I have a 7 year old son who is diagnosed with meningocele. He has been operated on twice when he was a baby. They were unsuccessful. We haven't had any big issues but recently we had MRI pictures done because of some bathroom problems. Our neurosurgeon said that his spinal tube is beginning to stretch and will cause neuorologicle problems in the future and they are taking a conservative approach because must likely if they operate he will be paralized from the waist down. The filament at the end of his spinal tube is fused in his "bump" in his lower back which is surrounded by nerves. My son is starting the first grade as a "normal" functioning child. Does anyone have any adivise? We are concerned that one day he won't be able to walk or go to the bathroom on his own. I am not sure of the terminology because we live in Finland and i am unsure of the translations. Thank you!
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