I really feel for you- before my first surgery I was starting to feel pretty ill & had some very scary vascular symptoms, I’m UK & it was a long wait for treatment, so I can understand some of what you’re experiencing, although obviously you have the complication of vEDS so that makes surgery even more daunting…I hope that you can speak to Dr Hackman this week & find out if he’ll do the surgery, will be praying that all will go smoothly.
Have you tried any nerve pain medications? One of our members started this discussion recently:
Want to make sure nerve pain sufferers like us are aware of this medication - Symptoms and Treatments / Doctor Information - Living with Eagle
Will be interesting to see if the SVT episodes improve after surgery, that all sounds very dramatic being cardioverted in the back of an ambulance…
Sending you a hug 
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