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Oceana

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« on: July 13, 2010, 10:29:36 am »
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« Last Edit: July 26, 2010, 11:09:43 pm by Oceana »

Mickey

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Re: 'Watch and wait' or CK?
« Reply #1 on: July 13, 2010, 11:11:28 am »
Your a very young person. This has its advantages no matter what you decide. With today`s technology picking the right doctors will probably the the most important thing you`ll need to do and come up with your best choice. At my age 59 and size of AN approx.12x.06 when diognosed it shurely gave me an option to W+W. 3 yrs. later I`m doing fine with next mri next month. Stay on top of things "research" and all will come to you to make that decision. Everthing is going to be alright! Best Wishes, Mickey

Lizard

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Re: 'Watch and wait' or CK?
« Reply #2 on: July 13, 2010, 11:23:19 am »
Oceana,
Welcome to the forum  :)
The decision of surgery vs radiation vs watch and wait for you will be tough, due to your symptoms and the size.  You do need to get in with a good doctor as Mickey said, one who has LOTS of experience with ANs, this is VERY important! You will want to be in very capable hands...
 I can't see why it would hurt to W&W for now, get another MRI in 6 months and go from there.  But you must understand that this is a personal choice and you have to go with your gut.  No Dr will make the decision for you.  I was 27 when I was diagnosed and had the AN out via retro soon after my 28th birthday, so I know just where you are. 

Fortunately for you, you have already found us and this great wealth of information contained inside these cyber walls, so make sure you do your homework. 

Please keep us posted and feel free to PM me if you like.  I'd be more than happy to talk to you.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: 'Watch and wait' or CK?
« Reply #3 on: July 13, 2010, 01:02:13 pm »
Hi, Oceana - and welcome.

I'm sorry you've been diagnosed with an acoustic neuroma and have to make some tough decisions, but we'll try to help and support you. 

I'm not a doctor and cannot offer 'medical' advice but my uneducated opinion is that because your AN is relatively small you have the option of waiting another six months and having a 'fresh' MRI to determine whether the tumor is stable or growing.  ANs can remain stable - not grow - for years, in some cases. However, should the next MRI show signs of tumor growth, you'll be back to 'square one' where a treatment decision is necessary.  In that case, you'll have to weigh your options; the benefits and risks of surgery versus radiation and how you feel about each procedure.  Some people just want the unwelcome 'visitor' (the AN) out of their head and others want to avoid invasive surgery at all cost and so, opt for radiation, which is usually quite successful.  Although no one can make this decision for you, as Liz ('Lizard') stated, waiting six months and having a second MRI to assess the condition of the AN seems eminently reasonable.

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.

free2be

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Re: 'Watch and wait' or CK?
« Reply #4 on: July 13, 2010, 02:00:23 pm »
Oceana,

I'll offer my 2 cents only because I have been in watch and wait for over 1.5 years, but now face a treatment decision because my AN has grown. IF my tumor we not nearing my brain stem, I would opt to W&W a little longer, but now don't feel comfortable doing that. One thing can say is that you have found this valuable forum that could take you weeks to read if you chose to. It has helped me tremendously just understanding what others have gone through, chosen, and how they've done. All treatments have potential side effects but so does W&W if it grows or your symptoms worsen. And, as someone on the forum said, whom I cannot give credit to because I'd never find it again: we are all in W&W whether before or after treatment because follow up MRIs will be necessary even after treatment. But, that's only helpful if W&W in itself worries you. It didn't bother me a bit; I was glad to do it as long as my doc was okay with it. He isn't now, but I'm getting other opinions especially on treatment, which reiterates what others have said: get or find other opinions and doctors that are very experienced treating ANs. You'll find lots of names mentioned on the site.

I'm glad you found the site and I wish I had found it and done more research 6 months ago when I wasn't in a need to do something situation.

Best,
Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

suboo73

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Re: 'Watch and wait' or CK?
« Reply #5 on: July 15, 2010, 04:37:24 am »
Oksana,

Hi!  And welcome to the club that nobody wants to join... :o
I am here with my sister, and we are both W & W.

As someone has already pointed out, you are very young and have lots of options including W & W - none of these options are without risk...
However, you have this Forum, with all the WONDERFUL folks who can relate their experiences to you.

Making any treatment decision is tough.  Keep doing your research, and when you need it, take a break - the information can be overwhelming!

All my thoughts and prayers are with you.

Fellow W & Waiter,

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

moe

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Re: 'Watch and wait' or CK?
« Reply #6 on: July 15, 2010, 07:58:36 pm »
Hi!
Also extending my welcome ;)
Great advice from everyone. Surgery was my only option, so I didn't have to  mull  over the choices which I'm sure is stressful.
So keep us informed, we care :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

 


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