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Hi, new to these forums seeking people with similiar case of scoliosis

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  • Hi, new to these forums seeking people with similiar case of scoliosis

    Hi, I'm new to this forum and wow am I happy to have found it.
    I am in Saskatchewan, Canada, am 33 yrs old. I had Harrington Rod surgery in 1988 at 16 years of age.
    I was always followed in school but we moved around so much the last specialist I saw was at age 12 and he told me and my aunt not to worry about coming back that the curvature was so slight that when I had my major growth spurt it would straighten itself out, boy was he wrong....
    At 14 my mom noticed the deformity in my back and I went to another specialist who advised me that the previous doctor should be sued and that the curvature had progressed so signifigantly that they would monitor the progression via x-rays until I had finished growing.
    When I did stop growing I was told that it was very likely that the curvature would not stop progressing as is the case sometimes and that Harrington Rod surgery was neccessary. I was not offered any physical therapy before or afterward or any other treatments, which was ok at the time as I had very little discomfort in the following years (except immediately after the surgery and a few months after of course)
    Since then I have married and have 3 children all free of scoliosis at this time but they are frequently checked. After my 1st pregnancy I experienced problems with my left S.I joint and it has never been resolved. I was told by another doc that the surgeaon had taken bone chips too close to the joint and this was the cause.
    Over the years I have seen various specialists all with different opinions on my pain not just with the S.I joint but also radiating pain around my right shoulder blade ( I am fused from c3 to l3)
    One opinion suggested I needed another rod and fusion of the remaining lumbar vertabrae and yet another suggested I have this rod removed. That was years ago and I did nothing, just live with the pain which was usually intermittent although an a frequent basis. In the past two years though I have suffered chronic pain and an incident of muscle spasms that lasted for 15 days and was literally hell on earth, my doctor has diagnosed arthritis and strain causing the spasms, yet another has told me I don't have arthritis.
    After that long winded introduction, my questions are,
    Does anyone else suffer with S.I. joint problems ( which I hear is a common problem with pregnancy anyways although my youngest child is 10 and it is worse than ever)
    And has any one experienced muscle spasms?

  • #2
    Hi MsJJ...

    We have relatively similar pain patterns. I've had sharp intermittent pain in my right buttock since before my surgery. One doctor told me it was the S-I joint. I understand that one can have their S-I joints fused, but I think the outcomes are way more iffy than scoliosis surgery. Also like you, I also have muscle spasms in my lower back. I think they're relatively common for people with lower back problems. Lastly, since my scoliosis surgery I've had intermittent left shoulder blade pain. I once heard a doctor say that patients who have long fusions starting in the area of the shoulder blades are doomed to a lifetime of shoulder blade pain. :-(

    I would recommend that you try to find a surgeon who has a lot of experience treating patients with prior long fusions. Unfortunately, I think that's a difficult task in Canada.

    Good luck.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      Response to MsJJ

      Hi, MsJJ,

      I, too, have a long fusion (T6 to L5) and have experienced a lot of the discomfort which you have described.

      Muscle spasms are a constant problem. My neck above the fusion is very unstable and, as I "speak", is extremely painful. My SI joints go in and out but, knock on wood, are quiet at the moment.

      I have been told that, in my case, activity is far better than inactivity. I tend to be a very busy person, as I imagine you are. I find the busy-ness is not the only answer.

      I have spent some time attending a Pain Clinic, and found it to be very helpful, although one must be patient. It takes a while before the right "cocktail" or procedure is discovered. I am now on a pain regimen which seems to work fairly well for me -- it is not perfect, but certainly better. I do recommend Pain Clinic if you have one available to you. Our problem is that there is no quick and easy answer. Chronic pain is very wearing. You are probably aware of that.

      I had my only surgery at the age of 57 and had Harrington/Luque rods inserted. I believe they are of Titanium.

      I'm afraid I do not have a perfect answer for you, but do recommend Pain Clinic and, possibly, Physical Therapy. I hope that you will find relief soon, and that you will let us know!

      Sincerely,

      Carole M.
      Carole

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