Patient Comments: Spina Bifida - Describe Your Experience


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

Comment from: Irishgurl19, 25-34 (Caregiver) Published: April 09

I am in the process of finding out what is wrong with me. They said they found something on my upper left kidney, a lesion. I don’t know what that means, if it is cancer. I had uncontrolled weight loss of 51 lb. in 3 months without trying, and my side and back hurt like crazy. I think it is colon, kidney or stomach cancer. A total of 16 people died in my family all related to cancers.

Comment from: Njabulo D, 3-6 Female (Caregiver) Published: April 05

My son is having spina bifida. He had an operation three days after he was born. But he can walk. The problem is he cannot control himself when he wants to go to the bathroom.

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.

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.

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.

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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