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Scoliosis surgery and ITB dilemma

kingyclankingyclan Member Posts: 17
edited June 2014 in Parents and carers
Three years ago we were told my son needed scoliosis surgery immediately. However, its couldn't be done as his dystonia was so significant it would affect the rods etc. We were referred to a neuro team and as a result he had an ITB pump fitted. This had the added benefit of reducing his movement and slowing his scoliosis and delaying the need for a big op. We are now at crunch time with his curve being 75-80% HOWEVER, they are now saying that during scoliosis surgery the catheter is always cut and standard practice is not to replace it until six months after surgery. This makes a complete mockery of having the pump to aid surgery in the first place and essentially means we cannot have the scoliosis surgery as it WILL fail without the ITB.

It seems that this is recognised practice in some areas but I am arguing that practice needs to be changed and have yet to be given a convincing argument as to why it needs to be this way. Various arguments re oral replacement drugs and infection risk have been batted about but nothing that sounds convincing.

Does anyone have similar experiences particularly regarding scoliosis and ITB? If you or your child have dystonia and have been through scoliosis surgery how was it managed?

Thanks for any help.

Replies

  • cheneycheney Member Posts: 3 Listener
    Hi, I am in a similar situation, infact I have just posted a request for info from parents who have a child with severe dystonia who have had spinal rods (or not due to dystonia). My daughter also has a baclofen pump which has worked wonders to reduce the dystonic spams, although it stills remains her primary pattern of movement, particularly when ill, upset or in pain, its just not at violent a movement as before.
    The spinal surgeons told me that they would remove the ITB catheter during surgery but that it would be replaced straight way, When I told her pain management team they said that BACLOFEN MUST NEVER BE SIMPLY WITHDRAWN as it is very dangerous. Sadly, the Consultants work in different hospitals and for different Primary Trusts so this further complicates the matter.
    I hate to say this but I feel very much that each Consultant works very much isolation and that the only person looking at the whole picture is me. The Spinal surgeons see things on very much a structual engineering basis, we have a curve we can straighten it, what I cant get through to them is that her body wants to pull her this way and that and that without the baclofen pump that is exactly what it will do !
    Personally, and I speak as a Mum and not any sort of expert, it seems to me that having the pump operational after the surgery would be critical. They have said that it will take 6 months for the fusion to fully heel and i should think that during that time she need to be kept as still and relaxed as possible or it will never heel.
    As for Oral Baclofen, we tried that before opting for the pump, what we found was that the initial results were great but thet she became used to it and we had to keep increasing the dose which, as it was taken orally would effect her entire body and being and she became dopey. The pump is much better at directing the dose to exactly where needed.
    It looks as if we both have an almost impossible decision to make. I very much feel that IF we go ahead it will either be the best thing that we could ever do for her or the worst, and that in all honesty we wont know until we do it. I wish you well K x
  • cheneycheney Member Posts: 3 Listener
    I am in a similar position with my daughter. She has athetoid/dystonic cp. In her early teens the dystonia became much more pronounced. She would raise her right hip, twist and arch her back, almost jackknifing backwards. It was obviously very painfull and very distressing. She had oral Baclofen to try to reduce the spasm, which worked to an extent, the problem with Baclofen, particularly oral Baclofen is that one quite quickly becomes used to it and we were constantly increasing the dose. That in itself caused problems, as she was taking it orally, it effected her whole being, making eating a drinking more difficult and also making her generally dopey.
    Just over a year ago she had a ITB fitted, from the moment she woke from the op she was a changed person, although we are still playing around with the dose to get as good a result a possible.
    She too has a serious scoliosis probably around the same 75 - 80- degrees, the Spinal surgeons are keen to perform corrective surgery (it's approx 50% correctable), which would also be fixed to the pelvis. They made no mention of the ITB, when I brough up the subject they simply said that they would "Whip the catheter out during the surgery and stick it back in after".
    When I mentioned their intensions to the Pain Management Consultant he told me that under no circumstances were they to remove the catheter as they were not qualified to do so, and that one can not simply withdraw a drug like Baclofen and it is extremely dangerous.
    It seems to me that you have to have the ITB and full co-operation between the Scoliosis Surgeons and the ITB team then in order for the surgery to be sucessfull. I have been told that it take approx 6 months for the spinal rods to fuse and the way my daughter wiggles and twists even WITH the pump there is no way that it would ever heal ! I am only a Mum and no sort of expert, but I feel very strongly that the only person looking at the big picture is me. The Surgeons are well intended and wonderful at what they do, but I can't get them to understand that she has no control over the way she moves, and where you or I with metal rods attached to our spine would know that we couldn't make certain movements, my daughter and youngesters like her have no control over how her body moves. I hope my comment have been useful.
  • kkristiny1kkristiny1 Member Posts: 2
    Hi just read your story and was wondering if you went for a scoliosis surgery? (My nephew is in the same situation at the moment and it's a big decision with lots of concerns and worries about scoliosis surgery with ITB fitted.Thank you
  • wheelygirlwheelygirl Member Posts: 45 Courageous
    I have spastic athetoid quadripelgic cerebral palsy and had spinal rods for a severe lordosis and scoliosis 4 years ago. I don't have an ITB as they couldn't fit it due to my spinal deformities but take oral baclofen. The surgery has given me back the ability to sit in my chair for much longer periods and be able to use my hands to feed and now even hold a pen
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