Tuesday, September 27, 2016

Join the club, you really are not alone.

The first thing I did when I found out I had an acoustic neuroma was visit Dr. Google because of course Google knows everything right!?  When someone is diagnosed with an ailment people will tend to say "well don't google it because all it will tell you is that you have cancer or are going to die" but of course we never follow that advice.

When I googled acoustic neuroma the first time surprisingly enough WebMd wasn't the first thing to pop up in the search the ANA was.. the Acoustic Neuroma Association, believe it or not there is an entire organization dedicated to this tumor.  Also, I should add that not once have I found that I am going to die or that I have cancer, in fact it is just a lump of cells and is benign and simply needs to be remove (haha "simply").

The second thing I did was visit Facebook and did a search which brought me to a group called Acoustic Neuroma and another page called Acoustic Neuroma Friends.  These pages are filled with people who are also plagued with this tumor, according to NORD the statistics of someone having an acoustic neuroma are 1 in 100,000 with 2,500 new people diagnosed each year and rising as methods for finding these tumors are improved.  Finding a page on Facebook with over 2,100 members was pretty exciting.  I joined both pages introduced myself and have had nothing but huge amounts of support since.

There are support groups in many cities and states and if there isn't one the ANA makes it easy to establish one.  Knowing there are other people who have a similar experience puts me at ease.  The other thing is that people who are diagnosed with this are so straight forward never afraid to share worst case scenarios or to "brag" about their perfect outcomes....both sides are appreciated especially by someone who has yet to have surgery by providing the bad outcomes it makes me aware and teaches me what to ask the doctors, the positive stories give me hope that anything is possible.

Mark Ruffalo
The third thing I did was go to youtube and do a search, what I was hoping to find were personal accounts from people who have gone through this.  One of the best stories I found was from an actor, Mark Ruffalo.   He has an amazing story, but I will keep that for him to tell! Doing this also put me in the direction of finding many many blogs (just like mine) telling their story and venting to the little know world of acoustic neuroma and vestibular schwannoma.

You just have to appreciate that there are people out there willing to share their story because without them I would feel lost and never would have taken time to share my story for the next person who has to endure this blasted tumor.  I hope everyone feels inspired to share their story because we are in this together and your support is the best support one can find.

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