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Author Topic: Arthrofibrosis- what gives you the worst pains?  (Read 1957 times)

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Offline Dynamite

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Arthrofibrosis- what gives you the worst pains?
« on: April 29, 2008, 12:39:00 PM »
Ok I've got AF and my knee hurts and I am trying to understand why each bit hurts.
For me the worst pains are on standing for longer than 5 minutes...so if I'm standing in a queue for instance I have no choice but to sit on the floor after a few minutes. My knee feels as though it just cannot take anymore and it is a deep pain across the front of the patella tendon.

Second worse is walking after sitting in a chair for longer than 15 mnutes. My bones feel as though they are rubbing together and my leg swells up, there is a tight pain in the outer side of my knee too. It's not as bad if I stand for a few seconds before walking after sitting. I find all this puzzling. Any ideas?

Is this the same for everyone with AF I wonder? What is the worst for you??
Di :-\
02/07 fractures proximal fib, distal 1/3 Tibia and posterior malleolar
IM Nail put in 30 degrees malrotated
07/07 leg surgically rebroken corrective osteotomy 2nd IM nail, knee pain and lump
03/08 Arthofibrosis, OS
Fat pad removed, chondroplasty, Arthroscopy LOA
06/08 LOA, MUA, complete septum

Offline starpolisher

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Re: Arthrofibrosis- what gives you the worst pains?
« Reply #1 on: April 29, 2008, 06:04:13 PM »
Hello Di,
Standing is also worst for me.  I have the problem with sitting.  I seem to spend so much time in bed for relief and am on morphine.  I have had two TKR's and 1 revision in Feb and will havemy second revision May 30.  I am supposedly allergic to the cement in the original implants. 

It's been 3 years and I am terrified when all is said and done, the scar tissue will just keep coming back.  I hope not....I hope this works.  I have no way of knowing. It is too early.

Offline Dynamite

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Re: Arthrofibrosis- what gives you the worst pains?
« Reply #2 on: April 30, 2008, 04:17:16 PM »
Hi Starpolisher,

Where in the world are you? Are you in US and can you get to the wonderful AF doctors other people talk of on here?
I do hope your second revision goes well in May ...good luck with that. How is the knee that has already been revised? Has this done any good? Looks like we both have the same problem with sitting and standing...maybe everyone does with AF?
Good luck and at least there is good advice to be found on this website.
Di
02/07 fractures proximal fib, distal 1/3 Tibia and posterior malleolar
IM Nail put in 30 degrees malrotated
07/07 leg surgically rebroken corrective osteotomy 2nd IM nail, knee pain and lump
03/08 Arthofibrosis, OS
Fat pad removed, chondroplasty, Arthroscopy LOA
06/08 LOA, MUA, complete septum

Offline starpolisher

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Re: Arthrofibrosis- what gives you the worst pains?
« Reply #3 on: April 30, 2008, 07:26:10 PM »
Hello Di! 

It's funny; I have never met you but I feel so close to anyone with this miserable problem!  It robs you of life!

I live just north of New York City in Westchester County.  I have not seen any of the doctors listed.....and I am originally from the Midwest where so many of the good ones seem to be!  My doctor is not on the list. 

I originally made the mistake of going to my local hospital where an orthopedic surgeon I'd been seeing for several years before my knee replacements did his surgery.  He seemed very good before my surgery.  I had therapy when I developed a "baker's cyst" behind my knee.  The therapy took it away and for several years my knees were fine.  Then as summer came and I switched to sandals, my knees would hurt and my exercises at the gym became too painful.  I went back to the surgeon and he gave me injections for awhile of a lubricant.  It helped for 8 months but after that I noticed the subsequent injections didn't work as well and I started falling down.  In order to have my insurance pay for physical therapy in a rehab hospital, I was told I needed to have both knees done at the same time.  What a mistake!  The pain is awful.....worse than my single revision and physical therapy is twice as painful.  The fact that I got arthrofibrosis was a nightmare....both legs.  My surgeon was a creep who never returned my phone calls and only cared about money and doing surgery.  Finally, when I saw him, the look on his face confirmed what I suspected ..... arthrofibrosis.  I asked him how many patients he treated with it and he said one.  I knew I wouldn't ever allow him to touch me again.

A good friend had a lot of orthopedic surgery at The Hospital for Special Surgery in NYC and is the number one orthopedic hospital in the U.S.   He knew the man who had been in charge of the hospital and made it what it was....he was even President Kennedy's surgeon.  My friend knew him well for the long period of time he spent there and also did some fund raising for them and became good friends with this man.  He told him my problem and some other health issues I have and this doctor chose Edwin Su for me.  He does have a reputation at this hospital as a young and highly gifted surgeon and also kind.  He felt he would be the best for me. 

