Author Topic: Just diagnosed...  (Read 8768 times)

Manders

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Just diagnosed...
« on: February 28, 2012, 03:02:08 pm »
Hi everyone! I was just diagnosed with a 1.3cm AN two weeks ago and during my research I came across the ANA website and this forum. It's so nice to know that there are other people out there who are in the same position as me. When your doctor tells you that only 1 in 100,00 people have an acoustic neuroma, you start to think you'll never find someone who really gets what you're feeling.

Brief intro: I am 24 years old and first noticed symptoms of my AN back in 2007 when I experienced sudden hearing loss in my right ear that left me completely deaf on that side. I was told that a viral infection had caused my hearing loss and that it would not return. That was five years ago and I had spent those entire 5 years thinking that it was a strep throat infection that had taken my hearing. I learned to live with my single-sided deafness and thought that that was it for me. I wasn't planning to ever go back to an ENT. In February, at the urging of my dad, I went to the Cleveland Clinic to see about a new hearing aid for SSD. While there my amazing doctor, Dr. Erika Woodson, found the (then) 2mm tumor on my MRI films from 2007 that OSU had somehow missed before. She ordered another MRI and that's when I discovered I now had a 1.3cm tumor growing in my head. I've decided to have it surgically removed using the translab approach and my surgery is scheduled for May 11 at the Cleveland Clinic.

I've had a little bit of time to process and accept the news so this message is mainly to introduce myself and let all of you know that I'm so thankful I don't have to go through this alone. I look forward to taking in all the advice and wisdom you have to share. I've also started a blog http://www.awkwardturtlesan.blogspot.com/ to track this journey of sorts, so please feel free to take a look.
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

Tumbleweed

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Re: Just diagnosed...
« Reply #1 on: February 29, 2012, 01:42:32 am »
Welcome to the forum, Manders! Sorry you too have an AN, but we're glad that you've joined us on this forum.

Your AN seems to have followed the average growth pattern of 2 mm per year over the past 5 years. Another thing we should all learn from your story is the importance of getting (at least) a second opinion about our MRIs. I too had a tumor overlooked: a small hypoglossal tumor that was visible in my first two MRI series but not noticed until my third series was read my a different pair of eyeballs.

How wonderful that your dad was such a great advocate for you. Had he not urged you to dig deeper, your AN might have continued to grow undiagnosed until it became very large.

Again, welcome to our -- your -- forum.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

annamaria

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Re: Just diagnosed...
« Reply #2 on: February 29, 2012, 06:12:14 am »
That is, to be exact, "an incidence of 1 in 100,000 per year".  As a simple math calculation, if one postulates (for simplicity) that lifespans are 100 years, then the implication is that, considering an entire lifetime, 1 in 1,000 people overall actually have (or have had) an AN.  If you work for a company with 2,000 people, then there will be another individual there with an AN.  If you live in a town with 10,000 people, then there will be another 9 individuals with ANs. In New York City there are 10,000 people with ANs. That's statistics. Obviously, statistics are generalized abstractions, but they give an aggregate view.

Annamaria

ppearl214

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Re: Just diagnosed...
« Reply #3 on: February 29, 2012, 07:26:29 am »
That is, to be exact, "an incidence of 1 in 100,000 per year".  As a simple math calculation, if one postulates (for simplicity) that lifespans are 100 years, then the implication is that, considering an entire lifetime, 1 in 1,000 people overall actually have (or have had) an AN.  If you work for a company with 2,000 people, then there will be another individual there with an AN.  If you live in a town with 10,000 people, then there will be another 9 individuals with ANs. In New York City there are 10,000 people with ANs. That's statistics. Obviously, statistics are generalized abstractions, but they give an aggregate view.

Annamaria

Annamaria,

Updated info from the ANA, noted at the Symposium and now on the website:

http://www.anausa.org/index.php/overview/what-is-acoustic-neuroma

"How often do Acoustic Neuromas occur?
 
Most recent publications suggest that the incidence of acoustic neuromas is rising. This is because of advances in MRI scanning both on incidental scans and for patients experiencing symptoms. Studies in Denmark published in 2004 show the incidence is 17.4 per million or close to 2 persons per 100,000. Most acoustic neuromas are diagnosed in patients between the ages of 30 and 60."

Unfortunately, becoming higher in numbers but.... thank goodness to modern medical marvels with the advances in MRI's. 

Phyl
« Last Edit: February 29, 2012, 07:28:27 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: Just diagnosed...
« Reply #4 on: February 29, 2012, 07:32:27 am »
Hi Manders and welcome to this forum .....

You will find a great variety of personal experiences and MUCH support here.  We exist to walk with others through this unexpected journey involving having an acoustic neuroma.  Welcome and keep posting!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ppearl214

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Re: Just diagnosed...
« Reply #5 on: February 29, 2012, 07:45:16 am »
You will find ..... MUCH support here.

We do nothing of the kind here, Clarice! ;)  ;D   :-*

Hi Manders and welcome.

As you can see, you definately do not walk alone in this journey... and yes, it can be quite a journey.  Know that there is lots of info here, lots of shoulders, bad jokes, GREAT support and terrific folks (ok, except for a few here and there with halos that are tilted!  The guilty parties know for whom I reference! ;) ).

Glad you found us.... and know we are cheering you on!

