@Deanna, I’m so very sorry for what you’ve been through in CA & that you’re now having to look outside of your country for help. I’m curious who the doctor in London is w/ a 4 year wait for a new patient. Do you recall his name? The most experienced vES surgeon we know of in the UK is Mr. Axon so it might be worth contacting his office:
•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospita
We have one doctor on our list in Nova Scotia who’s done a more complex surgery for one of our members, @TML. Though he didn’t have a cervical fusion, he had both bilateral ES & Hyoid Bone Syndrome plus compression of his internal jugulars & some part of his carotid arteries. His surgery was seemingly successful & at last count, he was awaiting a second surgery for his second side.
•Dr. Jonathan R. B. Trites - Halifax, Nova Scotia - Does ES & Hyoid Bone Syndrome surgeries - Jonathan R.B. Trites - Division of Otolaryngology–Head & Neck Surgery - Dalhousie Universit
As far as doctors in the US go, Dr. Cognetti is booking initial consults in Sept. & Dr. Hepworth is booking in July, I think. Dr. Costantino is booking in May/June. Dr. Nakaji in Scottsdale, Arizona, has also done quite a number of successful surgeries for our members, though several of our members who had more complicated cases haven’t noted good recoveries so far.
I have to say that no doctor has a perfect record when it comes to good surgical outcomes. I believe each does the best (s)he can while doing the surgery, & sometimes a patient’s body just doesn’t respond in the manner expected. Of course, there can also be tough decisions made during complex surgeries that sometimes don’t lead to optimal outcomes.
Have you tried sleeping with head & shoulder elevation at night? A wedge pillow can be very helpful with that, but you’ll need to experiment with how much elevation you need to help reduce your headaches/pressure when you sleep. Also some of our members have had great results with head pressure reduction by taking a Rx blood thinner such as Brilinta, Plavix, or Xarelto. It can take 3-4 weeks to make a difference once the med is started. If you want to try low dose aspirin first, that is also an option.
We’ve recently had several members post that seeing an osteopath & having gentle cranial/cervical work done has helped a lot in reducing pain.
Rosie in the UK posted this information today. I don’t know if any of it would be helpful for you, but it’s food for thought.
I hope you’re able to get a consult ASAP with whomever you decide to meet with next. Please let us know what you decide to do & how things are progressing for you. 