Hi all,
First and foremost, THANK YOU to everyone who provided advice and support. @Isaiah_40_31, your advice and compassion has been a guiding light since the start of JC’s diagnosis. For that, thank you from the bottom of my heart.
I’m going to write everything into this post, and update it going forward. I hope it will act as a guide for those who feel they cannot get support in their own country.
JC has been VES symptomatic for many years and was undiagnosed. He has a diagnosis of long covid, polyneuropathy and debilitating TMJ, so many of his VES symptoms were disguised. Despite 10-15 various imaging scans since 2020, none of them picked up his styloids (6cm/5cm) until they were discovered as an “incidental finding” in August 2024, but this was not flagged by doctors or communicated as a potential reason for concern.
We are from Vancouver, Canada. In September 2024, JC and I were in Türkiye. My mom (a Canadian expat living in Türkiye) had been diagnosed with cancer and we were there to visit and support her during her surgical recovery. On that trip, JC had an explosion of pain in his face, and given the medical system is pay-to-play, we took the opportunity for more scans and doctors appointments. JC was diagnosed with ES and told he needed surgery.
I joined this group, and @Isaiah_40_31 said we should consider staying in Türkiye because Canadians have very little access to support at home. I wish we listened. It would have saved so much time and money. Upon returning to Vancouver, I have emailed a dozen surgeons in British Columbia, and none are familiar with the surgery. We did a virtual consult with Dr. Osborne ($250 USD), and his surgery was ~$67,000 (USD) or $91,000 CAD (for both sides done in the same week). Others have reported similar out-of-pocket costs, with the exception of Dr. Cognetti, who has a 4 month consultation waitlist ($8000USD + $12,500 for vascular for one side, only does 1 side at a time).
I won’t name names, but several people have been generous with their time and provided me with information about their experience with Dr. Kamran Aghayev in Istanbul, Turkey. Dr. Kamran is a neurosurgeon and has a sub-specialty with the spine. This is especially important because JC has minor ligament laxity in his C0-C2. Dr. Kamran has the experience and knowledge to complete the styloidectomy, vascular decompression, C1 shave (if deemed vital for a successful surgery).
This is happening fast. JC was diagnosed in late September, and here we are booked to go back to Türkiye, arriving on December 6 and surgery on December 10. However, this diagnosis was like an ah ha! for him, and it seems critical to have the styloids removed so that he can move onto other rehab.
The flights are the most expensive item for us, except for the surgery itself. So that other people understand the costs of overseas medical, this is what we’re facing:
Flights: $5100 CAD (includes emergency exit upgrades for more room/comfort, and flexible return ticket). Keep in mind that Vancouver - Istanbul is a 12 hour flight. It wouldn’t cost as much if you live further east.
Accommodation: $3400 CAD (for 5 weeks in a beautiful first class 2-bedroom apartment)
Surgery: $15,000 USD (bilateral removal, vein decompression, C1 shave, VIP room [with space for me]) This could change depending on the scope of the surgery.
I think all in, this trip is going to be about $35,000 Canadian, so less than half the price of Dr. Osborne’s surgical cost (not including flight/accommodation). We’ve opted to stay longer to resolve any complications, have multiple follow ups, and a CTV at the 4th week to ensure the jugular vein is flowing freely. Not to mention, to have Christmas and New Year’s with my mom. With a bit of luck, we’ll ring in the New Year celebrating both health and happiness.
, & of course, sending up prayers for you. 
