Author Topic: my watch and wait is over  (Read 2923 times)

chriswalker

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my watch and wait is over
« on: September 16, 2016, 02:19:37 pm »
Hi all,

I know the answers to all my questions are found somewhere among the many, many topics and helpful hints in this forum.

That being said (written) I figured I'd just put out my story which is the same and different from all of yours.
I had a bout of dizziness at my job May of 2015 which end up in vomiting in front of my young male coworkers (I'm a 61 year old female) so you know it was bad!
I took an ambulance ride to the hospital and stayed there for 2 days since my dizziness would not stop.  Mega amounts of meclazine later I was released.  After the second major dizzy spell I saw a specialist.  Of course all the usual suspects were ruled out and an MRI later my new companion was found.  I immediately checked out this website and became a member.  This is the first time reading the forum though.
I've had my 3rd MRI and my little companion has become a bigger companion - she's doubled in size. Maybe I should be more nervous about this but the thing that makes me most nervous is if I choose radiation my friend could get mean, nasty and deadly.

I have appointments to see a radiation guy and a surgeon in the next to weeks.  I will see Dr. Hoffer and Dr. Babakidas with UH hospitals in Cleveland, Oh. (yes, Cleveland Rocks!)  Anyone had any experience with them? 
The choice of treatments is difficult one to make and was put into perspective for my by a friend after I shared my bad new & more bad news but good news of being surrounded by family and fiends who love me on my Facebook page  - "Nothing like being forced to choose your own future disability, but then again there's also nothing like being loved unconditionally ♡♡♡"

I am going to my first ANA meeting - PICNIC! on Sunday in Canton, Ohio.  Can't wait to meet everyone. 


Sheba

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Re: my watch and wait is over
« Reply #1 on: September 16, 2016, 06:19:41 pm »
Hi - I grew up in Cleveland but now live in Texas.  Lots of family up there still.

Sorry to hear your AN is growing.  Choosing treatment is very personal - factors include age, health status, support system, health insurance, etc.

Cleveland has great doctors - you may want to investigate Cleveland Clinic too.  You may want to search the full Discussion forum for "Cleveland" using the Search feature (hint: go to the main discussion home page first.)   Also nearby in Pittsburg at UPMC is the go-to guy for Gamma Knife radiation (Dr. Lunsford).  If you go for surgery, you need to ask many questions to make sure the docs have a lot experience with removing ANs.

There are lots of people who share stories of great outcomes with either surgery or radiation;  there are also stories with surgery or radiation where it was a hard recovery / various issues to deal with.  So no simple answer there. 

Warning:  I think the message boards and AN Facebook pages show a disproportionate amount of information on harder outcomes and challenges, because people are looking for support, solutions, etc.  People with good outcomes usually spend less time at these sites once they are recovered.  I feel guilty when I talk about my good outcome, because I don't want to "rub it in" on people having a hard time - but at the same time I want to give my "data point" to the pre-op people who are deciding what to do.

I had surgery about 8 weeks ago - I had/have no pain, gained back my strength quickly, was walking a ton before I went back to work.  I can tell my balance is not 100%, I just have to be a little more aware of how I am moving, but it does not slow me down, and it should continue to improve.  I did lose one side hearing, but my other ear is very good and I am open to also trying a BAHA device.  For my surgery, I chose to go to the Keck Hospital team in LA (Drs. Friedman and Giannotta), they and their team were fantastic.
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.