Author Topic: Fuzzy World Week Update  (Read 5561 times)

LADavid

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Fuzzy World Week Update
« on: March 30, 2009, 01:45:36 am »
So let's see if this works.  Based on Steve's suggestion for a follow-up to the week's events, I thought I try this to see how it works. Here's a thread for all you Fuzzy Week patients to post your updates.  So this is for you Debbie, Joe, Anissa, Sue, Wendy and, oh yeah me.  Let's post our results.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

wendysig

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Re: Fuzzy World Week Update
« Reply #1 on: April 03, 2009, 05:54:56 pm »
Today was my BAHA Gotcha Day.  This morning when I left for Dr. Choe's I was feeling kind of emotional.  After all the posts here about BAHA and slightly differing opinions, I was hoping my expectiations were not set too high.  This has seemed like such a long wait, although many of you have waited longer, I was afraid of being disappointed after all, in spite of being blown away by the demo.  I wondered if, after all this time, I could have remembered it being a lot better than it actually would be.

I was worried about nothing -- I LOVE MY BAHA!!!  It is everythng I thought it would be and more and I'm sure it will just get better!  I did notice that if I plug my left (hearing ) ear, the sound from BAHA does sound a little tinny, kind of like talking over the phone with a slightly less than perfect connection.  But when my left ear is not plugged, it just enhances everything I hear, with the added benefit that I can now hear sound from my right too!! ;D ;D   It will take a little getting used to the idea that all hearing is taking place on my left, but even in a noisy situation, I found I can hear even better than I'd hoped.  I tagged along for my daughters' dance class today and a couple of the other mothers were in the reception area too, plus some girls from the next class came in and were waiting in the reception area.  With the music blaring from the dance studio (very loud), the kids from the next class making a fair amount of noise and  two other conversations going on, I still was able to hear the women I was talking to without much trouble.  I'm happy to say that BAHA exceeded my expectations by quite a bit.   

To anyone considering BAHA but afraid because of the surgery, don't be.  Although BAHA is not for everyone, don't be put off merely by the prospect of surgery.  The surgery was truly a piece of cake and the end result, for me, was well worth whatever discomfort I experienced. BAHA ROCKS! :D :D :D :D :D

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

saralynn143

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Re: Fuzzy World Week Update
« Reply #2 on: April 03, 2009, 06:02:56 pm »
Wendy, that is such great news to close out the week! Enjoy the weekend, and keep us appraised on new improvements.

Best,
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

JerseyGirl2

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Re: Fuzzy World Week Update
« Reply #3 on: April 03, 2009, 06:36:59 pm »
Wendy,

Congratulations on your BAHA! I'm so glad that you like it -- mine continues to be a big help and I'm glad I've got it.

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

EJTampa

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Re: Fuzzy World Week Update
« Reply #4 on: April 04, 2009, 09:58:24 am »
Wendy,
 
Congratulations on the baha!  I'm so glad you the final result met or exceeded your expectations!  I'm still getting used to SSD and prefer to go a while without an aid to see how I adjust.
 
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.

anissa

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Re: Fuzzy World Week Update
« Reply #5 on: April 04, 2009, 10:09:49 am »
Wendy, I am so happy for you and your BAHA!!!  I was able to try it out at my ENTs office the other day and it was really neat!  I hope you continue to love it always.  Congrats on the big wait, it must've seemed like forever! 
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Jim Scott

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Re: Fuzzy World Week Update
« Reply #6 on: April 04, 2009, 01:36:29 pm »
Wendy ~

Allow me to add my congratulations on your finally getting your BAHA and the fact that it met your admittedly high expectations.  As you stated, although the BAHA isn't for everyone, it sure is a great help to those who need and want it.  I know you'll thoroughly enjoy the new world of enhanced hearing now open to you.  :)

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.

nteeman

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Re: Fuzzy World Week Update
« Reply #7 on: April 04, 2009, 01:51:40 pm »
Wendy,

I'm so glad the BAHA is all you hoped for and more. I hope we have another luncheon here in the NYC area and I can sit and talk to you about it.

Cheers,

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

Debbi

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Re: Fuzzy World Week Update
« Reply #8 on: April 04, 2009, 02:44:50 pm »
Wahoo, Wendy!!  I am so thrilled for you!  I want to sit on your BAHA side at the next lunch!!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

stoneaxe

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Re: Fuzzy World Week Update
« Reply #9 on: April 04, 2009, 03:53:42 pm »
I'll find out Monday 4/6 when my "tube of gloom" appointment is. Hard to believe its been 5 years. Checking to see if the growth that showed up last spring and fall was for real and has continued or an anomaly.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
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wendysig

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Re: Fuzzy World Week Update
« Reply #10 on: April 04, 2009, 05:52:00 pm »
Hi Sara and Catherine -- Thanks for your good thoughts and wishes.  I really do love my BAHA and will be positng pictures in the next day or so!

