Nervous!

R.B.,
OUCH!! When it rains it pours!!! I wonder how many EDSers have ES on top of everything else? Who was your surgeon that removed your styloid? Any relief or complications after surgery? I have one Dr that says I have ES but 2 others aren’t sure.

Hopeful,
Dr Henderson did my Tethered cord surgery. If I ever need another spine surgery, he would be the only NS to work on my spine. It’s a wait to see him but I have no regrets.

Thanks Amy ... another vote of confidence for Dr. Henderson!

I again look forward to meeting with him! I hope your trip out to see him again goes smoothly and you get the relief you're looking for,

Hopeful

Hello all. Its been a while since anyone posted. I was recently diagnosed with ES and also have Ehlers Danlos Syndrome - hypermobility type. A close friend has EDS, had Chiari surgery about 30 years ago at UCLA and just had a stent put in a few weeks ago due to spinal fluid leak. My daughter has EDS as wel. Genetic testing shows some areas in the marfans area but too little info to evaluate the value of the gentic testing at this point.
I had a whiplash at age 19 and a skiing accident (another whiplash) a few years later. IM now 63. I have had a lifetime of neck and jaw pain and tried all sorts of modalities for relief. I have severe osteoarthritis in my jaw and elbows. I was told in my 30’s I was hypermobile but no mention of EDS. It wasnt until my daughter was diagnosed with dysautonomia did we see a geneticist. I was told alot of my chronic pain issues were “fibromyalgia”. I have have over 10 surgeries for ligament repairs and nerve compressions caused my the EDS. My shooting nerve pain originating in the throat started in 2015. After 5 years, and 5 major pain flairs, I finally made my way to a osteopathic neurologist for botox and nerve block injections. He said I hate to give you another syndrome re: Eagles. Dr. Samji just confirmed I need surgery.
I wonder the linkage between EDS and Eagles also. I havent found much online in my research. Any EDS’s out there?