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Author Topic: Latest newsletter  (Read 10213 times)

JerseyGirl2

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Re: Latest newsletter
« Reply #15 on: December 17, 2008, 12:51:53 pm »
Francesco,

Excellent and very thought-provoking piece -- thank you for writing it.

Catherine (JerseyGirl2)
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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

Jim Scott

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Re: Latest newsletter
« Reply #16 on: December 17, 2008, 03:34:39 pm »
Well, my copy of 'Notes' (finally) arrived in today's mail.  Not all that late, really.  I haven't had time to do more than skim it but intend to read everything as soon as possible.  I noticed Francesco's article - that will be the first thing I read.  I also saw lots of info on the Chicago symposium.   Looks like another great newsletter! 

Jim
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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.

Debbi

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Re: Latest newsletter
« Reply #17 on: December 17, 2008, 04:08:19 pm »
Well, Jan, don't feel bad - it hasn't made it to Tallyho Lane in NJ yet either...

Debbi, checking mailbox hourly
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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

Jan D

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Re: Latest newsletter
« Reply #18 on: December 17, 2008, 06:30:20 pm »
Very good article, Francesco.  It was quite informative and should help others with their treatment decisions.

I actually received my newsletter today.

Good job!

Jan D
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AN removed July, 1966, size of golf ball, seventh nerve severed, shoulder nerve graft in 1967, corner of eyelid stiched twice, deafness in right ear, right eye does not close nor tear and right side of face has virtually no movement.

wendysig

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Re: Latest newsletter
« Reply #19 on: December 17, 2008, 07:38:11 pm »
I haven't gotten mine yet either.  Am I on the Naughty list?

Wendy
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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!

Jim Scott

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Re: Latest newsletter
« Reply #20 on: December 17, 2008, 07:40:04 pm »
O.K.  I read my latest edition of 'Notes', the ANA newsletter.  I enjoyed the cogent piece by our own Francesco and the article from the Ohio support group was interesting.  The AN survey was very informative.  However, that was about it.  The bulk of the newsletter focused on the Chicago symposium.  It was chock-full of details, registration forms and so on.  The symposium seems to be very well-organized and has the potential for being the best yet.  I wasn't surprised but just a tad disappointed that 'Notes' cut out a lot of it's usual features in lieu of promoting the symposium but I'm sure those features will return in the next newsletter.   Considering the fact that I received my issue within a month of its publication and Francesco's excellent article, I'm pleased.  :)

Jim
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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.

sher

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Re: Latest newsletter
« Reply #21 on: December 17, 2008, 10:39:48 pm »
I received mine 2 days ago... beat ya all....lol
Francesco, that was a great article. And so true about docs not knowing about post treatment side effects. My CK doc's know nothing about it and I have been educating them. I am going to give them a copy of your article.
Thanks again,
sher
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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

leapyrtwins

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Re: Latest newsletter
« Reply #22 on: December 18, 2008, 11:09:25 am »
Wendy -

if there is a naughty list, I'm right there with you - and apparently Debbi.  But that doesn't explain how Lori got her newsletter already  ::)

I'm looking forward to reading Francesco's story; I've read his blog and found it quite good.

I'm also very excited with the prospect of finding out more details about the symposium.  Hope I don't have to wait too long.

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

Kaybo

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Re: Latest newsletter
« Reply #23 on: December 18, 2008, 11:11:37 am »
Still nothin'...& I ain't been nothin' but good!!

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!

leapyrtwins

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Re: Latest newsletter
« Reply #24 on: December 18, 2008, 11:14:08 am »
Are you SURE???  ;)  :D

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

lori67

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Re: Latest newsletter
« Reply #25 on: December 18, 2008, 12:48:39 pm »
Hey, Phyl hasn't tripped over my fallen halo lately, so I've obviously been good.    ;D  Either that or Phyl has just been watching her step a little closer lately.

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.

leapyrtwins

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Re: Latest newsletter
« Reply #26 on: December 19, 2008, 06:10:54 pm »
I vote for the latter  :D

Jan  (still newsletter-less)
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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

MAlegant

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Re: Latest newsletter
« Reply #27 on: December 19, 2008, 10:41:40 pm »
Ok, still don't have mine, so don't feel too bad.  You have company, after all!
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Lainie181818

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Re: Latest newsletter
« Reply #28 on: December 23, 2008, 12:13:59 pm »
I received my copy yesterday. Great article Francesco, but I agree the bulk of the newsletter was about the symposium.
Who is thinking of going ?
Lainie.
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Cheryl R

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Re: Latest newsletter
« Reply #29 on: December 23, 2008, 12:32:16 pm »
There is a really long list of who does hope to attend of us forumites.          Many more than the one 2 yrs ago.        I can not take time at the moment to find it but there is a list of who is planning to attend among the posts.                  This will be my 4th one due to being an ANer since 2001.          Very interesting to attend.     
                                                    Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care
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