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Thread: Spine surgery

  1. #1
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    Default Spine surgery

    The specter of spine surgery has arisen once again. We have always said no to surgery in the past. We just didn't want to put Tyler through the trauma, the pain, the weeks or maybe months of recovery, the risk of infection, the risk of death from the surgery alone. However, Tyler's scoliosis and kyphosis have progressed 8 degrees in the past six months (I don't even remember the numbers we were given yesterday cause I am numb). We are facing him not being able to sit in a wheelchair and being confined to a bed for the rest of his life if the progression continues. This not only traps him, but us as caregivers. We are torn over what to do. How do we transport him to doctors visits, go on a trip, get him out of the house, visit our cabin in the mountains, let him sit in the sun???? Anyone else facing this, or have faced this reality?

    I usually post on the child neuro site and have asked this question there as well. Our spine surgeon said that he mostly sees children with CP having this surgery, so I thought this would be a good place to ask this question of. Tyler has Ohtahara Syndrome which presents in many ways like CP.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  2. #2
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    Default

    I was offered a spine surgery but it was for a totally different purpose. It was supposed to make walking easier but since I already walk well for a person with CP we decided against it. I think in your son's case however doing a spine surgery should be considered as it would improve his quality of life. I'm not a doctor though. All the best of luck! I know its a very hard choice.

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