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Author Topic: A quiet week ?  (Read 6573 times)

tony

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A quiet week ?
« on: November 24, 2006, 01:52:26 am »
So we are booked for gamma knife at Royal hallamshire in 10 days time
(this for the other side, NF2, - thankfully much smaller-13mm)
Not easy for an NF2 to make a choice - all roads seem to lead to Rome
(If you get my meaning)
The Hallamshire results for NF2 were that good that the "NF2 Crew" spent
two days challanging the results
Clear in my mind is that few treatment options can actually reverse
any hearing loss - it does happen (1% ?) - but no-one knows quite why
Also they have found my genetic anomally - but it took two attempts
which does suggest a form of "mosaicism"
Complex, but basically it maybe good news as not all the body is potentially
"at risk"
Surgery is booked to nip/tuck under my right eye - to help with dryness
and improve the cosmetic slightly (Mar07)
Oh and I did my first full day at work - mainly training etc
So a quiet week all round really...
Best regards
Tony
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Brendalu

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Re: A quiet week ?
« Reply #1 on: November 24, 2006, 06:03:31 am »
Tony,
Thoughts and prayers are with you.  Such a decision to have to make.  You are so well read , you no doubt researched and researched the absolute best treatment.  I'll be waiting for the updates and the news that you are the 1%!
BrendaO
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Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Derek

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Re: A quiet week ?
« Reply #2 on: November 24, 2006, 07:22:09 am »
Hi Tony...

My second visit to the Royal Hallamshire will be in April to have a consultation with Jeremy Rowe following my next annual MRI scan. I was most impressed with the courtesy and consideration shown to me on my first consultation there earlier this year and I am sure you will be very well looked after.

 Very best of luck with your forthcoming GK treatment...you have obviously undertaken vast research and your posts are always an inspiration to others...we look forward to your successful outcome.

Regards

Derek
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Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Sue

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Re: A quiet week ?
« Reply #3 on: November 24, 2006, 05:33:24 pm »
Hi Tony

Wishing you all the best in the upcoming months of your treatment.  You are such a blessing to have on this forum because of your extensive knowledge of all things AN.  Are you sure you are not a doctor??  If anyone can make an informed decision it will be you.  I only hope that all goes well and that you have the very best of outcomes.  You are a treasure, my dear. ;)

Keeping you in my thoughts,

Sue in Vancouver, USA

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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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lmurray69

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Re: A quiet week ?
« Reply #4 on: November 25, 2006, 06:08:07 pm »
Tony, I do hope and pray that all goes well. I have put you on the prayer chain..remember that we are all here for you...Linda
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radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

Windsong

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Re: A quiet week ?
« Reply #5 on: November 25, 2006, 07:39:54 pm »
Tony, Hi...

I am sending you lots of good wishes and ultra healing....

You send so much advice that is good for us here on the board. Thank you.

Forgive me but I have forgotten... are you in the US or in the UK? or somewhere else lol.. my memory is not the same as before sorry(An) sorry...

windsong
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tony

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Re: A quiet week ?
« Reply #6 on: November 26, 2006, 01:57:13 am »
Thanks to all - and I am  in UK, Windsong (- AN is suppossed to  affect short term memory......I think ?...)
Best Regards
Tony
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Obita

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Re: A quiet week ?
« Reply #7 on: November 26, 2006, 06:47:05 am »
Good luck Tony.  You truly are an inspiration to us all.

Kathy
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Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

vjharris

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Re: A quiet week ?
« Reply #8 on: November 26, 2006, 09:26:18 am »
My best to you Tony. I also have been informed and inspired by your posts. I will be thinking of you on the 4th (?), as I mentally prepare for my Gamma Knife treatment on the 5th. (Cleveland, OH   USA)
Vicki
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2.2x2.37 right side meningioma or acoustic neuroma
Gamma Knife Dec 5, 2006

Battyp

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Re: A quiet week ?
« Reply #9 on: November 26, 2006, 10:40:27 am »
Tony you know we are all here offering you prayers and special thoughts.  I'm thinking you should show up for treatment wearing the official pink pirate socks :o)  I bet you'd really be treated extra special then  :-*  Hope all goes well for you!!!
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tony

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Re: A quiet week ?
« Reply #10 on: November 26, 2006, 11:06:19 am »
Thanks, I was thinking a cutlass, or brace`o`flintlocks
might be more effective....
best regards
tony
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Captain Deb

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Re: A quiet week ?
« Reply #11 on: November 26, 2006, 02:53:45 pm »
Aye a cutlass for sure--they made me take mine off for the MRI however! I insisted on keeping me eyepatch, and me pink socks was a hit! Best of luck to you , tony--you are an inspiration for us all.
Capt Deb 8)
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"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: A quiet week ?
« Reply #12 on: November 26, 2006, 07:54:25 pm »
Thinkin of ya from down under tony.


laz
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2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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Patti UT

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Re: A quiet week ?
« Reply #13 on: November 27, 2006, 10:23:59 am »
All my best to you Tony.  What a challenge to have to go through anything to do with AN again. My thoughta and prayers are with you as you start this new chapter of your AN journey.  Please keep us informed as you go. We need you here on this forum. You are such a wealth of information and help to all.

patti UT
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2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

flier58

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Re: A quiet week ?
« Reply #14 on: November 27, 2006, 07:18:59 pm »
Hi Tony,
Best wishes of successfull treatment.  Waiting for your posttx. comments as always very much appreciated.  Good luck!
Flier 58
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