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Author Topic: I feel so special  (Read 5512 times)

theshawn65

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I feel so special
« on: July 29, 2013, 01:19:48 pm »
1 in 100,000 people get this? Lucky me! lol

OK, so I was just called by my ENT and told I have an acoustic neuroma at 2.6cm based on the MRI I just had this past Thursday. He also booked me an appointment with a Dr. Ravi Samy for 8:30am tomorrow in Cincinnati. Not sure I'm ready to go that quickly but I'll process in the next few minutes and make my decision to go or not so soon.

My background, I'm 48, about 8-9 years ago I woke up one day with no hearing out of my right ear and just chalked it up to aging, stress, etc.. Hearing returned slowly but was never the same and being a stupid stubborn male who doesn't like going to the doctor I just kept putting it off. So I remarry 5 yrs ago and my wife consistently urged me to get it checked over the years, partly because when on my right side I said "huh?" too many times to her annoyance. Finally go in and walla! Acoustic Neuroma! Greeeeeaat.....

I've had no issues other than tinnitus, no balance or facial problems, headaches or anything but now the process of processing it all emotionally and deciding which way to go. Glad this place exists though!
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2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

jaylogs

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Re: I feel so special
« Reply #1 on: July 29, 2013, 05:19:13 pm »
Hi Shawn!! Welcome to our rather exclusive little club! I am glad you found us, there's a huge source of info for you to go through here. If you have any questions as you figure out your treatment options let us know and we can try to help out the best we can.  We are not doctors here, just folks who all have gone or are going through what you are going through.  Take care and let us know how it goes!
Jay
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8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

theshawn65

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Re: I feel so special
« Reply #2 on: July 29, 2013, 07:58:57 pm »
Thanks Jay, much appreciated. I will definitely be using this resource during my journey through this. Kind of po'd at myself for waiting so long to get checked out which obviously complicates my options as my tumor size is larger now.

Another life experience, another lesson.
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2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

phantagrae

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Re: I feel so special
« Reply #3 on: August 01, 2013, 10:22:19 am »
Be sure that you look at all your options--even though you waited a while to get it checked out, you still need to feel comfortable with your treatment decision.

Good luck!
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Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

Chances3

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Re: I feel so special
« Reply #4 on: August 01, 2013, 11:18:31 am »
Hi Shawn,

I had a small AN that was surgically removed 3 years ago.  No matter what treatment you decide, there is life after treatment, so hang in there guy.  As for this site - FANTASTIC !!  You will get the chance to have a dialogue with other AN people who have taken the journey.  Some have gone through a rough road, but this site is filled with support, and understanding.

My only advice at this time is to learn as much as you can about AN, and all the treatment options.  Make sure you are happy with the doctors you have chosen. Make sure the doctors answer all your questions, if not - find another doctor.  Being well informed makes the decision process easier.

God Bless,

Bob
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terisandler

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Re: I feel so special
« Reply #5 on: August 01, 2013, 12:44:47 pm »
Shawn, hindsight is always 20/20.  My daughter was recently berating me for waiting approximately 5 years before pursuing my hearing loss.  I did go to an audiologist in 2008 who said I was kind of borderline and come back in 2 years.  About 3 years later I had my hearing tested at a local warehouse store and the dispenser there would have been all too happy to sell me hearing aids.  I put this off another 1-1/2 years due to cost.  I thought it was age related hearing loss that I would eventually do something about.  In February I decided I would bite the bullet and get hearing aids.  I was certainly surprised to find this was more than age related.  I never heard the words "acoustic neuroma" until March of this year.  Now I know too much!  :)
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3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

theshawn65

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Re: I feel so special
« Reply #6 on: August 05, 2013, 07:34:48 am »
Thanks everyone. :)

While I do kick myself a little, the fact mine has been so asymptomatic outside of hearing loss and tinnitus for the last 8 years has me at least thankful I found it now vs. possibly being one of the unlucky ones who doesn't know until it's 4-5cm and causes more serious problems/complications.

Initially I thought surgery, but now that I'm getting more info on gamma/cyber knife I'm leaning that direction if it's possible. It's only been one week since diagnosis so I still have plenty of time to decide.
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2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

arizonajack

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Re: I feel so special
« Reply #7 on: August 05, 2013, 10:36:39 am »
Quote from: theshawn65 on August 05, 2013, 07:34:48 am


Initially I thought surgery, but now that I'm getting more info on gamma/cyber knife I'm leaning that direction if it's possible. It's only been one week since diagnosis so I still have plenty of time to decide.

2.6cm seems to be right on the border between radiation an surgery. Since your hearing is already shot you are still likely to be a good candidate for radiation.

Do all the research, read everybody's stories, and decide what's best for you. Then act. These things grow and can only get worse if not treated.

I also ignored my hearing issues for a few years and ended up completely deaf on the AN side. I chose GK and had it done in January. My most recent MRI showed necrosis of the tumor as expected.

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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

theshawn65

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Re: I feel so special
« Reply #8 on: August 06, 2013, 02:27:28 pm »
Thanks Jack,

Yes they can grow quicker at times, I want to go a bit sooner if GK is my choice as the ENT said 2.6cm but the Dr. Samy I saw showed me the image on their computer and it had 2.3 and 2.1 measurements. So I'm hoping the ENT didn't take into account the images are a bit magnified at 1.2x for some and 2.4x for others?

Anyway, I'll find out soon enough!
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2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

It is what it is

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Re: I feel so special
« Reply #9 on: August 14, 2013, 12:31:44 pm »
Welcome to the list.  You are doing a great job in researching your options.  After listening to many other's experiences, I realized it was very very important to seek treatment from specialists with these particular tumors.  Everyone makes their own decisions about which type of treatment they will pursue, but having free phone consults with places like House (HEI) in L.A. and Stanford can be helpful.  karen                     
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.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.
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