Newly Diagnosed with AN

[dadin]

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]

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!

[donjehle]

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

[Eebs]

Has anyone else been diagnosed with a Schwannoma just in the Vestibule? Saw my first Nuerotolgist today and did not like what he had to say. My Schwannoma is 3mm and located in the Vestibule only. It is small.  He says that surgery is not a good option. I will lose 100% of my hearing in my left ear and will have balance issues and will not recover full balance if surgery is done. The caveat is that these same issues can occur if I do nothing. I have mild to moderate hearing loss in my left ear and some balance issues now. Not enough to make me stop playing Pickleball. My understanding of the location of this tumor is it is rarer than Acoustic Neruomas so there is much less data on them. My Neurotologist is one who says these are "usually" slow growing...but do they really know with so little data on them? I am trying to find others who have one in the Vestibule only and would like to know their experience and process.  I am a young, active 64 year old Mimi and I'm not going down without a fight.  I'm a gatherer of information and am getting a second opinion. I have terrible pulsatile tinnitus which the Neurotologist doesn't believe is from the tumor...I'm not 100% on board with that.  He has ordered an MRA to look at my vessels in the brain and wants another MRI in 5 months (6 months from the original) Thanks for listening!

[Greece Lover]

Eebs,
I'm not sure what you mean by the vestibule, but if your version is rare, I'm sorry about that.  What I can say, however, is that if  you're talking about a vestibular shwannoma, your balance can come back to close to normal.  Post surgery I ride my bike, play racquetball, etc. etc. with very few issues. 

[Eebs]

Hello Greece Lover, so sorry for the very late reply. I appreciate your kind input.  I had my second opinion recently and was told my tumor is sitting on the cochlear nerve. I am on watch and wait at this time. She wants to wait a year to make sure we don't miss any growth. Of course she said if I have more hearing loss or other symptoms to call immediately. She said they use steroids because sometimes the hearing loss can be recovered since it could be due to inflammation from the tumor. I have horrible pulsatile tinnitus.  I get headaches all the time and they turn into migraines w/aura. I also experience ear pain that comes and goes which doesn't seem to correlate with a tumor this small but I don't know what else to attribute it to. The two docs I have seen so far are like night and day. I prefer #2. Extremely thorough at my appointment and I can message her with questions and not get told to make an appointment (she's a two hour drive). I had other tests that she reviewed and wanted a complete picture of my brain unlike the other doc. At this point I'm not sure what else to do but wait it out.  I do have a 3rd opinion scheduled in January at the Cleveland Clinic.  I am undecided what to do. I am 64 and dislike this waiting game.