Author Topic: Greetings from a lurking newbie  (Read 5524 times)

moe

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Re: Greetings from a lurking newbie
« Reply #15 on: September 23, 2009, 09:21:53 am »
Imnocleaver,
Love the spunk and humor you portray! Will get you far as you go down this AN path.

Sounds like you've got a good handle on things. Your story is rather shocking about not being told about the AN and having to do your "own" research!
You really gotta be your own advocate.

I had to make my own appt for the MRI follow up because they never called me with the results ??? ??? ???
I think it was a month later. Oops, the office staff forgot to alert the doc about the abnormal MRI showing a huge tumor pressing against the brain stem.
He had not looked at it ahead of time and slapped the baby up there and I'm sure had a coronary. :o :o

So keep up the great work. It IS work!
And keep that sense of humor. Ask question. No question is too silly or trivial.
Maureen


 
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

imnocleaver

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Re: Greetings from a lurking newbie
« Reply #16 on: September 23, 2009, 06:15:08 pm »
Maureen - Sadly, I wasn't even shocked that my neurologist never let me know.  That was the last in a long list of transgressions, including, but not limited to, trying to fix my neck/back problem by writing a new prescription quarterly to see if anything would ever "take" rather than figuring out what was actually wrong.  (Nothing ever worked, but I have quite an interesting stash of unused meds now!)

Dennis - I read your blog, and your Brackmann/Yoda comparison brought to mind my attempt to describe radiation treatment to my sons.  I tried to describe how each beam was harmless by itself, but the point at which they all converged was quite intense.  As I was stumbling through my explanation, assuming I was botching things up, my oldest said, "you mean, like the Death Star?"

"EXACTLY!  It's exactly like the Death Star!!!", I said. 

That has to be the best description I have yet to read about how Gamma Knife works.  The Gamma Knife marketing team could have saved themselves a lot of copy on their site if they had just said, "You know the Death Star?  Yeah, it's like that."
5mm left IAC AN dx 7/13/09
January 2010 MRI showed no measurable growth
W&W!

Kaybo

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Re: Greetings from a lurking newbie
« Reply #17 on: September 23, 2009, 07:11:25 pm »
imnocleaver~
Sorry I didn't call you today - I was waiting until 10 (I hate to call people too early) and then a friend called & needed me to come help her with some stuff - let me know what a good time is...

K ;D
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!

imnocleaver

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Re: Greetings from a lurking newbie
« Reply #18 on: September 23, 2009, 07:49:52 pm »
imnocleaver~
Sorry I didn't call you today - I was waiting until 10 (I hate to call people too early) and then a friend called & needed me to come help her with some stuff - let me know what a good time is...

K ;D

No problem...sent you a pm!
5mm left IAC AN dx 7/13/09
January 2010 MRI showed no measurable growth
W&W!

leapyrtwins

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Re: Greetings from a lurking newbie
« Reply #19 on: September 24, 2009, 07:36:57 am »
Jan & Lori are NUTS!!   ::)

K   ;D

Hey, I resemble that remark!  :D

Note to Kaybo - it's a trio (as in 3) - which makes you a nut also  :D  ;D

Sorry, Phyl, I'll be good.  Put the whip away!!!

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

foodsmarts

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Re: Greetings from a lurking newbie
« Reply #20 on: September 26, 2009, 04:30:27 pm »
Hi Imnocleaver. Your wit is delightful. Welcome to the club. I loved your reaction to repeating the words in the hearing test. Very funny.
As with most things in life, a sense of humor really, really makes everything easier, so you're already on the right track. This wonderful group of people were an immense help to me in the information collection stage and in making my decision for treatment (CK at Stanford, Dr. Chang). Sorry to hear you're saddled with a lazy (?) or unengaged primary physician. I was lucky enough to have a doctor at UCSD San Diego who was ultra engaged, direct, honest AND has a wonderful sense of humor - can you tell I like her?

When you get further down the road, and if you consider CK, I hope you check out the Cyberknife patient forum for excellent information but also for the email company of the witty Dr. Clinton Medbery, who also leaves 'em laughing. You two should create for some interesting reading.

All the best, Helen
5.4mm X 3.2mm X 3.88 mm at diagnosis 8/28/08; 1.1 cm X .5 cm 6/16/09; CK Stanford Drs. Chang and Soltys 8/19/09

Nani

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Re: Greetings from a lurking newbie
« Reply #21 on: September 27, 2009, 08:04:26 pm »
imnocleaver,

Welcome.  Why is it we get the tumors and the husbands pounce of to the land of denial?  Men.. ::)

Anyway, if you do go the surgery route just remember: It's only brain surgery.  Not like it's rocket science or anything.
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.