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Thread: Told no revision necessary; myofascial pain?

  1. #1
    Join Date
    Mar 2009
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    Told no revision necessary; myofascial pain?

    Quick summary: I had the 2 Harrington Rod, bone grafts from the right pelvis operation 25 years ago. I had an active and pain free life for 24 years. Last year I started to get progressively worse pain in my right pelvic/hip area (mostly when I exercising). The pain went chronic and now I can't be on my feet for more than 15 minutes at a time. It's debilitating.

    After many MRIs, CT scans, injections, doctors, etc., I finally saw Dr. Boachie in NYC yesterday, who is a scoliosis specialist. He confirmed what my physical therapist has been telling me: that there is nothing surgically than can be done. There are no nerve impingements or anything wrong with the rods. It is the donor site that is causing the pain, and the muscles and scar tissue around it. I was told to just continue with physical therapy, myofascial release therapy, and core strengthening. I completely believe the diagnosis, because I've seen enough doctors and had enough testing, that Dr. Boachie just confirmed what I already knew.

    My question to the forum is whether anyone else experienced this "donor site" type pain, and what, if anything, made it better? I am so scared I will not be able to get rid of this pain. I am only 41 with 2 young kids. I need to get back to a semi-normal life again. This pain has been chronic since last June. The physical therapy helps a bit, but I'm not seeing any significant improvement. I am hoping there is a success story out there to give me some hope. I still have a curve in the last 2 vertebrae underneath the bars, and if that keeps curving, I will eventually need more fusion, but I'm hoping that exercise and other methods can keep that at bay. Any thoughts?

    P.S. Dr. Boachie was fantastic. There was a long wait to see him, but if I ever needed surgery, I wouldn't hesitate to go to him. He took the time with me, and was extremely compassionate and knowledgeable.

  2. #2
    Join Date
    Nov 2008
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    14
    I am sorry that you are going through pain like that. I, too, have pain that has caused me to decrease exercise. Until October of 2008, I taught group exercise for 27 years. My pain seems to be from a dislodged hook that has dropped down and compresses something everytime I exercise. I know scar tissue hurts because scar tissue has developed around where the hook is located. I can actually feel it. My husband does soft tissue work on me (chiropractor) and it helps.

    TerryB

  3. #3
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    Jan 2006
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    Tasmania
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    Oh ujei, thats my story as well. I honestly did not know where my donor site was I was so jolly stupid, only really got educated when reading all the forums. I knew I was fused but thought that the bone just magically appeared.

    My left side is the worst, down around the hip area. I also get pain between shoulder blades and bottom of back, and it hurts doesnt it.

    Nothing sweety has worked on me, I have tried the lot and am now on medication. I am a lot older than you and agree with Terry, that a little soft tissue work may help. Also physio but only gently and I have really found that warmth is about the best for myself. exercise is out of the question but I do try walking, not power walking mind you just the hobbling kind. My heart really goes out to you.

    All the best
    Macky
    Last edited by macky; 03-28-2009 at 04:50 AM. Reason: spelling again
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  4. #4
    Join Date
    Aug 2008
    Location
    London, England
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    30
    I'm sorry to hear about your pain. I too had pain in my right hip, which was the donor site for my fusion and tried many therapies to try and stop/ease it. The one thing that seemed to work for me was when the Physio tried some sessions of ultrasound on that area. It took a few visits, but the pain did go and that was about 15 years ago and it hasn't (touch wood!) come back in my hip. Although I have awful back pain, but that's another story!

    It works (I think) by the sound waves that go through the tissue and cause some heating, increased blood flow, vibration and stimulate collagen production which helps with scar tissue problems. It might be worth a try and your Physio would be able to tell you more about it - I'm no expert!

    All best wishes, sasha.

  5. #5
    Join Date
    Mar 2008
    Posts
    8

    Pain from bone graft site too

    I'm so sorry to hear about your donor site pain. I had thoracic curve fusion and harrington rod placement in 1970. I am now 52. I wish I had some helpful advice (beyond what you have already been told) but perhaps some commiserating will help. I had problems with my donor site beginning when I was a high school athlete. (Tender to the touch, radiating pain.) My surgeon gave me steroid injections directly into the scar tissue twice with excellent but temporary (a few months) results. After the 2nd injection he told me that I shouldn't have any more injections. He also told me that the pelvis (at least around the sacral illiac (sp?) joint was no longer used as a donor site because everyone had the problems I was experiencing. In the ensuing years I gave up running for exercise and had trouble with long city walks. I learned that I did better in slippery soled shoes and on clay tennis courts (both less jarring). I wrote another message that describes the debilitating pain I had 2 years ago that was helped by PT. Good luck to you - I have 3 children (youngest is 9) and I sympathize with the concern that pain will interfere with my ability to do my best for them. I'm glad that you have found such a great Doctor. Good luck!

  6. #6
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    Sep 2003
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    NJ
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    Exclamation Bone pain

    Has the bone density been checked???

    Also, unfortunately some of the medications given to build bone can cause severe bone pain. Sometimes the doc will stop the medication. Severe muscle pain is a complication from cholesterol meds-statins.

    An interesting thing in my case: a spine bone density was done over my fusion area a couple of years after a spinal bone density was done on the non-fused area for comparison. It was read as a "severe decrease in bone density" . Not true!!! When they measured bone density in my hip and wrist it was normal!!!
    My bone doc recommends at least 1,000u vitamin D daily. It's very cheap OTC.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  7. #7
    Join Date
    Jan 2006
    Location
    Tasmania
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    Hi Karen, as usual I so like reading your posts as I find them really informative.
    I had a bone density scan done on my hip a few years ago and the result was ok, but they told me they could not do one on my back because of the fusion. The test was where I had to lie down and they moved this radiology scan thingo over me. The reason I wanted the bone density test was specifically for my back, just wondering what was your test like and would you mind describing it for me please, as best you can.

