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Chronic knee pain after knee replacement with excessive scar tissue formation

Posted by SMargelz @smargelz, Nov 17, 2012

Has anyone else had a similar experience. I am 3 years post op. I have had a MUA 3 months after first surgery. I had arthroscopic surgery 6 months later with some improvement, but 1 year later, pain and heaviness returned, has not gotten better. I have lost initial gains especially in bending my knee. it is a constant problem no orthopedic doctor seems to know what to do about it. I have had numerous PT visits, pool therapy and exercises,myofacial therapy, chiropractic therapy, ASTYM therapy,I am now wearing a steel brace for extra stability, but doctors can find nothing wrong with the original knee surgery?

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renariki | @renariki | Nov 20, 2012

Ditto almost 9 months since surgery.....diagnosis excessive scar tissue. Going through PT now. Surgery not an option!

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SMargelz | @smargelz | Nov 20, 2012

what are you doing in PT ?

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touchdown | @touchdown | Jun 26, 2013

Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon said I had inherited a gene from my mother causing excessive scar tissue. Was told to continue PT. PT said that I healed so fast they couldn't treat me. Recently had follow up with surgeon. His reply to my question Is there any thing else that can be done? was he could cut my knee open & "loosen" my knee. If I have the left knee replaced, since they know about the scar tissue issue, they will put that knee in looser. I began therapy in Oct. & am still going. Surgeon's first suggestion was that I have a series of pain shots because I might have Reflexive Sympathetic Dystrophy. I am on my 6th shot. The theory is that the pain causes the nerves to engulf other nerves. If the pain is controlled I will be able to withstand more aggressive therapy. The extraneous pain seems to be controlled ( pain in other knee, pain up thigh into groin, lower back pain on that side) but not the pain in my knee. No pain pill ever helped. I am receiving acupuncture but see no difference. In therapy my knee tends to range 45-75 degrees and it varies daily. I will not have another surgery because I can't comprehend how that won't cause more scar tissue or how he will know just how much to "loosen" my knee. Mentally I can not take much more. I hope this helps you, perhaps at least by knowing there is another is a similar situation.

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19 replies
dSchuck | @dschuck82 | Sep 22, 2014
In reply to @touchdown "Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon..." + (show)
@touchdown

Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon said I had inherited a gene from my mother causing excessive scar tissue. Was told to continue PT. PT said that I healed so fast they couldn't treat me. Recently had follow up with surgeon. His reply to my question Is there any thing else that can be done? was he could cut my knee open & "loosen" my knee. If I have the left knee replaced, since they know about the scar tissue issue, they will put that knee in looser. I began therapy in Oct. & am still going. Surgeon's first suggestion was that I have a series of pain shots because I might have Reflexive Sympathetic Dystrophy. I am on my 6th shot. The theory is that the pain causes the nerves to engulf other nerves. If the pain is controlled I will be able to withstand more aggressive therapy. The extraneous pain seems to be controlled ( pain in other knee, pain up thigh into groin, lower back pain on that side) but not the pain in my knee. No pain pill ever helped. I am receiving acupuncture but see no difference. In therapy my knee tends to range 45-75 degrees and it varies daily. I will not have another surgery because I can't comprehend how that won't cause more scar tissue or how he will know just how much to "loosen" my knee. Mentally I can not take much more. I hope this helps you, perhaps at least by knowing there is another is a similar situation.

Jump to this post

Hi, I was wondering what the outcome of your situation was? My husband is going through the same thing right now.

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SMargelz | @smargelz | Sep 22, 2014
In reply to @touchdown "Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon..." + (show)
@touchdown

Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon said I had inherited a gene from my mother causing excessive scar tissue. Was told to continue PT. PT said that I healed so fast they couldn't treat me. Recently had follow up with surgeon. His reply to my question Is there any thing else that can be done? was he could cut my knee open & "loosen" my knee. If I have the left knee replaced, since they know about the scar tissue issue, they will put that knee in looser. I began therapy in Oct. & am still going. Surgeon's first suggestion was that I have a series of pain shots because I might have Reflexive Sympathetic Dystrophy. I am on my 6th shot. The theory is that the pain causes the nerves to engulf other nerves. If the pain is controlled I will be able to withstand more aggressive therapy. The extraneous pain seems to be controlled ( pain in other knee, pain up thigh into groin, lower back pain on that side) but not the pain in my knee. No pain pill ever helped. I am receiving acupuncture but see no difference. In therapy my knee tends to range 45-75 degrees and it varies daily. I will not have another surgery because I can't comprehend how that won't cause more scar tissue or how he will know just how much to "loosen" my knee. Mentally I can not take much more. I hope this helps you, perhaps at least by knowing there is another is a similar situation.

Jump to this post

More aggressive PT only makes this condition worse. Trauma of any kind makes scar tissue reform. There is a site on FaceBook called Arthofibrosis What's That? If you are on Face Book go to that group and join. You will get lots of info and experiences from others with the same condition. If that doesn't work goggle Knee Geeks. Sorry you have this it is a nasty condition that has no treatment as of yet. I did get my extension back when I had the scar tissue removal at Rush Hospital in Chicago. Dr Bush-Joseph did mine. Great doctor unfortunately I did not get the bend, but I can walk pretty well. Another Dr you may want to try is Dr Henry Finn at The University of Chicago Bone and Joint Clinic. He has had some success with radiation before revision with a knee he developed, but he will cut the co lateral ligaments and put in a rotating hinge replacement. I have not yet decided to try that. Hope this helps.

