Just diagnosed

[wsmetana]

Just diagnosed with a .6 by 1.0 cm on the right ear. Tinnitus, high range hearing loss, voice recognition loss and some balance and nausea issues. Was diagnosed by the VA and sent to Dr. Ted Meyer at the Charleston, S.C. VA Hospital (Dr. Meyer is affiliated with the Medical University of South Carolina). Dr. Meyer spent one hour discussing surgery and radiation as treatments. I decided on a 6 Mo. wait and see. I'm not sure why except that I have a trip planned for June and didn't want to screw that up. It seems that I see more maybe's with radiation than with surgery. Dr. Meyer said that I have a 50/50 chance of keeping my hearing with surgery? Is it normal to feel that symptoms accelerate after diagnoses. By the way I just turned 61 yrs old and am otherwise in good health. I'm leaning toward surgery.

[CHD63]

wsmetana .....

Welcome to this forum.  You will find much support here!  Sorry the diagnosis of an AN caused you to find us, but please know you are among new friends who can identify with your feelings and questions.

Your AN is on the small side so you have some time to do your research and decide on treatment.  And, yes, it is normal to feel like your symptoms are increasing since you heard the diagnosis.  It seems like we become even more "in tune" with our bodies when we know something is causing the symptoms.  That being said, any sudden, severe, or completely new symptom you have should be reported to your doctor.

One thing we all can honestly say, be sure you are 100% confident in the medical professionals you decide to have.  Since ANs are so rare, you want physicians who have seen hundreds of them, not just a few in the course of their years in practice.  I know nothing about Dr. Ted Meyer nor the Medical University of SC and they may be great.  I would ask him how many ANs he has seen/treated and the success rate he has had.

If you have not already done so, be sure to send for the ANA materials.  They are very informative and reassuring.

Thoughts and prayers as you begin this walk in the world of having an AN.

Clarice

[leapyrtwins]

Hi, W.  Glad to see you started a topic 

Sunfish is newly diagnosed also and is from your neck of the woods.  Perhaps you'll find this link helpful http://anausa.org/forum/index.php?topic=11889.0

The 50/50 chance of keeping your hearing pretty much depends on the location of the tumor and the surgical approach you choose.  Translab usually results in total hearing loss, retrosigmoid gives you a chance (although in my case I ended up SSD), and mid-fossa generally gives you the best odds.

If you do wind up SSD (single-sided deaf) it's not the end of the world.  Lots of people learn to adapt and those who don't (guilty, here  ) have options.  I opted for a BAHA (bone-anchored hearing aid) but you could also get a TransEar.  I think you said you are retired military.  The VA usually covers the BAHA and the TransEar - but that's a topic for another day.

In my opinion, the two main things in deciding on AN treatment are 1) doing what's best for YOU and 2) finding a qualified, experienced doctor that you are confident in and comfortable with.  From my web search on Dr. Meyer he certainly has some pretty impressive credentials; I think I'd ask him how many AN surgeries he's done. 

Best,

Jan

[sunfish]

Hello!  Very sorry to learn you have an AN, but very excited to learn of another person from my area who's going through the same process.  I live in Moncks Corner, and am a patient at Charleston ENT.  I'm a 50 year old psychologist for the Dept. of Justice.

I have a rt. 14mm x 11mm AN, which is "mildly deforming" the cerebellum-pons area of my brain.  Some hearing loss (although not just from the AN), but recent severe attack of vertigo is what earned me the MRI which lead to the diagnosis. 

I like MUSC.  My family and I have received some great care/surgery there.  But I don't know anything about Dr. Meyer.  Although you can bet I'm going to look him up just as soon as I'm done posting!  I'm scheduled to see Dr. Curtis Worthington (neurosurgeon?) from Roper Hospital on Friday.  He's the only "cyberknife guy" around here.

I'm assuming he'll tell me I need to "do something" about my AN, rather than watch and wait.  I've done tons and tons of online research, and I believe I'll go the cyberknife route if they think that's appropriate in my case.  I'm essentially the sole wage earner for my family, and I need to remain fairly disability-free for about another 7 years until retirement.  So I hope to just knock this nasty little tumor back a few years until that time, and then I'll figure out what to do next.  I do know another woman from my church who's "watched and waited" an AN for over 10 years with little/no growth.  She's 81 years old!

Trouble that we have is where to have these procedures done.  Cyberknife has only been at Roper for 2 years, but Dr. Worthington has some lengthy experience (I think) with Gamma Knife as well.  I've been given the name of Dr. Lambert (also at MUSC?), and it looks like he's got some great credentials as well (maybe more of a surgery guy).  If I'm not satisfied with my meeting with Dr. Worthington, I'm going to look for other opinions, maybe at Emory in Atlanta, and maybe at House Ear Institute in Los Angeles. I will post again on Friday to give you all an update, and maybe PM you too.  Feel free to PM me your contact info if you'd like to compare notes further.  Again, very excited to "meet" you!

[Jim Scott]

Wsmetana ~

I'm sorry you're the recipient of an acoustic neuroma diagnosis but glad you discovered the ANA website and these Discussion Forums.  

Your decision to 'Watch-and-Wait' (observe) for six months is reasonable, considering the small size of your AN.  As others have correctly stated, hearing preservation with the surgical approach is very situational and the 50/50 figure applies to specific situations.  As your research will show, not only size but tumor location is critical in determining whether hearing can be 'saved'.  I have to add that it is almost axiomatic that whatever hearing ability you've 'lost' in the affected ear prior to surgery will not return, no matter how successful the operation.  However, should this present a problem for you, as it often does, Jan's comment that there are very efficacious hearing devices available to help alleviate the consequences of the hearing loss is quite true and worth remembering.  

Your sensation of increasing symptoms is common and nothing to be overly concerned about, unless or until the intensity of the symptoms escalate to the point where they seriously affect your quality of life.  Although notorious for being very slow growing tumors, ANs have been known to grow almost exponentially in some patients (ask Jan about that) and symptoms can be a sign of that kind of growth, so they're worth noting.

I trust you'll continue to research your options and frequent these forums in search of further information from those who've 'been there' and are eager to share their practical knowledge of almost anything associated with an acoustic neuroma.

Jim          

[leapyrtwins]

W -

joeelmo79 just had surgery with Dr. Lambert in March 2009. 

He's a young guy (only 30) and he lives in Hartsville, SC.

His email address is in his profile.  You might want to email him for more info on his experience with Dr. Lambert.  It's also possible that he consulted with Dr. Meyer; you never know.

Jan