    Thank you
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  8. #8
    Join Date
    Mar 2009
    Posts
    11

    myofascial pain

    Well, that is a depressing thread! Thanks everyone for responding. I think I know the reality of my situtation. I just don't want to accept chronic pain and disability at 41 with kids. I''m still going to try my hardest to see if there is anything I can do to help this. My massage therapist did say they can break up scar tissue years after surgery. My bigger issue will be retraining the muscles in my core, back and pelvic area to give me some stability and to take the pressure off the muscles that I overworked all these years trying to compensate for the immobility in my back.

    Karen, this is Ursula. We spoke about 3-4 weeks ago. I absolutely loved Dr. Boachie. I was somewhat disappointed to learn that there is no fix through a revision surgery. I know that sounds crazy, but with your successful revision, I was hoping that would be the answer. While the source of the pain relates to the original scoliosis surgery, it's not related directly to any nerves or other issues that can be corrected with surgery. So I'm left to try to work this out on my own. It's a little discouraging, but I don't have any other choice. Being on groggy pain medication everyday for the rest of my life is not an option; neither is sitting home all day. I need my life back! I'll keep plugging away. If anything works definitively, I"ll post here. I have been in myofascial release therapy for 3 weeks now, and it has started to help. I no longer have pain in my groin, which was being caused by a tight psoas muscle. Once the therapist worked on that and released the muscle, the pain subsided. I am hoping that with continued treatments, I'll get longer and longer relief. I can hope at least!

  9. #9
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    Sep 2003
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    NJ
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    Bone density issues/myofascial release

    The original bone density test which was falsely read over 8 years ago was like a CAT scan--too much radiation. Now I get a little scanner over my hip and one over my wrist(non-dominant hand). I actually visit an osteoporosis/metabolic bone center. I figure they are more helpful --and they are. For example: testing my vitamin D levels and making recommendations. At 66 my bone density is good.

    Ursula:
    Scar tissue can be quite painful. I found myofascial release(The other name for this is Rolfing) very helpful for pain, years after hand surgery and "suit-of armor" feelings.

    I still do Pilates--modified based on my fusion.

    Another thought: make sure it's not something else totally not related to scoliosis.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  10. #10
    Join Date
    Mar 2009
    Posts
    11
    Karen, I have been to over 30 doctors in the past year, because not only did I have pain, but I"ve had GI symptoms, insomnia, rashes, etc. Believe me, I have ruled out every known disease. For months I was convinced it was Lyme. On paper I am totally healthy. It comes down to chronic pain that I couldn't control, which caused havoc with the rest of my system. If I keep the pain in check, the GI symptoms are better, etc.

    I am going to try pilates (slowly, since the slightest thing sets me into major rebound pain). I found a pilates instructor that will work with my physical therapist in putting together a program for me. Dr. Boachie stressed core strengthening as one of ways I might alleviate pain, and possible stop my curve from getting worse. I don't even know where my core muscles are. I think being fused down to L3 caused me all these years to use pelvic/ leg muscles to compensate for lose of mobility in my spine. I have extremely tight back muscles. I know what I have to work on. I'm just a little discouraged and somewhat doubtful I will ever get out of this pain. I've also been reluctant to take pain meds every day, but being in constant pain isn't doing me any favors. Tramadol seems to take the edge off without major side effects. I can' t seem to tolerate the stronger stuff (vicodin, percocet). I'll keep plugging away! I don't have a choice. I am hoping that there are successful rehabilitation stories out there, but that those people don't come to this forum. Honestly, until I was in chronic pain, I didn't give my scoliosis a second thought for 24 years and would never have found this forum if I had been able to get out of pain. Karen, you're one of the rare ones who feels great, but keeps checking in to encourage and help those of us still struggling. Thanks for all your great info.
    Ursula

  11. #11
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    Sep 2003
    Location
    NJ
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    stop my curve from getting worse
    ugej

    Ursula:

    Nothing will stop a curve from getting worse. No exercise, nothing. But I firmly believe, especially since you were fine for so many years, that scsr could be impinging nerves.

    Did you try the "flatbackers forum"? There are many post Harrington Rod patients there with ideas.
    I never had Harrington rods originally. Just a fusion, unsupported by hardware.

    One other idea. Some people developed sensitivity to the metal. This is not found by a skin test but by a blood test. The solution was to use a different metal.
    I posted a link on another thread about metal implants.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  12. #12
    Join Date
    Mar 2009
    Posts
    11
    Thanks Karen. I am hoping it is just a matter of breaking up some of this old scar tissue, and working on some core strengthening and posture issues. I have one hip higher than the other, and slightly contorted inward. I've been told that over time (and with age!), these imbalances cause stress on the muscles. It sounds too simple to be causing all this pain for this long. Although, a physical therapist that was treating me for a running injury a few years ago couldn't get over how tight the area was where the bone graft was taken, and how weak my glute muscles were on that side. THis has probably been building for years and just came to a head last year.

    I'll ask my doctor about the metal. I have had such awful insomnia and GI symptoms because of this chronic pain. It's like having 3 different problems going on at the same time. I am really hoping that the myofascial release starts the healing process. I did get some relief, but this week it's bad again. I know it will take time, and i have to stay hopeful. Mental stress just makes the pain and insomnia worse.

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