Author Topic: ANOTHER NEWBIE  (Read 6265 times)

GARZAP

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ANOTHER NEWBIE
« on: April 02, 2009, 10:32:12 am »
DEAR FELLOW AN'ERS.

YES, I'M NEW, FROM MICHIGAN, I'VE BEEN READING ABOUT ALL OF YOU WONDERFUL PEOPLE AND YOUR STORIES FOR ABOUT A MONTH.  A LOT OF THINGS SCARED THE CRAP OUT OF ME, BUT ALL THE INFORMATION WAS/IS APPRECIATED AND GOOD INFORMATION.

MY STORY IS SIMPLE, I NOTICED HEARING LOSS (MY ONLY SYMPTON) WENT TO A CLINIC, TRIED HEARING AIDES.  LUCKILY THE WOMAN AT THE HEARING CLINIC WAS SUSPICIOUS ABOUT THE HEARING LOSS IN JUST MY LEFT EAR AND SENT MY HEARING TEST TO MY FAMILY DR.  HE CALLED ME AND SUGGESTED I SEE AN ENT.  THE ENT ORDERED AN MRI.  MY TUMOR IS 1.7cm x 1.9 cm.  THE ENT REFERRED ME TO A WONDERFUL DOCTOR IN DETROIT.  WE SCHEDULED SURGERY.  WHILE WAITING I DID EVEN MORE RESEARCH AND FOUND OUT ABOUT HOUSE EAR CLINIC.  I READ EVERYTHING I COULD FROM EVERYONE WHO HAD THEIR SURGERY THERE, MOSTLY ALL WERE POSITIVE. I FOUND OUT ABOUT SENDING IN MY MRI TO HOUSE, DID THAT.  IN THE MEANTIME THE DETROIT DOCTOR'S OFFICE CALLED TO CANCEL MY SURGERY BECAUSE MY DOCTOR HIMSELF HAD TO HAVE SURGERY.  I TOOK THIS AS A MESSAGE FROM GOD THAT HE WANTED ME TO COME TO CALIFORNIA.  SO FOLKS, CALIFORNIA HERE I COME!!  I AM SCHEDULED APRIL 14TH  7:30AM RETRO WITH DR FRIEDMAN AND HIS CREW.  THANKS ALSO TO THOSE OF YOU WHO WROTE ABOUT DR FRIEDMAN, IT HELPED MAKE MY DECISION, BUT I COULD TELL BY JUST TALKING WITH THIS MAN THAT HE WILL BE WONDERFUL.

I DO HAVE SOME QUESTIONS, MOSTLY ABOUT NON-SURGERY THINGS.  WE HAVE OUR FLIGHT, OUR ROOMS AT SETON HALL, ETC. ETC.  I WILL WRITE BACK AGAIN AFTER I'VE GOT ALL MY QUESTIONS WRITTEN DOWN.

THANKS TO EVERYONE FOR ALL YOUR STORIES.  TO THE GUY IN THE BLUE HAT...PLEASE PUT ME ON THE CALENDAR.  I'M NOT GOOD AT COMPUTERS AND IT TOOK ME THIS LONG TO FIGURE OUT HOW TO WRITE THIS.  YOU ARE ALL TRULY APPRECIATED, KEEP ME IN YOUR PRAYERS AS I WILL YOU.  THANK YOU.
Peggy
Less than 2 cm L AN discovered 02/09 on MRI due to noticed hearing loss.  No other symptoms.  Surgery 4/14/09 Drs. Friedman, Swartz, and Stefan of House Ear Clinic, LA,CA....my heros.  Retro surgery, no loss of hearing or facial nerve or any complications so far (ten days post op)

EJTampa

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Re: ANOTHER NEWBIE
« Reply #1 on: April 02, 2009, 10:38:24 am »
Welcome to the group Garzap!
 
