Diagnosed Today--LUCKY ME!!

[PMORRIS]

I am a 53 year old female in very good health.  I woke up last Monday, March 10, 2014, feeling as though I had water in my right ear.  By lunchtime, I began to be dizzy and I was able to get in with my primary care doctor that afternoon, thinking I had an ear infection tied to the environmental allergies I constantly fight.  She saw no infection, prescribed me a nasal steroid and motion sickness pills and gave me a shot of phenegran for the by now severe nausea.  After sleeping for 16 hours or so I woke up with no hearing in my right ear and SEVERE vertigo that kept me on my back. I did call my doctor back and she wanted me to come back in on Wednesday.  With the vertigo, it took everything in me to get to that appointment (I had someone to drive me, thank goodness!).  Again, no infection was apparent.  She started me on a normal dose of prednisone plus Valium for the dizziness, but got me in with an ENT the next morning.  Thursday morning, the ENT started out with a hearing test, which showed near perfect hearing in my left ear, but complete deafness in my right.  He diagnosed Sudden Sensorineural Hearing Loss, prescribed a "steroid blast", but gave me little hope of regaining my hearing.  His best guess was a rupture in the cochlear membrane, but wanted to get an MRI in a few days if no hearing returned.  Thursday afternoon, I started experiencing double vision, called the ENT office Friday morning, and they went ahead and ordered the MRI for that afternoon.  This morning, Monday, March 17, 2014, the ENT (himself--you know that doesn't mean good news) called to tell me that it was an acoustic neuroma, 4.5cm.  I asked about regaining my hearing once it was removed and he told me that even if I didn't have total hearing loss already, it would be sacrificed with the surgery, so no hope.  I live in Tennessee, and he said he wanted me to go to Vanderbilt.  I didn't realize how large a tumor that was until I started looking on some websites about surgical options.  Wow..... The GOOD news today was that he called back this afternoon after he and his partner reviewed the MRI tape, because they had not ever seen an AN that big in their practice. Turns out there was a transcription error and it's only 4.5mm. I probably have had a gradual reduction of hearing in that ear over the past few years, but not enough to prompt me to have it checked, plus the heredity factor, I assumed I would have some level of loss in my later years, but certainly not TOTAL. So I've been online all day looking at page after page and was very happy to find this forum.  I am waiting to hear from Vanderbilt about an appointment, so in the meanwhile I'm interested in hearing other people's stories. I think surgery is inevitable and I'm fine with that, and Vanderbilt would seemingly be a good place to go, I think. I just haven't had anyone give me any hope on regaining any hearing.  I've been totally deaf in that ear for a week now.  I will have to be fine if it doesn't happen, but I'm just curious what other experiences have been.  Thanks for reading my saga.  Writing it was sort of therapeutic.

[Jim Scott]

Hi ~

I'm sorry to learn of your AN diagnosis but pleased that you found the ANA website, registered and are posting on our discussion forums. 

Ironically, I was diagnosed with a 4.5 CM acoustic neuroma - and it wasn't an error.  I had very gradually lost hearing in the affected ear (my left) over a six or seven year period that I attributed to age (I was 63 by the time of my diagnosis) and my career as a radio announcer/disc jockey that included wearing headphones for hours at a time and listening to relatively loud music.  I never questioned why only one ear was affected, which, on hindsight, seems foolish.  Too late now.  By early 2006, I was experiencing dizziness, a stabbing pain on the side of my skull, lethargy and my sense of taste had gradually disappeared which caused me lose my appetite and a subsequent 30+ pounds (fortunately, I could spare the weight).  After weeks of procrastination, my worried wife demanded I see our family physician. 

Long story short: after a false start, he ordered an MRI and my large AN was found.  Like you, I knew it was serious when he called me from his cell phone at 7 P.M. to give the me news.  Not only was the AN large but it was pressing against my brain stem and had to be removed, soon.  Like you, I scoured the internet to find what I was dealing with and, like you, found this website, which was a blessing.

