Newly Diagnosed question on saving my hearing

[henry]

My name is Henry and I live in CT.
 I started having hearing loss about 2 1/2 years ago in my left ear.  The ENT missed my AN.  Last month I found out I have a small AN that is 7.5mm X 8.8mm X 5.9mm.
I would say my hearing in my left ear is at about 50 to 60% of what it used to be.
Friday i saw Dr Piepmeier at Yale and he told me I will loose the rest of my hearing with Surgery, that my Tumor was small, I wasn't going to die, and if i want i could do nothing and go on with my life and probably not have to deal with this for a long time.  Seemed a bit bored with my AN.  Is this true?  Will i loose my hearing with Surgery?
I did get him to set me up for a consult with the Radiation Oncology Dr. to discuss Gamma Knife.
My question is:  Can i stop my hearing from getting worse?  Can i improve it?  Can I stop the constant ringing in my ear?
I am going to the ANA support group meeting in 2 weeks at NYU to hopefully find out more answers.
Can anyone help with some advise?
Thanks
Henry

[jaylogs]

Hi Henry!! Welcome to our little club...I'm sorry you HAD to find this, but you'll find no better place for information and support.  I know getting this diagnosis can mess with your mind (no pun intended) but I found the more information I got the better I felt about things.  First of all, you mentioned about surgery and losing hearing. There are a couple of surgery options available that can be used to possibly save it.  Trans-lab is the one that will guarantee losing your hearing, middle fossa and retro sigmoid offers small chances of hearing.  It all depends on how bad your hearing is already, the perferred choice of the doctor, and the size of the tumor on whether you can do the other types of surgery.  I am not really familiar with radiology and how that can affect your hearing, but others on here will probably chime in on that point.  I myself had middle fossa done at House Ear Institute in California.  I would suggest if you can mailing a copy of your MRI CD and hearing report to them, they do free consults over the phone. It's one more opinion that you can get. I know Cali is a long ways from you, but they can give you some insight and answer any questions you may have.  The hearing thing? That depends on the person, really.  Mine started diminishing to abotu 50% word recognition, it was slightly better before surgery.  The ringing? That will more than likely stay with you.  Even if you totally lose your hearing, you'll have it.  Do a search on the forum here and you'll see pretty much the same story.  Sorry this is long...Oh, you should contact the ANA here and they can send you an information packet that has very good information, highly recommended! I hope this helps some, keep on asking questions!! Good luck on your research!
Jay

[PaulW]

My AN was a similar size to yours.
I was sufferring from Hearing Loss, mild tinnitus, balance issues.... the list goes on.
I decided on Cyberknife Treatment and 12 months later my hearing is better than it was pre-treatment and is back to within normal range, although not quite as good as my good ear.
Small AN's treated with Cyberknife have a very high hearing preservation level.
Tinnitus is also gone 99% of the time. I feel normal again, and far better than pre diagnosis.

I have been lucky. Things can improve after radiation treatment if luck falls your way.
Here is a paper published by Stanford on Acoustic Neuroma and Cyberknife.

http://cksociety.org/document/docdownload.aspx?docid=884

[CHD63]

Henry .....

Welcome to this forum, with much information and tremendous support as you walk through the maze of treatment options.

Jay has given you good advice to send for the ANA free materials, as well as sending your audiograms and MRIs to House Ear Institute in CA for a free second opinion.

Since your AN is small, you should also send your most recent MRI & audiogram to either Stanford U or UPMC in Pittsburgh for a free opinion on possible CK or GK treatment for your tumor.

Look at your audiogram and see what your speech discrimination score is.  Hearing preservation is more successful the higher that score is, regardless of how much overall hearing you still have.  Also, the precise location of your tumor is a big factor in whether your remaining hearing can be saved.  If it is tucked up right next to the cochlea, there is a much smaller chance of preserving your hearing.

Be sure to ask any specific questions you have and then be sure to let us know what you find out.

Many thoughts and prayers.

