Newly diagnosed AN 1.4cm

[donna lee]

I'm a 50 y.o. female recently diagnosed with a 1.4cm acoustic neuroma. I have some high frequency hearing loss in my (L) ear, otherwise no other symptoms. I'm contemplating having another MRI in 6 months, but also anxious about further growth. The surgical complications are worrisome.  I'd like to hear from others who have had surgery, so I can get a better idea of what to expect.

[Sue]

Hi Donna,

Welcome to our little "Club Med".  Sorry you had to join, but here you will find a lot of support and information.  I would say, first of all, that you might not necessarily need to have microsurgery.  It's in your best interest to look at all options open to you and certainly radiosurgery is an option.  A lot of us have found that a surgeon will likely suggest surgery, because that's what he knows.  It's not the only game in town, however.  Do your research and find out what is available in your area regarding qualified, experienced AN surgeons and qualified, experienced radio surgery options such as Gamma Knife and Cyber Knife.  There are a lot of surgical patients on the forum who will be happy to tell of their experience. And there are many of us who have opted for radiosurgery who will be happy to share our story as well.  Also, you will find out that if you decide that surgery is what you want, then you can easily get a second opinion from the House Ear Clinic in Los Angeles. That is one of the top places for AN surgery and many on here have traveled to LA to go to that hospital.  I'm sure others will be chiming in soon. I'm up late so I saw you first! 

You don't "sound" like you are too stressed out about this and that's good, but I imagine you are to some extent and this is a great place where you will meet some very nice people who will help you with this sudden journey you find yourself on.  Welcome to the forum.

What part of the country are you from? 

Sue
Vancouver, USA
 

[Lorenzo]

Hi Donna,

welcome to this family of ours.

I agree with Sue, look at all options. You are well within the radiosurgery scope. Of course in the end you have to choose the route you feel the most comfortable with, you have that choice. Find experts in each treatment option and talk to them. Experience is very important.

We are all here to help and answer your questions if we can. You found a great place!

All the best

Lorenzo

[ixta]

Welcome to the Tumor Freak club WAHOOOO!

[pearchica]

Hey Donna Lee- welcome to the club albiet a crazy one. Not that I know much, I'm still a newbie but I have had 3 consultations now and am going in for a fourth as a final check. All three have recommended surgery of some kind, my fourth one is radiation and surgery.  This industry is very biased towards surgery as it is the known event.  You are in a position to really research this thing and make the best desicion for you. Although research can be emotionally exhausting, I do think it will make you feel better about your final desicion. I have approached this process by trying to find the least invasive procedure, only to be surrounded by surgical opinions. Consequently, I was pretty much resigned to going under the knife, but am making one last attempt to avoid it by seeing a surgeon who also does radiation.  I don't know the position of your tumor, but your size from what little I know sounds like a pretty good candiate for either gamma knife or cyber knife.  hope this helps- take care, Annie

[IAHeel]

My wife just had translab surgery for a 1.9CM AN at House. She had Friedman and Schwartz. You are doing the right thing by checking all the options. We looked very closely at radiosurgery, but opted for microsurgery. Both are reasonble alternatives. House is truly world class. Do not go forward with either option until you are comfortable. Good luck!

Fred

[Sanddollar]

Hello, Donna.

Just a quick note of encouragement.  Today is my 1-year anniversary following translab surgery and I am doing just fine.  I do have total hearing loss on the AN side and a little of the drunken feeling when I move around, especially in the dark, but my life is back to normal otherwise.  I work full-time and do everything that I did before surgery.  I realize that I am very fortunate not to have experienced many of the difficulties others have, but I thought you might want to know that there are positive outcomes from AN treatments.  Whatever your treatment choice, find the best physicians and get all of your questions answered.  Once you make a decision, I believe you will find that it brings you a measure of peace.

All the best to you -

Sanddollar

[Lorenzo]

Making a decision is an incredibly liberating step. I still remember the moment when I decided to go to Stanford was the right way for me. I just so much clamer and stopped the 'manic' phase. It felt peaceful and and a great step forward. From then on, I just wanted to get on with it and go ahead!