I'm glad you found the information here helpful, and yes, the HEI in LA is top notch!  I'm sure others will be here soon to confirm what I have said.  Not only that, but there's a bit of a welcoming commitee there too! :)
 
Don't be afraid to ask questions.  Most of us have already been through what you are going through now.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

JerseyGirl2

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Re: ANOTHER NEWBIE
« Reply #2 on: April 02, 2009, 11:40:52 am »
Hi, Garzap,

I'm sorry you've been diagnosed with an AN, but hopefully you'll find this forum helpful.

My only symptom, like yours, was hearing loss, and I'm also fortunate that my local otolaryngologist was savy enough to immediately suspect an AN. I live in New Jersey and my doctor told me, "Go to House"; I had my translab procedure (and BAHA implant) in January 2008. I can assure you that you'll be in wonderful hands out there -- I would go back there in a heartbeat. (That being said, there are many, many wonderful acoustic neuroma surgeons and treatment places throughout the country, as I'm sure you've seen on this forum).

Best wishes as your surgery date approaches.

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

lori67

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Re: ANOTHER NEWBIE
« Reply #3 on: April 02, 2009, 11:48:41 am »
Hi Garzap and welcome!

The LA Welcome Crew has certainly been busy lately, but hopefully you'll be able to meet up with some of them when you're out that way.
Good luck and let us know what questions you have.  We've probably all had them too!

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.

Syl

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Re: ANOTHER NEWBIE
« Reply #4 on: April 02, 2009, 12:06:36 pm »
Welcome Garzap,

I hope you are more at ease now that you've made your decision to have retrosig done at House. That was one of the hardest parts for me in this whole AN journey.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

heyct

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Re: ANOTHER NEWBIE
« Reply #5 on: April 02, 2009, 12:06:53 pm »
Welcome to the group! I've found it very useful & supportive.

I was just wondering. I was thinking of getting another recommendation from House (I'm consulting @ Stanford in a couple weeks). The gal on the phone just said to pick a doctor & send my MRI & other info. My first impulse was to pick Dr. Brackman, since he seems to be the lead there. Did you pick Dr. Freidman? or was he referred?

Carolyn
Diagnosed 2/09
9 x 6mm
Translab Surgery: 5/20/09, Stanford..it was a Hemangioma!
Almost complete removal, will have to do update MRIs.
BAHA Ponto Pro 5/9/11

cindyj

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Re: ANOTHER NEWBIE
« Reply #6 on: April 02, 2009, 12:12:48 pm »
Hello and Welcome!  I'm a House/Dr. Friedman translab patient.  My surgery was in Nov and I'm doing very, very well.

There are many of us (House patients) here and most of us did have to fly out there, book rooms, etc.  Where are you?  Feel free to ask away and/or PM me or any of us, for details.

We'll help in anyway we can!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

leapyrtwins

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Re: ANOTHER NEWBIE
« Reply #7 on: April 02, 2009, 12:42:47 pm »
Hi and welcome Garzap.

I realize your surgery is already scheduled - and I'm not questioning your choice of House at all - but I wanted to point out that the Michigan Ear Institute is an excellent facility for treating ANs.  From what I understand, it is #2 behind House.   So for all you newbies and watch & waiters in Michigan who want to save on airfare, stay close to home, etc., check out Michigan Ear.

Good luck with your surgery Garzap - I'm sure the guy in the blue hat (aka Steve) will put it on the calendar for you.

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: ANOTHER NEWBIE
« Reply #8 on: April 02, 2009, 01:46:59 pm »
Hey Garzap and WELCOME!
 
I didn't go to House but it has a wonderful reputation.  I have told my hubby that if anything ever happens again - get me to California!!  Plus, I want to meet the Welcome Wagon out there!

Good Luck - we are here for YOU so ask away!!

K
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!

