Author Topic: Fuzzy World Week Update  (Read 5427 times)

LADavid

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Re: Fuzzy World Week Update
« Reply #15 on: April 05, 2009, 08:51:01 pm »
Ah Painkillers.  I do sort of remember them well.  At least, I remember the first one -- the rest was sort of blurry after that -- including how my wife at the time and our friends got back from St Johns to St Thomas in what seemed like the middle of the night.

Good news, I have the recipe that I'll post once I finish the weekly update.

And as far as an update on my part.  A little background.  My PT and others have all been telling me that something can be done about my hearing -- miracles in medicine.  So I finally thought I'd give it a try and talked to my doctor at House -- who referred me to an Ear Doctor at House -- who confirmed -- there is nothing that can be done for my hearing.  Personally, I wish people would leave me alone and just let me deal with what I have to deal with.  I'm sure they mean well, but....
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

sgerrard

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Re: Fuzzy World Week Update
« Reply #16 on: April 05, 2009, 09:19:50 pm »
David,

I'm not sure what miracles of medicine they would have been talking about. I guess the answer you got doesn't surprise me, though. I think people don't get that there is a difference between an ear problem and an ear nerve problem.

Speaking of things that need fixing, I'm not sure if this update concept panned out. Maybe it is just getting a slow start? Anyway, Debbie posted in the fuzzy week topic that her MRI was clean, Joe posted recently following his successful surgery, and Anissa had a whole topic going with hourly updates the first day, and gabbed on the phone with a friend that evening, to the amazement of all. And you and Wendy and Sue did post here. So we are half way there. :)

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.

Keri

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Re: Fuzzy World Week Update
« Reply #17 on: April 05, 2009, 09:29:32 pm »
Liz had her 2nd surgery...

Whitney and Becky don't have AN's but are still being tested / treated to see what they do have..

I like the summary week idea too; I never know if I've missed important news about someone.
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

LADavid

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Re: Fuzzy World Week Update
« Reply #18 on: April 05, 2009, 09:34:02 pm »
Steve and Keri, I'm going to try it again.  It just needs some time to catch on -- I think.
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

suboo73

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Re: Fuzzy World Week Update
« Reply #19 on: April 06, 2009, 04:17:19 am »
David, 

I am so sorry things didn't work out with your hearing - if the docs read your medical records/history and understood your situation, i am surprised they pursued trying to 'fix' the hearing.  Sometimes, with the best of intentions, the docs are simply 'not correct.'  I bet you already knew all of this, so i am sorry you had to go thru all of this again.
----------------
But we also know your sense of humor lives on, and you will be ok!
----------------
Thanks for posting the 'painkiller' recipe!  The drinks are Pusser's were particularly good - we are not sure why yet - maybe more creamy?
After several, all seems better in the world!  We were grateful to have the warm breezes, a break from the routine and a beautiful place to relax.
Now i have to see if i can afford to return next year and visit all the places i didn't see the first round!
-----------------------
Wendy - thank you for the best wishes on the MRI!  The test was more annoying this time - should have taken the ear plugs, as well as the headset they gave me.
But worth the 'aggravation!'

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

Pooter

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Re: Fuzzy World Week Update
« Reply #20 on: April 06, 2009, 10:12:33 am »
Wendy,

Congrats on the BAHA!  I have to admit I'm somewhat jealous.  While I'm not sure if BAHA is the route for me (being a VERY closely shaven-head guy), but I have thought about TransEAR for a bit.  There are just too many situations where being SSD bites and makes life extemely difficult for me.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Keri

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Re: Fuzzy World Week Update
« Reply #21 on: April 06, 2009, 10:44:05 am »
Wendy,
I'm happy too that you're so happy with your BAHA! That's all a few months away for me, so I get very interested and hopeful when you all start talking about your experiences with your new and improved hearing.
Thank you for updating!
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

LADavid

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Re: Fuzzy World Week Update
« Reply #22 on: April 06, 2009, 02:56:46 pm »
And here's the recipe for Painkiller's -- which is a Pusser's Rum concoction:

4 parts Pineapple Juice
1 part Cream of Coconut
1 part Orange Juice
3 Parts Rum
on the rocks and sprinkled with nutmeg

I think it's the nutmeg that does something to make it sort of hallucinogenic (hmmm, I bet that's a first for the word on the Forum).
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

yardtick

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Re: Fuzzy World Week Update
« Reply #23 on: April 06, 2009, 04:50:36 pm »
David,

I could go for one of those "pain killers" right now!!!

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Keri

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Re: Fuzzy World Week Update
« Reply #24 on: April 06, 2009, 08:54:41 pm »
so will next week be "This week in the hallucinogenic world of AN?"!!
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

suboo73

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Re: Fuzzy World Week Update
« Reply #25 on: April 07, 2009, 04:07:17 am »
David,  Thanks for the recipe - i didn't write it down before i left Tortola, silly me!  ;D
What's worse is i got to the airport to buy my duty free Rum, and alas, it was sold out - jokes on me!
So i will have to find an alternate method for purchasing the Pusser's.

Anne Marie - enjoy this drink if you can, it is awesome!

Who will mix them in Chicago - oh my! 

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 #26 on: April 07, 2009, 07:26:59 am »
David -

I'm so sorry things didn't work out with your hearing.  I hope you finally got your hearing aid adjusted to your liking though and are finding it more helpful.  Thanks for the recipe for Painkillers.  I think we could all use one of those drinks once in a while!   ;D

Best wishes,
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!

Brendalu

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Re: Fuzzy World Week Update
« Reply #27 on: April 07, 2009, 10:03:12 am »
David,
I'm sorry there were no miracles for you.  Like you, I wish people would just leave me alone with their hearing advice!  Plus people really need to learn the difference between "hard of hearing" and deaf!  You are doing a wonderful job with these updates!  Thank you

Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Jim Scott

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Re: Fuzzy World Week Update
« Reply #28 on: April 07, 2009, 01:38:37 pm »
David:

The hearing aspect of having an AN seems to bring out good intentions in people based on a misunderstanding of the actual problem (damaged/cut hearing nerve) is frustrating.  I'm fortunate in that only a few acquaintances have suggested that I might want to "consider getting a hearing aid".  I usually respond to that comment with a tight simile and carefully explain that it isn't my ear that is damaged, it's the nerve.  I use the simplistic example of a lamp that has a working bulb, switch and so on but that has a broken electrical cord.  The result is that when you plug it in and turn it on, it doesn't light - because the cord is broken.  I say my ear is the same way.  The hearing mechanism is fine but the nerve that transmits sound from my ear to my brain doesn't 'work' anymore, thanks to the AN, so I'm deaf in that ear.  Most get it when I use that over-simplified analogy.  A few have had the dreaded 'glazed-eyes' syndrome during the 30-second explanation- but I didn't like those people very much, anyway.  :)

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.