Author Topic: OK its time for me to stop lurking and fess up!  (Read 6935 times)

cindyj

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Re: OK its time for me to stop lurking and fess up!
« Reply #15 on: March 12, 2008, 05:05:47 am »
I saw the CK doc yesterday - all I really found out is that I liked him and would feel confident w/ him should I choose the CK route.  (I had already learned so much from this and the CyberKnife forum.)He was VERY insistent that I choose the option I feel is best for me.  My AN is very, very close to the brain stem, but not yet touching it.  He said it would probably be ok for me to have another MRI in 6 mos and decide then what to do - I may do that.  But, I am scheduled to see 2 neurosurgeons in a couple of weeks, so I think I'll see what they have to say and then decide...

In the meantime, I'll just be hanging about in here! 

cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Debbi

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Re: OK its time for me to stop lurking and fess up!
« Reply #16 on: March 12, 2008, 06:24:58 am »
Hi Cary-

I, too, am a new diagnosee (is that a word???).  Found out about my 2cm "Ethel" (yep, we named it) last week and am now consulting docs and weighing options.

I wanted to just give you a quick bit of info re: potenital of getting an infection post surgery.  My family doctor shared with me that each hospital MUST divulge, when asked, what their "infection rate" is.  And, different hospitals have different infection rates.  This will be one of the questoins I'll ask if I opt for surgery. 

Meanwhile, aren't you glad you found this great group of ANers??? 

Best of luck!
Debbi
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

Kaybo

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Re: OK its time for me to stop lurking and fess up!
« Reply #17 on: March 12, 2008, 06:37:16 am »
Debbi~
Welcome to a wonderful site!  I LOVE it that you named your tumor -- that sounds like something I would have done if I would have had more time between knowing about it and having surgery!!   ;D
I had my surgery a while ago and have a wonderful life now -- if you would ever like to chat, please send me a PM.  You can check out my blog, if you'd like, to see what like is like for me 12 years after surgery!!

Happy Thoughts,
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: OK its time for me to stop lurking and fess up!
« Reply #18 on: March 12, 2008, 07:13:33 am »
He was VERY insistent that I choose the option I feel is best for me.  cindy

Cindy -

In my experience, it's a good thing when I doctor says this.  I'd say he's a keeper.

Debbi -

if "diagnosee" isn't a word, it should be.  I like the sound of it.   ;D

Good luck to both of you,

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

CaryF

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Re: OK its time for me to stop lurking and fess up!
« Reply #19 on: March 12, 2008, 07:36:51 pm »
For those who are looking at possibly using Gamma Knife as a treatment option I thought I would post this site.

http://www.rdoren.com/gamma/

Janie

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Re: OK its time for me to stop lurking and fess up!
« Reply #20 on: March 13, 2008, 11:15:51 am »
 Hi everybody, I'm newly diagnosed in January - had my first consultation with the ENT department at the University Hospital in Ã…rhus yesterday (This is in Denmark by the way) My AN is only 11 x 4 x 5 (IAC) -  the doctor who looked at me said that another MRI scan in 1 year was in order. I've been referred from the ENT clinic to another clinic near Copenhagen which takes care of all the AN patients in Denmark - it makes me feel very safe. Just wanted to mention that the doctor didn't  even discuss my options! As I wrote earlier - my philosophy while I'm "waiting and watching" is to try alternative therapies.
Actually, yesterday, my balance test was very good, and my hearing on the AN side is only slightly worse than the other side. My facial nerve test was also OK - and my tinnutus seems to be lessening.
what I'm trying to say is that maybe 3 weeks of homepathic medicine, Qi Gong, exercise, diet, cranial-sakral therapy, and a firm belief in getting well is already helping me?!
I am a perpetual optimist.  Don't lose faith - fight!
diagnosed January 2008 with intracanicular right-sided AN measuring 11 x 4 x 5 mm
2. MRI scan October 2008 AN measures 13 x 4 x 4
"wait and watch" status
May 2009 - hearing on AN side rapidly deteriating
56 year old GSM technician, amatuer cellist

ppearl214

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Re: OK its time for me to stop lurking and fess up!
« Reply #21 on: March 13, 2008, 02:28:23 pm »
hi to cindy and debbi and janie and all those now that are no longer "lurking"... as many note, we hate to see more folks join our ranks... but we are so glad to have you here.  Sending wishes of wellness to you all... and if you need help with the site or have any questions, just let me or JoeF (site moderators) or any of the gang here know.... we don't bite (ok, JoeF does but that's a different story.......) and are glad to help out if we can.

Again, welcome!
Phyl

(btw, janie, I am 2nd section Tai Chi and totally agree how much it helps!  Like you, I fight the good fight!) :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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