Care for Adults with Spina Bifida

[Sandrah]

I am a 44 year old woman with Spina Bifida. I was born with a L2, L3 myelomeningocele, a Chiari Malformation, and a hydrocephalus. I had an ideal life until the age of 30. I walked, ran, jumped, swam, danced, taught aerobics. I had two healthy normal sons. Since the age of 30 things have slowly gone down hill, I have had surgery to repair tethered cord. I am now suffering from a multitude of symptoms associated with the Chiari Malformation, and Hydrocehphalus.

After a nightmarish visit with a renowned neurosurgeon in the Seattle area. I sought out a support group for folks living with Spina Bifida.

In this community there is a very common theme, the lack of care (especially sympathetic care) for those people suffering from degenerative complications associated with SB. Patients are being told that their symptoms are all in their head. Even though most are experiencing the same symptoms

In the Seattle area there are no clinics specializing in Adults with SB. Three clinics for kids but the minute you turn eighteen, nothing. It is as if the medical community would like us to just shut up and disappear. In a city filled with some of the best hospitals in the country how can this be.

If you are an adult living with SB I would love to hear from you to brainstorm on ways to get help with our issues. If anyone knows of Neurologists, and or Neurosurgeons who have knowledge of our specialized needs I would also appreciate hearing from you.

[wheelergirl13]

what is life like in seattle or washington area? i lived there growing up until about age 5 and I wanted to go back for college, but my parents are against it due to the rain and the ice that accumulates, and the big city aspect they are worried about because they are unsure of the accessibility in washington state, mainly seattle/tacoma, kent.

[rosepetalgyrl]

Hi, I would also like to have info on this.. for the life of me I can't find resources anywhere, except maybe University Medical Center Neurology Clinic, but you need to be suffering from a specific neurological issue to be seen.

[rosepetalgyrl]

Seattle Kent Tacoma is extremely accessible.. I've lived in Seattle most of my life and now live in Kent and have hardly any problems getting around