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Author Topic: Sher update  (Read 2231 times)

sher

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Sher update
« on: March 18, 2009, 10:46:56 pm »
Hi my fellow ANers!

I just thought I would give you an update on myself.. I think about you all often. I noticed that a couple of people, such as Mary in AZ and Andrea in SL, have not posted for awhile. I hope they are doing fine.
I am now in the heat of the 6 month post CK swelling. Hanging in without Steroids. Balance and dizziness are kind of bad right now but I am pushing through it. I started a floral designing job (my profession before all of this) a couple of hours every day. That seems to help me get through each day. I hope all is well with you all ! Looking forward to spring and warmer weather.
You are all in my thoughts and prayers!
Sher
Logged
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

anissa

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Re: Sher update
« Reply #1 on: March 18, 2009, 11:10:34 pm »
Hi Sher, my name is Anissa and I've heard about you!  I've talked to Andrea and she mentioned that you are in my neck of the woods.  I'm going to be having translab at Univ. of Utah in two weeks with Dr. Shelton.  I'm actually from Idaho.  Anyway, glad to "run into you".  I hope that the balance problems level out for you soon.  Enjoy your new job and the spring weather!
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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: Sher update
« Reply #2 on: March 18, 2009, 11:45:28 pm »
Hi Sher,

I think Mary was on about a month ago, same as you. She is probably just busy, I too hope she is doing fine.

You sound well, despite the balance and dizziness and swelling. No steroids is good. I am 18 months post CK now, and just had another "unremarkable" MRI and am doing fine. It does get good after a while, you have better days to look forward to. Keep hanging in there.

Steve
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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.

Syl

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Re: Sher update
« Reply #3 on: March 19, 2009, 10:40:25 am »
Sher:

Thanks for the update. It's good to see your coming along, though with some issues.
Keep us posted.

Syl
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1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Tisha

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Re: Sher update
« Reply #4 on: March 20, 2009, 02:59:09 am »
Hey SHer,

You hang in there!  I hate those steroids...almost 4 weeks away from them and still not sleeping normally.  Keep us updated.  Tisha
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1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Jim Scott

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Re: Sher update
« Reply #5 on: March 20, 2009, 01:49:53 pm »
Sher ~

Thanks for taking the time to update us on your continuing recovery.  I like your determination and I trust it will help you get through this period.  Congrats on returning to your profession!  I agree that keeping busy, especially doing something you enjoy, is good 'therapy'.  We're looking forward (with you) to better weather - and better days.  :)

Jim
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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.

sher

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Re: Sher update
« Reply #6 on: March 20, 2009, 11:47:43 pm »
Thank you all for your well wishes... I appreciate it.

Steve,
Sometimes I am not sure if I actually will feel better some day. But just hearing/reading you saying that does give me hope.

 ;D Sher
Logged
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: Sher update
« Reply #7 on: March 21, 2009, 12:44:40 am »
Having said all that, I wonder if you should consider doing a "six pack" of methylprednisolone (Medrol), or something like that. It is a tapered dose for six days, with 6 the first day, down to 1 the last day. I did one before I was diagnosed, when they thought my middle ear was clogged up and they were trying to loosen it up. I was a little jumpy for two of  the days, but it wasn't bad.

JB had some severe post-CK swelling last year, and took steroids twice, I  think. They helped the swelling symptoms a lot, although he reported a lot of steroid symptoms instead. Something like that might help to knock it down some, so the peak symptoms weren't so bad. I guess I'm saying don't rule it out if you start feeling miserable. By the was, six months later JB's swelling problems were history.

Steve
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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.

Anomar11

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Re: Sher update
« Reply #8 on: March 21, 2009, 03:00:32 pm »
Hi Sher,

I'm just shy of 5 months out of CK.  Overall have been doing very well.  Energy returned 2-3 weeks after treatment, wax and wane of original symptoms, bad ear fullness, sore throat, worsening tinnitus accompanied by pulsating tinnitus.   Other than that, exercising regularly, going about daily life.  Then last week out of nowhere, real bad vertigo/dizziness.  Couldn't walk without help.  Came on Friday, tried therapeutic doses of ibuprofen and meclizine all week end without much luck.   Bad all weekend.   It was bad enough that I was willing to give steroids a go, so I'm now on day 6.  I hate the idea of it, but I feel I needed to give it one go, and pray it pushes it back.  I'm markedly better.  I well aware of the cost vs benefit, and may have some other thoughts by the end of treatment?, but so far so good.  Please feel free to pm me if you want to chat further.  I hope you're feeling  better.  Take care.  Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9
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