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Does anyone have experience of correcting scoliosis?

VickySVickyS Member Posts: 133 Listener
edited April 2015 in Parents and carers
I'm posting this on behalf of a friend who doesn't have internet access. She is looking for advice from other parents who may have been through anything similar:

"Hi,

I am the parent of a disabled daughter who has cerebral palsy. She is in her
thirties. She has marked spasticity throughout her whole body and she has a
severe scoliosis [spinal curvature]. She uses a powered wheelchair for
mobility. She suffers a great deal with back pain and the only way we can now
help her over and above the pain relief medication she takes is by lying her
down on her bed every day for a few hours every afternoon.

We went to see the orthopaedic surgeon a couple of weeks ago to talk about the possibility of correcting her spinal curvature which might reduce some of the pain she feels or to see whether he could fit a brace to support her. He has told us that because her curvature goes over a certain degree he does not want to fit a brace [says this would not help in any way]and also he does not think she would come through the operation because of her cerebral palsy and because the operation is such a big one. She does suffer from a lot of recurring infections.

The surgeon said he has carried out this operation on one other adult who has cp and that this went ok but he does not think the same for our daughter.

Does anyone out there have any similar experience or does anyone have any information on operations to correct spinal curvatures. As her parents we are both very upset to think she may have to go on suffering with the pain which is getting worse and worse as the years are going by. This is such a big decision for us. Our daughter also does not know which way to go with this as she is capable of making decisions for herself.

Would welcome any comments."

Thanks in advance for any experience you can share with me to pass on to my friend. 

Vicky xx

Replies

  • sarahprattensarahpratten Member Posts: 83
    My son (aged 14) has recently developed a slight scoliosis. He is getting a lycra suit to help stabilise his joints and improve muscle tone (he has low tone). This I believe is better than a brace anyway as it allows movement and provides feedback to muscles. As your friend's daughter's scoliosis is severe it may not be appropriate, but it may be worth investigating.
    Have a look at https://www.dmorthotics.com/medical/products/
    Our NHS (in Kent) uses them and holds monthly clinics. I believe they also have NHS clinics in other areas of the country or you can go to them direct.

    Also, for short term assistance with pain, a chiropractor or osteopath may be able to help.

    Best wishes,
    Sarah
  • 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
  • vassonevassone Member Posts: 1 Listener
    Our daughter was born at 24 weeks and has severe complex physical disabilites, she is quadripelgic. She developed severe scoliosis at 14 yrs old. Our local hospital, in Liverpool, did not want to operate as we lacked confidence in the doctor as he was unable to give us accurate mortaility rates. He was somewhat against doing the op due to her disabilities. We researched and found Dr Nordeen who is based at RNoH in Stanmore, we got a private appt in London to see him, and he agreed that our daughter was in desperate need or the operation or she could potentially die very prematurely. She had the operation over 3 yrs ago and Dr Nordeen and his team where fantastic. I would recommend going to your GP and getting a list of all spinal doctors and speak to each secretary and go to visit them in clinic. Whilst it was a very long operation over 9 hours our daughters quality of life has improved hugely and now her spine is corrected with rods, i wish we would have done it sooner. Good Luck.
  • RobsRobs Member Posts: 49 Courageous
    Hi l have Scheuermanns Decease and had surgery 15 years ago. l would strongly advise against taking the surgery, unless like mine, it became life threatening.  This is part of a letter sent to the DLA by my surgeonSurgery is rare for Scheuermann’s disease, especially in adults. It is considered absolutely necessary for you as you have severe deformities ( an 86° degree thoracic kyphosis), in your case neurological deficits are present, and chronic pain is also an issue with the deformity. The goal of the surgery is to reduce the deformity and relieve pressure to your heart and respiratory system, although the surgery will probably not lesson pain. 
    Spinal fusion for kyphosis and scoliosis is an extremely invasive.
    A front thoracotomy (approach through the chest); Side Anterior and Rear Posterior openings will be made to release the tissues, remove the discs, and place bone grafts (taken from ribs and pelvic bone) in the spaces to fuse the thoracic spine.
    On the internal-facing side of the spine, ligaments (which are too short, pulling the spine into the general shape of kyphosis) must be surgically cut, not only stopping part of the cause of the kyphosis, but also allowing the four 18" titanium rods to pull the spine into a more natural position. Ligaments will be replaced with the insertion of titainim hooks, screws and titanium wires.
    The damaged discs between the troubled vertebrae (wedged vertebrae) will be removed and replaced with cartilage and bone from the hip or other parts of the vertebrae, which once 'fused' will solidify and hold the spine straight during the fusion process. 
    The titanium instrumentation/hardware holds everything in place during healing and remains necessary once fusion completes. 
    The damaged discs between the troubled vertebrae (wedged vertebrae).
    After surgery, provided the fusion is successful, all of the affected segments will be fused into one continuous bone and will mean no spina articulation will be achieved thereafter. 
    Subsequently,  pain management will be a prevalent requirement for life. There is more significant pain in the thoracolumbar variant as the condition involves the lower thoracic and upper lumbar spine. I have taken this decision, having considered comorbities with and without surgical intervention. 
    As a 48 year old man undergoing surgery for Scheuermann's disease is rare and you will need physical therapy and management for pain and mobility. However, even so your range of motion will be limited very much. 
    Recovery from kyphosis and scolorosis (Sheuermanns Decease) correction surgery can be very long; typically patients are not allowed to lift anything for a year. You will be out of work for the remainder of your life. 
    However, once the fusion is solidified, about one year, you will be admitted to The Royal Leamington Spa Rehabilitation Hospital, under the care of Mr Badwan for a period of one to two years.
    Prognosis
    Spinal fusion for kyphosis and scoliosis is an extremely invasive surgery. Possible complications may be inflammation of the soft tissue or deep inflammatory processes, breathing impairments, bleeding and severe nerve injuries. 
    As early as five years after surgery you may require reoperation, longer-term issues remain unclear.

    My surgery took 18.5 hours and has left me bed ridden. 
    Take care Rob
  • Debbie_ScopeDebbie_Scope Member Posts: 947 Pioneering
    Robs

    A heart-felt thanks for contributing to this discussion. I'm lost for words right now, that was a really powerful post. I'm really glad you're here and i'll speak to you soon

    Best wishes
    Debbie
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