Author Topic: It's official, I'm part of the club  (Read 7308 times)

Ingy M

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Re: It's official, I'm part of the club
« Reply #15 on: March 14, 2007, 03:56:33 am »
Hi Windsong,

Yes, I am in the Collingwood area and am seeing a doc in Barrie. I can't seem to get off this computer. 
I will surely have to wait for my appt.  This thing in my head is really throwing me for a loop.
Thanks for the info...I will keep in touch

ingy

Windsong

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Re: It's official, I'm part of the club
« Reply #16 on: March 14, 2007, 11:36:22 am »
HI Ingy,

I used to ski in your area and later over at Horseshoe Heights. Half my family is up in Barrie now so i know they had difficulty find a gp.

About being glued to the pc after hearing about the An.... i was on mine for hours after I found out! That first weekend I found all sorts of information and after joining ANAC what was so very helpful was talking by phone with various people who had had treatment in all the various modalities... surgery, Gk, FSR. Then I also talked a lot with a CK patient. So by the time I went in to talk with my neuro and ent guy I already had lots of information. It helped because at least the words and some of the teminolgy was now familiar. What I liked about my neurotologist was the time he took to explain the different approaches taken in surgery plus he also talked about radiation treatment and quickly set up appts for the fsr and the gk. I could have begun the fsr earlier as i certainly knew in my gut that that was what I wanted but I had made this other appt with a second surgeon rationalizing that i should hear as much as i could etc. But I never did see that guy as there was a wait and i knew hwat I wanted  so I cancelled that and had the fsr set in motion. I want to say that both my fsr doctor and my ear doctor have been very helpful and caring in all follow ups after treatment. Half the battle is knowing you are in good hands and feeling this is "right". Plus staff at both places are wonderful. At least that's my experience. Even some of my friends who were present at treatment still may comment on the amazing care shown by the staff there.

The BT Foundation is interesting in that they have the vieods of those speeches from the conferecnes and the doctors speaking are in the top of their field. Some of them are really amazing. Even the surgeon who is involved in the GK here is astonishing in what he can do in surgery. And my neurotologist teaches the new docs coming up too. There are always "fellows" around who come from all over the world.

Don't forget to sleep at night lol.... sometimes i got so caught up in searches i'd be up most of the night. Things settle down once you make a decision and a certain calm arrives.

Take care,

thecakes

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Re: It's official, I'm part of the club
« Reply #17 on: March 20, 2007, 05:58:32 pm »
   Hello ingy.  This is the best website ever.  You can talk about any concern you have and there will be someone that can share  their experiences with you.  We are all basically alike and very different at the same time.  I discovered this site after my surgery.  I wish  I would have known about this site before the tumor.  Oh and----- we are all healthy people with this strange thing in our heads.  We do not have a cancerous tumor that will spreador grow rapidly.  I hope this site helps you.

cin605

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Re: It's official, I'm part of the club
« Reply #18 on: October 19, 2010, 01:02:04 pm »
Welcome...Sorry for your diagnosis.
They discovered a mucous retention cyst the same time as my AN but they were not concerned about it....A cyst is different then a tumor.
Stinks playing the waiting game but this give you plenty time to research and weigh your options..if there is an option between surgery and cyber knife at this point where the An is 2cm size of a grape...and depends on locality (is that a word?)
Mine was in the inner ear canal extending into the cerbellapontine angle....kissing my brainstem....I just thought "get it out"
We are all here for you through out your journey....Take Care..Cindy

Moderator note: This thread is well over 3 years old.  'Ingy' hasn't posted since April, 2007.
« Last Edit: October 19, 2010, 01:07:13 pm by Jim Scott »
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old