Diagnosed with acoustic neuroma

[ash]

I am 48 years old and was diagnosed two months ago with a 2.4mm acoustic neuroma in my right ear. My real problem is that I have been deaf since birth in my left ear. I saw two recommended doctors in philly, one said to nuke it if there is any growth with my upcoming MRI in August. The other gave me the options. Operation-remove but hearing and facial nerve could be cut. Nuke it but if it fails to stop growing it is much harder to than remove and few get cancer. I have been in touch with someone that has a large one and is waithing to have his MRI. He has found that 3 doctors had acoustic neuromas and they all chose to nuke. He has decided if he has any procedure it will be by Dr. Chung at Stanford(Calif.). I am leaning to nuke but feel I should go to the best doctor in this field in the US(because of my situation)even if I only gain a slight advantage. Out of all the information I have outside of philly, Dr. Chung is the only name recommended. Does anyone have any other recommendations. Any information is appreciated. Thanks   

[CHD63]

Welcome to this forum of caring, supportive friends.  I am assuming your AN is 2.4 cm, not mm.  Either way, you are in range for the option of radiation (cyberknife or gammaknife).

Stanford is well known for its experience and treatment of ANs with radiation.  Closer to you ..... Douglas Kondziolka, MD at University of Pittsburgh Medical Center is well known and experienced.  Also, Wake Forest University Baptist Medical Center in Winston-Salem, NC has an excellent reputation for gammaknife treatment of ANs.  There are several others in the country, as well.

Best wishes and let us know how you are doing.

Clarice

[Cheryl R]

Hello and is your AN 2.4mm which is super small or is it 2.4 cm which is medium size?       You are similar to us NF2 pts which have ANs in both ears for your situitation.         There are varying opinions on what is best.         Some drs are for radiation and others aren't.       Surgery can be done with possible good outcome of keeping the hearing if it is just the 2.4mm  if it is the 2.4 cm then less likely.    House ear Institute out in LA has a fairly good success rate.           The acoustic nerve is not always cut and some places can do a cochlear implant also.      I was a rare case where I had surgery on my only good side for a 1.4 cm and the hearing was improved as was near deaf.  I was going to be getting a CI in time but did not need it.             The actual tumor location is also part of it all.              I go to the Univ of Iowa for my care.                  Makes for a much harder choice on what is best to do.    No treatment has a guarantee until it happens.    Some people have done well past radiation and some do have loss of hearing.              Good luck in how it goes for you!            Cheryl R

[Lizard]

Ashman,
Welcome to the forum, your treatment options are as you mentioned W&W, GK/CK/FSR or surgery.  Hopefully you can clarify wether your AN is 2.4 CM or MM as this makes a huge difference when choosing your treatment route.  Since you are deaf in one ear already it is very scary to have your hearing jeopardized in your other ear, so you will want to try and preserve it at all costs. 

What are your symptoms like?  Are they manageable?  This decision is so tough and even with radiation there are many different types, they all have their pros and cons, but one will be right for you.  Make sure you get many opinions as its crucial you try to preserve hearing. 

What about fractionated stereostatic radiation?  Its many (around 30) small doses of radiation over a period of several weeks, and I think that this small dose might be a better option, not a Dr here just trying to put my 2 cents in. 

Also, I had suboccipital surgery and have about 50 % of my hearing in my AN side, but the Dr's can't really tell until they get in there whether its wrapped around the nerve.  Another option could be to have the surgery, leave some of the tumor on the nerve and then do radiation to "kill" the rest of it.  Again there are many options and there is one that is right for you.
Good luck with your decision and we will be here if you have more questions or concerns.
Take care,
Liz

[Jim Scott]

ashman0221 ~

Hello and welcome, although I'm sorry you've been diagnosed with an acoustic neuroma.  Your situation is somewhat unique because of having your hearing ear on the same side as the AN, making a treatment decision crucial.  Clarice, Cheryl and Liz have already offered good advice and frankly, I can't add much to it.  I'll just extend my welcome and hope that you can find a workable solution to finding the best treatment for your AN, one that has the best possible chance of retaining the hearing you now have.  Please let us know how this is resolved.  Thanks.

Jim

[leapyrtwins]

Ash -

the doctor @ Stanford, is Dr. CHANG, not Dr. Chung, and he has an excellent reputation.

You mention being born deaf in one ear.  Have you ever looked into a BAHA?  They are fantastic and work wonders.

If you want more information about BAHAs, please don't hesitate to PM or email me.

Best,

Jan