Author Topic: Should I expect some side effects if my tumor swells After Cyber Knife?  (Read 5991 times)

MG

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Hi,
 I was just wondering if my tumor that is "touching" my brain stem swells, will it cause me worse side effects as it presses on the brain stem?  ??? What should I look for if it does swell? How long after CK does it take? It's been 3 days since CK and so far I am just really tired out.

Thanks,
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

PaulW

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What happens if your tumour grows from 1.3 to 1.6mm in watch and wait?
Sometimes absolutely nothing.
Other times it's less hearing, more dizzy, facial weakness, taste changes, headaches facial numbness.

Just expect at some point you will end up with more typical AN symptoms and after two years it will be less.
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!

MG

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Thank you for the info Paul W. I will be watching and waiting.

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Blw

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Think about a roller coaster. In addition to swelling, as tumor cells die they also throw off proteins that can cause their own symptoms. My balance has decreased at 6 months post, but I read extensively and knew what was coming and am fine with the process. Even a larger tumor on my upcoming MRI won't be upsetting as this is not unusual.
« Last Edit: July 04, 2016, 10:21:33 pm by Blw »

mcrue

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MG you got it done. Congrats.

Where did you have your treatment?
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

MG

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Thanks Blw. I am also reading up on it and have learned that arounf 5 or 6 months things can change. Hoping they are minor but who knows. Best of luck to you.

Thanks mcrue! I ened up having Cyber Knife in Tampa with Dr. Agazzi. He couldn't of been nicer and made me feel very confident  that I was doing the right thing. He also does surgery. CK was a piece of cake. The mask was simple, no pins in your head to worry about.  :) Now all I do is wait & watch again.
How are you doing? Hope all is weel

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

Blw

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No pins?! Did they use the plastic frame? The frame is generally no problem, but I think mine got screwed in next to a vessle or nerve. Needlesss to say, when I came out, if they had not been right there to unscrew the frame, I would have taken it off myself.

GaryWNT

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  • Ready for 1st MRI post CK . . .
MG
I'm 8 months post CK. Was done at Stanford with Dr. Chang & Dr. Hancock. I had almost no change in symptoms until recently. Had severe fatigue, sudden change in balance, and unclear thinking. Not sure I can blame it on the tumor, but a series of other medical tests turned up nothing amiss. I'm gradually coming out of it, back to normal. Was feeling pretty depressed for a while. Glad to say that is improving. As I said, I can't be sure it's the AN, but I don't know what else to pin it on.

Good luck!!!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

MG

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Hello,
GaryWNT, perhaps your tumor was swelling? I half expect mine to eventually swell but not all of them do. I am glad to hear you are coming out of it. It sure does take a long time to wait!  ::) So basically we are on W&W again! My upper lip seems to be quivering  a lot lately.  ??? Did you experience anything like that?



Blw, Cyber Knife is done with a hard plastic mask that they bolt down to the treatment table. Very easy except for laying flat on my bad back for an hour.

Best of luck to both of you!

MG
« Last Edit: July 10, 2016, 09:57:31 am by MG »
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

GaryWNT

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  • Ready for 1st MRI post CK . . .
My 6 month MRI didn't show any swelling, but that was a few months ago, so it's possible there is some now. I haven't had any lip quivering or facial ticks. Hope those go away for you! Good luck!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

arizonajack

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No pins?! Did they use the plastic frame? The frame is generally no problem, but I think mine got screwed in next to a vessle or nerve. Needlesss to say, when I came out, if they had not been right there to unscrew the frame, I would have taken it off myself.

The screw on head frame is typically used for Gamma Knife, not Cyber Knife. Did you have Gamma Knife?

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

Blw

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GK. Just recognized she wrote CK. My frame hurt quite a bit, but that is unusual.