Author Topic: I'm a posite too!  (Read 3509 times)

pb

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I'm a posite too!
« on: January 24, 2010, 03:58:51 pm »
As of Wednesday, January 13 I am a postie! Good to be on the other side. My daughter was having a fit that the procedure was on the 13th, but I decided that when a tornado missed our house on 6,6,06  - the 13th was my lucky day.

Glad it's over. A few rough days. And I did look a bit like Frankenstein, but no Hulk (Gamma rays!!) My grandson was very disappointed. He was sure I would turn green. We tried fixing up the photos of me in the "halo" but just couldn't get the green tint.  ;D

Woke up the 2nd day post procedure with eyes swollen shut. Didn't remember hearing that could happen but the nurse assured me, it was "normal." Just love being normal. Went back to work 5 days out and had a great 1st week back. Tried to take it easy.

Feel like I'm on the road to normal as I was able to ride my horse this weekend without balance issues or getting too tired. That was the "test" for me. Love it!

I do have some questions for those further down that gamma road. If there is to be hearing loss when do you notice it? Know changes can occur if/when the tumor swells. It the same true with balance changes?

I did notice an increase already in tinnitus.  :-[  Will that lessen?? 

That's all for now. Sorry I'm rambling on. Thanks for your help. pb

ombrerose4

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Re: I'm a posite too!
« Reply #1 on: January 24, 2010, 04:22:27 pm »
Glad to hear your procedure went well. It seems like you are having a great recovery. Good luck!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: I'm a posite too!
« Reply #2 on: January 24, 2010, 04:22:44 pm »
Paula ~

Congratulations on achieving 'postie' status!  :)

I didn't have GK and won't attempt to answer your questions but I will offer you my hopes for a continued excellent recovery.

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.

anissa

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Re: I'm a posite too!
« Reply #3 on: January 24, 2010, 04:47:59 pm »
Congrats on becoming a postie!  I did not have radiation either but having the procedure behind you is fantastic.  I wish you the best as you recover.   ;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!"

sgerrard

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Re: I'm a posite too!
« Reply #4 on: January 24, 2010, 05:52:47 pm »
Congratulations, Toastie.  8)

I'm pretty sure the answer to most of your questions is "maybe," or something equally vague. You pretty much have to wait and see. I think horse back riding sounds a lot better than thinking about it.

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.

mk

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Re: I'm a posite too!
« Reply #5 on: January 24, 2010, 07:31:50 pm »
Congratulations on the completion of your treatment!

I didn't read carefully the instruction booklet they gave me after the procedure, which said that it is recommended to apply some cold compresses to avoid swelling. As a result my forehead was slightly swollen for 1-2 days, but this went away quickly.

As for the hearing question, there are basically two reasons why hearing might be compromised: One is due to damage to the nerve because of the radiation. This is the kind of damage that causes gradual hearing loss, which may go undetected for some time, and it is usually irreversible; my ENT warned me that if this happened there was nothing he could do.
Be on the lookout for sudden occurences though, which can be due to swelling-mass effect of the tumor. This can obstruct the blood flow and cause loss, even though the nerve is intact. Steroids can help resolve this if taken promptly, so make sure to contact your doctor as soon as you notice something out of the ordinary.

Best wishes for an uneventful recovery.

Marianna

GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

leapyrtwins

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Re: I'm a posite too!
« Reply #6 on: January 24, 2010, 08:34:06 pm »
Paula -

thanks for the update.

I read your email a week or two ago, but haven't had time to respond.  Will do so soon.

Glad things went well.

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

Sobes

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Re: I'm a posite too!
« Reply #7 on: January 25, 2010, 08:18:50 am »
Congrats Paula!!! Glad your GK treatment went well! Keep us posted :)

<3 Bren
Small AN, left side, Oct. 22 2009
Surgery Dec. 22 @ UW Madison (wonderful doctors)
SSD (left side)

jaylogs

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Re: I'm a posite too!
« Reply #8 on: January 25, 2010, 06:52:22 pm »
Congrats!!! Yeah, I have always had that in the back of my mind whenever someone mentions they had the GK...I keep thinking to myself I hope they don't get angry too often! haha...Seriously, hope all goes well as that nasty thing in your head dies a quick and final death that it deserves! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston