What a week I've had. Thanks to Laura and some independent research I was able to locate an expert MVD neurosurgeon - Dr Michael Horowitz in Pittsburg, PA. I had an MRI of the brain done on Tuesday - which came back normal according to the radiologist. I sent the MRI and CT of neck to Dr Horowitz overnight. His nurse informed me today that Dr Horowitz saw large blood vessel laying on the nerves on the same MRI!
I've got to do some tests here - EKG, Chest X-ray, blood work, etc - assuming all that goes well I'll have surgery on April 1st. I'm glad to finally have full diagnosis from Horowitz and a surgery date. It will be MVD of the 5th, IX, and Xth cranial nerves and sectioning of the nervus intermedius.
Eddie, good news! And I feel your surgery anxiety - I am 3 weeks post-surgery, got my date for surgery back in December so literally was preparing for it for 3 months and the stress of that alone was horrendous. If you've any questions or anything PM me :)
Thank you - getting pre op tests done today
Will PM you later today - definitely anxious ! >
granadam said:
Eddie, good news! And I feel your surgery anxiety - I am 3 weeks post-surgery, got my date for surgery back in December so literally was preparing for it for 3 months and the stress of that alone was horrendous. If you’ve any questions or anything PM me
Was it just a normal MRI? I had a neurologist and neurosurgeon look at mine and they found nothing :-( They don't know much about GPN so I'm hoping they overlooked it.
Did you send your stuff to this doctor and he diagnosed you before seeing you?
The Emory radiologist reported normal. This surgeon's office called two days after I overnighted the MRI and said they ID'd a large vessel that appears to be lying on the nerves. They offered me the surgery over the phone. So, I guess they are confident although they hedged it a bit - maybe they have to.
Certain MRA/ MRIs show the vessels better. - Fiesta MRIs for example show very thin slices.
I'm in such bad shape and have so many symptoms going on - including Burning Mouth Syndrome on both sides - I can't wait to get it over with and am hoping and praying it is successful.
Was it just a normal MRI? I had a neurologist and neurosurgeon look at mine and they found nothing :-( They don't know much about GPN so I'm hoping they overlooked it.
Did you send your stuff to this doctor and he diagnosed you before seeing you?
These Pittsburgh surgeons are supposed to be some of the best for this type of condition/surgery. I don't know how I'll do yet. Horowitz is my guy - he's at PA Brain and Spine and was with UPMC for a long time. Two links:
Was it just a normal MRI? I had a neurologist and neurosurgeon look at mine and they found nothing :-( They don't know much about GPN so I'm hoping they overlooked it.
Did you send your stuff to this doctor and he diagnosed you before seeing you?
