Patient Comments: Spina Bifida - Describe Your Experience

Please describe your experience with spina bifida and anencephaly (neural tube defects).

Comment from: msrock12, 25-34 Female (Patient) Published: December 07

I was born with spina bifida in 1981. They told my mother there were many things I would probably never do. I can walk and go to the bathroom by myself. I eventually started getting seizures which they say are caused by the spina bifida and hydrocephalus. I take medication for them and haven't had a seizure in many years. If not for my neurosurgeon who always told me I could do anything I wanted to, this wouldn't have been possible.

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Comment from: bsdjaguar, 75 or over Male (Caregiver) Published: July 17

My husband was born with spina bifida and had surgery right after his birth in 1929. It is miraculous he lived 86 years without any paralysis or any other symptoms until his early 80s. He then had some difficulty walking and various odd symptoms. He could not taste or smell and did not feel pain. He even had painless severe heart attacks. He had a wonderful life.

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Comment from: jacqueline, 45-54 Female (Patient) Published: October 31

I had spina bifida when I was born. I have no ill effects from it. I am a perfectly healthy 51 year old woman. So you can have a normal life if you have had spina bifida.

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Comment from: swmbo4, 45-54 Female (Caregiver) Published: September 05

Both my father and I have pilonidal cysts, which I have been told is related to spina bifida (SB). My youngest son has SB occulta. As well, both my father and I have multiple sclerosis (MS), and three of his sisters had MS.

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Comment from: 25-34 (Caregiver) Published: July 12

my concern is, I have a few girls that were diagnosed with a slight case of spina bifida, after they were a 2 months old, there seem to be no follow up, after that , but they did experience problems growing up, and being older now , they have been recognized with bi polar disorders,, and so on, can spina bifida cause this?

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Patient Comments

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Spina Bifida - Signs and Symptoms Question: What are the signs or symptoms your child has experienced with spina bifida or anencephaly?
Spina Bifida - Treatment Question: What forms of treatment has your child received for spina bifida?
Spina Bifida - Complications Question: Did your child or loved one experience complications associated with spina bifida?

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