equipment. Can get out of the house gettiing more independence back again. Also important to keep the knee moving with AF and would recommend hydrotherapy and light swimming or wading and kicking under water can be beneficial under the guidance of a physiotherapist by not overdoing it when doing your exercises.

Good luck with your recover, remaining positive is always a confidence booster that is a good coping mechanism on the more challenging days.

[email protected]
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming















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