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Thread: Advice on revision

  1. #1
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35

    Advice on revision

    I know some of you here have had successful revision surgeries, but I just can't make a firm decision in my own case.I was born in 1967 with infantile idiopathic scoliosis and my condition was ignored until my curve had reached 50 degrees aged 7 when I was given a milwaulkee brace which I wore for 2 yrs.No further follow up treatment was given as the doctor believed it would not be possible to operate when I was 15.So at age 15 he was astonished to find the curves had reached 110/60 and I ended up being passed from one surgeon to another until I found one who was willing to try.I had halo traction which caused neurological damage at L5/S1 and when he tried to correct the curve on the table it was so rigid that he could not insert the harrington rod in 1983.So I had one of those old style fusions,just bone graft and no instrumentation.I recovered quickly and went on to lead a normal life in every respect.
    However 21 years later the curve is appearing to progress slowly again.I don't have severe pain apart from occasional neck problems due to degenerated discs, and the curve seems to measure above 120 degrees.I was fused T3 to L1 and although the fusion seems solid the curve is moving up to T1 and curving below the fusion.The risks of repeat surgery and breaking the old fusion and attempting to realign it are classed as huge.I'm not so sure I want to take the chance with doctors that I cannot trust.I have discussed the possibility of travelling to USA for this surgery but my insurance company may not pay for it.
    I'm curious to know what risks your surgeons told you were associated with this revision surgery. My lung capacity is 50% and I have restrictive lung disease.This may be my last chance to do something now before I become too old or too breathless.
    Any thoughts?
    Sinead.

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Sinead,

    I can't offer you any help as far as who/where to turn for revision surgery. Having absolute confidence in the doctor that will treat you is critical. I just wanted to say that I hope you find the treatment you need. I'm sure someone in the group can help point you in the right direction.

    Being the mother of a child with infantile scoliosis, it makes my blood boil to hear how you fell through the cracks - how is that possible ? How could your doctor just turn his back on you ? You don't have to answer these question, I'm sure it's gone through your mind a million times.




    Celia

  3. #3
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    spine treatment in UK

    Hi there,

    So sorry to hear about your predicament, Sinead. I see you're in Ireland... I was wondering if it would be easier for you to make contact with any really good surgeons in the mainland UK, perhaps in London or Stoke Mandeville. I haven't had personal contact with Stoke Mandeville, but I have heard that it is absolutely one of the best places.

    In the US there are some very good revision surgeons, if you search this site or browse through you will find mentions of them (also on Linda Racine's scoliosis doctors index which is online).

    If you find out anything about Stoke Mandeville, it would be great if you could let the forum know in case anyone else is looking.
    All the very best. Laura

  4. #4
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Hi there Sinead!

    I am so sorry to hear about how bad your scoliosis got! I thought I had it tough! Anyways, I just wanted to let you know that I am in Canada and through my research the best places to go are the UK and then the US. They seem to be much more advanced and have more experience with long term effects of scoliosis and fusion. Laura is right, Linda Racine's stuff is really good if you want to check it out. I know there are links out there for the UK.

    Best of luck to you and we hope to hear you find some excellent help.

    Lisa

    And also the post that is titled "Great List of National Surgeons" is a great list of the US docs.

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