Again, welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

lrobie

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Re: Just diagnosed...
« Reply #6 on: February 29, 2012, 12:48:41 pm »
Manders,

I'm sorry that you've had to join the club, but you will get tons of support from many people on this forum.  Who will be doing your surgery at the Cleveland Clinic?  I had a consult/second opinion from Dr. Lee at the Cleveland Clinic.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

Manders

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Re: Just diagnosed...
« Reply #7 on: February 29, 2012, 01:58:40 pm »
Thank you all so much for your warm welcome! I'm usually one of those independent types who keeps to herself  and doesn't usually do things like this but I'm so glad I did! Just reading all of your posts made me smile. :)

Lisa, Dr. Erika Woodson will be performing my surgery at Cleveland clinic in conjunction with Dr. Jorge Alvaro Gonzalez-Martinez (what a mouthful!). She's younger but has performed over 200 surgeries and acoustic neuromas are her specialty. That and she's just an amazing person all around. I feel really comfortable with her. Are you looking to have your surgery there too?
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

Richard_T

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Re: Just diagnosed...
« Reply #8 on: February 29, 2012, 03:18:34 pm »
Welcome Manders and good luck.
1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

annamaria

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Re: Just diagnosed...
« Reply #9 on: February 29, 2012, 06:07:44 pm »
This is technical observation (for some, a few, who may be interested)...

It's true that rates are quoted as say "1 in 100,000" for shortness of terminology.  But what is meant, and what should be kept in mind, is that the term really means "1 in 100,000 PER YEAR". Just to furnish an example (not to imply that this is the most up-to-date statistics) you may want to make note of the following quote from

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

"Only about 10 tumors are newly diagnosed each year per million persons (Evans et al, 2005), corresponding to between 2000 and 3000 new cases each year in the US. Another way of looking at this is that an average person has a risk of about 1/1000 of developing an acoustic neuroma in their lifetime (Evans et al, 2005)."

Let's see what that says: 10 tumors per year per million; ok, that is the same as 1 tumor per year every 100,000.

Then note the next statement:  1 in 1000 chances over a lifetime (or another way to look at that: if you freeze the window to 1 year, then 1 in 1,000 of the people you know will be found to have a AN -- that is the figure I quoted earlier in this thread).  How did the author arrive at that?
Well, if 1 in 100,000 per year in a population get an AN, and that population lived as a bloc to 100 years, then 1 in 1000 people over those 100 years would get an AN.

Annamaria

producer

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Re: Just diagnosed...
« Reply #10 on: March 02, 2012, 05:36:50 am »
Hi Manders, and welcome to the forum. Sorry to hear about your diagnosis, we've all been there before so we understand the emotions..

I am a little surprised to read that you experienced sudden and total deafness as a result of the 2mm (at the time) AN.

Can somebody explain how this can happen? As we know hearing loss is caused by the compression of the auditory nerve as the AN grows. So how can somebody like Manders experience total deafness from a barely noticable tumor?



many thanks


chris

Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

Manders

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Re: Just diagnosed...
« Reply #11 on: March 02, 2012, 01:42:46 pm »
That's exactly what I've been wondering this entire time, Chris. It seems like most everyone loses their hearing really gradually and only after their tumor is pretty sizeable. Mine disappeared in about four days. Anyone have any insights? Maybe once they actually go in there to remove it they'll find it's bigger than it looks on the MRI.
Diagnosed February 2012 * 1.3cm tumor * Experienced sudden & total hearing loss in 2007 in right ear * Translab scheduled for May 11, 2012*Follow my blog at: www.awkwardturtlesan.blogspot.com

Tumbleweed

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Re: Just diagnosed...
« Reply #12 on: March 03, 2012, 12:10:54 am »
Manders, your tumor is not likely to be much bigger than what the MRI shows. Unless it has grown since your last MRI series was taken, it can't really be more than 2 mm bigger along any one axis of measurement than what the MRI shows. That's because 2 mm is the tolerance or inherent error of measurement in brain MRIs. (This error is caused by the gaps between "slices" through the brain at which each image in the series  is taken.)

It isn't clearly understood the reasons why a small tumor can cause sudden hearing loss. It may be due to damage from free radicals caused by an inflammatory reaction to nerve irritation. Or anatomical differences in different people who have an AN (and how that might impact blood flow to the auditory nerve, for example). In fact, some people suffer mysterious sensorineural hearing loss for no apparent reason; their MRIs show no tumor or other apparent cause.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

jaylogs

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Re: Just diagnosed...
« Reply #13 on: March 03, 2012, 12:33:33 am »
Manders, in my research I have found that these buggers in our heads are not all created equal!  They may grow only in the IAC, or in and out of the IAC...they may be poking into the brain.  The 8th nerve (hearing) runs through the IAC and your AN  must've cut off communication there.  Maybe you had nice big strong hearing nerves! :)  At any rate, I am simply amazed at the wide range of symptoms that usually end up with the diagnosis of having AN's.  I have even heard of people learning that they had AN's through unrelated MRI scans for other issues.  So it's just one of those things that can happen.  And yes, I have heard of tumors being bigger upon removal.  I think our esteem Jan (leapyrtwins) had hers nearly double in the size between MRI and surgery.  I know all this rambling along may or may not have answered your questions but, knowledge is power! :) 
Jay
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

lrobie

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Re: Just diagnosed...
« Reply #14 on: March 03, 2012, 08:15:54 am »
Upon initial diagnosis, my tumor was 7 mm.  I discovered it because I had sudden hearing loss.  I can't say that it was a 100% loss, but it was worse than it is now.  I was put on a steriod right away and my hearing came back at 100%.  My belief is that the steriod caused the swelling to go down.  If I hadn't have had the steriod right away, it would have been a total loss.  After my hearing returned, I would have bouts of a slight loss.  At those times, I would load up on Ibuprofen as it is an anti-inflammatory.  My hearing would come back again.  I told my neurosurgeon of my own remedy and he said to keep doing that if it worked.  Unfortunately, it only worked for the first 1 1/2 years after diagnosis. 

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

 


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