Share this:
smargelz

Chronic knee pain after knee replacement with excessive scar tissue formation

Posted by @smargelz in Bones, Joints & Muscles, 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?

Sally Haines and renariki like this
renariki

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

Posted by @smargelz, Nov 20, 2012

what are you doing in PT ?

touchdown

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.

dschuck82

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

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

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

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

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

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

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

Posted by @jmacvol, Oct 12, 2016

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

tallteri

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

Posted by @jmacvol, Oct 13, 2016

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

bettyjo

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

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.

bettyjo

Posted by @bettyjo, Oct 13, 2016

I don't know your brother in law but know Lee Robinson's General Store. Hatteras got hammered from the hurricane. Go from time to time but I don't know how people live there. It is a small world. Hatteras is a great place to visit but this girl needs a city and bigger than Kill Devil Hills where we are. We own a business here.

tallteri

Posted by @tallteri, Oct 13, 2016

Dear @bettyjo, Please keep us updated on your progress with Dr.Finn. You are a very good spirited woman! I will keep you in my thoughts and prayers !

bettyjo

Posted by @bettyjo, Oct 18, 2016

thanks so much. When I left there he said he had done all he could for me.

tallteri

Posted by @tallteri, Oct 18, 2016

Oh,BettyJo....I hope you are feeling o.k. after your appt.with Dr.Finn. I am so disappointed that he can't do anything else for you! What are your thoughts about going to Mayo in Minn.or Jacksonville Fl.? I imagine right now you don't even want to think about DOCTORS !!

tallteri

Posted by @tallteri, Oct 18, 2016

I have been doing some research....Have you heard of having a series of pain shots after TKR ? This would help prevent "Reflexive Sympathetic Dystrophy" ...pain causes the nerves to engulf other nerves. I may have read this on this site !

bettyjo

Posted by @bettyjo, Oct 19, 2016

after four surgeries I really think I am done. I am still doing PT. I cannot find anything on Reflexive Sympathetic Dystrophy. Like I said I do have full extension I guess because he cleaned out scar tissue and put in the hinge. I have 26/27 for range of motion. Why complain? Because it still hurts at the kneecap and I don't walk correctly. Have done acupuncture, work out every day at home and massages. Don't know what else to do.

Posted by @JustinMcClanahan, Oct 19, 2016

@bettyjo, I understand your frustrations first hand. I had my knee replaced at age 19 due to extreme arthritic damage that started when I was eight. I had aggressive scar tissue formation and had to have two manipulations to break it loose.

While I am not personally familiar with RSD (now known as Chronic Regional Pain Syndrome or CRPS), a few discussions have taken place on Connect specifically about RSD/CRPS. I encourage you to check out what other members are discussing specifically to CRPS:

-RSD/CRPS http://mayocl.in/2dk3ucb
-After knee replacement I developed RSD http://mayocl.in/2cX10nN

Additionally, here is what Mayo Clinic has to say about CRPS http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/definition/con-20022844.

smhaines70

Posted by @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.

tallteri

Posted by @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

smargelz

Posted by @smargelz, Jun 4, 2015

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

tallteri likes this
jmacvol

Posted by @jmacvol, Oct 18, 2016

I just got my appointment at the Mayo Rochester for Nov 8th for testing and 9th for consultation and am thrilled. They already have my x-rays and last visit notes. I want to know specifically what surgery they would recommend and get their opinion on my own surgeons suggestion that he loosen the joint by removing the lower implant, removing some more tibia, and putting it back together. I already had 2 major surgeries to remove the scar tissue without any long term success. I have had some recent success with acupuncture to treat the constant pain I have had due to arthrofibrosis. The continual pain is gone but the underlying condition remains. I may consider revision surgery with a physical therapy regimen that includes acupuncture.

bettyjo

Posted by @bettyjo, Oct 19, 2016

so happy you have an appointment at Mayo. I have done acupuncture to no avail as I also have arthrofibrosis. My pain just does not go away. It is in my kneecap. I am still in PT and I work out at home. I just don't know what else to do.

jmacvol

Posted by @jmacvol, Oct 19, 2016

I feel your pain. Its worse than the arthritis.

Posted by @JustinMcClanahan, Oct 19, 2016

@jmacvol, great news about your appointment at Mayo Clinic Rochester. Please keep us informed on your experience and what you are able to learn about surgical options and their opinion on your previous surgeon's suggestion. Good luck, and we look forward to hearing your updates!

tallteri

Posted by @tallteri, Jun 4, 2015

Thank you for responding......now another question...What is knee revision ? My P.T. feels that I need a replacement of my TKR which took place almost 1 yr.ago.

smargelz

Posted by @smargelz, Jun 4, 2015

A revision is taking out the first knee replacement and putting in a second
one,but it is only done in cases of infection, improper selection of first
prosthetic (too large) or the surgery was not done correctly. It is a last
resort.

tallteri

Posted by @tallteri, Jun 5, 2015

Thank You for answering my question re:revision, sometimes I feel so silly asking a question that I think I should know the answer to!

