Author Topic: Newly Diagnosed with AN  (Read 2524 times)

dadin

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Newly Diagnosed with AN
« on: May 30, 2022, 07:15:50 pm »
Hi everyone,

I’m 36 year old dad. I was recently, last week, diagnosed with Acoustic Neuroma. Not sure on the size grouping. The Tumor is 1.8 x 1.1 x 1.5 cm. I have lived tinnitus for about 9 years followed by a Sound accident in 2012. I got used to this and dont bother me much. Last year in October I noticed a distorted/ muffled hearing in my right year. Followed up with Audiogram and then ent referral from the audiologist. Got the MRi done last week. Yet to see the surgeon and find out how bad it is.

Looks like the tumor is pretty much within the IAC.

Are there any chance of hearing preservation? I would be seeing Dr Blevins at Stanford in 2 days. Im very anxious and in a state of panic to be honest.

Greece Lover

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Re: Newly Diagnosed with AN
« Reply #1 on: May 31, 2022, 07:22:59 am »
Hi Dadin,
Sorry to hear about your diagnosis.  I think my tumor might have been about the same size as yours. I never got 3 dimensional measurements, but they told me 1.2 cm, which is "on the big side of small."  Based on my non-expertise understanding, with a tumor that size, which is within the IAC, the middle fossa surgical approach usually has the best results in hearing preservation.  The problem is that not a lot of places do a lot of middle fossa, so it's something you might ask about. I suspect at Stanford, given what I"ve read on this forum, they'll be very good at that procedure and have good hearing results. That's what happened to me and I was lucky to save hearing. Good luck! My life as a dad is as great as it ever was before diagnosis/surgery.  We fish, play baseball, swim, bike, etc. etc. You can get through this and get on with your life!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: Newly Diagnosed with AN
« Reply #2 on: June 01, 2022, 04:59:49 am »
Hi Dadin,

Thanks for coming to the ANA Forums and making your first post!

Many of us in the forums have experience great anxiety, and yes, even panic when we were first diagnosed with an acoustic neuroma.  The words, 'brain tumor', can be very scary, indeed!  But, as Greece Love said so well, you can live your life very fully.  I work in a hospital, and I see patients every day who are much more limited than I am.  So, while I have become deaf in my AN ear, I have another ear that hears well.  I have struggled with balance issues from my AN and have fallen a few times, but I received therapy and am doing well with my balance now.  Like you, I have tinnitus.  But like you, I have learned to ignore it, for the most part.  Others have experienced terrible headaches or facial issues, but they continue on with their lives.

I guess what I am trying to say is, hang in there!  It will be okay.  Everyone's AN journey is different, but I am inspired by the men and women in these forums who have gone before us, and no matter what their limitations have been, they are able to enjoy their lives.

The worst outcomes are usually from those who have gone to doctors who were not experienced in doing many acoustic neuroma procedures.  As Greece Lover alluded to in his post, you want to make sure that you go to a place that is very experienced in treating acoustic neuromas.  Stanford appears to be one of those places, but I mention this for others who may read your post and want to go to their local neurosurgeon who may be skilled with other brain surgeries, but not in treating acoustic neuromas.  You are dealing with your brain, not a fingernail.  Get the best treatment you can!

Please let us know how it goes with Dr. Blevins.  It's important to share information, good or bad, on these forums so that others may know.

Best wishes on your journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.