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Thread: scoliosis-to have surgery or not? Help!

  1. #11
    Senior Member
    Join Date
    Mar 2008
    Perth, Western Australia
    Hi Sonia,

    You can put us in the same boat too unfortunately - doctors have discussed rods with us several times for my son.

    Obviously every case is different, but my view is that if there is a doctor out there that says not to have the surgery, then that's the opinion I will listen to. Our son is pain-free, active and enjoys life - if we made the decision to put rods in (for both lung capacity and spine straightness) which resulted in pain, lack of mobility, further paralysis or anything similar, I would find it difficult to deal with the situation (knowing it was my decision that resulted in those outcomes). And that's not even considering the relatively short term recovery period, which we already know would involve pain, lack of mobility, and lack of exercise....

    As we've discussed previously Sonia, my son doesn't have a brace (but we are still considering that). Nor does he have any night-time positioning (or re-positioning). But he does do a lot of physical therapy (WalkOn / Project Walk plus similar), plus chiropractor, plus acupuncture.

    As for the horses, having a sister who has owned one since being a child, best of luck if you decide to go down that route - hope you've got plenty of money to spare! (In case you hadn't guessed, they're not my favourite animal!!).
    Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

  2. #12
    Gordy, So good to hear from you! Met a young boy from Dunfermline while in stoke mandeville this summer-much the same age and level of injury as Noirin and your wee man. they would have had a ball together. THe poor nurses are only recovering now from all the wheelchair racing in the corridors!
    Have taken a while to reply as took time out to do some thinking and soak up all the advice.
    Have decided not to go for surgery -notified spinal liaison nurse of my concerns but no reply! Have spent a week traveling ireland and staying in hotels much to the detriment of Noirin's tail bone-not the best of mattresses and out of bedtime routine. Just discolored not broken but enough reason to reinforce my thoughts that she's not ready for surgery- needs a lot more building up.
    I emailed a girl that had the fusion done in shriners 2 years ago and she says it was a good decision as she no longer needs to wear brace but her hips got very tight as unable to stretch or tummy lie for 6 months and her tail bone became more prominent but is gradually improving now 2 years later. She found it very difficult to be dependent on turning in bed and dressing and bowel bladder care and frustrated at not being able to twist or lift things. She has given me her mums email too to get her perspective.
    In my mind i now am weighing up hip deformity and increased pressure risk v scoliosis deformity.
    I would love to hear Dr. Young or KLD's opinion but at the minute we are going to get casted for a brace that will attempt to control the rotational forces and sleep system is ordered.
    THanks again to everyone for responding. best wishes to everyone, Sonia.x

  3. #13
    Sounds like a good plan, Sonia - a sturdy, flexible mental template that will allow you to store, review and assess facts/impressions in the days ahead. All best wishes to you and Noirin!
    MS with cervical and thoracic cord lesions

  4. #14
    You need to do what you feel is right for your child. Everyone has a different take and a different reason for recommending or not recommeding a procedure. For now, it seems as though you are comfortable with your decision, and that is good.

    It is hard to give any medical advice without knowing the patient or seeing their xrays/MRI's, etc. As long as you monitor the situation, I think that she will be fine. You really want to make sure that she doesn't lose function: ADL's, moibility and respiratory. After that, the cosmetic things are really personal. I will tell you that the experience I have had with children and bracing changes dramatically as they get older and become adolescents. As long as this is not a battle with her, great! If and when it becomes one, than you may want to look at your decision with a different pair of glasses on. But you still have at least a couple of years for that.


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