intralabyrinthine schwannoma

[Martha G]

Hi,

I have been diagnosed with an intralabyrinthine schwannoma. I'm trying to find anyone who has had this type of acoustic neuroma that can share his/her experience with me.

In August of 2010 after hiking up to almost 11K feet I got a ringing in my ear. I thought it was the altitude or something that would quickly go away. When I went to the ear specialist I was told it was most likely nothing, stop caffeine and alcohol and see how that goes. Then after a couple of months of this constant ringing I had the first MRI. The doc thought it was a virus, wait some more, take diuretics, still no caffeine, chocolate or alcohol, no luck. 6 months later second MRI showed growth so they confirmed this was a shawannoma. As of my third MRI last November, it is in the basal turn of the right cochlea and measures 7.6 mm transverse and 1.3mm anterior-posterior. I have no functional hearing at all and the cacophony of sounds has become so loud it keeps me up at night and drives me crazy during the day.

As of today I'm waiting for the results of my 4th MRI. I should have that tomorrow. I'd love to have a list of questions to ask my doc when I see her tomorrow if you have any suggestions!

I'm told this is not a common place to have an acoustic neuroma so if anyone has had any experience with this please respond. I am  lost as to how to proceed or who to go with for treatment options. I have contacted Dr. Slattery at the House Clinic in LA. I am willing to go anywhere for help!

[CHD63]

Hi Martha .....

Welcome to this forum.  Sorry you are apparently the rare of the rare ..... not a fun place to be.  You are definitely on the right track to contact House Research Institute for this unusual condition.  They are experts in unusual ear problems so Dr. Slattery should be back in contact with you soon.

Many thoughts and prayers and let us know what he says.

Clarice

[Martha G]

Thank you Clarice. I'm keeping my fingers crossed that there is someone out there that has had the same type of tumor as I!

Martha

[LizAN]

Hi, Martha,

Sorry you had to join us, but glad you found your way here.  My tumor is right next to the cochlea, and extends all the way through the IAC.  It has just started to protrude into the CPA.

If it's in the basal turn of the cochlea - then it is actually inside of the cochlea itself, and not just in that general area?

I will be interested to hear what Dr. Slattery has to say.  I'm having surgery with him on the 3rd of July.

Liz

[Martha G]

Hi Liz,
Thank you for your response. Yes for the most part mine is in the cochlea. I'm still in the watch and wait category. It is so frustrating to deal with the lack of hearing, noise and balance issues. I am glad I found this site.

How did you pick the House Clinic? Are you in the LA area? I have not heard from Dr. Slattery yet but hope to in the next couple of weeks.

I wish you well with your surgery and recovery next month.

Best,
Martha

[LizAN]

Thanks, Martha,

My ENT in Austin, TX recommended that I go to House.  It's a long way from home, but I'm comfortable with my decision to go there.

It took a while for me to hear from Dr. Slattery when I first sent my MRI to House.  On subsequent MRIs, I've heard from him within days.

Do have any hearing in the affected ear?  I went from a mild hearing loss with soft tinnitus, to moderate to severe hearing loss, no speech discrimination, poor balance, and very loud tinnitus in a little over a year's time.  When I started to also have facial nerve symptoms, I knew it was time to get treatment.

Good luck with your decision making process.  It can be a tough decision to make.

Liz

[Chances3]

Hi Martha,

My heart goes out to you.  I suffer from your symptoms, but it seems your tinnitus is worse than mine.  My AN was on the eighth cranial nerve, very deep inside near the brain stem.  I had the middle fossa surgery to remove it. 

My wife bought me a little electronic device that gives off sounds.  You can choose all different types of sounds like the rain forest, the beach, birds tweeting etc.  It has volume settings and a timer.  I don't think it cost much, 35 bucks or something, but it may act as a distraction so you can sleep at night.  Staying away from alcohol, caffeine, sulphides, nitrates, MSG, and processed meats like cold cuts can help, but I have found quality sleep to be the best help for tinnitus.  It doesn't cure it, but it can soften it up a little. You have a long road ahead of you, so stay strong.  You are among friends here, and post anytime, there are many wonderful and understanding people who are willing to just listen.

God Bless.