Author Topic: Thanks to all of you  (Read 1595 times)

alwaysthere

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Thanks to all of you
« on: May 14, 2009, 07:23:12 am »
I just wanted to say thank you to all of you. Everyone has been so nice and welcomed me into the group. Even though they are not sure if I have AN or another type of tumor, it is still in the same location and causing the same problems as an AN. So, I am staying here because I have learned so much. I am not the greatest at responding to everyone and my personal messages, but I do appreciated all of it.

The waiting till June 25th for my surgery is harder on my husband than on me. He is having a hard time with the "what can happen" stuff. We both know that surgery is the right decision given the fact that they are not sure of the type of tumor. I've suggested that he talk to our minister or someone else about how he feels. I really thing that he is like alot of the other spouses in the fact that they are worried sick about me. I have found that the more I talk about it the better I am with it.

Anyway, I just wanted to say thank you to all of you.

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"

sgerrard

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Re: Thanks to all of you
« Reply #1 on: May 14, 2009, 07:57:11 am »
Hi Patty,

You are welcome. :)

Your husband might find it useful to join the forum. There is a topic under Caregivers where Chris and Rich recently posted some pretty interesting accounts of what it is like to be the spouse during surgery. Sitting in a waiting room for a day is apparently quite a nail biting experience.

http://anausa.org/forum/index.php?topic=9259.0

We would welcome him and do our best to set his mind at ease as the day approaches. It will still be a day of anxiety for him, but having us to talk to might help.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

CHD63

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Re: Thanks to all of you
« Reply #2 on: May 14, 2009, 11:33:59 am »
Hi Patty .....

There are probably many spouses of ANers on this site who would empathize with your husband.  I know mine surely can.  My husband is by nature a very quiet person, so it is difficult for him to articulate his fears.  His way of dealing with both of my brain surgeries was to read everything he could find about the diagnoses and potential procedures ..... somehow this was reassuring to him.

On the day of my AN surgery at Duke (5 hours away from where we live), my sister who lives near there gathered together many of her friends and her minister, who alternated staying with him in the waiting room ..... although he says he would not have minded being alone and reading, it did make the time pass more quickly for him.

If you would like, I am sure my husband would be glad to share his experience ..... or as Steve said, have him check the Caregivers topic.

Keep us posted.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

leapyrtwins

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Re: Thanks to all of you
« Reply #3 on: May 14, 2009, 10:45:52 pm »
Patty -

I'm sure I'm going to sound like a broken record, but I just wanted to echo what Steve and Clarice said.

Your husband may find it helpful - and very comforting - to read some of the posts on the forum; especially the Caregivers' threads.

Just knowing he's not alone in this might make all the difference in the world.

Best,

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

robynabc

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Re: Thanks to all of you
« Reply #4 on: May 31, 2009, 09:34:32 am »
HI,

I know this is a hard time for you guys.  I am the caregiver for my son and no offense,  I know that this is very hard for the person going though it but it can be almost as difficult for someone watching their loved one.  But,  I can say that staying as confident and positive helped me.  And remember ususally the waiting is way harder than actually going through it because our minds just go nuts with worry.  We all didn't sleep and had so much stress before surgery.  Going through the actual surgery was much easier.  So,  I just thought I would let you know.  Every thing will be fine.  Really.   Medical science is incredible and does wonders now days. 

Peace,

Robyn
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

Jim Scott

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Re: Thanks to all of you
« Reply #5 on: May 31, 2009, 02:11:29 pm »
Patty ~

Thanks for your appreciation of the site and the good folks that populate it.  I'm sorry to learn that your husband is having a hard time coping with your upcoming surgery.  His reaction is not that unusual.  Fear of the unknown always raises the deepest emotions, especially when someone you love is involved.  If we can help dissipate his fear and allay his concerns a bit, by all means urge him to join the forums, even if just to read and/or vent.  Perhaps if he can communicate with AN patients who have had surgery and come through O.K., that will ease his mind about the 'what if's'.  We'll try, anyway.  :)

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.