Author Topic: My nice little tumor is misbehaving! Help!  (Read 4903 times)

Lynnhamlin

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My nice little tumor is misbehaving! Help!
« on: April 10, 2014, 09:44:06 am »
I have a 1cm left side acoustic neuroma and have seen Dr. Selesnick in NYC for 2 1/2 years while watching and waiting. As a matter of fact, I just had my yearly MRI and hearing test about 2 weeks ago and nothing had changed. My next appt is scheduled in a year. 

My only symptoms - up until this AM - are slight hearing loss in the upper registers in the left ear (hard to understand people talking in restaurants, loud places, etc).

Woke up this morning with loud pitched tinnitus in the ear as well as feeling like someone stuffed a cotton ball in my ear! When I speak it sounds all tinny in the left ear. But my hearing otherwise seems to be about the same.
I have a call into the doctor but was wondering if this has happened to others.

arizonajack

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Re: My nice little tumor is misbehaving! Help!
« Reply #1 on: April 10, 2014, 05:48:21 pm »
That's the disadvantage of "watch and wait."

The tumor is doing you damage even though things appear copacetic and, suddenly, the damage manifests itself and some issues, like tinnitus and single sided deafness are yours forever.

I had already lost 90% of my hearing on the AN side by the time I was diagnosed (I had ignored my hearing issues for a couple of years) and the remaining 10% was gone within 6 months while the tumor grew by 20%.

You're having a wake up call. If you still have most of your hearing in spite of the tinnitus I recommend that you consider treatment in the short run instead of waiting.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: My nice little tumor is misbehaving! Help!
« Reply #2 on: April 10, 2014, 06:12:53 pm »
Arizonajack is correct.  While in "watch and wait" you never know what that little booger is up to.  Then all of a sudden you have additional side effects of the tumor.  As he states there are no replays, once something is noticed, you usually will have that for the rest of the journey.

TJ

Mickey

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Re: My nice little tumor is misbehaving! Help!
« Reply #3 on: April 10, 2014, 08:37:46 pm »
There`s alot of factors which make W+W a viable alternative... Please look into them and see if this treatment may benifit you.  For me it`s been 7 years and I`m doing better than I was .  One thing I can say is don`t bother W+W if you `re not going to take a pro active life style to feel better. For much info you can read into our W+W brigade posts to get some interesting tips and experiences. Wishing you the best, Mickey P.S. That stufiness in AN ear I had at the very beggining. Took a small round of steriods and never had it since...

Lynnhamlin

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Re: My nice little tumor is misbehaving! Help!
« Reply #4 on: April 11, 2014, 02:39:15 pm »
Thank you everyone - just got back from the doctor and my hearing clearly got worse.  Although the doctor said it was impossible for growth to be the factor of my sudden hearing decline (I had an MRI two weeks ago and it had not grown), he did say that there are any number of reasons for this to suddenly happen. He gave me steroids and I go back in two weeks for another hearing test and visit to determine my course of action.

cont1592

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Re: My nice little tumor is misbehaving! Help!
« Reply #5 on: May 16, 2014, 11:55:35 am »
Lynn,

I know it's been a month.  So what happened on your hearing test and visit to determine the next course of action?  I am in a similar situation where I had a sudden increase in ringing and decrease in hearing so my doctor prescribed a steroid.  I am a couple of days into the steroid but I'm not even sure what it's supposed to do.  My doctor said it might "reduce the irritation of the nerve".

I plan on being around for a long time.  So the AN is going to have to come out some time or another.  I know removal will most likely cause more damage but waiting around seams like it will also more than likely cause more damage.  So what's the point of waiting around?

john1455

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Re: My nice little tumor is misbehaving! Help!
« Reply #6 on: May 16, 2014, 02:10:17 pm »
My personal opinion is W&W is a viable option ONLY when there are no symptoms and no signs of growth. Once symptoms appear, no matter how small, it's time to do something. There are enough posts on this forum to show what damages can result by continuing to bury ones head in the sand and doing nothing while your body is screaming for help. Just my 2 cents...
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

cpchri1

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Re: My nice little tumor is misbehaving! Help!
« Reply #7 on: May 16, 2014, 05:56:51 pm »
Very nicely said John.  I believe in prevention too.  When a wheel bearing on my car starts making noise (symptoms) I take the action to do the removal as soon as possible because it will eventually damage more of the car (axle, bearing hub, etc.) and might fail in a bad situation (like 1000 miles from home).  When I was losing my hearing and knew my tumor was slowly grown W&W was not my preference-I wanted it out!  Prevention to stop more neurological damage was my choice.   Being healthy and having no reason not to, I'm thankful for my choice of surgery.
.7 x .6 x .5 cm left middle fossa approach 2/26/14
50% hearing loss left side before 2/26/14
50% hearing loss left side after 2/26/14
No evidence of malignancy
Bell's Palsy left side 15 years before 2014

gracey79

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Re: My nice little tumor is misbehaving! Help!
« Reply #8 on: May 19, 2014, 07:32:58 am »
The noise you described happens to my AN ear on and off and has done so for years.  Never taken a thing for it, it works itself out in a day or two.  This has happened often to my mom with her AN too. 
Diagnosed 2014 a while after mom was also diagnosed with a slightly smaller AN on opposite side(we are not NF2)
4/14   2.0x2.4x1.7
10/14 1.6x2.2x1.5
6/15   1.5x2.9x1.6
8/16   2.8x2.2x1.5
Watch and wait may be prepping for surgery soon 6/17?
Mom of 5
16,12,5,3, 8m