SBAIL

[Bruce]

Hi. I live in Southern Illinois about 30 miles east of St. Louis MO. I am a 39 year old with Spina Bifida. I have no shunt. I have a paralyzed left leg, turned right leg, herrington rod in due to the S curved spine, and an artificial Sphincter for the bladder. Aside from a little constipation, that is about the extent of my challenges. I also use crutches and a full leg brace with waistband full time.

I work full time (15 years now) and have a BA from SIUC. I have had 33 operations so far and expect to have some more on the sphincter somewhere down the road. I have not had a regular Urologist in about a year and just lost my orthopedic doctor to retirement and have been without a back doctor for about 4 years. We have no Spina Bifida clinic in St. Louis and I have tried on my own to try to find someone who has a little experience with dealing with patients with SB and have had no success. I saw on the SBAA website aboug a facility called RIC in Chicago. Do they have a Spina Bifida clinic there? When I talked to my old urologist (the head of St. Louis University Hospital Urology Dept.) before he left, he said no one in St. Louis has enough experience to do another artificial Sphincter surgery on my because of the scarring. He said I may have to go to the Mayo Clinic. Does anyone have any suggestions for me? I am so tired of calling up Specialists in the area and having to explain what SB is to the doctor's staff. Also, are there any downstate activities that the SBAIL does south of Springfield? Thanks!