Looing for Suggestions on How to Proceed

[Marty59]

Hi everyone:

I was diagnosed in June with a 5 x 10 x 6 mm "enhancing mass present within the left cerebellopontine angle nonspecific, althouth likely on the basis of an acoustic neuroma."   My ENT specialist sent me to a "neotologist?" (not sure on spelling).   He suggested I "watch and wait".   Well I'm coming up on my 6 months and am planning to get a follow up MRI - although interestingly when "pushed" the doctor said that surgery might not be a bad option for me - I'm 50 and in very good health (1/2 marathon runner).   

So I am seeking opinions form those of you who have been there.   Do I continue to watch and waiit; do I get a second opinion and from whom; do I check our the clinic in California (House Ear Clinic) that I'm told is the best in the country to do this kind of surgery?   I live in Virginia.

Thanks for your thoughts.

Marty

[CHD63]

Hi Marty and welcome to the Forum!

Sorry you have an AN, but glad you found us.  Most of us are not "medical" people but many of us have done much research since we were diagnosed with having ANs.

From the sounds of the size of your AN and your overall good health, you have plenty of time to do your research.  Unless your symptoms are progressing rapidly, you have time to evaluate your options.  The main thing is to seek out medical professionals who have had MUCH experience with ANs since they are rare tumors.

Since you live in Virginia, you might want to have an evaluation by Dr. Takanori Fukushima at Duke University.  He has done hundreds of AN removals and would be close to you.  He did my surgery 19 months ago and I have had excellent results.  House Ear Institute will also do evaluations if you send your MRI CD to them.  If you want to explore radiation as an option, others will chime in here, I know on options here in the East.  However, Stanford University is highly respected for its radiation treatment of ANs.

Ask away on any more questions and do keep us informed how you are doing.

Clarice

[tenai98]

Hi Marty and welcome
My tumor was small and my ENT put me in wait and watch. But the more I read I decided on surgery as the smaller the tumor upon removal, the smaller "usually" the post op problems...I choosed surgery for the simple fact that I wanted the Booger out of my brain and with radiation, it only arrest its growth, but mass reminds a resident, more like a squatter in one's brain.   Treatment is a personal choice. We are all unique in our treatments and recovery....Search and ask many questions on here. You will receive an abundance of personal replies....
JO

[cindyj]

Hi, Marty and welcome!  Were you born in '59 as your "name" indicates?  I'm also 50...currently training to do my 2nd 1/2 marathon (walk/jog/walk).  After I was initially diagnosed, I waited until I had my 6 month MRI to make a decision, similar to what you're now doing.  Those of us with smaller tumors have a luxury in that regard.  The decision is still grueling   so, we know what you're going through. 

I did go to LA to House for my surgery - surgery was the right choice for me, rather than radiation and Dr. Friedman at House just "clicked" with me.  However, there are many great surgeons around the country.  Duke, as Clarice indicated, has a great reputation and I'm sure others will be along to offer other thoughts for you.

Second opinions, in my opinion, are very important prior to the AN journey.  Some here have certainly gone with their first doc and done wonderfully.  But many, if not most, do get more than one opinion.  But, ultimately, it is your decision to make.  The docs give you the options and their best advice, but you will have to decide. 

We hope you'll stick around here and ask as many questions as you can think of...someone here will almost always have an answer for you!

Take care and keep us posted,

Cindy

[texsooner]

Hey Marty...I'll be 50 too next April and run a few 1/2 marathons too. I had surgery about a year ago and ran a half about 4 months later....Keri on the board here did a half just a couple of months after surgery. As noted, you have a fairly small AN and thus have time to figure out your best treatment option. Because of the size of my AN, I had to have surgery. Being in good health as you note, should definitely help your recovery whenever you have treatment. Good luck.

Patrick

[leapyrtwins]

Welcome, Marty 

Your ENT most likely sent you to a neurotologist. 

My two cents worth on your situation (and keep in mind I'm not a doctor) - with an AN your size, I'd look into radiation.  It's not for everyone (I had the option, but chose surgery) but you need to get a well-rounded opinion.

While HEI is certainly a stellar facility, there are also other stellar facilities out there.  I'm not sure what's in Virginia, but you may not have to travel as far as HEI for treatment.  The other thing about HEI is from what I've heard they typically say surgery.  They are not big advocates of radiation - since surgery is their specialty (they are the pioneers of AN surgery).

If you haven't had contact with the ANA yet, please contact them and ask them to send you their informational brochures.  They will explain a lot - and in easy to understand language (no medical speak) 

You need to investigate all your options - thoroughly - before making your treatment decision.  Treatment decisions are highly personal - one size doesn't necessarily fit all - and we will be here to help and support you whatever choice you make.

