Hi BlueSky (and thank you for the sweet compliment).
You have done so much better than I have at finding experts to advise you about whether or not your vessels are strong enough for angioplasty.
My IR said that having EDS would preclude me from having the procedure, until I explained to him that unless they were screening people for EDS, he'd likely already performed many procedures on EDS patients. I also explained that we were tested for both Loeys-Dietz and the Vascular form. All clear. (I didn't mention that my mom lost 2 sibs under the age of 3 from vascular events, however. I thought that might freak him out. ha).
Dr. Hubbard wasn't aware of the procedure being done on any EDS patients, Dr. Hal Dietz (<3 him) wasn't able to give us any advice, and I haven't heard back from Dr. Sclafani, although I know he is interested in the EDS connection.
I truly believe that MANY patients with MS have EDS and are not diagnosed, so I decided to take my chances. I did it for the kids, and for science, and so far, so good.
I agree that it sounds like you have EDS (not just from the autosomal dominant characteristic of the gene, but from your symptoms/signs as well). And when you see enough of us (especially the classic type), you end up FINDING things on your body that you didn't realize were EDS related.
One or 2 of my videos coming out will show some of the things to look for EDS of all kinds.
Don't you love being a pioneer? (well, actually....)
Enjoy the lovely rain,
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea