Hello, new here

What brought me here was consult with interventional radiologist in oct to review my brain ct at the urging of my neuro early in june after brain mri showed some vessel irregularities and she had me get the ct w/wo contrast in june. I see neurologist for migraine, neck pain, occipital neuralgia for many years.

IR did an arteriogram/venogram end of sept and he notes severe stenosis of my left IJV with many varices in my posterior neck. Right side vessels are enlarged. He reported suspected styloidgenic compression and referred me to ent specialist at U of U who i saw today. The dr was nice but surprised i was there to see him. I got his name from a FB ES support group, but he does not diagnose or treat ES. They referred me to a different ent/skull base surgeon who cant see me till Jan 9. The receptionist says he treats ES when i called but i’m still going to confirm before i actually go. He is also part of the U of U ent clinics. Just so frustrating.

Hurry up and wait. Not that i want surgery right away but i want some answers! I’m right at the beginning of diagnosing/treating a large (28mm) radicular cyst above a upper molar that is growing into my maxillary sinus for at least 8 years. Seeing an endodontist initially tomorrow to get that ball rolling. Also headed to some sort of decompression/fusion surgery on my lumbar spine at L4/5. It’s a mess. My left leg (outside calf) has nerve pain that takes my breath away. Seeing neurosurgeon’s office next wed to discuss next options. I’m sooo tired.

Hi and welcome!
I’m so sorry that you have so much going on, I’m not surprised that you’re exhausted with it all!
If you are able to travel, can I suggest you think about getting referred to AZ;
Dr. Peter Nakaji, 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, he works w/ vascular ES, he also does shaving of the C1 process as well as styloidectomy, this is often needed when there’s jugular compression. Quite a few members have had surgery with him; if you have IJV compression it is a good idea to see someone with experience with this.
I hope that your appointment tomorrow is helpful, would be good to get some of these issues crossed off your list!

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Hi Bcats, I saw your post in the FB group, I forget if it mentioned the severe stenosis. I very strongly agree with Jules, VES can only be treated well by about 6-8 Drs nationwide and Dr. Nakaji is one of the best and closest to you. I do remember your post mentioning cost; Dr Nakaji is part of Banner Health System, here is the link to their financial aid page, Billing Information: Financial Assistance | Banner Health. He does require a referrel and imaging can be uploaded by another Dr via Powershare, or you can mail it to him directly. He does only do in person consultation though

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