Author Topic: First annual check up after CK  (Read 3397 times)

chloes mema

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First annual check up after CK
« on: April 05, 2013, 02:26:38 pm »
Today was my first annual appointment with my neurotologist after my CK.  There was some good news and some not so good news.

The good news is that the center of the tumor is darkening which Dr. Bartels said means either necrosis is setting in or at least there is diminished blood supply to the tumor.  He said the size has not changed at all; not bigger or not smaller.  I'm not sure if that falls under good news or not, you all be the judge.

The not so good news is I'm starting to be labeled SSD, Dr. Bartels sent me an email with website addresses for the five hearing aids he prefers (or uses for his patients); BiCros by Phonak, Soundbite, Sophono, Oticon BAHA, and Cochlear BAHA.  He asked me to review all these then get back to him to make an appointment for an audio test and consult.  So now back to reading, studying, and making life changing decisions again. 

The next not so good news is I had a hemi-facial spasm while he was present so he could see what was actually going on.  (I've come to the conclusion that stress does trigger them in me.)  He said the spasms will probably never go away, he suggested I get Botox around my left eye (AN side), and he wrote me a prescription for a years worth of Valium  :D (better living through pharmaceuticals...).  The Valium is because I told him that steroids and Gabapaten did nothing for me but coincidentally on my own I noticed that the day I took Valium for my MRI I had no spasms for 12 hours.  He also made notes that I'm displaying facial muscle weakness; he mumbled something about a 2 on a scale of 6 but I didn't catch all that. 

So all in all, there really wasn't any new news today, I already either knew all of the above or suspected it.

So that's it in a nutshell till next year when I have another MRI.  Interesting that he's going straight to annual MRI's not messing with the 6 month ones.

Karen 
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

robinb

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Re: First annual check up after CK
« Reply #1 on: April 05, 2013, 05:51:15 pm »
Hi Karen-

Focus on the good stuff...

Thanks for all your info and help.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: First annual check up after CK
« Reply #2 on: April 05, 2013, 06:59:39 pm »
Karen

Sorry to hear the not so good news.  Try to stay positive.

Tom

arizonajack

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Re: First annual check up after CK
« Reply #3 on: April 05, 2013, 09:21:00 pm »
The good news is that the center of the tumor is darkening which Dr. Bartels said means either necrosis is setting in or at least there is diminished blood supply to the tumor.  He said the size has not changed at all; not bigger or not smaller.  I'm not sure if that falls under good news or not, you all be the judge.


According to my neurotologist, and what I have found on the internet, the darkening of the tumor is expected, and a little swelling is also expected. I found a 36 month progression of MRI images that start with a tumor that looks about the size of mine.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

Note that, by 24 months, there should be some shrinking.


The not so good news is I'm starting to be labeled SSD, Dr. Bartels sent me an email with website addresses for the five hearing aids he prefers (or uses for his patients); BiCros by Phonak, Soundbite, Sophono, Oticon BAHA, and Cochlear BAHA.  He asked me to review all these then get back to him to make an appointment for an audio test and consult.  So now back to reading, studying, and making life changing decisions again. 


I've had the Phonak BiCros for about a year. I only had the one choice through the VA but it's worked out pretty well except for background noise in restaurants or noisy social setting but I don't think any brand is very successful in that area.

I've noticed that there have been discussions on this forum about all of the brands on your list so you can get real life info from users.


3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

PaulW

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Re: First annual check up after CK
« Reply #4 on: April 07, 2013, 03:48:14 pm »
Hang in there...
I know from my experience things have improved a lot from 10 months post CK to 33 Months Post CK where I am today.
So hopefully things will get better on there own.
Tumor swelling can continue for up to 24 months or sometimes longer and the treatment can be a success.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

chloes mema

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Re: First annual check up after CK
« Reply #5 on: April 07, 2013, 04:02:46 pm »
Thanks all.  I'm confident that things will improve since I've seen much improvement already in my balance, dizziness, & wonkie head.  I'm also encouraged by reading other posts where people have made great strides over months / years.

Just need to keep focused & healthy!   ;)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back