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Thread: Scoliosis Pain

  1. #1
    Join Date
    Jun 2004
    Location
    Suffolk, UK
    Posts
    9

    Unhappy Scoliosis Pain

    I have been having a lot of back pain lately. I have even had migraines caused by the back pain and been sick, have had to increase my painkillers to co-codimal during the day plus co-codimal and tyrol at night.

    I am 40 years old, had a Harrington rod fitted at the age of 10 years, it had to be removed 9 years ago as it became infected. I have since had several sessions of physiotheraphy, the last sessions I finished last week. The physiotherapist has said I shoulld go back and see a back specialist as he thinks my spine is progressing. I also use a nippy ventilator at night.

    My Dr who referred me for physio said that a specialist wouldn't see me, not sure if he was trying to fob me off!

    I look forward to any comments.



    Liz
    Liz

  2. #2
    Join Date
    Nov 2004
    Location
    Berkeley, California
    Posts
    206
    If you are in pain you need to see an ortho specialist, regardless of what the referring doc said. I spent years asking primary care physicians and others about what could be done with my severe kyphosis, and they all blew me off. I persisted and found several good spine surgeons who acknowledged my condition and said surgery would fix it. DON'T GIVE UP!

  3. #3
    Join Date
    Jan 2007
    Location
    Mississippi
    Posts
    37

    Liz......

    Sweetie, I know what you mean about the pain! I'm sorry you are having to deal with it, too. I am 49 and dealing with alot of stressing pain in my back, hips, legs and shoulders. I get headaches alot too. I've tried pain meds and muscle relaxers but I continue searching for a remedy that I suppose is just not there. I have a cousin who dealt with the harrington rods and the infections, etc. She actually has had 13 different surgeries to date and still continuing to deal with the problems. I personally, have been told to stay away from the knife, so I try hard to deal with the constant pain. I know it is discouraging, but perhaps you could speak with a good ortho doctor and see what he recommends for you, because you are quite a bit younger than I am. Perhaps the same doctor who performed your surgery could give you an answer. Good luck though, because I hate to read about all of the pain and suffering that scoliosis causes.

  4. #4
    Join Date
    Oct 2005
    Posts
    10

    Visit to specialist at stanmore yesterday

    I went to see a specialist at Stanmore yesterday, Mr Nordeen, he said that I have a double lumbar curve which is causing the back pain I am having. My back had a harrington rod fitted 30 years ago at Stanmore. He said that my back has got worse and I need an MRI scan to see if he can do anything like surgery.

    I forgot to tell him I had a nippy ventilator in the room and when I went back in to tell him I wore a nippy ventilator for sleeping due to my lung restriction he didn't seem as keen on doing any surgery.

    I was signed off from Stanmore 20 years ago although my back was getting worse then, they said no more could be done. I'm now having second thoughts whether to go back to Stanmore for the MRI. My partner Liz has scoliosis, she has been to 3 specialists for plastic surgery, it was decided nothing can be done, too dangerous as she also has a nippy.

    What are your thoughts on this, anyone been through similar?

  5. #5
    Join Date
    Jun 2004
    Location
    Suffolk, UK
    Posts
    9

    Visit to stanmore

    I went to Stanmore on 17 October following a visit to The King Edward Hospital in London. The specialist at King Edward said that I would need a big operation to reduce my rib hump not plastic surgery as thought, he said that Stanmore were clutching at straws.

    My visits to Stanmore have now ended, the specialist has signed me off as he said nothing else can be done, I use a nippy ventilator at night and he said it would be too dangerous.

    I now just take painkillers, I do get pain in bed sometimes.
    Liz

  6. #6
    Join Date
    Aug 2008
    Posts
    5

    Exclamation Potential solution to the pain

    I'm fairly new to this site, but I wanted to share my experiences with pain. I have a moderate case of scoliosis and started having pain at 22. I have tried every alternative therapy and non-surgical approach I could find. I am now 30 and wanted to get this under control so I can have children. After all that I have tried, I believe I have found the solution. In September, I got a SpineCor brace and have been in a fairly intense treatment program that involves wearing the brace for 20 hrs/day, chiropractic visits, a high protein/low calcium diet, and occular vestibular exercise. I started this just to relieve my pain, but I am on tract for some correction as well, which I wasn't expecting! At my one month checkup, I showed correction in 2 of my curves and significant reduction in pain. My x-rays were taken in the brace, but the next visit will include x-rays out of the brace to see if the curves are holding. I will update you again after my next visit.

    Before deciding to do this, I spoke with two other women who had gone through the treatment and both had relieved symptoms and significant correction that is holding! I have been impressed so far and I'm optimistic about having a life free of pain. I'm happy to discuss any of the details of the treatment. It takes a huge life adjustment and is pricey (my insurance has covered some of it), but I think it will be well worth it if it relieves my pain and I don't have to have surgery! I hope if you are experiencing pain and considering surgery that you will consider this as a promising alternative.
    Lauren Shallcross
    Diagnosed at age 13 with Scoliosis, pain began at age 22, braced with SpineCor brace at age 30.
    Curve measurements on 9/23/08 before Spinecor Brace:
    26 - cervical
    40 - thoracic
    42 - lumbar
    Curve measurements on 10/23/08 with brace:
    23 - cervical
    40 - thoracic
    37 - lumbar

    My pain has decreased significantly, and I'm excited about my 3 month checkup!

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