I sent all my images and history to Barrow Neuro Institute in Phoenix and it was eventually read by Michael Lawton MD (published >100 book chapters in cerebrovascular medicine) but is out of the way as I am in Missouri. They recommended diagnostic venogram with manometry to measure the jugular vein pressure. (Definitely do not want unnecessary surgery already had 1 failed craniotomy for atypical trigeminal pain which has opened up a world of problems in my relationship for a “brain surgery that didn’t work” as you can imagine).
I made an appointment at KU and they scheduled me with the wrong doc, even though I requested Dr. Sale for Eagle’s Syndrome, now telling me I need to schedule with Dr. Sale. I do not know a lot about this doctor other than the doctor list saying “mixed results.” My experience with KU hasn’t been great after seeing a neuro-ophthomologist over a year ago for the same problems.
The problem is definitely C1 compression +/- stylohyoid ligament calcification.
What would you do? Have you seen either of these doctors?
Thank you for any input!
Welcome to the board. I’m located in the Kansas City area as well. I saw Dr. Dubinsky at KU Med and was told he didn’t see any reason to treat me. I tried contacting Dr. Sale after coming across his name on this board. I never heard back from him and felt like Dr. Hepworth in Denver would be a better choice for me for both the diagnostic side of things as well as surgery. I’ve been working with them for about 5 months and have surgery scheduled for September.
Dr. Lawton has helped a couple of our members who’ve had IJV compression caused by the IJV being compressed between the styloid & the transverse process of C-1. We have had other members whom he turned away. The fact he asked you for further testing & test results seems to indicate that he is interested in your case, but I can’t guarantee anything. It would be worthwhile getting the testing done that he recommends. Whether you end up seeing him or Dr. Hepworth who is the “go to” doctor on our list for vascular ES patients, having the info from the diagnostic venogram will be helpful.
Unfortunately, Dr. Hepworth was not accepting new patients at the last count. Fortunately, he is supposedly accepting new patients again as of some time later this month. It would be worthwhile calling his office to find out what the current scoop is on that.
I concur with @tokenegret — welcome to the group! You will find loads of support, experiences and information to help you make the best decisions for you!