Author Topic: Any young adults with AN?  (Read 16326 times)

Itheus

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Re: Any young adults with AN?
« Reply #30 on: July 11, 2011, 10:52:37 am »
Well I'm going through with it, and am confident in my decision.  There were some outside factors that encouraged me to go through this as well (major shakeup at work coming August 1st, want to make sure I'm covered!!).

I had my pre-op at UofI, and couldn't have been more pleased with the doctors, nurses...everyone involved.  It was great to have my wife meet the staff too.  July 21st is the day...I wish it was tomorrow as I just want to get this thing taken care of.

I've been trying to talk my wife in looking in the 'Caregivers' board.  There's some great information in there.

Kathleen_Mc

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Re: Any young adults with AN?
« Reply #31 on: July 27, 2011, 02:39:13 am »
Itheus: I am glad for you that you've been able to make a decision and are confident in it. Once you're on "the other side" of the surgery and some time has past it's important to know you made the right decision for you. Let "us" know when the surgery is and how it goes
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

hruss

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Re: Any young adults with AN?
« Reply #32 on: July 27, 2011, 01:25:36 pm »
Hello everyone,

my name is Hristina and I know a lot of people on the board (to the long-time participants actually). I am from Bulgaria and got three AN rectrosigmoid surgeries in a year - Oct 2007 - Oct 2008. The last one abroad - in Germany.

Cola, i am writing here in response to your questions. I would like to apologize first that they were posted 8 or so months ago and I have just had the opportunity to reply back. What happened with your questions and with the second opinion you asked for?  Did you find the answer you were looking for?
At the time of the first surgery I was 25. It just happened out of the blue for me. I did not have any symptoms like loss of hearing. Just a sporadic vertigo that increased its frequency in a month or so. I had a big big tumor whose removing after the third surgery left me with facial paresis. More at that time rather than now but it is stil visible.
I was in your boat looking for the right place. I am from Bulgaria, Europe and was ready to fly over to HEI. Fortunately I found another top notch centre in Europe - INI Hannover, Germany where prof Samii operated me. Please ask for a second opinion, meet with doctors, write here and ask all questions you have. If I hadnt asked them I would find this place in Germany. Trust me, people here are wiling to help and ready to devote part of their time to inform as much as possible.

Please PM m if I can be of any help. I am sorry again I am not so often here!

All the best of luck
Hrissy


 
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

sarahinPA

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Re: Any young adults with AN?
« Reply #33 on: July 27, 2011, 06:59:43 pm »
Hi ColaBurns,

I am 26 years old and was diagnosed with a 2.2cm AN when I was 23 years old. I underwent Gamma Knife radiation in 2009 and recently was told that my AN is re-growing, I am scheduled for surgery to remove the tumor on Friday.

I have facial numbness, slight hearing loss, tinnitus, and have recently developed facial spasms. And of course, headaches. Not so sure when this all was posted, but I just saw it and wanted to let you know that there are other "young" people out here that have AN's

Good luck!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.