Author Topic: CK treatment  (Read 2011 times)

sher

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CK treatment
« on: September 15, 2008, 08:56:48 pm »
Hi Everyone,
I have my CK set up for Sept 29, 30 and Oct 1. I am still feeling anxious about the effects it will have on the balance nerve. But since there has been a 30 % growth in 4 months.. no more watch and wait. Prayers woule be welcomed....
Thanks
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

sgerrard

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Re: CK treatment
« Reply #1 on: September 15, 2008, 09:18:03 pm »
Hi Sher,

A little anxiety about the effects is to be expected, so just try to be calm and wait to see what happens. The procedure itself should not be a problem, and CK has a very good success rate at stopping ANs, so there are lots of reasons to be optimistic, even if nothing is guaranteed.

What are you balance nerve issues now? I wouldn't expect them to get worse, but it might take a while for them to get better. Mary B also had some balance issues before CK. I think she is doing okay with them, but they haven't gone away completely, at least not yet.

You are on the calendar, so we will all be wishing you the best for next week. Take care.

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.

Jim Scott

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Re: CK treatment
« Reply #2 on: September 15, 2008, 10:24:32 pm »
Sher:

Balance is almost always an issue with AN treatment (surgery or radiation) but it usually resolves in time and with some effort.  Your anxiousness is typical - but I hope it will prove unwarranted - and you'll definitely be in my prayers.

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.

Tumbleweed

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Re: CK treatment
« Reply #3 on: September 15, 2008, 11:31:27 pm »
My balance was about 15 to 20% worse for about 6 weeks or so post-CK. Now at two months post-CK, it seems to be back to where it was right before CK. Dr. Chang advised me that the balance symptoms I had right before CK (disequilibrium) could get worse, but the onset of additional balance symptoms (e.g., vertigo) was unlikely. That turned out to be the case for me.

The odds are that whatever side effects you have from CK treatment will be relatively short-lived. You should come out okay!  :)

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

fbarbera

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Re: CK treatment
« Reply #4 on: September 15, 2008, 11:40:13 pm »
Hi Sher, I will keep you in my thoughts and prayers -- but that makes it sounds like you are about to undergo something scary.  Although the AN experience is definitely unnerving, CK treatment is about 100 times easier than going to the dentist.  It is a breeze, and we are blessed to have such a non-invasive alternative available to us.  I had intermittent balance episodes before treatment.  Afterwards, it has been up and down with the balance issues but I think the size of my AN had something to do with that.  Best wishes.  You'll feel a lot better once the treatment is behind you!  Francesco   

ppearl214

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Re: CK treatment
« Reply #5 on: September 16, 2008, 05:59:36 am »
Hi Sher, I will keep you in my thoughts and prayers -- but that makes it sounds like you are about to undergo something scary.  Although the AN experience is definitely unnerving, CK treatment is about 100 times easier than going to the dentist.  It is a breeze, and we are blessed to have such a non-invasive alternative available to us.  I had intermittent balance episodes before treatment.  Afterwards, it has been up and down with the balance issues but I think the size of my AN had something to do with that.  Best wishes.  You'll feel a lot better once the treatment is behind you!  Francesco   

Sher, I couldn't agree more with Francesco..... many times, I speak to those contemplating CK .... and I try to share with them just how easy and truly unnerving the procedure is... and I tell them the same thing as Francesco.... how much easier it is than going to the dentist (heck, after day 1 of CK, I slept through my treatments!)... and after they do CK... they come back to me and say "OMG! You were right! it was the easiest dang thing I've ever done!"......  The anxiety leading up to it is absolutely the worst... the first day, the anxiety can be bad, so I'm hoping they offer a "happy pill" (ie: Ativan or such) to help "curb the edge".... but, after day one.... I'll place bets that you will also say "OMG, that was too easy!".  Care to take that bet? ;)

Like your's, mine was growing at a good speed as well and I wanted to nip it before it got out of hand.  Now.... I sit here 2-1/2 yrs later... totally at peace with my decision... and experiencing the end results. At time of my treatment, I always kept my eye on the end result... during those days short term side affects would bother me (ie: if my balance was off, short-term enhanced tinnitus, etc)... I just kept my eye on the end result... reminding myself that I was mentally strong enough to endure the twinges and pangs that I experienced... telling myself that I can handle anything as it was the end result that makes it all worth while.... and today, I sit here, with a smile on my face, knowing that not only was I able to get through the treatment... and the occassional pangs and twinges... but now I have my dr's confirmation that the booger has died its fugly death.... so, I'm rubbing off some of that good outcome your way.... and when the CK is done... please come back and tell us (me) just how easy the process truly was......I'm dying to hear you say "OMG! You were right! It was so dang easy!"

Hang tough!  Prayers and wishes and my infamous hugglez coming your way! You can do it! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Omaschwannoma

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Re: CK treatment
« Reply #6 on: September 16, 2008, 10:32:51 am »
Sher,

Get ready.....and.....CATCH!  prayers flying through the air your way....

May you have a peaceful heart on that very special day.
May your doctors attending you be focused on the job at hand.
May you feel the love from all who care.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

sher

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Re: CK treatment
« Reply #7 on: September 16, 2008, 11:45:40 am »
Thank you, Thank you everyone for your words. I am not really scared of the CK itself.. I have had balance issues on and off for so long, that I am hoping for some relief from that, not more balance issues. But I will be ok, as you have all pointed out to me. Thanks so much for caring!!!
Sherry
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling