Author Topic: 6 months post-CK  (Read 3261 times)

goinbatty

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6 months post-CK
« on: August 08, 2008, 12:25:46 pm »
I had a 6 month MRI recently which showed necrosis!  That was such a relief.  Over the past few months, I've had intermittent power surges to the brain.  Sorry, but I don't know how best to describe it.  At first it was occasionally but increased in frequency.  However, with my history of grand mal seizures (x20+ years ago, still on antiseizure meds), I got a bit paranoid.  Had an ambulatory EEG, which lasted ~48 hrs.  Needless to say, I lost loads of sleep having to wear all of that garb, which made the symptoms worse.  During the first 24 hrs, I diaried 10 events.  The second 24 yrs - 37 events.  The surges are extremely brief with no alteration in vision or consciousness at all.  My family didn't know it was occurring until I told them.  I was to have worn it another 24 hrs but declined knowing I would be constantly pressing the button on the monitor.  Neuro said there was no electrical activity suggestive of seizures which was an extreme relief.  It's the strangest thing.  I can go days with no symptoms of this.  I can tell you that fatigue and stress make it worse.  Dr. M and my neuro said it's not a common side effect but some have noted it off and on for up to a few years.  Well if that's the most I have to endure, I'm more than fine with it.  Other than the brain zapping, I'm back to napping a little more.  That comes and goes also.  There again, I could attribute that to other things going on in life.  But the way I look at it is....this too shall pass.  Or at least it better! 
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

Jim Scott

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Re: 6 months post-CK
« Reply #1 on: August 08, 2008, 01:33:32 pm »
'goinbatty'

Congratulations on the great MRI!  'Necrosis' is a beautiful word for us post-radiation AN folks and I'm pleased you decided to share the good news of your report with our members.  The 'brain zaps' are definitely problematic but at least you now know they're not related to the AN and apparently not indicative of seizures.  If fatigue and lack of sleep aggravate the 'zaps', then more rest is definitely in order.  I hope and will pray that these episodes pass away, soon.  Meanwhile, your positive attitude and a great MRI report will help carry you through, I'm sure.  :)

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.

sgerrard

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Re: 6 months post-CK
« Reply #2 on: August 08, 2008, 07:23:31 pm »
Congratulations on the necrosis and shrinkage. Bye, bye tumor. If it wants to go out with a few little bangs, so be 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.

ppearl214

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Re: 6 months post-CK
« Reply #3 on: August 08, 2008, 07:39:08 pm »
well, my dear.. you KNOW I'm sending MAJOR congrats to you for this terrific news! Onward and upward to wellness!!!!!!!!!!!  :-*

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

Tumbleweed

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Re: 6 months post-CK
« Reply #4 on: August 08, 2008, 10:28:23 pm »
Congrats on the tumor necrosis!  May it continue. Best wishes for healing, GB.

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

goinbatty

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Re: 6 months post-CK
« Reply #5 on: August 15, 2008, 07:08:54 am »
Thank you all for your support.  Can you believe I've not experienced this in over a week now.  But that happened once before and then the power surges returned.  Hopefully it's over with but if not, that's ok too I suppose.  At least it's dying in there.  At around 3 months post CK, I had a hearing test and the AN side was on the low end of normal.  Well I can tell that has diminished.  The other night, my neighbor's car alarm went off.  I wasn't asleep but had my good ear to the pillow and simply didn't hear it and it went off twice.  Everyone else in my family did.  I'll have to pay more attention but what's done is done and I'm learning to compensate.  I'll probably have that checked again after the first of the year.  Every now and then I do what I call the swish test where I rub my fingers together near my ear alternating sides.  That's a great way to tell the general differences in hearing. 
Take care 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

candtlaw

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Re: 6 months post-CK
« Reply #6 on: August 15, 2008, 12:52:26 pm »
congrats on a good check up :)  I have expierenced what I call "brain surges" when I forget to take my anixety meds. I totally panic and get all weepy as well. I forgot 2 days dose and look out......... ug. Just a thought if you are taking medication for anything else......... gl and I hope that they stay away for you.
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

jb

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Re: 6 months post-CK
« Reply #7 on: August 18, 2008, 10:34:20 am »
Sandra,
Congrats on your MRI!!  :D I hope the other issues continue to improve.  Looks like everybody around here is getting MRI'd lately.  My 1-year is coming up on Thursday.
JB

2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

sgerrard

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Re: 6 months post-CK
« Reply #8 on: August 18, 2008, 09:34:21 pm »
Good luck with the MRI, JB. I hope your swellage turns into shrinkage. Sometimes shrinkage is a good thing.  :D

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.