3.5 years post op and things are going down hill

[cookej]

Robert,  Your early path sounded very familiar as I am an early 40, left AN patient having had surgery at Univ of Michigan.  Other than transient facial weakness post op, I've gradually accommodated to the hearing loss, tinnitus and new normal for balance (some pay good money for roller coasters, but I just have to shake my head…)  Overall was very happy with the surgical group, vestibular rehab team and hospital at UM.  I'm also a family physician, so very much try to incorporate my experience into practice and share when appropriate.  Vertigo is difficult to deal with by itself, and having all the other symptoms must be an enormous burden.   

I very much agree that you need a great medical team and vigorous support.  I can't pretend to know what you're going through, but having had evolving symptoms over the past year and a half, I'm hopeful that a cause and cure is found.   

-Jim

[robertwh2]

Thanks Jim, wish I could say things have improved. The last med did not work but they wanted me on it for 3-4 weeks.  So I took my last dose yesterday and started another round of steroids and another med, Imipram HCL. Still waiting to find out what the Dr. is trying to treat with this one, but this he has been serving in the hospital so communication has been difficult. 

Don't think this has anything to do with my AN,  but would be nice to find an answer.  The tremors are getting worse and the balance and fatigue issues continue.  We are running out of tests to run, but seems to me that we are trying one drug after another.  Having a hard time making it through work some days and I still cant drive. In some ways I wish it was AN caused as I would have an explanation. 

Still struggling,  but have hope and faith that it will all work out.

Thanks!

[robertwh2]

Ok, saw Dr. Mikulec at St. Louis University Hospital almost 2 weeks ago. He is the 10th Dr. and is at the 4th hospital that I have seen since Nov. 25, 2013 trying to figure out what is causing the balance issues. He is the 3rd Dr. to state it is tied to my life long migraine struggles. Even though I have not had a typical migraine in 3-5 years.

Basically if you had migraines as a child you are a severe migraine suffer, I fall into this category. Per this latest Dr. Migrainers have difficulty with vestibular trauma, which mine was severed with the AN removal. Since I have already tried a handful of migraine medicine with no results, he told me all I can do it go on a migraine diet, maybe try a few different meds, but there is nothing he can do for me. Working on the migraine diet and am about 2/3rds there, but there is no idea if this is going to help or not.

Not sure what to do next as the last 2 Docs had nothing for me other than it is migraine related and this may be the new normal. Not sure I am ready to accept that, but on the other hand I don't know where to go next. If is very frustrating, but I am doing the best I can to get some exercise and following the docs direction. He said give it 6 months, so time will tell.

[ANGuy]

This is my Dr. from Duke Univ.  I can't say much about his effectiveness since I am newly diagnosed and only saw him once.  I go back for an MRI and another consult on 17 December.  He may be the answer, or he may be just another Dr. who can't give you something concrete to go on.  But, while he "specializes" in about a dozen things, one of his main specialties is balance.  He does leading edge research on balance issues and uses very sophisticated tests to determine if the balance issues are coming from the ear or the brain itself.  It might be worthwhile to contact his office and see what they think.

If you scroll down you will see that he does research specifically regarding vertigo caused by migraines.

http://www.dukemedicine.org/find-doctors-physicians/david-m-kaylie-md-ms