amberpep

Posted by @amberpep, Oct 19, 2016

I had to have a revision due to a fall on concrete outside my building. Something loosened when I fell so he had to do it all over again. Obviously I was more careful that time.
abby

pattib

Posted by @pattib, Jul 28, 2015

My sister had metal allergy to her implant, which caused her constant pain; took forever for any doctor to figure out because no one wanted to believe that titanium can cause allergy, but once it was finally removed her pain disappeared almost immediately-might be worth looking into...

renariki

Posted by @renariki, Jul 28, 2015

Wow! Do not think that is my situation but my heart goes out to her. I think and so does my doc that I have patella cluck whis is scare tissue built up and making my patella get stuck. When it finally releases it goes lunch...therefore the name.
Rena

Rena (Riki) Applebaum

jmacvol

Posted by @jmacvol, Jul 29, 2016

I had TKR on my left knee Dec 2013 at the Holston Valley Medical Center in Kingsport Tennessee followed by 3 months physical therapy. My surgeon was Dr. Jason Park. As PT went on, my ROM decreased and my pain from scar tissue increased. I had MUA April 2014 which was the most painful recovery experience I have ever had also with no improvement in ROM. I had revision surgery on my left knee to remove scar tissue Sept 2014 and had TKR on my right knee at the same time followed by 3 months PT. Pretty much the same impact as bi-lateral TKR. My right knee responded reasonably well but scar tissue grew back quickly in my left knee again. My 3rd major surgery to again remove scar tissue was in Dec 2015 followed by 3 more months of aggressive but unsuccessful PT as the scar tissue once again returned. I am almost 8 months out from my 3rd surgery on my left knee, my ROM is approximately 70/0, walking aggravates the scar tissue so at the end of each day I am in significant pain. My surgeon is highly experienced in TKR and very respected in the region. He said 4 things of note over this ordeal: 1) after the 1st surgery he said that I had the largest bones that he had ever operated on; 2) when trying to understand what was happening he said that he may have used too large an implant; 3) before the final surgery he said that if that didn't work he may have to replace the entire implant; and 4) after the last PT he said there was no more he could do. I am trying to get an appointment at the Mayo Clinic to see if anything can be done. This is pretty much my last resort. Has anyone heard of ASTYM therapy? I just saw some articles on it on the internet last night.

dawn_giacabazi

Posted by @dawn_giacabazi, Jul 29, 2016

@jmacvol I have complete faith that Mayo Clinic will help you out. 🙂

Yes I do know what Astym is. It is very uncomfortable or painful for some patients during the procedure, but there is no pain after a therapy sessions. Astym treatments take place about twice a week over a period of four to six weeks. Because the procedure heals the dysfunctional tissue, the pain gradually diminishes. By the end of the treatment period, the tissue is healthy, and the pain is gone and will not return unless the area is reinjured. This is what we are doing to my shoulder and 3,4,5 ribs. Like all treatments, does not work for everyone. It can cause pain to be worse if it is not done correctly or the diagnosis is incorrect.

tallteri

Posted by @tallteri, Oct 17, 2016

I read that there is a series of injections to relieve pain after TKR. These injections help to prevent "Reflexive Sympathetic Dystrophy" which I believe is the result of pain that causes nerves to engulf other nerves.

bettyjo

Posted by @bettyjo, Oct 18, 2016

I have never heard of it but rest assured I will check it out

amberpep

Posted by @amberpep, Oct 19, 2016

Hi there .... I had scar tissue develop after I had my first TKR also. After about a year of trying all sorts of things, which for me were only a temporary fix, I had to have a laparoscopic surgery done on the knee ..... only 3 little holes to clean it out. It really was quite easy and I went home that day.
abby

jmacvol

Posted by @jmacvol, Oct 19, 2016

You were the fortunate one. Some of us have scar tissue so extensive they have to open the wound, remove the plastic spacer, cut out the scar tissue, and put you back together. My last surgery for removing scar tissue was longer than TKR surgery. Then, it all grew back again.

bettyjo

Posted by @bettyjo, Oct 19, 2016

you are sooooooo lucky!

bettyjo

Posted by @bettyjo, Oct 19, 2016

My body must be loaded with it as well because after my first surgery I developed scar tissue in my small intestine and had to have surgery for that. Therefore, my knee atrophied, did not have a chance.

amberpep

Posted by @amberpep, Oct 19, 2016

Well, another year after the scar tissue removal, I had to have a revision ...... so I got to start all over again! Great fun! But now my knee is great.
abby

bettyjo

Posted by @bettyjo, Oct 20, 2016

I hope you know how lucky you are after reading some of these posts

tallteri

Posted by @tallteri, Oct 26, 2016

Great News!!! Who did your revision ?

bettyjo

Posted by @bettyjo, Oct 26, 2016

Which revision? My last one was done by Dr. Finn at Weiss Memorial in Chicago.

Please login or become a member to post a comment.