Author Topic: I'm back and doing well - post CK  (Read 3450 times)

goinbatty

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I'm back and doing well - post CK
« on: July 05, 2009, 05:00:23 pm »
I've been reading trying to catch up on everyone.  Haven't been on here in awhile.  I've been dealing with illnesses in multiple extended family members.  Hopefully the rest of 2009 will go better than the first half.  Had a repeat MRI in 5/09.  Had it done early simply because we thought we were going to be changing insurance plans.  All is well in my noggin.  The only change is that I've started using earplugs even more on that side.  Sounds seem too clangy for lack of a better word.  Every once in awhile, I do what I call my side step.  Funny that it typically happens when I'm standing completely still.  Occurs with no warning.  Usually two steps sideways and I'm fine.  Dizziness is not a factor.  Just get a little off balance.  So there are certain things I don't do anymore.  Have to admit though that in the past few weeks, I stipped the wallpaper off bathroom walls including stripping the popcorn ceiling.  In doing so, I ended up climbing all over the counter, up and down a ladder, and the only time I had a problem was walking the edge of the bathtub so I know balance beams are out of the question - HA!!  Like I would have ever done that anyway. 
Hope all is well with everyone. 
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

ppearl214

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Re: I'm back and doing well - post CK
« Reply #1 on: July 05, 2009, 05:40:00 pm »
Sandra! :)  So GREAT to "see" you! I'm so thrilled you are doing well and it sounds like you are trying to tolerate some issues as best as you can. Honestly, it seems like yesterday since you had your treatment done and ... um.... don't be walking any balance beams or bathtub edges anytime soon, ok? :)

Don't be such a stranger... please continue to give updates so others researching radio options can follow along with how you are doing so they can also learn from it.

I'm so glad you stopped by... you have been missed.  :-*

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

eab

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Re: I'm back and doing well - post CK
« Reply #2 on: July 05, 2009, 09:31:30 pm »
Thanks for you update and message on my thread - great to hear how well you are doing.  I will definitely use caution when walking on a balance beam after I get zapped.  Again, my thanks for your update!

Beth
Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

goinbatty

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Re: I'm back and doing well - post CK
« Reply #3 on: July 09, 2009, 08:49:39 pm »
Hi Phyl,
I ran across my CK mask the other day.  Surely there must be some artsy thing I can do with it especially with the pixie nose they gave me.  Possibly an earring holder?  Would that be cute - dangling earring hanging from the nose.  Can you tell it's bedtime- HA!!
Sandra

congrats again Beth for completing your treatment.  It's such a relief to get that behind you.  Rest up!!
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

ppearl214

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Re: I'm back and doing well - post CK
« Reply #4 on: July 10, 2009, 04:55:32 am »
ok... thoughts for the CK mask... hang it upside down on the wall (the open part up towards the ceiling) and use for either pet toys (like our dog's toys") or.... as a plant holder/sconce type of idea :D   Mine, I think, is up in our attic... must dust it off and decorate it on my next CK anniversary (next April).   :D  Maybe decorate it with ribbons and bows and sparklers and horn blowers and such!

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

Jim Scott

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Re: I'm back and doing well - post CK
« Reply #5 on: July 10, 2009, 04:08:20 pm »
Hi, Sandra ~

Like your buddy, Phyl, I'm also delighted to see you post here again.  I'm also pleased to learn that your doing relatively well and effectively dealing with whatever post-AN issues arise, as we all do. 

I had FSR and also had a plastic mask but could never figure out what to do with it when the treatments ended, although wearing it at Halloween crossed my mind.  However, I figured that if I answered the door with it on when the little 'Trick-or-Treat' kids called, it might scare them enough to warp their little psyches so I reluctantly abandoned the idea.  I have no clue as to where it is, now.  Probably just as well.  ;)

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.

4cm in Pacific Northwest

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Re: I'm back and doing well - post CK
« Reply #6 on: July 11, 2009, 11:57:59 pm »
Glad you are back!

Popcorn ceiling  :o ... the ultimate renovators nightmare. Good for you to tackle all this again. I am up a ladder too -outside painting the eves of our house (wearing a helmet and have a new fangled ladder stabilizer  ;D) ... It is great to be up there again. So many jobs piled up since my AN surgey... I am glad to be able to tackle these again.

Yup healing happens...

DHM (aka "4")


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

sher

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Re: I'm back and doing well - post CK
« Reply #7 on: July 28, 2009, 01:48:11 am »
My kids told me to use the mask as a candy bowl for Halloween,,,,,, think I might try it.
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