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?

@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 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.

REPLY
@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

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 !!

REPLY
@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 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 !

REPLY
@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

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.

REPLY
@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

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.

REPLY
@tallteri

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.

Jump to this post

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

REPLY
@tallteri

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.

Jump to this post

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.

REPLY
@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 feel your pain. Its worse than the arthritis.

REPLY

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.

REPLY
@tallteri

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.

Jump to this post

you are sooooooo lucky!

REPLY

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

REPLY
@tallteri

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.

Jump to this post

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

REPLY
@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

@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!

REPLY
@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

@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.

REPLY
@amberpep

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

Jump to this post

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

REPLY
Please login or register to post a reply.