Also, I agree with sanddollar, there are of course many many positive outcomes. In fact I bet there area  lot more 'positive' outcomes that 'negative'. The 'positive' ones tend not to be on forums, in general. Actually, I don't really like the notion of positive and negative, it all depends so much one one perception.

Ciao, Lorenzo

[nancyann]

Hi Donna,
& welcome:

I agree with Sue - look into radiation.
I'm one of the unfortunate ones who had surgery with complications of
facial paralysis, & all the mess that goes along with it.
Even with the best of surgeons sometimes these things happen: my facial nerve did not respond when they
put the nerve sensor (don't know the name) on it prior to even tackling the tumor(only symptoms pre op
were tinnitus & decreased hearing).
I've only said this once before, but truth is, I would do radiation knowing what I know now
(hindsight is a beautiful thing).
You DO have options, look into them all:  watch & wait, radiosurgery, microsurgery.

All the best Donna
(a fellow 50 year old - what a way to celebrate: with a tumor, ugh).

[ceeceek]

Hi Donna,
Let me tell you ,,,,,,,
This site is a great resource. I have been also recently diagnosed with a whatever....2.8x2x2cm still officially waiting but beleived to be AN or facial nerve schwanomma....same difference as far as I am concerned, and where I was just as anxious and insane with worry, after reading all the post, getting quick replies from everyone etc. I feel much better, as well as better informed about what options I have available.
I unfortnatly do not have much info for you directly other than check check check allllllll your options and talk talk talk with everyone here. They are fabulous.
Ceeceek

[Joef]

the surgery complications are worrisome, but happends more with larger AN's .
 at your size, you have lots of options.. surgery or radiation .. is your hearing still not to bad?

  welcome!

[donna lee]

the surgery complications are worrisome, but happends more with larger AN's .
 at your size, you have lots of options.. surgery or radiation .. is your hearing still not to bad?

  welcome!

Hi Joef,

Thanks for the encouraging words. My hearing loss at this point is not too bad, just some  dulling on my L side. I have had this hearing loss for several years but didn't think much of it.  I don't have any other symptoms.  I'm considering having a repeat MRI in 6 months to check  the rate of growth, as I explore all my options.

Donna

[donna lee]

Hello, Donna.

Just a quick note of encouragement.  Today is my 1-year anniversary following translab surgery and I am doing just fine.  I do have total hearing loss on the AN side and a little of the drunken feeling when I move around, especially in the dark, but my life is back to normal otherwise.  I work full-time and do everything that I did before surgery.  I realize that I am very fortunate not to have experienced many of the difficulties others have, but I thought you might want to know that there are positive outcomes from AN treatments.  Whatever your treatment choice, find the best physicians and get all of your questions answered.  Once you make a decision, I believe you will find that it brings you a measure of peace.

All the best to you -

Sanddollar

Hi Sandollar,

Thank you for the encouragement!  It is nice to know that there is a positive outcome out there.

Donna

[Battyp]

HI Donna Lee and Welcome.

What part of the country are you located?  Like everyone has said...research your options, met with the doctors, request the brochures from the ana as they are very informative.  If you're not comfortable with a doctor go to another one.  It took me three consults before I found someone I was comfortable with.  You can send a copy of your mri and report to house for a second opinion as well as many of the radiosurgery places.  If you need help finding contacts for either just let us know and someone will steer you in the right direction. 

There have been many who have had their treatment and moved on as their outcomes were fabulous!

Ixta..love your batman!  I used to drive a bat car until cheryl sent me my pirate princess plate so now I drive the pirate mobile!

[Obita]

Hi Donna:

Welcome!!

Get a few radiation and surgical consults from the most experienced doctors you can find.  Then, if it grows, you will be ready to make your decision and get on with it.

I had surgery in May '04 due to the location and size.  I am the same as before surgery except I am deaf in the left and multi-tasking does not come as easy as it once did. 

Are you in the USA?  You and always post about doctor info......someone on here will probably know AN doctors in your area.

Good luck to you, Kathy

ps:  does anyone know if a repeat MRI in three months is a reasonable request?  just in case it is growing?? might be an option to let you relax a little Donna