Author Topic: Almost a year...  (Read 3041 times)

ewchisek

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Almost a year...
« on: December 01, 2013, 01:55:44 am »
Hi!
I am coming up on the one year mark of diagnosis that has forever changed my life.  It will be a year in one week of my very first MRI, the same MRI I thought I was getting to just put my mind at ease (as I was considered by many a hypochondriac).
It will be a year in two weeks that I read my own MRI results stating that I had "a large mass" on the left side of my blah, blah, blah, pushing into my brainstem.  It was this day, that I also learned the word "vestibular schwanoma" or later called acoustic neuroma.
I was a healthy 35 year old mother of four boys...living a normal, little life.  Upon diagnosis, my world was turned upside down in a matter of seconds.  I was scared, mad, scared, furious, etc...
BUT...I made it through! Finding this forum was a blessing from God. I have been prayed for, supported by, counseled by complete strangers on this site. I will be forever thankful for this! 
When a person goes through something like this it's hard for the outsider to be supportive..the ANA
is an invaluable resource! 
I ended up having the translab. I ended up with left side facial paralysis. I had a nerve graft. I feel like I've been to hell and back..BUT, I made it! Am I the same person I was a year ago? NO!  Do I look different, yes. Am I a stronger person? Yes! Do I still struggle with all of this? Yes, everyday! But..I'm still here! I still get to be a mom to my four boys. I'm still a teacher to 28 kindergartners. I'm still living life to the fullest.
I guess my message for whoever is reading this is....getting this diagnosis sucks! But in many, many ways it doesn't. I am still living the life I was given, just in a different way. There are so many worse things that could happen...and for many with an acoustic neuroma the only challenge you'll have is surgery and maybe hearing loss. I also have the facial problems, that statiscally, don't happen that much. Even so, I am living proof that its going to be ok in the end. Was this what I planned? NEVER, but, it's what happened. It'll be ok!
My advice to any new members to this group...research as much as you can. Read as many old and new posts on the ANA as you can and reach out to anyone who you choose, because the group of people on this forum are the most supportive people you will "talk" to! AND...take a deep breath and know everything will be ok! It may not turn out how you expect, but it's in Gods hands and that in itself is enough. It's taken me almost a year, and I still have my questions, but I've come a LONG way from day 1!
Thank you, thank you, thank you..to each and every one of you that has helped me throughout this past year!

Elizabeth

LakeErie

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Re: Almost a year...
« Reply #1 on: December 01, 2013, 07:55:21 am »
Thank you, for your insightful post. I hope all newly diagnosed forum members have the opportunity to read it.
Am glad you are back to living your life and coping with the unexpected results of your treatment.
You  also write very well. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

ppearl214

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Re: Almost a year...
« Reply #2 on: December 01, 2013, 09:23:45 am »
Elizabeth, I moved this to "Post Treatment" forum as it is a wonderful journey you share and wanted it to be visible for those that search solely about post-treatment processes.  Wishes to you for continued wellness.  Thank you for sharing this!

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

TexasSprinter

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Re: Almost a year...
« Reply #3 on: December 01, 2013, 10:37:06 am »
Elizabeth--thanks so much for sharing. I, too, am grateful for positive posts like yours! 

Jim Scott

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Re: Almost a year...
« Reply #4 on: December 01, 2013, 02:05:09 pm »
Elizabeth ~ 

Thank you for your astute, encouraging message to newly-diagnosed AN patients!  Your words are both generous and appreciated.

As a long-time member of the ANA and these forums, I want you know that it is a pleasure to be of help to you and many others dealing with their own 'AN experience'. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

millie

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Re: Almost a year...
« Reply #5 on: December 01, 2013, 08:07:24 pm »
Elizabeth-
Thank you for being there for us AN-ers.  Your four boys are really making you step up to the plate, and tonight I needed to read your inspiring words.
I too have SSD but got an implant for the BAHA device day after Thanksgiving.  After An trans-lab, it was a piece of cake!
As for the facial paresis-I hear you!…This seems to be in a constant state of flux for me.  People who don't know me think I look great.   Truthfully, I look okay but the tightness in my left side makes me crazy.  It's because every time we mouth words or emote we use face muscles  …and we can feel them being stiff and non-compliant. Do you do exercises?  Also, some folks have told me improvement can occur even after several years. 
Keep the faith,
Mil

Mickey

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Re: Almost a year...
« Reply #6 on: December 01, 2013, 10:17:54 pm »
Elizibeth, That was very nicely put! Especially from the eyes of a fellow ANer... Wishing you the best in your life, Mickey

MDemisay

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Re: Almost a year...
« Reply #7 on: December 02, 2013, 11:57:57 am »
Dear Elizabeth,

It's so good to hear from you again Elizabeth! So glad that you could put your journey in a concise way for all the newbies. You have to slow down a bit (just like a speed bump) but then you can go on. What a fantastic attitude! God bless you! As I'm sure He has all of us who have come to know you. Have a Merry Christmas!
I wish you continued healing!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!