I was fortunate to locate a very experienced and well-respected neurosurgeon that, after hearing my concerns over facial nerve damage from AN removal surgery, offered a plan to 'de-bulk' the tumor (peel off layers) and then radiate it to destroy it's ability to regrow. I'll skip the details and cut to the results.  The surgery went perfectly (9 hours).  Upon awakening from the anesthesia my symptoms had disappeared.  I was sitting up by Day 2, walking the halls (with my wife's assistance) by Day 3, eager to go home by Day 4 and discharged on Day 5 following my surgery.   I was very fatigued for a few days after returning home and spent much time in a recliner, reading and watching TV.  Within a week I was out walking (it was June) with my wife at a nearby park.  I resumed driving within a fortnight of my surgery day (with my doctors permission). 

My recovery continued apace and in September of 2006 I underwent 27 FSR treatments to kill the remaining tumor.  They were painless and uneventful.  Subsequent MRI scans indicated tumor necrosis.  My last MRI was in 2008 when my neurosurgeon discharged me.  No symptoms ever reappeared and today, almost eight years later, I'm doing great.  One caveat: although my surgeon employed the Retrosigmoid approach to debulk my tumor, my hearing in the affected ear never returned.  I chose to cope with that impediment but many AN patients use a BAHA unit to help restore some hearing and most are very pleased with them.

I realize this may be more information than you want or need and of course your AN is small and likely a very good candidate for radiation, making surgical approaches unnecessary.  I'm sure others will be responding to your request for information and of course, we're here to inform, advise and generally support AN-diagnosed patients.  Please check here often for replies and try to keep us updated as you deal with this situation.  Thanks.

Jim

[PMORRIS]

Thanks, Jim, for your response.  I am feeling very lucky that mine is small, because that clearly gives me more options.  I am just beginning my research, but have learned an incredible amount of information just reading the posts of the members here.  Will stay in touch.

[jaylogs]

Hi there!! Welcome to our little club! I am sorry you had to find this, but you'll be glad that you did!  It's funny you mentioned the transcription error, because I had the same problem. Only mine was 8mm and the report said 8 CM!! If you read my earliest posts, you'll see a lot of people were worried for me because it seemed huge.  That was when I was prompted to contact the radiologist and review the notes.  Anyways, now that you know you have a small one vs. a gigantic, you now probably know you have options AND time.  Do your research, get the information this website mails out for free.  If you have questions, please don't hesitate to ask.  Take care and good luck!
Jay

[PMORRIS]

Thanks Jay!  Isn't that crazy about the transcription errors? I will read your background when I have a chance.  I have so many questions, it's just a comfort to know I have some new "family" to discuss with! Have a wonderful day!

[ampeep]

Wow, going from a 4.5cm to 4.5mm!  Geez, what a BIG error - should give that ENT a slap!

Welcome to the AN club; good that you have time to decide what to do.  I was in W&W for about 5 month after diagnosis.

Keith

[TexasSprinter]

PMorris--welcome to the club.  I discovered Timmy the Tumor in Sept. 2012, also thinking I had water or wax in the ear.  10x11x17mm.  Had lots to think about as far as options but I chose surgery over radiation.  It took two tries but they got the tumor this last December.  Doing pretty good other than headaches, which should go away eventually.  No facial paralysis thank goodness.  You're have lots of reading and thinking to do--good luck with the decision.  Whichever treatment option you choose will be the right one for you.
Scott

[PMORRIS]

Thanks Scott!  I am happy to have an appointment next week at Vanderbilt to consult with the docs in the Skull Base Center there.  Glad to have a first step on the agenda now!  Glad you're doing well after your surgery!

[KeepSmiling]

So sorry about your acoustic neuroma and the symptoms you've had. Wow, that transcription error must have been very alarming.

Please be careful about taking the heavy dosage of steroids. For my husband, who is 56 and athletic, the month long steroids at high levels caused him to get hives for about 8 months afterwards.

As you forge your path please be aware that many doctors will disagree with other doctors. It was unsettling how we saw so many doctors and none of them came to any agreement. You will get through this.

It is a good idea to read as many medical case studies as possible as you make decisions about treatment. We also spoke directly to patients who had various types of treatments.

You may want to give some consideration to Proton Therapy.  Here is one research study:

http://www.ncbi.nlm.nih.gov/pubmed/12943574

 One of the authors of this study was Dr. Jay Loeffler of Massachusetts General Hospital. He was the doctor that treated my husband and so far, although my husband's treatment ended fairly recently- last August- we are pleased with the outcome.

Take care,