A Cautionary Tale of Acoustic Neuroma

[Lorbis]

My journey with AN began in February 2011 when I awoke to a non-hearing right ear and a loud, screaming case of tinnitus.  I visited my ENT after a few days where I was given a hearing test and an exam, and told I probably had Meniere's disease.  I was instructed to monitor the situation and to come back if it got worse or flared up.  There was a definite improvement in my hearing about a day later, so I paid no attention to my situation, until it flared up again two months later in April.

I went back to the doctor, who still felt it was Meniere's, but just to be safe, he ordered an MRI.  Obviously, it wasn't Meniere's, but a small Acoustic Neuroma. 

My next two stops were to the AN doctors that my local ENT recommended.  First, in June of 2011,was to a doctor and his partner in New York City.  I liked the doctor very much-his expertise, confidence, and knowledge put me at ease.  Since the hearing test in February indicated significant hearing loss, the doctor recommended translab surgery, since I didn't have enough hearing worth saving.

However, I still had another doctor to see, this one in Philadelphia-equally respected, qualified, and highly recommended.  So, a few weeks later, I went to Philly to see doctor number 2.  The big difference was that I was given another hearing test before I saw this doctor, unlike New York, where they used the orginial hearing test from February.  The hearing test indicated that a lot of my hearing was restored.  I was having fluctuations in my hearing throughout the diagnosis process.  Philadelphia doctor's recommended treatment was much different:  watch and wait, radiation, or retrosigmoid surgery, since the hearing test he gave me indicated I had much more hearing than previously thought.

Well, I chose to watch and wait, but that ended this past July when I successfully underwent gamma knife radiation, after much research and thought.

I am so happy so far with how my gamma knife surgery went.  It was performed at University of Pennsylvania by the doctor who gave me that second hearing test. 

I can still hear from the right ear, and although I realize that it could change due to the gamma knife, I know for certain that if I had undergone translab surgery as doctor New York recommended, I would be SSD. 

So be very careful in selecting your doctor and keep monitoring your hearing as you go along, as it can fluctuate.

[Gloria Nailor]

I pray that your hearing stays intact.  It is very hard being deaf in one ear.  My heart goes out to those who are totally deaf.  I have a slight fear that as I age I will lose hearing in my other ear and be completely deaf, that would be devastating. It's amazing what you take for granted, like your sight and your hearing. Good luck and be well.

[Derek]

I have had SSD since my AN was diagnosed almost 12 years ago and have found that over the ensuing years, just as with early balance issues, the brain tends to adjust and compensate accordingly. It really is a very minor issue to me now and personally I would rather accept SSD over any forms of medical intervention which are not without other risks and which carry no guarantee of long-term hearing retention. But I also realise that my preference may not be acceptable to others.

[Petrone]

Derek, I tend to agree with you. I'm SSD since shortly after my GK this past April and I've learned to live with it. As many others on this forum have said before, one's attitude is often the biggest part of how to cope with having AN (or just about anything else for that matter). If you believe being SSD is the worst thing in the world, it will be.  On the other hand, if you believe it's not that big of a deal, it won't be. 

[Derek]

Hi Petrone...

Many thanks for the logic and wisdom of your response. Attitude is indeed the all important attribute in dealing with these 'little buggers' particularly so when opting for the 'watch & wait' conservative management treatment mode where thorough initial research followed by an abundance of self belief together with regular MRI scans and acting on the advice of a consultant in whom you have complete trust are all essential keys in dealing with this nuisance.

Regards

Derek