Author Topic: My 10 year ANniversary!  (Read 1255 times)

jaylogs

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My 10 year ANniversary!
« on: October 20, 2019, 02:20:00 pm »
Greetings all! So it was only recently that I realized that it was last month that it was 10 years ago I learned that I was blessed with a vestibular schwannoma, also known as an acoustic neuroma.  That pretty much changed my life as I know it. So 10 years later here's what I have learned that may help out those who are new to this (both pre and post op). The first couple of years I was definitely wonky headed....balance issues. Not as bad as some have reported here on the forum but I had my moments.  But gradually over the years I've noticed things gradually getting better. The body does learn to adapt. Time to time I still catch myself all of a sudden loping off to one side for no reason but nowhere near like it used to be.  I didn't get any of the facial paralysis issues some have also reported so that is one less thing I had to deal with.  Fatigue was also something common almost everyone deals with and I did too. That also seems to have dissipated over time, but there are times when I am in social situations where there are lots of talking, that taxes me more than anything. The worse thing that I got from all this was I was left with diminished speech hearing on my AN side so I got a BAHA implant. That in turn created a LOT of complications, more so than the AN itself. But that all that is behind me as well and am definitely benefiting from it. So if you are ever being on the fence about getting some kind of hearing device I highly suggest it.  I went with Ponto, which I recently just upgraded to a Ponto 4...pretty nice! But as per usual, these are all my opinions. Always research and find what is good for you.

So, here I am 10 years later and I got lucky enough to become a moderator of this wonderful forum. I've made a lot of wonderful friends over the years through all this and I hope I have helped a lot of people through their own journeys that I once took myself.  It's never fun, always a bit scary these things life throw at us and while there are a lot of bad things on the Internet, there are a lot of great things like this Forum and the ANA and other organizations like this that help out people like us get through these life challenges that make it all a bit worthwhile.  So I urge everyone if you have questions or just want to vent, start a new topic or you can send me a private message and we can chat. It does help to get it off your chest and help you on your road to recovery.  Here's to another great 10 years!
Cheers and God Bless!
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

alabamajane

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Re: My 10 year ANniversary!
« Reply #1 on: October 27, 2019, 08:48:41 am »
Congrats Jay!

TODAY is actually 8 years since my surgery! I found out about mine about 3 yrs before that. It was life changing for sure ,, but this forum was a true blessing during those early months and following years. The people on here for the most part want to share experiences and “ non medical “ advice to those first diagnosed..

Life goes on,, just another bump in the road,
Peace,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

jami

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Re: My 10 year ANniversary!
« Reply #2 on: December 01, 2019, 10:17:01 am »
Thanks both for your inspiring posts! Having spent the morning on the forum here, this was the last thread I read and it brought tears to my eyes. Thank you for the hope for all!

Jami
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

mistasteve

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Re: My 10 year ANniversary!
« Reply #3 on: December 01, 2019, 11:03:42 am »
Thanks folks! Us newbies (5 months out) like hearing long-term success stories.

JLR

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Re: it’s now 3 years
« Reply #4 on: December 05, 2019, 11:13:13 am »
Hello I’m now 3 years post op. Balance still off. Yup all of a sudden I veer off to the left.  I have right sided deafness and in a crowd it’s deafening it’s so loud. My right side of face is usually swollen, I have a droopy eye and still put in drops every single day.other than that I’m thankful for my family and friends and most of all my grandchildren. But some times my balance is very off. I’ve had rehab, facial rehab, acupuncture. Anyone else still have post op issues. I’m thinking this is a life long battle.

 


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