REPLY
renariki | @renariki | Sep 22, 2014
In reply to @touchdown "Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon..." + (show)
@touchdown

Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon said I had inherited a gene from my mother causing excessive scar tissue. Was told to continue PT. PT said that I healed so fast they couldn't treat me. Recently had follow up with surgeon. His reply to my question Is there any thing else that can be done? was he could cut my knee open & "loosen" my knee. If I have the left knee replaced, since they know about the scar tissue issue, they will put that knee in looser. I began therapy in Oct. & am still going. Surgeon's first suggestion was that I have a series of pain shots because I might have Reflexive Sympathetic Dystrophy. I am on my 6th shot. The theory is that the pain causes the nerves to engulf other nerves. If the pain is controlled I will be able to withstand more aggressive therapy. The extraneous pain seems to be controlled ( pain in other knee, pain up thigh into groin, lower back pain on that side) but not the pain in my knee. No pain pill ever helped. I am receiving acupuncture but see no difference. In therapy my knee tends to range 45-75 degrees and it varies daily. I will not have another surgery because I can't comprehend how that won't cause more scar tissue or how he will know just how much to "loosen" my knee. Mentally I can not take much more. I hope this helps you, perhaps at least by knowing there is another is a similar situation.

Jump to this post

I am going through similar with left knee total replacement. Surgery was March 2012. Besides still lots of pain and a very stiff knee I have what my doc calls patella clunk! Look it up....it is real. I have developed scar tissue and when my artificial patella move it gets stuck on the scar tissue. Feels like it locks and when I force movement it is extremely painful. Actually makes a very audible clunk! My right knee is bone on bone. Cannot have any more elective surgery. I have a rare form of hemophilia and as a result of 100\'s of transfusions of FFP have developed inhibitors. Lower back is also very bad.....I have half of a 6th vertebrae and cannot have any kind of injections.....it is getting really tough!<br />
Rena<br />
<br />
Rena (Riki) Applebaum<br />

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SMargelz | @smargelz | Sep 22, 2014
In reply to @touchdown "Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon..." + (show)
@touchdown

Surgery Oct 2012, 1st manipulation Jan 2013, 2nd manipulation (by different surgeon) March 2013. 2nd surgeon said I had inherited a gene from my mother causing excessive scar tissue. Was told to continue PT. PT said that I healed so fast they couldn't treat me. Recently had follow up with surgeon. His reply to my question Is there any thing else that can be done? was he could cut my knee open & "loosen" my knee. If I have the left knee replaced, since they know about the scar tissue issue, they will put that knee in looser. I began therapy in Oct. & am still going. Surgeon's first suggestion was that I have a series of pain shots because I might have Reflexive Sympathetic Dystrophy. I am on my 6th shot. The theory is that the pain causes the nerves to engulf other nerves. If the pain is controlled I will be able to withstand more aggressive therapy. The extraneous pain seems to be controlled ( pain in other knee, pain up thigh into groin, lower back pain on that side) but not the pain in my knee. No pain pill ever helped. I am receiving acupuncture but see no difference. In therapy my knee tends to range 45-75 degrees and it varies daily. I will not have another surgery because I can't comprehend how that won't cause more scar tissue or how he will know just how much to "loosen" my knee. Mentally I can not take much more. I hope this helps you, perhaps at least by knowing there is another is a similar situation.

Jump to this post

So sorry to hear this. I do believe they can fix the patella clunk, but if you can not have any more surgery, I Don\'t know. Dr Finn in Chicago deals with bone cancer patients, may be he can recommend something for you.FYI he comes off rather arrogant. But if you Google him, he has saved people\'s legs when other Dr wanted to amputate. <br />
<br />

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Sally Haines | @smhaines70 | Oct 5, 2014

I have this exact experience, 3 years post op on left knee. "Pain and heaviness" is a great descriptor for what I feel in both knees and left hip. So odd that a stiff knee needs a steel brace, but that is the only thing that keeps me from hiking my left hip and wearing it out. I don't think hip and right knee replacement will be an option, due to so much scar tissue, it buckles and catches my knee replacement when I stand or am lying down. I can manipulate it out of the painful spots but that seems like such an extreme outcome of TKR! I will be following this thread. So helpful to know I am not alone.

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tallteri | @tallteri | Jun 4, 2015

Have any of You gone to Mayo-Clinic Minnesota for treatment of chronic knee pain after Total Knee Replacement ? Could someone explain ASTYM therapy to me ? I did read about it on Knee Nerds facebook site. But I am still confused. Thank You

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5 replies
SMargelz | @smargelz | Jun 4, 2015
In reply to @tallteri "Have any of You gone to Mayo-Clinic Minnesota for treatment of chronic knee pain after Total..." + (show)
@tallteri

Have any of You gone to Mayo-Clinic Minnesota for treatment of chronic knee pain after Total Knee Replacement ? Could someone explain ASTYM therapy to me ? I did read about it on Knee Nerds facebook site. But I am still confused. Thank You

Jump to this post

I went to Mayo clinic. It was a very short visit,they recommended a knee<br />
revision. I declined as I have arthofibrosis,which is an uncommon amount of<br />
scar tissue after trauma, like knee surgery. I did try ASTYM,was painful<br />
for me and didn't reduce the scar tissue. There is a site for ASTYM that is<br />
in Indiana.<br />

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