Hi & welcome to the site!
Sounds like you’ve had a really tough journey, & dealing with EDS, CCI & POTS as well is rough…
There have been quite a few mentions of these in the discussions; hopefully others with experience of these will chip in, but it seems that surgery recovery can be tough & there can be complications but surgery can be worth it.
Re Intra-oral surgery vs external, the consensus is that external is better- better visibility for surgeons, more of the styloid can be removed, less infection risk etc, although members have had good outcomes with intra-oral.
Dr Samji is very experienced & has done many successful surgeries, so would be worth seeing if you don’t get anywhere with local doctors… @Snapple2020 has EDS & had surgery with Dr Samji. Although if you have vascular ES he’s not the most experienced with that.
There’s been a discussion recently about NYC doctors, here’s a link:
NYC surgeons? - Symptoms and Treatments / Doctor Information - Living with Eagle
Whether they do online appts to save you travelling I’m not sure.
Flare ups are common, there’s info in the Newbies Guide Section about treatments for the pain, but briefly heat or ice can help, lidocaine/ steroid injections into the styloid area sometimes work temporarily, or lidocaine patches, one member’s just mentioned TENS helping, sleeping propped up a bit can help. Nerve pain meds like Gabapentin or Amitriptyline help if you get neuralgia caused by ES.
So sorry that the patches didn’t help, but if pressure on the veins is causing the leaks then removing the styloids is the best next step…
It’s so hard when others don’t understand, & it sounds as if there’s alot of pressure on your husband too, so hopefully connecting with others on here will help. Sending you a hug 
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