New to site, 27 year old

[crystal]

Hi I am new to the site and am 27 years old. I was born with a dimple which is considered occulta. But in 1982 they had no idea what it was. They did surgery when I was 5 years old for a pilonidal cystectomy. Well come to find out later when I was 12 years old I actually had a tethered spinal cord and was officially diagnosed with Spina Bifida. They did surgery on me within 4 days of the diagnosis due to the severity of the tethering. Since then I have had 2 other foot surgeries on my right foot. That leg is shorter than my left leg so they are more issues with weakness. I also have claw toes on the right foot. I do ahve bowel and bladder issues. Other than that I have given birth to 3 beautiful children. Now my 3 year old is having urinary tract infections every month. She is now scheduled to go to a urologist and then for a MRI so they can determine if she has occulta.

I receive benefits through the Veterans due to the fact my father was in Vietnam and Agent Orange. So they pay for my healthcare and monetary allotment every month. They are now also helping to pay for my college. They don't consider me occulta due to me having a lot more issues then people diagnosed with occulta.

I think that about covers it. I don't know any other person who has Spina Bifida.

[Dodger67]

Welcome Crystal :happy065:
Late diagnosis of occulta is very common - like you, many are only found when complications appear. The number of issues you have does not change the fact that it is SBO. Many people never have any symptoms at all.
Take a look around, there are lots of threads on occulta.

[dahliafaolan]

Like Dodger said, late diagnosis of occulta is very common. My great aunt wasn't diagnosed until she was 82, but by that time, she was so far along with Alzheimers, there wasn't anything to be done about it.

[valerie]

Welcome!!!