He told me I had a spacer in one knee that was too large and so initially he replaced it, removed the scar tissue and manipulated the other leg.  I had 6 months of physical therapy (not the best place compared to where I go now) and the scar tissue all came back.  He is not like the doctors in the Midwest and Colorado that everyone talks about.  He doesn't specialize in arthrofibrosis but is familiar with it and is considered brilliant and was determined to help me.  I was working during this time and worked until I realized I was losing my ability to walk and just getting worse.  Dr. Su had been working with the only lab in the U.S. that tests blood of people who have orthopedic implants (they are in Detroit, Michigan and affiliated with Wayne State University).  It's controversial as not all doctors believe it's accurate .... there are some false readings....but my doctor was doing a research paper on what happened when these implants age and pieces get in the bloodstream.  He also had one patient who had arthrofibrosis and couldn't find a cause and sent his blood to this lab and it showed a high sensitivity to the cement in the implant.  He removed it and gave him an implant without the cement.  The man didn't get the scar tissue back.  In spite of doctors feeling this was not possible...it was a coincidence, he felt very strongly about it.  When I told him I was a highly allergic person at one point, the light bulb went off and he told me about this man but he hadn't had a patient since.  So I had my revision done Feb. 7 and I have to say my range of motion after some weeks was 110 whereas before the best the old ones were at the very beginning were only 70!  It just went downhill from there. 

This time I went back to a therapy place I had had the best luck at (when I had my baker's cyst) and I have a man who seems familiar with arthrofibrosis and keeps telling me my new knee feels like an average person's in terms of the amount of scar tissue.  Before...all the therapists would say my knees felt horrible and so stiff! 

My surgeon photographed my surgery and plans on writing it up in an orthopedic journal if it is a success.  He is wondering how many are allergic to something in the implant.  He doesn't think it is common but he said it's like something in there is inflaming the area and causing scar tissue build up.  I don't know yet if my scar tissue won't come back.  I don't know how long I will have to wait before I can be confident.  I still need my other knee done and physical therapy.  It will take time.  I keep praying this is my answer.  If anyone wants the address and name of the lab that tests for this for their doctor....I would be more than happy to provide the information.  I have a copy of their test results and the name and phone number and address. 

I wish you a wonderful outcome for your pain and misery, Di.  It's been a long time since I've been able to stand without a lot of pain and my feet going numb too.  However, when I stand, I no longer lose circulation in my new knee.  I still have pain but both my surgeon and therapist say this is due to the therapy and healing is not complete.  Also I am crooked now as my new knee is not bent like the bad knee and taking all the weight so my surgeon warned me it would be hard between surgeries until both legs are equal.  I have a lift in my shoe of the bad knee.  It helps but is still painful. 

God bless you,
Patty

Offline Dynamite

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Re: Arthrofibrosis- what gives you the worst pains?
« Reply #4 on: May 01, 2008, 04:53:30 PM »
Dear Patty,

On this website and others like it we are all your friends. We share with you your failures  :'( and successes :) and all try to learn from each other and give each other support. I may be in the Uk and you near New York but we are all in this together ;D

For example ...I came to KneeGuru from www.mybrokenleg.com because someone (Missmyknee) was helping me. I never injured my knee in the first place...I broke my leg and had a IM Nail put through it. When doctors told me the leg was striaight and I said it was twisted other people supported me and helped me to find answers and have me the courage to tackle the doctors who were so obviously wrong. My leg had been set with the Nail 30 degrees malrotated.

Missmyknee helped me and warned me that she had had the same problem and that when I had my leg rebroken and corrected I should move my knee asap to avoid Arthrofibrosis and she directed me to all the great info on Kneeguru. Even though I did all the right things and got the knee moving except the 10 days it was put in plaster I still got AF  :o  To insert the Nail both times I had my patella tendon split and obviously my knee didn't like it plus I woke up with knee pain from my correctional op and a lump.

I have heard alot on here about allergies and sensitivity to cement etc. I don't think you are alone in this one and if you make a post about it I am sure your will get quite a bit of response. I'm hoping that now you don't have the cement you might recover somewhat and that your revisions will be successful. I've been busy in between passive exercise reading Jake's posts on how he put together his own rehab...did it work I wonder as the posts are so many I haven't got that far. I'm hoping he got better as I really need to put together my own rehab for after my next surgery as I don't think anyone in the Uk does proper AF rehab or even have a clue! As per all of my story I need to be proactive and push everyone into getting it right...I couldn't do any of this without everyone on here for support.

Keep in touch and try to keep positive and let us know how you get on.
Best wishes
Di
02/07 fractures proximal fib, distal 1/3 Tibia and posterior malleolar
IM Nail put in 30 degrees malrotated
07/07 leg surgically rebroken corrective osteotomy 2nd IM nail, knee pain and lump
03/08 Arthofibrosis, OS
Fat pad removed, chondroplasty, Arthroscopy LOA
06/08 LOA, MUA, complete septum















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