I find all the information very valuable posted by all of you. However, I don't see alot of info about how many of you were diagnosed. Obviously the symptoms and MRI...
Paula L. replied:
LDR- They did correct the stenosis & said if that doesn't do it they'll go back in and work on the TCS. Lovely.: ) Madison-- Have you tried OHSU? I had my first TCS surgery there and was impressed with them. Since they are teaching hospital y ou might find a urologist who's a little more in the know regarding TCS... Dr. Selden's office (OHSU pediatric neuro) might be able to help direct you in your search. Good luck!
Paula L. replied:
I was 40 yrs old when I saw Dr Selden cuz he was the one with the experience. Wouldn't hurt to talk with him/the OHSU folks.
Cortney D. replied:
http://www.umm.edu/radiology/myelog.htm
Madison L. replied:
I'm from Portland Oregon. And a Dr. Webbey did my surgery at Emmanuel Hospital. At the time she was one of the only surgeons doing the surgery for patients that she believed had Occult TCS. I was 15 at the time and had severe bowel and bladder issues. After the surgery my bowel problems have cleared up, but my bladder incontinence is still a problem. I'm currently having tests done, but they are only showing that I have stress incontinence which is not true. I'm trying to find a urologist who can work with me on the neurological side effects of this. So far no such luck, I'd like to know what it's like to be a normal teenager at some point.