Author Topic: This forum is sooo great!  (Read 2939 times)

alwaysthere

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This forum is sooo great!
« on: April 08, 2009, 09:15:50 pm »
  I just want all of you to know that I am so glad I was told about this forum. I haven't posted much, but I sure get alot out of reading everything. Never in my wildest dreams would I have ever thougt that a trip to the ER with a "headache from hell" would end with a Dr. telling me I had a brain tumor. 3 months later I have learned so much about this thing in my head. I have found that knowledge is everything when it comes to AN. My Emotions are all over the place. I'll be fine one minute and start crying the next. I worry about every little pain I have in my head now, could it be the tumor? I am ready to see the Dr's at Mayo in May and get this show on the road and get on with life, such as it will be.

When I received the information from the ANA on the front of the March Notes was a picture of Dr. Link from the Mayo Clinic in Rochester, Mn. That happens to be who I will be seeing in May. Made me feel better about my decision to drive 10 hrs to go there.

You know, maybe God gave all of us this tumor to educate the rest of mankind. To learn patience and understanding of others. It sure makes you look at life differently.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

anissa

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Re: This forum is sooo great!
« Reply #1 on: April 08, 2009, 11:32:40 pm »
You know, maybe God gave all of us this tumor to educate the rest of mankind. To learn patience and understanding of others. It sure makes you look at life differently.
Patty

I agree and further think it was to bring us all together as new and some life-long friends.  The AN is somewhat of a gift in its own way.   ;D  So glad you found the forum, and I'm also so glad I found it too.   ;D ;D
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

leapyrtwins

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Re: This forum is sooo great!
« Reply #2 on: April 09, 2009, 05:48:39 am »
I worry about every little pain I have in my head now, could it be the tumor?

Interesting you'd mention this.  It was one of the reasons I decided not to watch & wait.  It was also a reason I decided not to have radiation.  I just wanted my AN gone as soon as possible, and that was one of the many reasons I decided on surgery. 

I thought Dr. Link's article in Notes was very interesting and very well written.  He sounds like a good doctor.  Good luck with your appointment in May.

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

EJTampa

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Re: This forum is sooo great!
« Reply #3 on: April 09, 2009, 06:36:27 am »
Very well said, Patty.
 
When I first came to this forum, probably back in late September of 2008, I learned more about AN's in 2 weeks than I could have ever learned by talking to a doctor.  Most doctors have never had AN surgery, so while they can tell you what patients have told them about post-operative life, they have never lived it.
 
Enjoy your time here on the forums and don't be afraid to post as often as you want.  You'll find some of us will provide great information, while others will make you laugh.  It's all covered here! :)
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

alwaysthere

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Re: This forum is sooo great!
« Reply #4 on: April 09, 2009, 06:44:16 am »
Jan,
 
  You are the one who told me about this forum. I has emailed you after I got my packet from ANA and your name and email was in there as someone who was willing to talk about this. So to you a big thanks for turning me on to all of this great stuff and these great people.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

Kathy M

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Re: This forum is sooo great!
« Reply #5 on: April 09, 2009, 06:56:00 am »
Patty,

I'm glad you found a good doctor and look forward to hearing what you find out!  I remember those days between my diagnosis and the first appt with a neurosurgeon as being the worst days of my life.  I became keenly aware of each and every symptom, some of them seemed to be getting dramatically worse, and I couldn't get past all things I could lose.  My appt with my doctor put me in a much better place, mentally.  Nothing was sugar-coated, but he reaffirmed for me what many folks on the forum had been telling me for weeks - there are a few givens that occur with a particular type of surgery....but the rest are possibilities, rather than certainties.  He gave me percentages, his track record, answered all of my questions, and by the time I had the surgery, I was mentally prepared and had all my things at home and work in order, so that I could focus all my energy toward takiing care of myself. 

The champions here, aka forumites, were always around for me to lean on and knowing that even those who are facing some pretty tough challenges are here to tell the tale, help others, and are living their lives with a gusto.

Best of luck to you!!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

kathylittlejohncobb

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Re: This forum is sooo great!
« Reply #6 on: April 09, 2009, 07:00:57 am »
Hi,
I was much like Jan, just wanted it out.  I think one's personality enters greatly into the decision, as watch and wait fits some people nicely; others choose GK, radiation, etc.  You have to go with what you learn, your doctors' advice, and your gut.   :)
The best to you; keep us posted!
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

Jim Scott

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Re: This forum is sooo great!
« Reply #7 on: April 09, 2009, 03:27:59 pm »
patty ~

Thanks for your kind words of appreciation for the forums.  The fact that they seem to be a help to so many is what keeps some of us around long after we've recovered and have our normal life back.  I can't think of a better way to spend time on the internet.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: This forum is sooo great!
« Reply #8 on: April 09, 2009, 11:47:23 pm »
Jan,
 
  You are the one who told me about this forum. I has emailed you after I got my packet from ANA and your name and email was in there as someone who was willing to talk about this.

You know, I thought that was you.  Glad to have you join us  ;D

I think I probably forgot to tell you, but since Kathy mentioned going with your gut, I have to say that I'm a big advocate of that.  I only consulted with one doctor (my neurotologist) prior to my treatment decision and somehow I just knew he was the right guy for me - after I was done being freaked out by my diagnosis, that is.  Once I decided on surgery (vs radiation) I also knew that it was the right decision for me and meeting my neurosurgeon was just the icing on the cake.  I went into surgery very calm, very confident, and just totally ready to get the AN out of my head.

Kathy also has a good point when she says that personality enters into your treatment decision.  I am a very logical, very black and white person - I don't like the unknown and I don't like to deal with what ifs.  Surgery was definitely the right option for me, but I want to stress that you should chose the right option for 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

suboo73

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Re: This forum is sooo great!
« Reply #9 on: April 10, 2009, 06:56:19 am »
Hi Patty!  Just wanted to welcome you - but sorry you had to join this club  ;D

Good luck with your appointment in May.
If you have to drive 10 hours, then 'so be it.' 
'Do what you gotta do' - that's what a best friend of mine always says, and i believe it.

Please send updates when you can.
My thoughts and prayers are with you and your family.
Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Debbi

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Re: This forum is sooo great!
« Reply #10 on: April 11, 2009, 11:46:25 am »
Hi Patty-

Welcome to our little "family."  I couldn't agree more with your words - this forum was my link to sanity during my diagnosis and recovery.  I have made so many wonderful friends here and learned so much from my fellow AN-travelers.  So glad you found this group.

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