Author Topic: The Journey Has Begun  (Read 8613 times)

Kiwi Don

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The Journey Has Begun
« on: October 05, 2009, 11:46:36 pm »
Hi to all the good folk out there, I have been been lurking in the background for several months now trying to gather information and get my head around this subject and I think I have finally found the right place, so a "BIG HI" from the not so sunny South Pacific, yes we do get snow (splenda) down here.
A quick background on me, joined the Navy in '74 left in '06, yeap it's short, I don't want to bore you, been most places, and go back to some.
Well my journey started 10 years ago with an MRI to try to find out why I had developed significant hearing loss in one ear, thankfully it was attributed as Noise Induced Hearing Loss, Too Many Noisy Bars While Overseas I suppose and nothing to do with the job, Yeah Right!!.
Anyway a couple of years ago I noticed I had developed tinnitus in my left ear, it was strange that it was at a lower frequency that my right, alarms bells should have started then, but no I let it go. Finally after complaints from "She Who Must Be Obeyed", off I went to the audiologist. After the new tests and reviewing my previous results it was not long before I was was back in the Clanking, Buzzing, Whirring Tube again, used the usual joke with the staff  after the scan "anything in there", the response was muted, second bell.
Yeap, I got a hell of birthday gift this year, the day after I turned 52 the news was out, an AN 20x19mm just touching the brain, and like most I didn't even know what an AN was, let alone what to do about it. Straight home and on the net, big mistake, the first sites I found were the "Doom and Gloom" Stories, then all the techy Data, forget the AN the brain was in overload. Took a week to sift the wheat from chaff, soooooo here I am, and once again "HI" 
Met my ENT Specialist three weeks ago have gone through the options, and due to see the Neurologist tomorrow so I thought it was time to come into the light.
Don't know how to finish this so I will leave it there, will post after the appointmet tomorrow.
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??"

sgerrard

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Re: The Journey Has Begun
« Reply #1 on: October 06, 2009, 12:17:11 am »
Hi Don,

Welcome to the forum. There a few gloom and doom stories, but there are lots of good outcomes too. In your size range the odds are pretty good that it will work out well. Things won't be quite the same as before, but the new you will still have lots of good living left to do.

Fill us in on the results of your first appointment. There are lots of people here who will offer information, suggestions, and support. Ask anything you like.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kiwi Don

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Re: The Journey Has Begun
« Reply #2 on: October 06, 2009, 01:18:14 am »
Thanks Steve,
I can now look forward to continuing the journey with support from afar.

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??"

tenai98

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Re: The Journey Has Begun
« Reply #3 on: October 06, 2009, 04:34:12 am »
Hi Don and welcome to our family
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

DR

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Re: The Journey Has Begun
« Reply #4 on: October 06, 2009, 05:46:10 am »
Don,

The good news is that you have found a great place full of warm, caring people.  And, as Steve mentioned, plenty of success stories to be shared.  Welcome aboard sailor!

- Dennis
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

leapyrtwins

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Re: The Journey Has Begun
« Reply #5 on: October 06, 2009, 06:43:06 am »
Hi, Don.  Welcome to the wonderful world of ANs - and to the Forum  ;D

You've got a great attitude and I love the quote in your profile!

I'm not a doom and gloom story - and there are numerous others here who aren't either.  I'm confident you came to the right place.

With an AN your size, radiation is still a possibility.  Do they do that where you are?  Or is your only choice surgery?

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

lori67

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Re: The Journey Has Begun
« Reply #6 on: October 06, 2009, 06:49:43 am »
Welcome from a Navy Wife, Don!  Noisy bars while overseas???? I'm sure my husband has no experience with that!   :D

I think you'll find very few doom and gloom stories around here - more like "we'll get through this together" stories.

Good luck with your upcoming appointments!  Keep us posted.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

CHD63

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Re: The Journey Has Begun
« Reply #7 on: October 06, 2009, 10:39:29 am »
Adding my welcome to you, Don .....

Sorry you found this Forum by way of having an AN, but glad you felt comfortable enough to post during the pre-treatment decision phase.

