Just diagnosed-small AN but big symptoms

[PMORRIS]

I posted my story in the Pre-Treatment section yesterday, but I've read a lot of people's posts and experiences and have learned sooooo much in the past 24 hours.  I have a small AN measuring 2.5mm x 4.5mm on the lateral aspect of the right internal auditory canal. I say small because I've seen so many posts about ANs measured in cms instead of mms. My diagnosis came about as the result of a sudden onslaught of symptoms.  Literally fine one day to total deafness in my right ear the next and severe vertigo that lasted several days. Vertigo is gone but now I have bouts of double vision that is very annoying. Symptoms led to MRI which led to diagnosis.  Question: Maybe I'm in denial, but I can't believe my hearing is gone for good?  Have any of you experienced unilateral total deafness then regained hearing with treatment?  Also, have any of you experienced double vision?  I am waiting now to be contacted by Vanderbilt, as my ENT has referred me there, but I am more than willing to get other opinions.  I would appreciate any input!

[john1455]

With all the extensive research I have done online after being diagnosed with AN in 2/2013, I have found that once hearing is lost, it will NOT likely return even after treatment, so in my opinion, it would be best to get treated as soon as possible IF your AN increases in size. That means monitoring your AN with MRIs every 6 months for a year or two and then yearly. This is known as Watch and Wait. I just completed CyberKnife treatment at Stanford Medical Center with Drs Chang and Gibbs so I won't know if my hearing will improve, remain the same, or get worse for another year or so. I have no vision issues, just hearing and balance. The impression I have gotten from the majority of patients on this forum who have been treated is their symptoms either remained the same or have gotten slightly worse. That is how I finally arrived at how I wanted my AN treated - by reading about what others went through after their treatment and deciding whether I wanted to go through that also. I didn't so I chose Cyberknife because quality of life was the most important thing to me at 65 years of age. Good luck on your journey.

[arizonajack]

Maybe I'm in denial, but I can't believe my hearing is gone for good? 

Believe it.

I had a similar experience with a small AN (3mm x 4mm x 9mm when diagnosed) and I'm going on two years completely deaf in the AN ear.

Every now and then I put a phone to my AN ear just in case. But, alas, nothing.

[Crazycat]

Double vision? Yes. I had it several years before my surgeries and have had it ever since. It is constant and it makes me tired from straining. For several months after surgery it was full-blown; so much so that I had to wear an eye patch. It has eased considerably since then but I still have it. The left-side of my face is still slightly numb as if from Novocaine that never completely wore off after a dental procedure; and the deafness? Well, that goes without saying, along with shrill tinnitus. My surgeries were in August and September '05.

Another lasting effect I have is loss of left-hand dexterity from brain compression because my tumor was so big: 5cm x 5cm or 50 mm, the size of a golf ball. Accompanying this was added compression from fluid build-up. I'm left-handed. My penmanship has been trashed along with my ability to draw. I was a decent illustrator. I don't draw anymore and writing is an arduous strain (I used to have beautiful, flowing penmanship) so now I can only print. I was also a very good guitar player (my whole life) That's gone as well. It's like getting ripped-off in a big way. Also, my nerves are completely shot and the tinnitus is often pulsatile (like right now).

Needless to say, you can get used to all this.

A musician getting socked with an Acoustic Neuroma tumor.....what a concept!!

[PMORRIS]

Yes, Crazycat, music is a big part of my life too.  I'm so sorry for all the collateral damage you had at the hand of that AN.

[Ned]

I am a Nashville native and went through the treatment options with the local surgeons and  radiologists. My ENT said surgery was the only good option. I interviewed 4 surgeons and 4 radiologist in town, as well as consults at House, and University of Pitt.
At the time, every surgeon recommended surgery and made light of radiation treatment, and the radiologist seemed more open to all options.  I ended up choosing FSR at Centennial, 11 years later my tumor has shrunk 40%. I will be happy to talk with you.

[PaulW]

I have had 4 major bouts of hearing loss, my hearing never went completely, but at its worst, I tested at -90db hearing loss at 2KHz
Thats pretty deaf. Each time the hearing came back over a number of weeks or months. Sometimes with Steroid treatment other times without.
Currently my hearing is still OK thats nearly 4 years after I first received symptoms.
At my last hearing test 6 months ago my bad ear was sitting at -25db which is at the lower end of normal.

I have also got someone in our support group who had a 2.7cm tumour lost nearly all of their hearing. She had Gamma Knife, and 12 months later it returned. 12 months after that however and its gone again.

Sometimes hearing does come back.

[Crazycat]

Thanks P,

   That's the way it's worked out: I'm very healthy is some ways but compromised in others. It's like from the neck down I'm good to go, but from the neck up I'm a complete wreck.

The vertigo you speak of is interesting. I had a severe attack that lasted over a week back in 1983 which was caused by an inner ear infection. What's interesting is that I had quick vertigo attacks that would momentarily knock me off my feet from the time I was 11-years-old. They would come on suddenly and completely out-of-the blue. My head would begin to hum and buzz, my vision would turn green and blue and my equilibrium would fail. As I got older, I began to feel attacks coming on seconds before they'd overwhelm me. I learned that if I locked my brow and focused my my eyes I could stop them from occurring. It seemed to somehow be connected with my vision. Who knows? I think they were signs of what was to come:
an Acoustic Neuroma.