Posted 4/9/2014 11:16 AM (GMT -7)
Hope that works out for you!! From what you explained, sounds like you have a right to those benefits.
My tethered cord/spina bifida was caused by a freak thing, just not enough folic acid to help the spine form correctly.
I am 35 y.o. Female. Like I said, went my first 20 years undiagnosed. Main symptom was bladder problems, and many docs just brushed me off, or tried behavioral training treatments, one doc even told my mom that it was all in my head, and I could stay dry if I wanted to!!!!!! Boy would I like to see that doc again and punch him in the face. Ok, maybe not. But all those years of problems lead to so much shame and embarrassment and just plain feeling bad about myself. It caused a lot of depression and was very traumatic. At age 20, saw a urologist who actually put me on meds and stuff, and eventually said "this just doesn't add up. let's send you for an MRI just to rule out some stuff." Well, MRI came back showing tethered cord, and off to the neurosurgeon I went. Had 2 surgeries (between semesters of college) and due to complications, have had chronic back pain ever since then. That was 15 years ago. Docs discovered lots of nerve damage to bowel and bladder stuff, and some damage (minor) in my legs/feet. Had a bladder augmentation in 2006, and sometime in the next several months will have surgery to create an ostomy and possibly remove my colon--still undergoing testing to figure out what needs to be removed.
The weirdest part is that I went to grade school with two other girls that had spina bifida, although I didn't know I had it at the time.
I wish you didn't have the tethered cord, but I am glad that I found you on here, cuz like you said, it sure isn't the most common thing. Sorry to ramble on, I would love to hear more about your situation and stuff like signs/symptoms/treatments, etc. that you have been thru.
Take care and hope to hear from you soon!