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[riggsflute]

Hi.  I was diagnosed with 12mm AN in April. I've been suffering with tinnitis for almost a year and balance issues for about 2 years, as well as extreme fatigue (which I'm not sure if it's related).  I am a musician (flutist & vocalist) so I'm nervous about both hearing loss and facial nerve issues.  I am a 40 year old SAH mom of 3 elementary school age children.  I have had one consult with Dr McKennan at Sac ENT, who recommends trans-lab surgery for me (which I don't like because of no chance for hearing).  Currently waiting for insurance to approve me to go out of network for 2nd opinion, hopefully at one of the big schools in San Francisco.  I feel overwhelmed trying to research tx, doctors, ins, etc.  Frustrated that the dizziness and ringing seem worse.   Like to figure this out and move on. 

[arizonajack]

The Barrow Neurological Institute in Phoenix has a Second Opinion Program that's free.

Check it out:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/2nd_Opinion_Program/index.htm

Appears that your doctor can just send your MRI and records to Barrow for evaluation.

I'm also newly diagnosed with a small AN with similar symptoms of tinnitus and balance issues. Also have complete loss of hearing on that side with only a 3mm x 4mm x 9mm AN. I'm on watch and wait until my next MRI in October but I think I would opt for the radiation therapy for myself instead of surgery.

Unfortunately, if you are already experiencing hearing loss, I'm afraid that the damage to the vestibular nerve is not reversible even if the AN is arrested by radiation or removed by surgery.

Keep reading everything you can about ANs. There are several booklets available on the ANA website for ANA members and there is a wealth of information on the internet.

[CHD63]

Hi riggsflute and welcome to this forum .....

There are several well-known AN treatment places in the country who will do free consultations if you send a copy of your MRI CD and most recent audiogram to them.

At 12mm (or 1.2 cm), you should have all three options open to you ..... wait and watch, radiation, or surgery.

I am curious as to why the one consult you have had was recommending translab unless you have already lost your hearing.  Try sending your materials to:  http://www.houseearclinic.com/consultation/acousticneuroma  for a consultation.  House does mid fossa approach very successfully in saving hearing in some cases, if you still have good hearing.  Much depends upon the exact location of your tumor.

Many thoughts and prayers.

Clarice

[riggsflute]

Thanks for the input.  As to why the trans-lab, I had the same question, so I'm hoping for 2nd opinion to feel differently.  I only have some hearing loss at this point, definately not severe enough to be ready to wish it away. 

[Kathleen_Mc]

Hi
I was a flutist pre AN, not professional or anything, played in the community concert band and enjoyed it. I am unable to play due to facial issue's, despite my repairs, just can't get the right pitch going (can't shape my lips right)......maybe if I was really focused on needing to I would find a way!
Take care, Kathleen

[lrobie]

Hi and welcome to the forum.  I believe that some physicians will recommend the type of surgery that they are more skilled at and could be why yours recommended translab.  I believe middle fossa has the highest percentage of hearing preservation.  However, there may not be a lot of surgeons out there that perform that type of surgery.  With that said, I would agree with Clarice to send your information to House Ear Clinic. 

Lisa

[jaylogs]

Hello and welcome to our little club! Sorry you had to be here, but you'll be glad you did! You'll find that unless the situation warrants it, each physician will recommend what he/she feels most comfortable doing.  I had three consults, and two were all for doing trans lab, and one who wanted to do middle fossa.  I eventually chose middle fossa with the hopes of saving some hearing (which it did to some extent), so definitely get more opinions!  As already suggest there are a few places around that do free consults over the phone (House Ear being one of them, I mention this only because that's where I went).  So let us know how it goes, and good luck! (PS: I found this whiole process of deciding what to do the hardest part, and the most overwhelming, so if you do feel overcome with information, that's normal!)
Jay

[tweety]

HI Riggsflute,  You will research and finally make the decision. I am a singer and found it very hard to go back to Music club but my friend encouraged me and supported me thru this recovery time.  I have almost total hearing loss in my right ear and found singing a real challenge but since I have gotten my Cros hearing aids, I am able to find the pitch much better. Your love for the instrument will be your inspiration to work at it and you will again find pleasure in playing.  Tweety

[james e]

Slow down a little. This is not a broken arm that will heal and not ever cause you any more grief. We know you are overwhelmed, but now is the time to make good decisions based on lots of information. Most of us posties have some type of lasting disability from ANs. You will be making decisions that will have an impact on the rest of your life...no need to hurry along and "move on."

Probably your balance issues are contributing to your fatigue. I am still wonky 2 years post-op, and I spend a lot of energy, physically and mentally, balancing, and it wears me out some days. Lots of people here recover their ability to balance, and it is no longer an issue for them.

I am SSD and it is not a big deal to me. I have a BAHA, and the only bad thing about SSD is I cannot determine to source of sounds. I can still sing as badly as I ever could, and SSD would probably not have an impact on your singing.

The good thing about translab surgery, it gives the doctor a more direct approach to the tumor. My doc said it was a better way to save my facial nerve...good for flute playing. I chose to save my face and gave up my ear. I would make the same decision today.

You have lots or time to gather information. Don't try  to "move on" too quickly. I have a great life and so will you!

James

[riggsflute]

Thanks everyone for the encouragement and  advice.  I appreciate hearing the perspectives of people who have gone through this.  I am picking up a couple of CDs of the MRI tomorrow and will be sending them off to see what other opinions I can get.  Julie

[It is what it is]

I'd like to join the others in welcoming you.  My tumor is small but I quickly had increased symptoms. After doing phone and letter consults with major medical centers specializing in this tumor and wanting to preserve hearing if possible, I chose middle fossa surgery at HEI on 8/1.  I wish you peace with whatever decision you reach for yourself. 

Karen

[Crazycat]

riggsflute,

    I am a musician too. Contact me if you'd like to compare notes (no pun intended). I've been through the mill with this stuff.

[wwarr]

Welcome  to this wonderful forum of friends and a great system of support!   Jay is right, one of the hardest parts of your AN  journey is deciding what treatment you want to pursue.  Its such an individual decision.  Take your time in researching what feels right for you.  I am also a musician  vocalist and my decision reflected that.  My first Dr. suggested a translab but it didn't feel right to me.  So I did some research and got a second opinion.  You can call the ANA association and they can send you information.  I think it's so important for you to get options  and opinions from the top specialists so you can makes your decision.  One that is right for you.
I know this is overwhelming but that is normal.  We have all been there and understand.  I would be happy to listen to any questions you might have or if you need to talk to someone. Just message me.  Take care and I'm thinking of you! =)
Wendy