Even though I had a very positive, uneventful treatment and recovery, I lurked on this site for months, mostly post-treatment, and wished I had jumped in much sooner.  The current group of posters are for the most part up-beat and a terrific support!

My best wishes and thoughts as you walk this journey!

Clarice

Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: The Journey Has Begun
« Reply #8 on: October 06, 2009, 03:31:30 pm »
Hi, Don ~

Let me add my welcome and reassurance that while an acoustic neuroma diagnosis is no fun at all, the tumor is almost always benign and quite treatable.  Yes, some AN patients (surgery or radiation) have a tough time and some complications  - but many do just fine.  Some do very well.  I'm one of them - and I post here as an encouragement to folks like you that are just beginning their 'AN Journey'. 

As you've noticed, there's not much 'doom and gloom' around here.  Those are things to be conquered, not encouraged.  Mind you, we're totally supportive but we're realistic - not everyone does great - and we refuse to wallow in self-pity.  We encourage on a practical, realistic basis.  No sugar-coating of the 'dirty lowdown' (apologies to Boz Scaggs) but we celebrate even small victories and encourage patience and a positive attitude, which can go a long way when dealing with this particular benign tumor in our skull.   

I'm sorry you have to deal with an acoustic neuroma but pleased you found the ANA site and the forums.  We stand ready to inform, help and support you in any way we can, Don.  Thanks for taking the time to join and post.  I look forward to exchanging messages with you and following your personal AN Journey.

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.

leapyrtwins

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Re: The Journey Has Begun
« Reply #9 on: October 07, 2009, 07:29:52 am »
As you've noticed, there's not much 'doom and gloom' around here.  Those are things to be conquered, not encouraged.  Mind you, we're totally supportive but we're realistic - not everyone does great - and we refuse to wallow in self-pity.  We encourage on a practical, realistic basis.  No sugar-coating of the 'dirty lowdown' (apologies to Boz Scaggs) but we celebrate even small victories and encourage patience and a positive attitude, which can go a long way when dealing with this particular benign tumor in our skull.   


Don -

I couldn't have said this any better.  We use a lot of humor on the Forum, but we definitely don't "sugar coat".

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

Kaybo

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Re: The Journey Has Begun
« Reply #10 on: October 07, 2009, 08:57:58 am »
Howdy from Texas, Don!!
You have already received a great welcome so sit down & make yourself at home here!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

cin605

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Re: The Journey Has Begun
« Reply #11 on: October 07, 2009, 11:42:56 am »
Hi Don...Welcome.
I too found out on my birthday 42nd!Had mine for 10 years plus thinkin inner ear infections,then meniers disease.MRI showed
An.....two months later it was surgery.Its out.....its all gone.....No facial issues...Your in good company....take a seat.
I was thinkin the hearing issues were from the 400+ rock shows i attended from age 14 to 42!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Nani

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Re: The Journey Has Begun
« Reply #12 on: October 07, 2009, 10:07:16 pm »
Welcome!  Ever notice how the bad news makes more and faster appearances than the good?  Here's some good...We're all alive and working with it.
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

moe

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Re: The Journey Has Begun
« Reply #13 on: October 07, 2009, 11:04:43 pm »
Hi Don and welcome!
Yes we are for the most part "up beat", and some a little "beat up" but not letting it bring us down. :)
The support is tremendous, and we are there in good and bad times.
Tons of success stories. They then fade away, so a lot of the posts are those where little things creep back up, but nothing you can't handle.
What's it like down under? You should be getting ready for spring now?
Welcome again,
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

ppearl214

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Re: The Journey Has Begun
« Reply #14 on: October 08, 2009, 05:55:31 am »
Hi Don and welcome.  I see I'm late joining in on hello's but glad to have you here. Thanks for sharing the beginning stages of your AN journey and please keep us updated on how your appt goes.  As you've learned, we don't sugar-coat anything around here but.... the support is a major plus!  Everyone helpful and cheering you on.

Looking forward to further updates.  Hang in there.....

again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"