Author Topic: First Visit Here!  (Read 1514 times)

empath

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First Visit Here!
« on: December 19, 2008, 04:11:51 am »
Just had dignosis of a Small Benign Acoustic Neuroma and although I may have heard the word BENIGN it still scares me!!  Balance is not what it was which is so annoying, have a Hearins Aid due to some hearing loss due to Tinnatus. Have an appt on Jan 6th with "Independant Living" person.  Any advice about this woulld be most welcome! I am in the UK.

Empath

Debbi

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Re: First Visit Here!
« Reply #1 on: December 19, 2008, 07:50:51 am »
Hi Empath-

So sorry that you have to be a part of this rather elite club, but glad you found this website.  The folks here have provided me with support, encouragement, laughs and the occasional shoulder to cry on - you've found a great place.

There are several other Brits here, so I am sure you will hear from some of them with some UK specific info.  On a more general note, try to get more than one medical opinion on treatment options and do consider radiosurgery if your tumour is small.  Do lots of reading, but step away when you need a break.  This can be a little overwhelming at first.  Who am I kidding - it is overwhelming at the last, too!   ;)

Feel free to ask questions here - we're not doctors, but we do understand what you are going through!

warm welcome,
Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Pooter

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Re: First Visit Here!
« Reply #2 on: December 19, 2008, 07:59:41 am »
Empath,

Welcome to the forum!  Nobody likes having to be here, but we all love the fact we are.  Your first reaction is perfectly normal.  I was convinced I was gonna die when first diagnosed.  First, unless this thing grows large and left untreated, it's not going to kill you.  That's a good thing.  The hearing loss and tinnitus due to the AN (unfortunately) is a fact of life now (although, it could change the tinnitus a little bit).

You say "small", but do you know what size it is currently?  Depending on the size (and other factors), you have several different options.  Also based on size (and other options), you have plenty of time to decide what method of treatment.  Mine was 30mm, so time was not something I had a lot of.  Others are 3, 4 or 12 mm, and time was on their side to determine what method of treatment.  They typically grow 1-2 mm per year on average (others faster, others slower).

Depending on size and location, you can choose CK, GK radiation or if you are one "that wants it gone now!" then surgery is the way to go and you can have translab, retro, or middle fossa.  Your treating doctor will give you an opinion as to the best approach based on size and location.

I encourage you to search through the site.  Find out all you can about treatment methods, "issues" that people are left dealing with, how long they've dealt with them, etc..  Ask questions.  None of us are doctors, but we've all been where you are and can give advice or lend an understanding ear (no pun intended).

Probably one of the most important things is that you find a doctor who's experienced (VERY experienced) in treating ANs.  You don't want a regular GP monkeying around with this.  If your current doctor isn't very experienced in treating ANs, then find one who is.  Your best chance for treatment outcome is with one who understands the AN treatment options.  (FYI, you'll find that even doctors will "push" what they are comfortable with.. i.e. one who does a lot of GK will probably tell you that GK is the best option; while you talk to someone comfortable with the retrosigmoid surgery will probably tell you that retrosigmoid surgery is best.. they'll usually go with what they are comfortable doing...not always, but more often than not).

Again, welcome to the forum.  You've found THE place for friendship, support, and most of all real-life experience-based information from people who have been there.

You can begin by telling us all more about what you know about the tumor.  Size.  Location (if known).  How were you diagnosed?

Regards,

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Jim Scott

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Re: First Visit Here!
« Reply #3 on: December 20, 2008, 05:36:12 pm »
Empath ~

Hi - and welcome!  No one wants to have an acoustic neuroma but if you received that unwanted diagnosis, you've found a good website and forum. 

I won't repeat or attempt to elaborate on what the previous posters have stated except to re-emphasize that, assuming the tumor is treated at some point, you won't die from an acoustic neuroma.  As you know, benign means non-malignant, non-cancerous.  Unfortunately, the tumor is located in a place that is problematic and has to be addressed.  The good news is that ANs are quite treatable, often with non-invasive irradiation, which has a very high success rate.  Even surgery has a mortality rate that is statistically infinitesimal (less than 1%).   I trust our U.K. members will be able to advise you on issues specific to the United Kingdom and that your continued research will calm your fears as your knowledge about acoustic neuromas and their treatment (surgical and irradiation) grows.  I hope this website and forums can assist you in that endeavor.  :)

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.

catlover

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Re: First Visit Here!
« Reply #4 on: December 20, 2008, 06:30:51 pm »
Welcome Empath,
I can't say I'm specially old here - I'm a newbie too, but during the short time I've been a member here I've learnt a lot. I've been calmed down from all good information I've got from lovely and caring people all over the world. On this forum here is always a positive attitude and you get a lot of new friends who know exactly what you're going through, whatever stadium you're in (wait-and watch, pre surgery or post surgery). I'm sorry you have an AN, but this is a great place to get answers on a lot of questions so feel free to ask anything. Nothing is too much and nothing is too less.

Welcome and let me know if I can be of any help to you.

I live in Sweden.

Take care,

Helene
AN found in February, 2006, size 0,8 cm
Surgery 20th May, 2009, retrosigmoid approach
SSD and balance issues
Forever grateful to Dr Siesjo and Dr Kahlon, University Hospital of Lund, Sweden
Two AN:s found 1st March, 2016
Waiting for GK

empath

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Re: First Visit Here!
« Reply #5 on: December 21, 2008, 12:24:30 pm »
Thanks to all who have answered! You have been a BIG help. It is nice to know that you are out there!!  The AN is getting me so frustrated!! I am so used to "bustling" about  and due to the lack of balance I don't even go around the block alone!

Emp

aka Carol

wendysig

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Re: First Visit Here!
« Reply #6 on: December 24, 2008, 06:42:20 am »
Hi Carol and welcome,
Sorry to hear you have an AN, but as the others have said, glad you found us.  I think you'll find this forum to be a wonderful source of support and occasional hilarity. Please feel free to ask any questions -- we are here to support each other however we can.  As for making a decision regarding treatment, it is the hardest part of this journey and I wish you luck.  Research, research, research.  Once you make your decision, try not to look back and second guess yourself -- it can make you crazy.  With regard to your balance problems, my doc told me pre-op and post-op to do anything that challenged my balance.  Anything that challenges it also helps improve it.

Wishing you all the best,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Soundy

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Re: First Visit Here!
« Reply #7 on: December 24, 2008, 08:41:15 am »
Welcome ... as other have already said ...ANs are not nice but if you have to have one this is a
great place to come for support and information...good luck with what ever treatment you go with
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Tumbleweed

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Re: First Visit Here!
« Reply #8 on: December 24, 2008, 09:12:14 pm »
Hi, Carol:

So sorry you have had to join our club, but we're happy to have you.

Here is an excellent website that sums up your treatment options: http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm
Many doctors (and statistics) don't agree with the author's assertions that radiosurgery causes eventual deafness. But the information is otherwise good.

This points out how important it is to get a second (and third!) opinion about your treatment options. I got 6 opinions! :) And I found them all to be helpful, as they all steered me in the same general direction. That gave me confidence when it came time to be treated.

Good luck on your healing journey. We're more than happy to accompany you and give any support we can.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

 


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