Author Topic: Milestones!  (Read 4849 times)

lori67

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Re: Milestones!
« Reply #15 on: April 06, 2009, 02:52:29 pm »
Kathy -

That is great news!  Seems like it was a long time coming!

Around here, we think you're perfectly normal - old normal, new normal...whatever!   ;D

The old good ear to the pillow trick works wonders!

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.

Pooter

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Re: Milestones!
« Reply #16 on: April 06, 2009, 03:06:50 pm »
That trick is great for tuning out kids in the morning also.. Until they come and jump on you in bed that is.  ;)

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: Milestones!
« Reply #17 on: April 06, 2009, 09:02:47 pm »
Hi Kathy,
I agree with Donnalynn about the music. I play piano and lead an instrumental ensemble at my church. They all stand on my left (AN side). I thought that would be so difficult, but it's working out alright. Things sound differently and sometimes echo-y acoustics may me feel tipsy, but I'm able to deal with it. My hearing was shot for months anyway so the SSD adjustment wasn't a total shock. Actually, the ringing has since gotten better. We have made some recordings and when I'm in the studio trying to help 'mix' I feel like that's a joke sometimes since you depend on hearing the music all around. Oh well, we have a great engineer ,thankfully.
I"m hoping a BAHA will help eventually - waiting for that a few months down the road.
I wish you well.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Kathy M

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Re: Milestones!
« Reply #18 on: April 07, 2009, 07:38:09 am »
Hi DonnaLynn and Keri!!!  Thanks for sharing how music is part of your life with me.  I can't imagine my life without it, and I will never give up on it....just miss the fullness of it all.  I am so anxious to know how the hearing devices work for you.  After all the problems I've had with surgery, the BAHA doesn't sound like much fun right now, but I think that could change when I get a little distance from all of this.

Before surgery, I vowed to my family (and ensemble members) that if I couldn't play clarinet again after surgery, I'd figure out a way to continue with the band....the percussion section can always use players!  BUT...thankfully....I will be in the clarinet section with the first downbeat of our community band (my daughter plays clarinet too, so we can still play duets!!! yay) 

Thanks again...keep playing and directing!!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Keri

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Re: Milestones!
« Reply #19 on: April 07, 2009, 08:31:58 am »
Hi Kathy,
I'm sure it's a musician thing - i think like you do. I've thought if something ever happened to me to prevent me playing piano, I'd do percussion, or hammered dulcimer (I have one; just don't practice it enough). Anyway, you have to do SOME kind of music! I think it's great you play with your daughter. My daughter plays flute and we've played together some - need to do that more.
I'm putting off the BAHA as well. At first , (pre surgery) I thought I just couldn't get one fast enough. Now that  at 2 months post op my scar still hurts a bit, I can wait. Still adjusting anyway. And maybe by the time I (or we) get one, it will seem great in comparison to what we've grown accustomed to for a long time. Then again, sometimes I don't want to get my hopes up too much!
I haven't been to a symphony orchestra concert post op - I'm sure I'll miss the surround sound experience of that.  But hopefully, eventually the BAHA will help that as well.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

wendysig

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Re: Milestones!
« Reply #20 on: April 07, 2009, 05:16:55 pm »
Hi Kathy,

It's wonderful to hear all your great news and about the milestones you've reached.  It sounds like life is getting back to "normal" at last.  As for plastering your good ear against the pillow at night, I do that too.  I sleep better than I have in years!   :D

Sending wishes for continued good healing,
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!

moe

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Re: Milestones!
« Reply #21 on: April 07, 2009, 05:33:32 pm »
So happy to hear the good news, Kathy. :)
I understand about counting your blessings, but missing what used to be. It takes time.
And it's still OK to get frustrated/mad.
I was feeling mad and mourning my loss of smile, and am determined to get some of it back. It may take another year.
I see people who don't smile when they should be and I just want to say SMILE! What I wouldn't give to smile!
Just found my cell phone. Kept calling myself, but with SSD, it was very hard to locate it under a paper. :-\
Take care,
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

cherrypiper

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Re: Milestones!
« Reply #22 on: April 08, 2009, 08:53:22 pm »
 :) :)excellent.................yes as my local AN support group tells me, i'm in pretty good shape. i cant see it sometimes but they and my wife can.

