Still no surgery for me

Hello all, I have not posted in many months...I was encouraged when I saw Dr. Forrest in Ohio (finally an ENT, who actually knew about Eagles) he suggested botox shots for the pain, and did explain surgery options... I did research and I felt like that would not be for me. I just endured with all my symptoms, and thought about a 2nd opinion with a Dr. closer to me-Dr. Daniel Lydiatt, head of Head & Neck Surgery Clinic in Omaha NE & his take was I did NOT need surgery and suggested a Neurologist. SO, the crazy cycles again. I went to a new Orthodontist who saw and confirmed Eagles...but did not want to assist in any treatment ( as I have had braces 3x, mouth gards, etc...) I have recently found someone local, Dr. Thomas Kryzer at the Wichita Ear Clinic. He ran all kinds of tests...for my dizziness, vertigo, etc. He had HEARD of Eagles, and gave me insight on all my ear issues ( I am on my 5th ear tube) All the while my general practitioner doc has been patiently listening to my woes and he prescribed Gabapentin...which has really helped me deal with the symptoms. SO...for those that have surgery yet, I am petrified of that option!!! I do YOGA, heat & aroma therapy...I still continue to climb ladders & paint...ceilings really take a toll and I can count on a migrane for a few days I am about to say no to those kind of projects. I am babying my condition as best I can...and limping so many of you. I send hugs and encouragement for those of us to find the RIGHT answers and professionals in the medical community that know & CARE

bettCan I ask why you don’t want surgery? You seem to be jumping through many more hoops than you would be than just getting the surgery. Painting and climbing ladders is what aggravated and flared my symptoms to the point of no return. Today is 3 weeks post surgery for me and I can’t tell you how much better I feel. I’m not even taking Advil anymore. Have you had a simple 3d scan with contrast? Have any of the Drs you have seen been on Emma’s list? My surgeon only removed 2.5 cm on my left side through intra oral (my mouth/throat) & it was painful for a week but gets better daily and certainly better than the tons of pain and symptoms I had, not to mention the fear of stroke. I need it on the other side as well and will definitely opt for it when the time is right.

From what I understand the only cure is surgery and I think you just need the right test and the right ENT.

Art4u: What kind of aromatherapy are you doing? I use a doTerra one Past-tense that works well for me, especially at night to help me sleep. Thanks