Author Topic: post CK update  (Read 2049 times)

goinbatty

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post CK update
« on: January 05, 2009, 09:06:21 pm »
Saw the ENT and audiologist today one year post CK.  Hearing is considered stable with mild loss AN side.  I thought it had gotten worse but it's the tinnitus masking the hearing.  My perception is that the tinnitus is worse but it could be that I just notice it more.  Looking back over the past year, the most notable side effect I experienced was around 6-7 months with the brain power surges.  It felt like electrical shocks occurring up to 30-40x/day.  Thankfully, the worst of that lasted only a few weeks.  It sounds wicked but was not painful, just very distracting.  It's occurred briefly a few times since but mild in comparison.  Dr. M. said that wasn't a common side effect but it can occur.  My internist noted a previous patient years back who underwent surgical removal of AN, with the same complaint.  Balance issues are extremely mild.  No headaches that I could relate to the AN.  Had mild fatigue for a few weeks after CK. 
Back in Oct, I attended a class reunion.  With the DJ blaring music and everyone yelling at each other in order to hear, I paid dearly for not wearing earplugs.  Symptoms increased for about 2 weeks.  I won't make that mistake again.  Headed to Daytona in a few weeks.  Yep, I'm a NASCAR fan.  I ordered custom ear plugs today that block out all noise.  For those who haven't been through that, it was an odd experience.  She used this tiny round piece of foam with a string attached which was placed deep in the ear to keep the impression material from going too far.  She warmed up the impression material and then injected into my ear canals using what looked like a penlight with a synringe attached.  The material firmed up in a few minutes and the string was utilized to help remove it.  The earplugs will be back in 2 weeks just in time.  I'll have to admit, with the impression material in my ears, it was so peaceful.  I now understand why people that wear hearing aides sometimes prefer not to wear them or turn them down.  The pair of custom earplugs will cost around $70.  I'll be using one in the AN ear at church.  I know fellow members have often wondered why I come when I intermittently have to shove that foam earplug back in.  Will let you know how I like them. 
Almost forgot.  Not going to repeat MRI until around 7/09, which will be a year since my last one.  Unless I develop a problem in the interim.  Certainly hope not. 
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

sgerrard

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Re: post CK update
« Reply #1 on: January 06, 2009, 12:30:40 am »
Hi Sandra,

ANs and NASCAR, now there's a good match.  ;D

Actually it sounds like the ear plugs will fix you right up. $70 is not bad if they work well. All in all, it sounds like you are doing pretty well. I did the same thing, skipping the 12 month MRI and going from 6 months to 18 months. Mine will be in March (must remember that!).

Hope 2009 proves to be a good year.

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.

Tumbleweed

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Re: post CK update
« Reply #2 on: January 06, 2009, 12:49:20 am »
Sounds like you're doing great, Sandra. I'm happy for you!

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

goinbatty

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Re: post CK update
« Reply #3 on: January 06, 2009, 09:53:54 pm »
Thank you for the well wishes.  It's been a long road.  I was thrilled when he said to wait until July to repeat the MRI.  Honestly, I just don't want to think about it just yet.  But just so I won't forget to schedule, I wrote it down on my calendar.  With the way my memory is lately, I would be so lost without my calendar. 
Steve, I'll be thinking about you come March.  Hope all goes well.
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

sher

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Re: post CK update
« Reply #4 on: January 07, 2009, 08:40:15 pm »
Sandra,
So happy to hear you are doing well. That is very encouraging to those of us in heat of our CK journey. I love cars, so NASCAR sounds fun! Wow, nice to be able to wait another year for MRI. I am anxious to have my first one to see what has and is happening. Congratulations on your outcome!!!!
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