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?

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.

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@jmacvol

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.

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@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.

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@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.

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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.

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@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.

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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.

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@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.

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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

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@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.

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

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@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.

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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.

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@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.

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

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@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.

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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.

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@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.

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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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@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.

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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.

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@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.

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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 !

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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.

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@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.

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

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@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.

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

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