george, if you have not asked this question at carecure, you should.
I've not heard of your condition. I'm sorry. It sounds awful.
I did, however, wrestle with pressure sores for nearly a decade. In my four flap surgeries my ischial tuberosities have been shaved down to make them less pointy. i'm unsure if that would help you.
best of luck.
Edited by kan5a5 (05/02/12 12:00 AM)