Best,

Jan

[Jim Scott]

Hi, Marty ~

I just wanted to pop in and offer my welcome, although I wish you didn't have to deal with an acoustic neuroma.  Since you do, I would suggest that you send for and read all the ANA literature Jan ('leapyrtwins') recommend and also, to seriously consider obtaining a 'second opinion', such as those offered by the doctors at HEI (for free).  The relatively small size of your AN offers you the luxury of doing copious research and the option of simply observing the AN (via semi-annual MRI scans) to monitor any possible growth.    We call that option 'Watch-And-Wait'.   

The folks who frequent these forums stand ready to help you in whatever way is open to us as non-physicians.  Our practical experience as AN patients (pre and post-op) can be invaluable to a 'newbie''.  I hope you'll consider us friends and visit here as often as you feel necessary.  We'll be here. 

Jim

[Adrienne]

Hi Marty,

You mention the size being small, and being in good health; but what about side effects from the AN?  Are you experiencing any side effects (headaches, dizziness, facial pain, etc?).  If it was me in the same shoes, I'd be leaning towards continuing to watch and wait and only 'acting' on it if it starts growing.  While it's true that you can come out from radiation or surgery feeling almost exactly the same, you are introducing a whole level of risk-possibly unnecessarily. What if it just sat there at that size and didn't grow?  Would you live a full life the way you feel right now?  That said-that advice is only good if you aren't really experiencing many side effects.  Sometimes, even the small little ones can cause people trouble.  In that case, you'd be more likely to want to act on it.

I hope you're feeling well.
Welcome to the board, despite not wanting to ever be here! :-)  Hope you're doing OK since diagnosis.

Adrienne

[petgroomer]

I feel I am too new to offer much advice to you.  But I do have one word of advice..
DEFINATELY seek another opinion
On here you will learn SO much!  Then when you go for your second opinion you will be well informed and ready with questions.
Many of these members have been through so much that they tend to have alot of second very accurate opinions themselves.
Read, read, read and then take action. 
Looking forward to hearing about your next opinion from a well known Clinic. 
Best of luck and stick with this group, they are amazing!
Rhonda Edwards

[Tumbleweed]

Hi, Marty:

I suggest you stay in W&W if your symptoms are very mild and the tumor isn't growing (which your followup MRI will determine). Dr. Derald Brackmann of HEI once told me that he has seen some tumors not grow at all over the course of 20 years. In the meantime, get several opinions from different doctors who specialize in different forms of treatment, so you will have a balanced set of opinions to draw from should you ever need to get treatment for your AN. I would consult with doctors who specialize, respectively, in 1. surgery, 2. CyberKnife, 3. GammaKnife, and 4. standard FSR.

You can get a free review of your MRI and a no-cost consultation by phone or mail from:

Dr. Chang at Stanford University Medical Center (CyberKnife and surgery): sdchang@stanford.edu
Doctors at UPMC (University of Pittsburgh Medical Center; GammaKnife)
Dr. Derald Brackmann/House Ear Clinic (specializes in surgery; performs GammaKnife in some cases)

Staten Island Hospital University practices standard FSR. To my knowledge, you would have to pay for a consultation with them.

Good luck!

Tumbleweed

[leapyrtwins]

Marty ?  Are you with us ?  I know it's only been a few days since you posted, but I'm wondering what's going on with you.

Hope all is well,

Jan

[Mickey]

Hi Marty! As of right now you have a small AN. This really gives you the luxury of time on your side. W+W can be a great option with regular MRI`s to monitor. This is all a very personal choice with all of us. Whatever your choice your in a good place with the  technology of the day and size of your AN. My personal choice is to W+W. So far I`m stable and happy for over 2 years. I may have had this for many years prior and don`t know how long this really has been stable. I follow a very healthy lifestyle at 61 and won`t intervine unless there is a change. Best wishes, Mickey

[Vivian B.]

Hi Marty,

I just had my first 6 month MRI follow up. I also have a growth in the CPA. I was told that when the growth begins in the CPA and grows outward to the acoustic nerve, they are likely to be meningiomas. The AN's originate from the acoustic nerve upward. Anyway, they both cause the same symptoms and the same damages, and treatment is the same. My tumour is so far stable but had it grown 1mm in these past 6 months, my neurosurgeon said that he would not recommend any treatmeent for as long as the symptoms are manageable. He thought why do anything at all if not required. At firist I thoiught, I don't know if I can do this watch and wait thing but then I reconsidered and thought, he is right, my hearing is deteriorating in any case and really, what would I accomplish now by treating it. Both treatments available are not ideal and may not provide compolete  cure. You still have to follow up with MRIs regularly maybe not as often as after treatment but it's not like you can disregard checking it every so often in any case. It's a catch 22.   I say, if you can manage with your day to day life stay on W & W.  You may have to get used to the discomfort that it causes.

Vivian

[Tumbleweed]

my hearing is deteriorating in any case and really, what would I accomplish now by treating it.

To paraphrase Dr. Chang, the reason to treat earlier is to preserve whatever hearing you still have left.

That said, radiation (and surgery) can both cause additional hearing loss (and other complications), so the decision of if and when to treat is not straightforward.

Best wishes,
TW