u/xx_remix

Hello,

Im looking for a specialist if anyone has recommendations. I am from CA. Have Kaiser insurance and they don’t recognized hEDS, so they diagnosed me with hyper mobility disorder, though I suspect hEDS based on Brighton scale.

Anyway, last year I was diagnosed with eagles disease after developing pulsatile tinnitus. I had the styloid surgery which didn’t help. There has been multiple talks about if I have IIH as a cause for the PT (they ruled it out). They are recommending another skull surgery for another structural issue that isn’t guaranteed to help either. 😭

As I’m learning more about how patients with EDS have vascular issues that cause IIH & Eagles disease, I’m leaning toward a second opinion before i go under the knife again. I have bilateral moderate transverse sinus stenosis but no significant IIH symptoms aside from pulsatile tinnitus (this is my main concern that affects my quality of life). I’ve read microdosing GLP1 can help.

I just want to talk to someone else for a second opinion, who actually specializes in these things or has better knowledge. Kaiser sucks at this.