Clarice

[moe]

Henry,
Good advice and welcomes from previous posts. Just wanted to say HI and welcome to the forum.
You are at an advantage, yours is small and there is no rush. Just lots of information to process. I would imagine depending on the location,CK or GK would zap the booger, so keep doing your research.
It'll be OK.
Sorry you had to have a nonchalant doctor. He probably is not very informed, because surgery may not even be an option for you......
Maureen

[Jim Scott]

Hi, Henry - and welcome ~

I also live in the Nutmeg State (Litchfield county) and had my AN debulking surgery and follow-up radiation at The Hospital of Saint Raphael in New Haven, back in 2006.  Unfortunately, my radiation oncologist, Doctor Johnathan Haas, has relocated to Long Island but my neurosurgeon, Doctor Issac Goodrich, is still practicing in New Haven at Connecticut Neuroscience  http://www.ct-neurosurg.com/

To answer your questions (with the caveat that I'm not a doctor): as Jay posted, losing your hearing with surgery is not an absolute, but it is likely.  Although two of the three most-popular AN removal surgeries have the possibility of saving some hearing, that cannot be guaranteed.  Much depends on the exact location of the tumor and, as always, the surgeons skill.  I don't know of any 'natural' method to improve your hearing or to rid yourself of the tinnitus but if the AN is irradiated, your hearing loss should be halted, although the possibility exists that it may deteriorate in the future, even with the radiation. These are valid questions to ask the radiation oncologist.  However, my suggestion is that you reconcile yourself to diminished unilateral hearing in the future.  Should your hearing ability stabilize, a possibility, you'll be pleasantly surprised.  If it deteriorates, you'll be prepared.     

The AN support group meeting should be informative.  If you desire any further information regarding my AN experience (which was quite successful), just send me a PM and I'll be happy to respond.   

Jim

[skipg]

Henry,
 Welcome to the unfortunate world of AN and thank you Paul for your post and link. I am WW and find the Stanford article both informative and reassuring as this is the route I will take if it comes to intervention. Henry - keep researching and asking questions. Get a 2nd and 3rd opinion at least. Empower yourself with knowledge and try not to be overwhelmed with all the information available. Step back and take a break if necessary, it will help to digest all that you will learn. This forum and ANA are invaluable resources.
Skip

[leapyrtwins]

Hi, Henry -

your AN is relatively small.  If it were me, I'd find a doc who does the mid-fossa approach and see if it's an option for you.

The mid-fossa approach is the surgical approach that gives the best odds of saving the hearing.

If your hearing can't be saved, look into a BAHA.  They are fabulous.

Best,

Jan

[henry]

First I would like to thank everyone who responded to me.  Second, I would like to thank everyone who attended the NYC support group meeting Saturday July 16, at NYU.  Over 40 people attended and I saw the good, bad, and BAHA side of Acoustic Neuroma's.  The BAHA thing kind of freaked me out a bit, but i guess it is better than only having 1 sided hearing.  I now get some of the jokes about it i have seen on this site.  Good luck to Lauren from the meeting who is having surgery soon, if anyone is in touch with her please keep us posted.  The more i get into this, the more confused i seem to get.  Which choice is best??  Sometimes i wish this was cut and dry
Friday I went for a second opinion with Dr Schwartz in Hartford.  He was GREAT!!!!  Took the time to go over everything with us.  He is not in favor of Gamma Knife because of my age and his experience with complications from the radiation and the trouble it creates if surgery is necessary down the road. 
He is sending me to his ENT for an evaluation, then we will go from there.  Probably a watch and wait approach for at least 6 months.  He doesn't want to operate unless he sees growth.
He feels my small tumor should be easily removed and his preferred method is Suboccipital Craniotomy.
What a Journey!!!
Henry

[leapyrtwins]

On the surface BAHAs are a little freaky; but they work wonders 

And they are very cool technology 

Jan

[ombrerose4]

Hi Henry,

I am glad our support group was able to provide you with many different views. It is so important to look at all the options and determine what is best for you depending upon the size and location of your tumor, your age, your health and what your symptoms are. As you saw at our meeting, everyone is different. I am glad you are getting other professional opinions to help you make your decision.  BTW, after seeing my neurosurgeon last week, he prefers me to not have surgery for my mysterious traumatic neuroma. He is trying me on some medication first to see if that eases the pain. If not he has suggested two different kinds of injections- either lidocaine or ablation therapy. His last resort is surgery, so for now I am happy to go the conservative route. Thanks for your concern.

I hope to see you at other meetings. We will be having a doctor speak to us about Gammaknife surgery.

Lauren