Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Hello everyone. Thanks you all so much for your warm welcome. Haydn is much improved after his decompression surgery.He has had problems since birth with sleep apnoea poor oral phase(unable to swallow)and also gastric refux.These are on top of other major complications like kidney reflux and a neurogenic bladder. Since his surgery the apnoeas have stopped altogether,the reflux has improved so they are no longer talking about surgical intervention and his swallowing has improved so that he now eats ok but has problems with fluids still. His docs only considered decompression when he began having episodes of unconsciousness and shunt malfunction was ruled out. I was told after the event that the reflux,swallowing and apnoea are all symptomatic of compression but no-one ever raised that possibility or investigated it before.I'm really angry as he went through 31/2 yrs of pain and suffering for no good reason except that no one cared enough to follow through. They also told me that without the surgery paralysis could extend to his upper limbs-a major worry for a wheelchair bound child. Still allis well now,his syrinxes are draining and he is free of headaches etc. A much happier boy today than 1 yr ago. He is also beginning to reach some milestones that were considered beyond his reach. Thanks again for your welcome and your interest in us. Regards Trish in New Zealand Quote Link to comment Share on other sites More sharing options...
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