Ernie -- You are so newly past surgery I don't blame you for wanting to wait.  Also, according to my doc if the BAHA surgery isn't dont at the time of AN surgery you have to wait four months anyway.  I hope SSD proves easy to deal with for you, but as I'm sure you've read many times, the BAHA surgery is a piece of cake, especially compared to AN surgery.  My husband and I went to lunch after we left the hospital and I felt fine.

Jim - Thanks for your good wishes.  I know you adjusted very well to being SSD, as do many people, as I said, I know BAHA is not for everyone.

Anissa -- I have to apologize -- I'm not sure if I check in to see how you were doing after your surgery.  From the fact that you have posted here, I would guess that you are doing very well, which I am very happy to hear.  Wishing you continued good healing.

Neal, Debbi and I are thinking May might be a good month for another get together, but nothing definite yet.  I'll be happy to talk to you about BAHA than and answer any questions you have now too, if you'd like.

Debbi -- I'll be happy to have you sit on whatever side you choose since I can now hear on both sides again!  I'll give you a call tomorrow if that's good for you and we can dsicuss BAHA and our next New York/New Jersey get together!  I'm hoping to post pictures of me and  my new addition in the next day or so!

Stoneaxe -- Hope your journey into the "tube of gloom" is uneventful and you get good news.  I actually have found it's a great place for a short nap!   :)

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

suboo73

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Re: Fuzzy World Week Update
« Reply #11 on: April 05, 2009, 07:21:43 am »
David & Steve - Hi!  Thank you for providing this space for our updates.  I wasn't sure where to post, so this is great!

To all in the Fuzzy Week - i look forward to hearing your news, hoping all is well for David, Joe, Debbie and anyone else i missed.
So far, i see that Wendy is LOVIN' her BAHA - congrats!
Anissa has come thru surgery and posting already - fantastic!

Stoneaxe - i will be thinking of you tomorrow as you find out about your next MRI appointment.  Hope all is well and your trip thru the 'tube' is uneventful.
---------------------------
Now here is my update:

We took off Friday for UVA and the 6 month MRI.
The doctor looked at the MRI images, measured the longest side of the tumor and concluded it was somewhere between 10mm and 10.7mm.  (Original measurement was 9mm)  Now, keep in mind, i had the first MRI in my hometown, so i anticipated some potential slight differences in measurements - as i understand it, one mm is the 'margin of error" anyway.  So - the doc concluded 'no major change' and said he will definitely be more interested in the one year MRI, which i will probably do in Dec (and take advantage of the insurance deductible!)

Knowing that i had to face the 'tube of gloom,' i decided to plan a vacation before facing it.   I have been most fortunate to have just returned from a week's vacation.  It was fantastic!  Tortola, BVI [British Virgin Islands] - 75-83 degrees every day, we never used A/C, worked on starting a nice tan, and enjoyed plenty of drinks called "pain killers!" (That is 2 types of rum, pineapple juice and coconut milk!)  The flights were smooth, and the ferry ride from St. Thomas (USVI) to Tortola was lovely! 
I will try to post some pics later - our internet at home was messed up when we returned, and we just have it up and running as of yesterday.

Thank you to everyone for being so caring.  What a wonderful place this is.
Sincerely,
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

EJTampa

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Re: Fuzzy World Week Update
« Reply #12 on: April 05, 2009, 07:25:30 am »
and enjoyed plenty of drinks called "pain killers!" (That is 2 types of rum, pineapple juice and coconut milk!)

Now that sounds like a good pain management program!  Were those prescription strength or OTC? :)
 
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.

suboo73

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Re: Fuzzy World Week Update
« Reply #13 on: April 05, 2009, 07:31:06 am »
Ernie,  Hi!  The one's at Pusser's were definitely prescription strength - WOW!  My husband didn't want to rent a car (and drive on the left) - though 'Captain Deb' offered to be our guide (!) - so at least when we thought we had indulged in enough pain management, there was a kindly taxi driver willing to take us 'home.'  This trip comes HIGHLY recommended to all!

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

wendysig

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Re: Fuzzy World Week Update
« Reply #14 on: April 05, 2009, 04:30:13 pm »
Sue -

I'm glad to hear you had a great vacation and got good news regarding your MRI -- hopefully, you will get good news again in December!  I'll have to see if I can concoct a painkiller at our next party -- they sound deslish!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!