Author Topic: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION  (Read 3776 times)

agnes

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I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« on: July 25, 2007, 09:31:49 am »
i SENT FOR MY PACKET INFORMATION FROM THE AN ASSOCIATION AND THERE IS SO
MUCH INTERESTING INFORMATION INCLUDED IN THE BOOKLETS AND PAPERWORK.
I WAS IMPRESSED.  I AM STILL IN A WAITING PATTERN TO SEE THE PHYSICIAN IN
GAINESVILLE, WHICH IS NOT UNTIL AUGUST 13TH TO SEE PATRICK ANTONELLLI.  THIS APPEARS TO BE THE FIRST AVAILABLE APPOINTMENT THAT THEY HAD.  I AM
FEELING MUCH MORE COMFORTABLE ABOUT THE WHOLE ISSUE AFTER RESEARCHING
AND READING WHAT OTHERS HAVE TO SAY THAT ARE EITHER WATCHING AND WAITING OR HAVE ALREADY HAD TREATMENT OF SOME KIND.  SO, I WILL KEEP YOU
ALL INFORMED OF ANY NEW NEWS, OR WHEN I AM ABLE TO GET MY OPTIONS AFTER
SPEAKING TO THE PHYSICIAN. I CONTINUE TO READ THE NEW POSTS IN THE DIFFERENT CATEGORIES ON THIS FORUM.  A LOT OF GOOD INFORMATION IS POSTED HERE. I THINK ABOUT IT SUBCONSCIOUSLY I GUESS, BECAUSE MY SLEEPING PATTERNS HAVE CHANGED, BUT I THINK ITS ONLY NATURAL TO DO SO. ANYONE FACING SOME MAJOR HEALTH ISSUES SHOULD BE A LITTLE CONCERNED, BUT AS EVERYONE ELSE DOES, WE JUST GO WITH THE FLOW AND DO THE BEST WE CAN TO COLLECT ALL OF THE INFORMATION THAT WE CAN, SO WE HAVE KNOWLEDGE OF ALL OPTIONS, GOOD POINTS AND NO SO GOOD POINTS. HAS ANYONE HAD SKULL BASE SURGERY WITH DR. PATRICK ANTONELLI AT THE UNIV OF FLA IN GAINESVILLE?
6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

yardtick

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #1 on: July 25, 2007, 03:13:48 pm »
Hi,
Where did you write to or email to receive this packet?
 
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

agnes

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #2 on: July 25, 2007, 06:16:21 pm »
HI ANNA MARIE,
I RECEIVED A PACKET BY GOING TO WWW.ANAUSA.ORG/CONTACT AND WENT TO CONTACT INFORMATION AND THERE IS AN AREA TO FILL OUT WITH YOUR
NAME, EMAIL ADDRESS, ETC AND AT THE BOTTOM IS AN AREA TO PLACE A CHECKMARK TO OBTAIN A FREE AN INFORMAITON PACKET.  THERE ARE SEVERAL
BOOKLETS, AND PAPERWORK.  ALSO A LISTING OF OTHER INDIVIDUALS THAT YOU CAN CONTACT WITH THEIR EMAIL ADDRESS THAT ARE WILLING TO TOUCH
BASE AND SHARE THEIR EXPERIENCES, MUCH LIKE THIS FORUM. THERE ARE 2 LISTED IN MY LOCAL AREA, BUT IT DOESN'T REALLY MATTER WHERE OTHERS LIVE,
ONLY IF YOU ARE LOOKING FOR PARTICULAR PHYSICIANS OR THINGS LIKE THAT.  TRY OUT THE WEBSITE AND SEE IF YOU CAN GET THIS PACKET.  PLEASE LET ME KNOW IF YOU GET THE WEB SITE.
6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

TP

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #3 on: July 25, 2007, 06:33:47 pm »
Agnes, are you going to Univ of Fla at Shands in Gainesville, FL? 
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

agnes

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #4 on: July 25, 2007, 06:42:02 pm »
Yes, I am.  My appointment is not scheduled until August 13th.  My ENT referred me there instead of going in the local Jacksonville area.
6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

agnes

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #5 on: July 25, 2007, 07:23:19 pm »
I am not sure that you got the message I just sent you....did you? I may have sent it back to myself by mistake.
6x8x12 mm diagnosed 7/11/07 left side AN watch and wait. Partial hearing loss
left ear. Second MRI done 03/21/2008 waiting results. Unchanged from last year. 1.3 cm.Third MRI done 02/16/2009 1.3 cm unchanged. 4th MRI 12/18/09  Still 1.3 no growth, just some vascular chgs noted.MRI 11-30-12 no growth

TP

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #6 on: July 25, 2007, 07:26:43 pm »
Yes, thank you I got your message and just now replied.
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

leapyrtwins

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #7 on: July 25, 2007, 10:18:22 pm »
Agnes -

I totally agree with you.  The packet from the ANA contains some very valuable information.  A lot of it my doctor had gone over with me - watch & wait vs radiation vs surgery - but it was great to read it in "layman's terms".  I'm an accountant and a lot of the medical terminology my doc used was somewhat over my head; thank God he's a patient man and didn't mind my endless questions  :)

My only regret was that I didn't hear of the ANA prior to my decision (surgery), as I think reading the information packet, as well as the posts on this site, would have helped ease my fears.  There's nothing like being able to connect with people who can relate to AN's firsthand.

I picked up the ANA's membership brochure purely by chance in the waiting room of my doctor's office at my first postop visit (9 days after surgery to have my stitches removed).  I am somewhat puzzled why my doctor didn't mention the ANA to me since his partner is on the ANA Medical Advisory Board.  But whatever the reason, next time I see him I plan on asking him to give the ANA membership brochure to all his patients when they are first diagnosed with an AN.

Good luck with your appointment; keep us posted.

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

Omaschwannoma

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Re: I HAVE RECEIVED MY PACKET FROM THE AN ASSOCIATION
« Reply #8 on: July 26, 2007, 06:27:19 am »
Hi,

Just to let you know I had surgery at Shands with Drs. Antonelli and Neurosurgeon Lewis.  The approach was retrosigmoid, tumor was medium size, and this all done in 2005.  I have no complaints and was very happy with Dr. Antonelli and his skill as a surgeon who trained under Dr. Rhoton (a pioneer).  I am 5 hours from Shands and this makes it difficult to "pop in" for an appointment with Dr. Antonelli.

IMO I definately recommend to all who have treatment "out of town", make sure you or your doctors line up doctors in your home town for any after care that may be needed.  I have had one hellofa time with docs in my home town that don't seem to be experienced with AN side effects after treatment and there are patients, me included, that go from one specialist to another searching for answers.  I do have issues going on with my good ear, not from anything Dr. Antonelli and his team did as my surgery went well, but as one ENT stated, "I'm complicated due to my x-AN." 

I hope this helps with your on-going information collection and am here if needed, you can email me anytime or call to talk. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear