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Author Topic: Newly Diagnosed  (Read 10503 times)

Kaybo

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Re: Newly Diagnosed
« Reply #30 on: February 20, 2008, 10:51:04 am »
Lore~
So is October 1st your b-day??????????
K
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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!

Glenda

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Re: Newly Diagnosed
« Reply #31 on: February 20, 2008, 10:04:21 pm »
Hmmm Lori - Oct 1st must be your birthday, I'll have to remember that  ;) 
My husband is disabled from a not so good experience at Duke so we do not want to go back there.  I, however have thought about Emory.  My husband has also been there and we were delighted with all the doctors that he saw.  Right now I am just trying to take my time and weigh all the options.

Thanks for all the comments, a special Thank You for "Special K"  for the pep talk.  I think you are one "Special" person and I only hope I can be half as courageous and positive as you are.  If you all haven't checked out K's blog be sure to look at it.  She has the most beautiful daughters (just like her)

Kate, I am not sure what my current hearing level is.  I was shown a chart and the right ear "AN side" was below the normal line and the audiologist said the type of hearing loss I had was typical of someone with my diagnosis.  I just know that several months ago I moved the phone to the left ear.  I remember clearly that day at work when I realised I could not hear well with my right ear.  I had been thinking it was the phone I was using.  The tinnitus is pretty bad and drowns out the high tones.  Also I am definitely going to send a copy of the MRI to HEI to get their opinion.

Jan, I already have a 2 yr old grandson and there is absolutely nothing as wonderful as a grandchild ;D  I did however start out young!  My husband and I have been married 31 years.  High school sweethearts ;)  I am so sorry your AN was so fast growing and I really hope mine isn't, (not that I don't want to be like you)  ;)  It was so good that you were completely comfortable from the beginning with your doctor.  I really liked the doctor I saw but when he said he would do the surgery alone and after saying it would take about 5 hours that concerned me greatly.  I would still like to hear if anyone has experienced a surgery without a neurosurgeon present.  I know that my AN is small but I would feel much better with a neurosurgeon present when they are inside my head next to my brain stem.

Thanks again to all of you for your help!

 

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Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

leapyrtwins

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Re: Newly Diagnosed
« Reply #32 on: February 20, 2008, 10:40:52 pm »
Glenda -

I agree with you on your thoughts about having a neurosurgeon - letting someone literally go inside your head is not something to take lightly  :) 

I'd want a neurosurgeon too.

Jan
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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

Kate B

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Re: Newly Diagnosed
« Reply #33 on: February 21, 2008, 06:06:51 am »
Quote from: Glenda on February 20, 2008, 10:04:21 pm
Kate, I am not sure what my current hearing level is.  I was shown a chart and the right ear "AN side" was below the normal line and the audiologist said the type of hearing loss I had was typical of someone with my diagnosis.  I just know that several months ago I moved the phone to the left ear.  I remember clearly that day at work when I realised I could not hear well with my right ear.  I had been thinking it was the phone I was using.  The tinnitus is pretty bad and drowns out the high tones.  Also I am definitely going to send a copy of the MRI to HEI to get their opinion.

Glenda,

I am glad that you are sending your MRI to HEI for their opinion as they "invented" the middle fossa surgery. Typically Middle Fossa is used when your current hearing level is above 50db. Make sure you get a copy of your hearing report when you send the MRI's. HEI provides a huge service to patients across the country by doing a free phone consultation. The only cost is the postage to get them there, but their expertise is priceless!

Kate

« Last Edit: February 21, 2008, 06:10:46 am by Kate B »
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Glenda

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Re: Newly Diagnosed
« Reply #34 on: February 21, 2008, 09:48:33 am »
Kate,

Thanks for the info about the hearing report.  I did not know about that.  I will definitely call to see if they will send me a copy.

Glenda
Logged
Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

lori67

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Re: Newly Diagnosed
« Reply #35 on: February 21, 2008, 01:02:31 pm »
Quote from: Kaybo on February 20, 2008, 10:51:04 am
Lore~
So is October 1st your b-day??????????
K
Whatever gave you that idea?? ;D

Glenda, I had a neurotologist and a neurosurgeon.  I was told the neurotologist did anything outside the dura (covering of the brain) and the neurosurgeon did anything inside.  I guess there are different ways of doing it according to what hospital you're in, but I think I'd feel better with another set of hands and eyes on my brain too.

Lori
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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.

Kaybo

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Re: Newly Diagnosed
« Reply #36 on: February 21, 2008, 05:55:45 pm »
Glenda~
Enjoyed talking to you - I'm here if you ever want to talk again!  You are such a sweetie!  I'm glad you are sending all of your info to House.  Like I said, I didn't go there, but I have heard such good stuff about them!  Did you get to call the nurse?
Talk to you soon!
K :D
Logged
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!

Kate B

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Re: Newly Diagnosed
« Reply #37 on: February 21, 2008, 09:02:44 pm »
Quote from: Glenda on February 21, 2008, 09:48:33 am
Kate,

Thanks for the info about the hearing report.  I did not know about that.  I will definitely call to see if they will send me a copy.

Glenda

Glenda,
Whenever I have a test done,I ask for a copy of the written report.  I keep them in my "AN" file:-)
Previously, I was under the impression that doctors or hospitals would only release them to doctors. That is not the case.

Kate
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/
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