Neuro surgeons

General
1

I'm starting to wonder if I am looking for help in the wrong direction. I emailed a few docs in my home state of MI who work with Chairi Malformation. They are neuro surgeons doing delicate surgery on a much rarer disorder than Eagles. I'm waiting to get some emails back to see if they treat Eagles and are familiar. Since very few ENTs are familiar, maybe I need to look elsewhere? I still have an appointment with DR Borrowdale in Chicago (cost me $550 for plane ticket) and I will see how I feel about him. If not, I may just need to look for chairi malformation docs. (specialists)

Any thoughts?

2

I think neuro surgeons are worth looking into. I’m looking into it that area also. Good luck in Chicago!

3

I've also thought about neurosurgeons. It seems like operating on that area of the body is outside the scope of anything within ENT practice. It's amazing to me that ENTs even do it.

If you do find anyone, I am sure you'll update us!

4

I just saw a neuro surgeon. He is a vascular neurologist/interventional radiologist. I’m having a 3 D MRA tomorrow and if styloid is elongated he will send me to an ENT that does styloidectomies. He usually deals with patients who have had strokes or dissections caused by Eagles.

5

Dr. Borrowdale at Loyola? I had an appt with him. Friend me if you would like to talk…

6

JKL, I friended you so give me a message on Borrowdale.

7

sounds like neuro surgeons believe in vascular ES!

April E said:

I just saw a neuro surgeon. He is a vascular neurologist/interventional radiologist. I'm having a 3 D MRA tomorrow and if styloid is elongated he will send me to an ENT that does styloidectomies. He usually deals with patients who have had strokes or dissections caused by Eagles.
8

I sent you a message Ivy!

9

I also have Chiari. The neurosurgeons will not do the styloidectomy. It is either an ENT or Skull Base ENT you want.

It was 2 of my neurosurgeons who got me diagnose with Eagles due to Intracranial Hypertension and jugular compression from the styloid.

If you are willing to travel, there are good Chiari NS here on the East Coast, but the ones I know (who treated me) specialize in my other disorder- Ehlers Danlos Syndrome. That's not to say they do not treat regular old Chiari patients- they do.

10

ES totally involves the throat area & therefore it is an ENT who specializes in throat surgery who is the most qualified to do the ES surgery. (ENT's do throat surgery both in the throat & through the neck.)

minnesota said:

I've also thought about neurosurgeons. It seems like operating on that area of the body is outside the scope of anything within ENT practice. It's amazing to me that ENTs even do it.

If you do find anyone, I am sure you'll update us!