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Posted by Monique
on January 21, 2000 at 13:35:09:
Hello, I am 33 years old and was only recently diagnosed with lipomyelomeningocele. I know very little about it because I have only seen my neurosurgeon once since he diagnosed me last year. None of my questions have been answered and I'm very frustrated. I am in constant pain (in my coccyx area). I have great difficulty sitting, and my bowels and bladder have been affected. Surgery is apparently a must, but firstly don't want a surgeon who won't even take the time to talk to me, to be playing around with my spinal cord. He's never done the procedure before and apparently the only people he knows who have are at Sick Kids Hospital. I want to find out who to go to for the best treatment, or just excellent medical advice. I'm also interested to know of other people who were diagnosed with this in adulthood and how they dealt with it. Does anyone know it there are any alternative roots to helping to regenerate or prevent further nerve damage (ie: accupuncture).
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