Jim Scott

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Re: ANOTHER NEWBIE
« Reply #9 on: April 02, 2009, 01:48:46 pm »
Hello and welcome, Garzap:

An acoustic neuroma diagnosis is never desirable but I'm pleased you were able to find us and join, even if it is out of necessity. 

You have a relatively small AN and your choice of the House Ear Institute is certainly valid, even if it means a 4000 mile roundtrip.  Our AN Treatment Calendar maven, Steve (the guy in the blue hat) would be happy to accommodate your request, I'm sure, but I beat him to it.  You're on the calendar.  :)

For someone not good with computers, you did just fine.  Try to remember not to press the 'Caps Lock' key when you post, as posting in ALL CAPS is considered 'shouting' and unnecessary.  Thanks.  :) 

We'll be looking forward to your future posts.

Jim
« Last Edit: April 02, 2009, 01:53:08 pm by Jim Scott »
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.

GARZAP

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Re: ANOTHER NEWBIE
« Reply #10 on: April 02, 2009, 03:16:14 pm »
Thank you Jim for doing the Calendar.  As for the caps, I know it's shouting, but I just think it's easier to read.  I do it at work too   :)

Carolyn, I picked Dr. Friedman because of the good things people wrote about him on this forum.   In the search line I think i put "house"  and read every thing there!!!

Thanks for the tip about Michigan Ear institute....wish I'd have known.   We will enjoy the warm weather in California, and the round trip non-stop air fare was very reasonable...  We were in San Diego a few years ago for my son's graduation from USMC. 

Oh, and my name is Peggy.  Thanks folks for your support. 
Peggy
Less than 2 cm L AN discovered 02/09 on MRI due to noticed hearing loss.  No other symptoms.  Surgery 4/14/09 Drs. Friedman, Swartz, and Stefan of House Ear Clinic, LA,CA....my heros.  Retro surgery, no loss of hearing or facial nerve or any complications so far (ten days post op)

sgerrard

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Re: ANOTHER NEWBIE
« Reply #11 on: April 02, 2009, 04:08:23 pm »
TO THE GUY IN THE BLUE HAT...PLEASE PUT ME ON THE CALENDAR. 

Hi Peggy. Welcome to the forum. You can call me Steve. :)

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.

GARZAP

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Re: ANOTHER NEWBIE
« Reply #12 on: April 02, 2009, 04:45:38 pm »
Hey Steve, love the hat!!!
Peggy
Less than 2 cm L AN discovered 02/09 on MRI due to noticed hearing loss.  No other symptoms.  Surgery 4/14/09 Drs. Friedman, Swartz, and Stefan of House Ear Clinic, LA,CA....my heros.  Retro surgery, no loss of hearing or facial nerve or any complications so far (ten days post op)

Jim Scott

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Re: ANOTHER NEWBIE
« Reply #13 on: April 03, 2009, 12:27:22 pm »
Peggy ~

Now you've done it! 

Telling Steve you like his hat is tantamount to placing an order.  He skillfully knits them and seems to work 24 hours a day, because he's knit and graciously sent many members a hand-kitted hat of their own.  Everyone seems extremely pleased.  Expect a package any day now.  ;)

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.

kathylittlejohncobb

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Re: ANOTHER NEWBIE
« Reply #14 on: April 03, 2009, 02:37:32 pm »
Hi Peggy!
I'm also a House alumnus, and like some others have said, would go there again if the need arose.  I had Dr. Friedman and Dr. Schwartz, and can not say enough good about them.  Seton Hall, next door to the hospital (St. Vincent's) is a great guest house for when you are released from the hospital.  It is very cozy and the rates are extremely low.  There are even kitchen/dining facilities and a tv/movie room.  Be sure to visit the Seton Hall museum section for at least a few minutes, too.  Call ahead to make your reservations.
And when you are able to get out, go to the Farmers' Market.  Madeline's is a neat French restaurant there, by the way.
The best to you!  Scary though your journey may be, you will be in the best of hands at House.
God bless you,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

 


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