Hello everyone! So I had my tonsils out when I was 4. I was in a car accident when I was 12 where I hit the windshield.
I’ve had jaw pain, headaches, shoulder pain, right ear pain essentially just pain radiating up and down that whole area, difficulty turning my head at different times, and migraines since I was a child. I’m 37 now and started getting tinnitus and starting a couple months ago trouble swallowing.
I was dx’d with pots also.
I messaged Dr Nakaji and they had me get a cvt but Iits normal? What steps would you take next?
I’ve been to pt for my neck and shoulders multiple times. I’ve been to tmj specialists and multiple mouthguards made that always make it worse. I’ve had multiple injections in my jaw that didn’t help. I currently get nerve blocks I think alongside Botox for migraines.
Any help or advice would be greatly appreciated. I live in the Phoenix area.
“Normal ct venogram of the head.
Mucosal thickening and retention cyst in the right maxillary sinus.
Bilateral opacification of the stylohyoid ligaments extending almost to the hyoid bone. This would correspond with the history of Eagle Syndrome.”
I’d strongly recommend getting another opinion. Nakaji’s office told me everything looked fine as well and it wasn’t.
This was after a second opinion through Stanford noted I needed evaluation for vascular Eagle syndrome. I ultimately had bilateral styloidectomies with Dr. Osborne four weeks ago, and while my venous flow is still adjusting, I genuinely feel like I’m living again not just existing.
After Nakaji said nothing was wrong, I also pursued a second opinion through Barrow. They noted contouring and said venography could be used to rule out Eagle. However, when I asked about nerve pain and skull-base evaluation, they deferred, stating it was outside their expertise.
I’ll also add that I had sinus surgery in 2020 for fluid levels in the maxillary sinus which, in hindsight, fit the larger picture that was being missed.
Just sharing my experience so others don’t rely on a single opinion.
Hi Eaholleran & welcome!
Usually Dr Nakaji, who has done many successful surgeries for vascular ES, wants to see a CT venogram with pressure manometry , which is quite an invasive procedure, before he accepts the patients. If your CTV didn’t show any vascular compression then it would be an unnecessary procedure, there are other doctors who are experienced with ‘classic’ ES. (There’s info as well in the Newbies Guide Section about symptoms so you could see if you have anything that points to vascular ES, I’ll pst a link) ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
As @MGORNEAU says, Dr Osborne in CA is very experienced, and has pretty short waiting times I think, but he doesn’t take insurance so not everyone can have surgery with him. There are a couple of other doctors on our list in AZ, otherwise Dr Samji or Dr Damrose in CA have done lots of successful surgeries too. You can search for any mentions in discussions about doctors using the search function, & here’s a link to the doctors list in case you haven’t seen it: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you can get some treatment soon!
@Eaholleran - I also suggest a second opinion as Dr. Nakaji has turned away some of our members who have symptoms of IJV compression but the venogram w/ manometry didn’t show pressures that he considered high enough. I feel strongly that not only the pressure test but also the symptoms a patient has need to be taken into consideration. Since you have a history of migraines, you may have vascular compression, but it could be of your carotid artery instead of the jugular. Your other symptoms sound more nerve based but are those we see associated with ES.
If you have access to your imaging, you can convert it to 3D using radiantviewer.com (PCs) or Bee Dicom Viewer App (Macs) & post some of your significant pictures here. We’re happy to give our “we’re not doctors” opinions as we sometimes catch things radiologists & doctors miss. If you do post images, please remove/cover any personal information on them.