Author Topic: I didn't want to join this group!  (Read 5934 times)

moe

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Re: I didn't want to join this group!
« Reply #15 on: September 24, 2009, 09:48:13 pm »
Mike,
We're glad you joined this group. Lots of people in the wait and watch mode. Lots of good support, advice if you need it.
Once the shock wears off that you have this bugger near your brain, things will seem clearer. There is no rush in your decisions.
It's just dang inconvenient in your life I'm sure!
You have a small one so that is GOOD!
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

loose screws (tightened)

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Re: I didn't want to join this group!
« Reply #16 on: September 25, 2009, 03:46:21 pm »
WoW, I'm overwhelmed by the responses. Thank you all for your words they are worth a lot at this time.
--Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Jim Scott

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Re: I didn't want to join this group!
« Reply #17 on: September 25, 2009, 04:30:19 pm »
Hi Mike ~

I hope you can accept yet another welcome because I'm offering that - and an echo of the previous comments. 

The initial AN diagnosis then learning about the array of available treatment options, their risks and rewards, can be daunting, I know.  I suggest you take a few deep breaths and not push yourself to read everything available in a short time.  Fortunately, your AN is relatively small and that gives you breathing room, as it were. 

As you'll soon learn, both surgery and irradiation have their own, unique risks.  You'll read accounts of AN patients with really challenging obstacles following surgery or radiation.  You'll also read about AN patients who experienced very positive outcomes from either approach.  Then, there are the anomalies, such as folks like me that underwent AN de-bulking surgery (partial tumor resection) then, FSR (targeted radiation in small does, spread out over weeks).  I had an excellent outcome - almost no complications or resulting deficits.  However, I have to caution you, as I caution all 'newbies' (newly diagnosed AN patients) that one person's experience, be it with surgery or radiation - or both - and their outcome, be it good or not-so-good, is not an accurate indicator that should you choose the same form of treatment, you'll have a similar outcome.  This situation involves a level of risk.  Nothing can be guaranteed.  That's the hard part.  The good part is that you can count on our membership for information and suggestions based on real-life experiences.  We're eager to help and welcome the opportunity to respond as best we can to your questions.  Consider this your 'AN home'.     

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.

Sue

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Re: I didn't want to join this group!
« Reply #18 on: September 25, 2009, 04:47:21 pm »
Hi Mike and welcome.  Lots of great people on here and you are welcome to post your questions, thoughts, fears, frustrations and, heck, Holiday recipes if you want!  I likened getting the news of an AN to those old Road Runner cartoons.  You know...the coyote looks down the railroad track one way and nothing as far as the eye can see, and then he looks the other way, and ditto, nothing there.  Then he steps out to cross the track and BAM, he's smashed up against the speeding train, eyes wide open in terror and hanging on for dear life.  You can probably figure out the similarities!! LOL   ;D  At least I sure can.  From the speeding train you are dumped onto the roller coaster and then you will have a series of ups and downs as things progress and finally, hugging the ground for some stability in an ever changing world, you will be set free to live the rest of your life, a little wobbly, but eventually the road will be familiar again and you can go about your business with some reminders of this unique experience and knowing that you can always come here for information,  comfort, solace, support and yes, a few laughs.  I've found that ANer's can have a wicked sense of humor!!

Anyway, best of luck to you in your future treatment and eventual recovery. 

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

kimbo

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Re: I didn't want to join this group!
« Reply #19 on: September 25, 2009, 06:13:08 pm »
Hi Mike

I didn't want to join this group either - I just wanted to say hi from Australia and that there are members on the forum from all over.  Good luck in your research.  Signature below tells my story.

Kimbo :) 
Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

leapyrtwins

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Re: I didn't want to join this group!
« Reply #20 on: September 25, 2009, 09:12:27 pm »
Mike -

for radiation in CA, I was going to suggest Dr. Chang @ Stanford, but I see Steve beat me to it. 

As you say, House can be pro-surgery, but that makes perfect sense since they are the pioneers of AN surgery.

Whenever you go, whatever decision you make we're here for you.

Best,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Vivian B.

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Re: I didn't want to join this group!
« Reply #21 on: September 29, 2009, 07:22:02 pm »
Hi Mike,

Sorry I'm a little late in replying. I had been waiting for MRI results and was a little nervous and skipped a few days on the forum. I  am glad you have found this forum and you will see as you get adjusted to the idea of the new you, you will find that you will be o.k. with it and you will deal with it. There is lots of reading here to do that will keep you very busy.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Kiwi Don

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Re: I didn't want to join this group!
« Reply #22 on: October 11, 2009, 01:58:25 pm »
Hi Mike,
I have just joined the forum myself, and have found that there are a heap of wonderful suppotive people here with a great deal of knowledge.
All the best for the up coming  journey.

Don
24July09 Diagnoised with Left AN 2.0cm x 1.9cm
Translab Scheduled 7April10

"Received the Ticket, Boarded the Train, and now the Journey has begun??"