New(est) member of the club!

[BudD61520]

Hi all

I'm a newly diagnosed AM patient (8/10/15) and have been researching ever since! I live in Acworth, GA and have an appointment scheduled with Dr. Mattox at the end of September. I also am arranging consults with Dr. Mark McLaughlin at Wellstar Kennestone (for CyberrKnife) and have a relative (dumb luck) who is an Otolaryngologist at Vanderbilt and he recommended i see Dr. David Haynes.

My AN is .9x.6x.6 mm and i have tinnitus and 65% hearing in my left ear. I actually have tinnitus in both ears. According to the ENT, it's contained in the auditory canal right now. Although it's hard to tell what symptoms may be related, i have hearing loss in that ear, a 'fullness' in it, and minor balance issues which i all thought were age related until diagnosis (I'm 54). I should also note that i've had these symptoms since at least January of 2013 and don't think they've changed a whole lot since then. I'm a musician - a 'never was", who still plays trumpet and drums at church on Sundays. Music has been a very big part of my life. All kinds of questions, but based on the posts i've read on this forum, it looks like i'm in good hands!

Especially interested in experience of:
- musicians and how hearing loss (partial or total) has affected them. My condition to date mainly affects my ability to follow conversations in a crowd, determine location of sounds, or hear the crickets/frogs/cicadas out of the affected ear. Seems like some guitar riffs are in that bandwidth too.
- others who can offer recommendations on treatment options, particularly those with similarly sized ANs
- those who traveled for treatment and the pros/cons of that
- those with recent experience with middle-fossa surgeries
- folks who have experience with the physicians I've  mentioned above, or others in the metro Atlanta and surrounding area i should check out.
- those who could provide me a list of questions i ought to be asking but am not ;-)

Thanks in advance for your responses.

[CHD63]

Hi BudD61520 and welcome to this forum .....

As you know your AN is very small, but apparently quite bothersome symptomatically.  This is not unusual ..... just so you know.

I am a musician (organist/pianist, singer) and there have been adjustments I have had to make when singing, but not much when playing.

Many of us traveled great distances to seek treatment from the best possible places.  Personally, I flew from the East Coast to the West Coast for my second AN surgery and had a great outcome.  I had no difficulty with flying post-op.

If you have not already done so, you might want to print out the anausa.org questions for your physician.  See: https://www.anausa.org/pretreatment/questions-for-your-physician  Also, send for the free informational packet from the ANA for very valuable information.

Thoughts and prayers.

Clarice

[BudD61520]

Thanks for the quick response. i had glanced at that link previously but will take a closer look in preparation for my appointments.

[ANnIdaho]

Hi Bud61520,

My AN is similar size and location as yours is.  I am lucky to have retained excellent hearing (for now).  As I'm sure you are reading every AN and every AN patient's decision is unique.  Many have success with treating with Radiosurgery, many with just waiting and watching, and many like me eventually decide they just want the little bugger out. Lucky for you, having a small AN gives you many more choices...though sometimes that can be hard too as making a decision was difficult for me.  I have decided to have middle fossa surgery in Los Angeles, with Dr. Friedman and Dr. Gianotta, at Keck/USC Sept 22nd. I consulted with many different doctors both radiosurgeons and nuerosurgeons alike.  I would recommend taking advantage of sending your MRI scans to house and to Dr. Friedman, they both do free consults over the phone....which is very nice for those that live across the country.  I will be traveling from Boise, much closer than GA but I know many have traveled across country to LA.  But there are also, excellent doctors on the East coast.  What is fortunate is that you have time, time to research, time to reach out to others, and eventually time to come to your own decision that sits right with you.

Best of luck in your journey.  If you have any other questions feel free to PM me.

Bonnie

[BudD61520]

Thanks for the reply Bonnie. I'll actually be on the left coast while you're having your surgery, but in SFO visiting my son. I had planned to seek opinions from Dr. Friedman as well as Dr. Chang at Stanford and maybe even visit him while i'm out there. I spoke to a AN patient who had surgery there 8 years ago and raves about them. Funny story. i was on my son's sailboat with her a year ago and didn't even know she'd had an AN.

Small world!

[ANnIdaho]

Mmm...so if the west coast is the left coast, does that mean the East is the "Right" coast? That could cause some debating. 
What a small world indeed! - Bonnie

[BudD61520]

Unless you're facing south, correct.

[michellef08]

Hi BudD61520,
I had Middle Fossa at House with Dr.Schwartz and Dr. Friedman (when he was still there) 2.5 years ago, and could not recommend it enough! I live in DC so flew across the countries with no issues whatsoever! We went out early and visited Disney and San Diego, and then stayed in Newport Beach between my surgery and my post-op appointment, so it was kind of a fun trip! Once I learned about House and how experienced the surgeons are, I knew there was no one else I would trust my brain with. I had 90% hearing in my ear before my surgery, and I still have 90% today! My tumor ended up being 1.4 cm.

Let me know if you have other questions, I am happy to share my story!
~Michelle

[BudD61520]

Hi all,

I had a good consult with Dr. McLaughlin yesterday. He recommended watch and wait given it's small and not risky right now. He said CyberKnife treatment would only provide a 50/50 chance of saving what hearing I've got in that ear. He also stated that if i were to have surgery i would lose all hearing in my ear. I don't think that's correct as my tumor is currently small, which I thought would qualify me for options other than a Translab.

I have  more consults to go, and a couple with surgeons so i didn't ask him to clarify his statement about surgery.

Does the 50/50 shot at preservation using CyberKnife sound accurate?

Also, i've got really good insurance right now and concerned that if I watch and wait, i may wind up having to do something when my coverage is not nearly as good. Did any of you factor this into your decision?

[Doc]

Hey Buddy,

I got your IM. Sorry, I took the blog down about two years ago. I also live in Acworth, so like I said in the return message, if you’d like, we can get together for coffee and exchange notes some day.

Take Care,

Doc

[BudD61520]

Hey Doc,

Got your PM. i've got company this week and heading to SFO the following to meet with Dr. Chang and (hopefully) Dr. Jackler at Stanford while there. Will ping you when i get back to get together. Looks like we are 10 minutes apart!