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SMargelz
@smargelz

Posts: 7
Joined: Nov 17, 2012

Chronic knee pain after knee replacement with excessive scar tissue formation

Posted by @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

Posts: 3
Joined: Nov 20, 2012
Posted by @renariki, Nov 20, 2012

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


SMargelz
@smargelz

Posts: 7
Joined: Nov 17, 2012
Posted by @smargelz, Nov 20, 2012

what are you doing in PT ?


touchdown
@touchdown

Posts: 1
Joined: Jun 26, 2013
Posted by @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.


dSchuck
@dschuck82

Posts: 1
Joined: Sep 22, 2014
Posted by @dschuck82, Sep 22, 2014

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


SMargelz
@smargelz

Posts: 7
Joined: Nov 17, 2012
Posted by @smargelz, Sep 22, 2014

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.


renariki
@renariki

Posts: 3
Joined: Nov 20, 2012
Posted by @renariki, Sep 22, 2014

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!
Rena

Rena (Riki) Applebaum


SMargelz
@smargelz

Posts: 7
Joined: Nov 17, 2012
Posted by @smargelz, Sep 22, 2014

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.


bettyjo
@bettyjo

Posts: 12
Joined: Oct 11, 2016
Posted by @bettyjo, Oct 11, 2016

I have had four surgeries on my right knee, two full replacements and two partials. The first dr. I feel threw me under the bus because I saw his physician assistant the first two times after my first surgery not him. No one but the PT’s touched my knee and they kept saying you are not getting your range. So the third month I went to my dr. I told him. Right away (apparently he had finally read PT notes), he said I needed a manipulation. Well it was over 3 months and they don’t like to do a manipulation only in first 30/40 days because they can break your femur. I was so mad at him I said I was going elsewhere. I did I went to Duke in Raleigh where they did a manipulation to almost no avail. Scar tissue is very debilitating and hurts like the devil. My whole leg was awful. Then I went to Georgetown University Hospital in DC wherein Dr. Evans went in and cleaned up my knee. A year went by and it was awful, chronic pain. So he went back in and did another full replacement. Of course in the meantime I got an obstruction in my lower intestine and almost died from that. I was not able to bend my knee and was simply in pain all the time. Not able to do anything but work because I sit down. Finally a friend of mine gave me an article on Dr. Henry Finn at Weiss Memorial Hospital/The University of Chicago Bone and Joint Clinic. I went to see him. He does radiation before revision or even replacement. Well, he felt my last replacement was too long ago and it had grown into whatever place it was. He felt he would do more damage than good. Anyway, he did a revision and I had radiation before the revision and four manipulations a week apart. He put in the rotating hinge replacement. I must tell you I never before had the extension for this knee but I do now. I am still in pain but it has only been 4 1/2 months. I have done 3 months of PT this time and am working out at a gym. He is a wonderful doctor and did design his own knee – just did not put it in me. I am better than I have ever been, just want the pain to go away. This has all happened within less than four years.


Jmacvol
@jmacvol

Posts: 25
Joined: Jul 29, 2016
Posted by @jmacvol, Oct 11, 2016

Mine is a long story like yours. Left TKR December 2013, 3 months PT and MUA March or April 2014, poor ROM due to excess scar tissue. Right TKR and Left revision to remove scar tissue Sept 2014 followed by 3 more months PT. Range of motion on right knee about 105 but left knee still 70 – 80 degrees. 2nd revision to remove scar tissue on left knee Dec 2015 followed by 3 more months of intensive PT. As PT went on my range of motion decreased due to growing scar tissue. My surgeon said there was no more they could do. Had my records sent to The Mayo Clinic late this Summer and they agreed to see me but I am on a waiting list. Since then my doctor has said that i have sufficient bone on my tibia to remove the lower implant, remove some tibia and loosen the joint and that might improve range of motion regardless of scar tissue. He came up with that idea after i had my records sent to The Mayo 🙂 Needless to say I’m not excited about that option and want to see the surgeon at The Mayo to see what option he has and ask if my surgeon’s suggestion makes sense. I am now trying acupuncture to see if that will help with the constant pain. It’s my last resort short of surgery.


bettyjo
@bettyjo

Posts: 12
Joined: Oct 11, 2016
Posted by @bettyjo, Oct 12, 2016

Yes Dr. Finn is arrogant. He did radiation before my 4th knee surgery. He does all the football players and famous people. He designed his own knee. Unfortunately he could not put that knee in my leg because it was too long after my third surgery. He did put a hinge in my knee and my extension is great and my range also. But I still have lots of pain. I would at least give them a call. He saw me almost within two weeks and two weeks later I had surgery. The only thing I had to stay in Chicago for 6 weeks for PT. But I would call him at least. Weiss Memorial Hospital


Jmacvol
@jmacvol

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Joined: Jul 29, 2016
Posted by @jmacvol, Oct 12, 2016

Thank you but I’ll wait to see what the Rochester Minnesota Mayo Clinic has to say.


tallteri
@tallteri

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Joined: Jun 03, 2015
Posted by @tallteri, Oct 12, 2016

I am fortunate to live in Illinois- Medical Marijuana is legal here. My daughter works for one of Pain Clinics in Peoria. She is amazed by the pain relief patients have after “edibles” or other means of using medical marijuana. The only drawback is that it takes 45 days for a patient to receive their first “dose”. This is due to State pre-authorization process
As she says “Opiods have so many side effects & marijuana is a naturally grown plant” With no side effects to the body, other than pain relief.


Jmacvol
@jmacvol

Posts: 25
Joined: Jul 29, 2016
Posted by @jmacvol, Oct 13, 2016

I wish we had access to medical marijuana here in Virginia.


bettyjo
@bettyjo

Posts: 12
Joined: Oct 11, 2016
Posted by @bettyjo, Oct 13, 2016

It is difficult to stay positive and not get depressed isn’t it. I used to be very active before I fell down the steps and tore my meniscus which started it all. I have been from the Outer Banks where we live to VA Beach, to Washington, DC and finally Chicago and Dr. Finn. This is my final surgery. I will just have to live with it, if possible. Hopefully the Mayo is your answer.


Jmacvol
@jmacvol

Posts: 25
Joined: Jul 29, 2016
Posted by @jmacvol, Oct 13, 2016

From the Outer Banks. My brother in law is Virgil Willis and owns Lee Robinson’s General Store in Hatteras Village. I was stationed in Buxton while in the Navy in the late 60’s. We love to go there from time to time. Small world.

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