Author Topic: Any similar post-GK side-effects?  (Read 15027 times)

robinb

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Re: Any similar post-GK side-effects?
« Reply #15 on: August 22, 2013, 01:43:16 pm »
Hello Dian and Petrone-

Glad to see you are doing well!
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

Petrone

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Re: Any similar post-GK side-effects?
« Reply #16 on: October 25, 2013, 06:44:35 pm »
Hi all,

I have a rather interesting Gamma Knife experience to share.  On April 17, 2013, I had GK for a tumor that had shown recent growth to 1.8 cm.  The first two months were uneventful.  No symptoms or side effects.  However, for most of June and July, I experienced severe dizziness and balance issues pretty much 24/7.  I also had a two week period during which I had crushing headaches.  I called them ice-pick headaches because of the sharp, stabbing pains that started just behind my ear and then shot through the nerves throughout the AN side of my head.  (See earlier posts in this thread.)  I contacted my radiologist about these symptoms in late June, and frankly, he was of little help. He offered to put me on steroids, but I declined because I just didn't like what I'd read about them. The radiologist did have me in for an impromptu MRI around the time my side effects were at their worst.  He told me the results showed the tumor was responding, but I never saw that July MRI.  Until today. 

Fortunately, all of my post-GK side effects began to subside in early August.  No more dizziness. No balance issues.  No piercing headaches.  My AN side hearing has declined to almost nothing now, but I can live with that.  I have a Phonak-Cross, which I only use as needed for the occasional restaurant outing or movie.   

Today I went in for my 6-month post-GK MRI.  And the interesting thing is that I saw not only today’s MRI, but also for the very first time, the impromptu one taken at the 3-month peak of my GK side effects.  Wow!  Let me try to describe these images. 

My tumor originally had the shape of a piece of candy corn.  It appeared wide and flat on one end, tapering to a smaller narrower tip on the other end.  But when I saw the 3-month MRI, it looked completely different.  Instead of the smooth contours I was used to seeing, it was all splayed and puffy, like a piece of cooked popcorn. (Sorry about all the snack-food imagery) Also, the expansion filled into what had been a narrow space between the tumor and my brain stem.  My MD measured its size then at about 2.2cm.  He commented that this was a surprisingly rapid response to the radiation. He called me a “rapid responder,” briefly enjoying his pun with a slight grin. He also said that the swelling would explain the dizziness and severe headaches I had experienced during the summer months.

Onto the good news.  Today’s MRI showed that my tumor has already returned to its normal candy corn shape.  All of the splaying and swelling are completely gone. However, it is now slightly smaller than it was pre-GK at about 1.7cm. My MD was very encouraged by these results.  So, by having had the impromptu MRI at 3 months post-GK, I may have had a rare glimpse at how these tumors might respond to radiation. Obviously, we’re all different and our tumors may all respond differently too.  I also realize that this does not mean that my GK is a complete success, but I’m more hopeful now than I’ve been in a while. 

Be well,
Petrone
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

mesafinn

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Re: Any similar post-GK side-effects?
« Reply #17 on: October 27, 2013, 10:10:48 am »
Petrone:  Applause and here's to Hope and Faith!   Glad you're doing better and thanks for providing us more insight into our possible experiences.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

jsanders1379

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Re: Any similar post-GK side-effects?
« Reply #18 on: October 28, 2013, 10:31:20 am »
Hi Petrone-I think I'm having a similar experience to yours. My GK was 5/7/13 and everything was fine until Aug.28-woke up with severe dizziness & vomiting-ended up in ER as I get easily dehydrated. My doc gave me a week of steroids & I got a little better but still very off balance & foggy headed...so he ordered an MRI & a VNG test. The Mri showed pretty significant swelling and the VNG showed 70% loss of vestibular function in my AN ear...so now I'm getting vestibular therapy & hoping my brain can be retrained to live with it...good days & bad days...
Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

Petrone

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Re: Any similar post-GK side-effects?
« Reply #19 on: October 28, 2013, 07:53:37 pm »

Hang in there Jeanne! Be patient - this too will pass. My biggest fear during my worst post-GK side effects was that what I was experiencing was my "new normal," but now all of my post-GK side effects have subsided.  I hope the side effects you're experiencing now will pass soon also.  Peace, Petrone
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

Petrone

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Re: Any similar post-GK side-effects?
« Reply #20 on: October 28, 2013, 07:58:39 pm »
Petrone:  Applause and here's to Hope and Faith!   Glad you're doing better and thanks for providing us more insight into our possible experiences.

Thanks Patrick!  I hope your facial spasms continue to subside too.  You've handled these temporary setbacks with courage, aplomb, and a bit of humor, which always helps.  Please keep us posted as you continue in your recovery and healing.

All the best, Petrone   
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

robinb

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Re: Any similar post-GK side-effects?
« Reply #21 on: October 28, 2013, 08:27:52 pm »
Hi Petr5one (and Patrick and Jeanne and Dian)-

As you know, I had my GK in January and spasms started two months later.

Dr. Lunsford, my local ENT and neurologist all said this would be temporary.

I believed them and my ordeal w/spasms has hopefully been put behind me. Since mid August, I had one mild spasm on Sept. 15th. No twitching, dizziness, or anything else.

Keep the faith, all will be well for us all! 
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

ampeep

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Re: Any similar post-GK side-effects?
« Reply #22 on: April 28, 2014, 07:10:56 pm »
Wow - your symptoms sounded almost identical to mine!  Good to hear that they eventually subsided.
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

Petrone

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Re: Any similar post-GK side-effects?
« Reply #23 on: April 28, 2014, 09:24:42 pm »

Hi ampeep,

Hang in there and take it one day at a time. Try not to be discouraged if you experience temporary setbacks (headaches, dizziness, fatigue, etc.) in the coming months.  My biggest fear during 3-months of fairly severe post-GK side effects was that what I was experiencing might be my "new normal."  Fortunately, all of my post-GK problems gradually subsided.  My 1-year post-GK MRI earlier this month showed no growth. I'm completely back to my old self now and more determined than ever to live life to the fullest! 

I wish you all the best!  (PM me with any questions if I can help in any way.)
Petrone           
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

ampeep

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Re: Any similar post-GK side-effects?
« Reply #24 on: April 29, 2014, 01:07:28 am »
Hi Petrone,

You had side effects for 3 months?  So far, it's been 1 day for me but it sure feels like a lot longer.  I now know what you mean by ice-pick headaches!

Really appreciate your encouragement & sharing of your experiences.  You're an inspiration & I will try to be like you.  Good to that you're back to your old self and doing well after a year.

Thanks, Keith
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms