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Basal Encephalocele

My 11 month old son was diagnosed with a Basal Encephalocele at 7 months old.  He was born with cleft lip and palate, hypertelorism, and unexplained nystagmus.  We also learned through a myelogram at Children's Memorial that he has a CSF leak.
We have sought opinions of various doctors, but have had a difficult time finding doctors experienced with this condition.  Is there some way to find out which neurosurgeons have experience with this condition in this specific location?
At the present time we are considering a neurosurgeon in Birmingham, 6 hour drive, and a neurosurgeon in Chicago, 20 hour drive, we would fly for treatment, but there are no direct flights.  How important is distance in this type of treatment and follow up?
The two doctors whom we are contemplating to preform the encephalocele repair have different opinions on the repair.  One discussed lifting the sac and placing a bone graft and the other discussed cutting the sac and placing a bone graft.  The encephalocele does contain a small portion of brain tissue in the frontal lobe.  The doctor who wants to cut the encephalocele sac says the brain tissue is nonfuctional.  How can they tell?  What is the appropriate method for this repair?  Cutting vs. lifting?
Thank you for any information you may be able to give in this situation.

Sincerely,

Gina Taranto
1 Responses
Avatar universal
Gina, I'm sorry to hear what you must be going through...And of course you want the best for your son, so you are right to ask for the advice of others. How old is your son now? Was he born with the cleft lip and palate? I just ask because a recent study has shown that sometimes children born with condition may have been affected by the fertility drug Clomid. Maybe you'd be interested to read this http://www.newsinferno.com/health-concerns/clomid-birth-defect-link-investigated/
If this does not concern you in the slightest then I'm sorry for wasting your time. I wish you and your son all the best and hope you find the best treatment solution available.
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