ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: GARZAP on April 02, 2009, 10:32:12 am

Title: ANOTHER NEWBIE
Post by: GARZAP 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.
Title: Re: ANOTHER NEWBIE
Post by: EJTampa 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
Title: Re: ANOTHER NEWBIE
Post by: JerseyGirl2 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)
Title: Re: ANOTHER NEWBIE
Post by: lori67 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
Title: Re: ANOTHER NEWBIE
Post by: Syl 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
Title: Re: ANOTHER NEWBIE
Post by: heyct 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
Title: Re: ANOTHER NEWBIE
Post by: cindyj 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
Title: Re: ANOTHER NEWBIE
Post by: leapyrtwins 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
Title: Re: ANOTHER NEWBIE
Post by: Kaybo 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
Title: Re: ANOTHER NEWBIE
Post by: Jim Scott 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
Title: Re: ANOTHER NEWBIE
Post by: GARZAP 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. 
Title: Re: ANOTHER NEWBIE
Post by: sgerrard 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
Title: Re: ANOTHER NEWBIE
Post by: GARZAP on April 02, 2009, 04:45:38 pm
Hey Steve, love the hat!!!
Title: Re: ANOTHER NEWBIE
Post by: Jim Scott 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
Title: Re: ANOTHER NEWBIE
Post by: kathylittlejohncobb 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
Title: Re: ANOTHER NEWBIE
Post by: mimoore on April 03, 2009, 03:04:32 pm
Welcome Peggy,
We are here for you.. lean on us. Ask lots of questions.
Hugs Michelle  ;D
Title: Re: ANOTHER NEWBIE
Post by: GARZAP on April 04, 2009, 05:02:18 pm
Thanks Kathy, yours was probably one of the stories that led me to confirm with House, and Dr Friedman.  I can't say how much I appreciate this forum.  Nobody wants this to happen to them, but if it has to happen, we all want the best care.  I really appreciate the tips about the restaurant and the flea market, we will try to go if I'm up to it. 

If anyone else wants to offer advice about things to do post-surgery it would be appreciated.  Has anyone gone on the LACity tours?  We were thinking about trying to do the 5 1/2 hour tour they offer. 

We have reservations at Seton Hall.  Do the bathrooms there have showers?  Also, I heard that there is no pharmacy on sight...does anyone know how far away one is??  We won't have a car.  How much $ are taxi's??

I'm now at the point where I just want to get this over with, and hoping for the best outcome.  I will write here about my surgery so that others can make their choices.  Thanks again to all of you.

Title: Re: ANOTHER NEWBIE
Post by: cindyj on April 04, 2009, 06:32:37 pm
Hello again - yes, Seton Hall has showers - they even have shower chairs you can put in there.  If there's not one in your room when you arrive, just ask for one.  I actually had to switch rooms and the second one we were in had a built-in seat in the shower. 

There is a pharmacy right in the House Clinic building which is directly across the street from the hospital - very convenient.

Know just what you mean about being ready to just get going and get it done!  Once the decision was made and the surgery date set, I was quite ready to be done with it all.  You'll be a postie, though, before you know it.  We arrived in LA two days before surgery in order to be able to tour the town the day before pre-op appointments.  I had the unbelievable privilege of being accompanied by one of our very own forumites, Nancy (NL), on a tour of LA. Hollywood, various attractions in between and on out to the Pacific.  Was SO great!  Hopefully, you'll be able to catch up with some of the LA folks - they usually at least try to meet up w/ people on their pre-op day in the St. Vincent's cafeteria. 

Best to you,

Cindy
Title: Re: ANOTHER NEWBIE
Post by: kathylittlejohncobb on April 05, 2009, 01:21:51 pm
Hi again Peggy,
If you can, I would recommend renting a car while you are in L.A.  Parking should be either free or low cost to you while you are at the hospital & at Seton Hall.  This way, whoever is with you will have transportation if they feel the need to "get away" for a quick meal somewhere other than the hospital/Seton Hall; they can even pick up a few groceries or whatever, to fix at Seton Hall.  At one point while I was in the hospital, I URGED my husband & sister to go out to dinner....two reasons...one, they needed to be away from the hospital for a while....two, I needed them to be away for a while!  ;D
Also, when you are at the guest house & able to get around town a little, having the car will be a blessing.  You & your loved ones can get around and see things like China Town, go to places farther away than you would in a taxi, see the ocean, etc.
Wishing you the best experiences possible during your AN journey,
Kathy
Title: Re: ANOTHER NEWBIE
Post by: OTO on April 06, 2009, 08:38:31 pm
GARZAP

There is a pharmacy in the House Clinic building and one in the St Vincent's Physician Office Building.    The problem will be on what time and day you get discharged from the Hospital.  They give you the prescriptions as part of your discharge paper work (for me it was painkillers, anti-naseua and sleeping pills).   I got discharged on saturday around 4 p.m. so both of them were closed.    My father asked the nurses, and they pointed him to a Rite-Aid pharmacy that was open.  However, it was a good 30 minute walk (one way)...   My father took the walk, while I slept.

While recovering most of the time we ate in the Hospital cafeteria, but that got boring.   When I could we would walk to a nearby Thai/Chinese restaurant, and one or two fast food type places.   Burger King is right across from the Hospital (I did have a craving for milk shakes).    The TV channel selection isn't that great and the video tapes in the TV room are dated....  however, it was good enough for me, because I slept most of the time...

Title: Re: ANOTHER NEWBIE
Post by: suboo73 on April 07, 2009, 03:36:58 am
Hi Peggy,  Here's another big 'welcome' to the forum from me!  (But sorry you had to join this club!)
I have selected W & W for now, so i don't know much about surgery....  Sounds like you will go to very experienced docs, and that's what i would do!

My thoughts and prayers are with you now and through your surgery.
Please keep us posted on your progress.

Sincerely,
Sue
Title: Re: ANOTHER NEWBIE
Post by: NL on April 08, 2009, 01:21:34 am
Hi Peggy,

Welcome to the forum from another House alumni!

I also had a retro with Drs. Friedman and Schwartz eight months ago and am doing great - you have a great team!

As Lori and Cindy mentioned, David (LADavid), Lainie and I all live in the LA area and all had our surgeries at House. We try to meet with others traveling to House for their surgeries to answer any questions or just give them a proper LA welcome. If you'd like to meet, please send me a PM and we'll set something up. If you have a tight schedule, we can always meet you for a quick lunch on your pre-op day at one of our usual spots - the St. Vincent's cafeteria.  :)

Sorry for the reason you joined the forum, but you couldn't find a better place to get lots of answers and incredible support.

All the best,

Nancy L