 "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Shawn,
I am very sorry to hear about the problems you are now facing. I never heard of Ehlers-Danlos before, but I did a quick web-search and there is a Ehlers-Danlos National Foundation and some info on the Mayo Clinic website.
If it was me, I wouldn't take no for an answer. You need to advocate for yourself and seek treatment elsewhere even if you have to travel. If you haven't done so already, do research and make lots of phone calls. Perhaps a family member or trusted friend could help you with this.
Wishing you the best.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| 
