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I was diagnosed 2 months ago and im suppose to have surgery this week

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Replies to "I was diagnosed 2 months ago and im suppose to have surgery this week"

Welcome to Connect @katfred. I’m glad you found us so early in your journey. I’m sure you have many questions. @tracylynnedaley72 @cynaburst @donna3 @rosesareredmylove2016 @jjanes3 have been there, and I’m confident they will help answer your questions from their experience.

Kat, how did you and your care team discover that you had an acoustic neuroma?

I just wrote you a long reply which I lost. Have you been the the Acoustic Neuroma Association website: http://www.ANAUSA.org? They have some great information there.

Wishing you the best with your surgery. Mine was 15 years ago and but for the deafness in my right ear, I barely think about it anymore. I had a very large tumor which was compressing my brainstem, so I had it out on an emergency basis, and also got a VP shunt for hydrocephalus.

Let us know if we can help answer any questions. Where will you have surgery?

hello; Don’t stress out on the surgery, their great surgeons. I had surgery 2 years ago after going to my primary care with an earache. I found out I had a 3-5 centimeter tumor pushing on my brain stem. No headaches, no imbalance, no dizziness.. All went well, After effects are weird, just take it slow…..

2 months ago i went to e.r. because i lost hearing in both ears and i was so dizzy. I was diagnosed with vertigo. Couple weeks went by and then vertigo came back and i was walking into things. Doctors decided to do an mri. And they said i have vestibular schwannoma. Im like what? I never heard of it before. So i was refered to uw hospital in madison.

Hi cynaburst… Your surgery was 15 years ago you said??? How long did it take you to feel somewhat normal after your surgery? My head still feels like its floating, theres days my balance is so off…I feel sometimes like i have an ocean in my head….I still have 2% of the tumor on my brain stem…Did your surgeons get all of yours???

I feel pretty normal most of the time, but there are occasions every year or two where I feel floaty or weird for a few weeks, and then it will go away again. Every time I worry that I am having a regrowth. And yes, they did get my whole tumor.

Hi Cynaburst: I still have that 2% on my brain stem. I just had my yearly MRI, and my ENT said theres a part of the tumor that has grown minutely. I am wondering if that is not effects of the growth I am feeling…
Unfortunately they couldnt get the whole tumor, as it rests on 5 nerves on my brain stem that control my left side facial nerves, eye, …So I get a MRI every year now.

Im sorry im just now responding to this. I found out i had an acustic neuroma after years of complaining my head hurt and ear always hurting.. i came down with bad vertigo in which i could only crawl on the floor and lost my hearing. I drove to e.r and demanded a m.r.i and after finally convincing the e.r doctor. We had m.r.i done and 2 hours later he came to my room and said yes, i have a brain tumor. I wasnt shocked because my brain was telling me something was wrong for years

Be sure to check the ANA site for preparing for surgery I made a few accommodations that were really helpful ! Put all your toiletries Up high , shower chair, wedge pillow for bed , walker, cane , put your clothing in upper drawers to reduce bending forward , have support person for first week home can be really challenging .. but it’s a miracle how quickly your unaffected side kicks in !!! Wish you success You will do great !