Watching and Waiting but I have questions

[BBrock]

I am coming up on my first 6 month check-up and have been away from here for awhile.  Soooooo, after my second opinion in January my doctor told me I did indeed have an acoustic schwanoma and to watch and wait was fine.  He said the tumor itself was about the size of a pimple, very small and was almost right up next to my ear bones.  He said that was a good thing.     Please chime in if you have heard different.  Since I am a reservist on active duty my thought is to go ahead and have the little bugger removed so that I can move on with my life after they let me out of here.  But my questions are as follows I apologize for my ignorance in advance.  I have been avoiding this especially since many of my symptoms had disappeared for about a month or maybe I just got more used to them.

Is a Schwonoma and Nueroma the same thing?
What post surgery side affects can I expect?
Those that have the BAHA do you recommend it to others?

Thanks for all,

Brian   

[EJTampa]

Hi Brian,
 
I went back and read your previous posts to see what your symptoms were.  Quite a few there, although I bet the hearing loss and balance issues/dizziness are the ones that stay with you.
 
First, yes.  A Vestibular Schwannoma and Acoustic Neuroma are the same thing.
 
Second, many on this forum would call your AN "small but mighty".  Sometimes small tumors are in just the right place to cause lots of symptoms.  Do you have tinnitus?  I missed that if you did mention it in a previous post.  Even though I am SSD now after surgery, I continue with the loud tinnitus I had pre-surgery.  I'm not sure if getting treatment earlier would have resulted in less tinnitus, but I didn't go see an ENT until my tinnitus was persistent and loud.
 
If your balance issues are mostly managable, you may want to consider one of the many radiation choices, especially if you still have good hearing.  I think the doctor said it's good that the tumor was up against the ear bones because that keeps it away from the brain, and perhaps less interaction with the facial nerve.
 
As far as treating it earlier versus later...that's up to you.  If it grows, and sometimes even if it doesn't, your symptoms will increase over time.  You will lose more of your hearing, and if it begins to impact other nerves, you could eventually end up with numbness in the face and issues with taste.  I think at this point you are not looking at big problems since we're talking about a tumor the size of a pimple .
 
Nobody can chose for you, but you should do what you think will make you feel the most comfortable.  Want it out?  Get it taken out.  Radiation ok for you?  Get it zapped.  If it doesn't bother you and the symptoms are not too bad, watch and wait will work for now.
 
IMPORTANT - If you decide on surgery, PLEASE make sure it is with a center/surgeon who has done LOTS of these in the past!  Choosing an "in-network" surgeon who has only done a handful of these surgeries, or worse yet, none, could leave you with life-long facial palsy and other nasty effects.  Do your research first, and rely heavily on the suggestions of others here on this forum.
 
Hope some of that helps,
 
Ernie

[Sue]

Ernie gave you great advice, Brian.  With AN's or VS's if you prefer, it's all about location, location, location.   And yes, please do your homework.  You decide if surgery or radiation is right for you.  Be sure you talk to experts in both fields so that you can get an informed, balance view of each option.  And when the "chance of cancer" story comes up with radiation, please remember that those chances are very, very minute.  You have a greater chance of being killed in your car on the way to your treatment. 

Hang in there,

Sue in Vancouver, USA

[Mickey]

W+W are a very good option! Got the time to explore all that can be done and what`s your preference. I`m still a believer in you never know and may not need intervention. Thats what I`m doing and so far so good. I`m as good as my next MRI and symptoms which I`ve had for 30 years. Best Wishes!, Mickey P.S. if intervention is required some day I do have an idea of all thats available.

[BBrock]

Thanks all for helping with my questions.  Sue I see you are from Vancouver.  I am from Seattle.  Where did you have your surgery and who was your surgeon?   I am leaning toward the Universwity of Washington Medical Center and Dr. Rubenstein. 

Brian

[leapyrtwins]

Mickey is right - W&W is a very good option, but I have to point out it's not for everyone.

It works great for some - like Mickey - but not for others - like me.

I'm the kind of person who just couldn't live my life knowing there was "something" inside my head.   I just had to have it out dammit! 

Post surgery side-effects are mostly single-sided deafness, facial nerve paralysis (generally temporary; sometimes permanent), balance problems, and eye issues.

You'll find a lot of information on the forum about side-effects, but you'll also get lots of info from your doctor - and from the ANA if you ask them for their brochures (I recommend this).  Just keep in mind that not all patients encounter all side-effects; but there is really no way to know going into surgery what your outcome will be and no doc can guarantee you anything 100%.

As for the BAHA, I had the implant last March and got the processor in June and absolutely love it.  It's not for everyone, but personally I've found it makes a big difference in my life.

There are many, many posts - and some BAHA pictures - on the forum.  Just search on BAHA to find them - and if you have any questions, please don't hesitate to ask.

Jan