wonderful positive news !!!!!!!!!!!!!! i lost 14 pounds at my surgery and 5 pounds to weeks later as well due to complications, but its a hell of a way to lose weight   LOL.
10 mm x 2.4mm surgery date 12/03/07

glad to be here

leapyrtwins

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Re: Milestones!
« Reply #23 on: April 09, 2009, 05:59:56 am »
Kathy -

don't give up on your iPod just yet.  There is an amazing - and cheap - solution called a Mono plug adapter (or at least that's what I call it).  You can pick one up at Radio Shack - or I think someone said Amazon.com   

The mono plug adapter takes stereo sounds that usually come out of two ear plugs and puts it into one ear plug.  In effect, lets you hear stereo in one ear.

I purchased my mono plug adapter and a single ear plug at Radio Shack over a year ago for about $6.50 and I'm very happy with the sound.

I also have a car adaptor for my iPod that plugs into the cigarette lighter and the sound I hear is excellent.  My BAHA has certainly helped with the car sound, but even before I bought it I could hear my iPod very well.  The car adapter cost me about $40 at JC Penneys, but you can get them lots of places.

Congratulations on being infection free - finally!  Now there's a milestone!!!  ;D

Jan
« Last Edit: April 09, 2009, 06:28:41 am by leapyrtwins »
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

Kathy M

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Re: Milestones!
« Reply #24 on: April 09, 2009, 06:45:39 am »
Thanks, Jan, for the tip! I'm going to check out the adapter today.

Congrats on the weightloss, cherrypiper!!!  I'm down a size (15 pounds) and decided this was the catalyst I needed to get myself into shape - I'm 48 now, and I am determined to be in the best possible shape by my 50th birthday.  After all this, we deserve that, right???????    You're right - a heck of way to lose weight, but whatever the reason, I'm kinda liking the results!
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Kaybo

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Re: Milestones!
« Reply #25 on: April 09, 2009, 07:17:33 am »
Kathy~
Please let me know what you find out about the mono plug - I went to Radio Shack for one & they looked at me llike I had horns!  They tried to sell me a Bluetooth!! ???

I lost 50 pounds when I had AN surgery - I was ALWAYS on the bigger side (In fact, when Dave's sister was telling him about me & he kept asking what I looked like she kept saying, "She has a GREAT personality (aka: not wanting to say FAT!)!"  When she tolld me about him, she said "He's older & losing his hair!" - I would rather have a "great personality!"- we still joke about it!)  In fact, when I moved back to my hometown a few years later, everyone that knew me before was most surprised by my weight loss - NOT my face...or at least that is what they commented about! ;)  They would say, "You look so different (me thinking "hello...face?" and then they would say, "Haven't you lost a LOT of weight?"

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!

nteeman

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Re: Milestones!
« Reply #26 on: April 09, 2009, 07:26:23 am »
Kathy~
Please let me know what you find out about the mono plug - I went to Radio Shack for one & they looked at me llike I had horns!  They tried to sell me a Bluetooth!! ???

I lost 50 pounds when I had AN surgery - I was ALWAYS on the bigger side (In fact, when Dave's sister was telling him about me & he kept asking what I looked like she kept saying, "She has a GREAT personality (aka: not wanting to say FAT!)!"  When she tolld me about him, she said "He's older & losing his hair!" - I would rather have a "great personality!"- we still joke about it!)  In fact, when I moved back to my hometown a few years later, everyone that knew me before was most surprised by my weight loss - NOT my face...or at least that is what they commented about! ;)  They would say, "You look so different (me thinking "hello...face?" and then they would say, "Haven't you lost a LOT of weight?"

K

http://www.radioshack.com/product/index.jsp?productId=2102690&tab=summary
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

Kaybo

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Re: Milestones!
« Reply #27 on: April 09, 2009, 07:38:59 am »
Thank you Neal!  Why didn't I think of looking that up??  At least now I know what I am looking for - even if the sales people don't!

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!

leapyrtwins

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Re: Milestones!
« Reply #28 on: April 09, 2009, 11:37:38 pm »
Kaybo -

I was going to tell you I'd post a picture of my mono plug adapter and the ear plug, but Neal had an even better idea.  Thanks for the Radio Shack link, Neal  ;D

If you go to Radio Shack, Kay, look into the single ear plug also.  I really like mine.

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