Author Topic: My personal gamma knife experience 1-24-13  (Read 145092 times)

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #150 on: October 26, 2014, 11:24:58 am »
Interesting, thanks for posting. This is only my 2nd post GK MRI. My last radiologist report had me worried but then it turned out UPMC was satisfied w/it and not concerned. Will post again when I hear back.

I guess only us AN'ers use the word "necrosis".
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

rupert

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Re: My personal gamma knife experience 1-24-13
« Reply #151 on: October 26, 2014, 08:47:26 pm »
I haven't read through all your posts to know if you look at your own disk or not.  I always look at mine and measure and do all that stuff.  They usually show darkening in the center at first then that kind of goes away. After time they seem to get whispier, if that's a word.  I also measure and can tell it's smaller so hearing that  from the surgeon also,  is always good.  My point to all this is: just don't get too rapt up in all the tech stuff.  If everything is fine they will tell you that. Relax and don't stress over size and "necrosis".  LOL.  I have a hunch you'll be just fine.   B.
« Last Edit: October 26, 2014, 08:50:08 pm by rupert »

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #152 on: November 01, 2014, 04:00:04 pm »
So here's the response from Dr. Lunsford:

Quote
While I think that tumor imaging follow up shows minimal tumor volume increase, which we see in about 4-5% of patients, there is no evidence of continued activity or growth. There may be delayed shrinkage over time. Unless there are any new clinical symptoms, we could probably get a new MRI scan in a approximately two years, or sooner, if you feel like there are any new concerns. 

At this point I consider my case closed as I had already moved on prior to this based on how I feel. So unless things take a turn for the worse, I am done w/the discussion board for the next two years. I am grateful to everyone that helped me on the way.

I will always respond to PM's and to those that contact me through the WTT list.

-Robin

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

ASG

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Re: My personal gamma knife experience 1-24-13
« Reply #153 on: November 03, 2014, 07:10:45 pm »
Good stuff. See you in two years when we're all driving flying cars.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Bonnie B.

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Re: My personal gamma knife experience 1-24-13
« Reply #154 on: November 10, 2014, 10:00:22 am »
Hi Robin,
great news.  Your latest MRI report is about the same as mine.  GOOD NEWS!!!  My doctor has me getting another MRI in 12 months so, in March, I am positive it will continue to be great news.

Bonnie
1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

mcrue

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Re: My personal gamma knife experience 1-24-13
« Reply #155 on: January 10, 2016, 10:27:14 am »
Thank you for posting this thread. It has been very informative for those of us considering radiation.

As you know, it can be a difficult decision process choosing between radiation or microsurgery. Each has their own set of "pros and cons."

Glad to see everything is going so well. We're looking forward to hear about your 2-year successful update!
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

DizzyMamaIL

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Re: My personal gamma knife experience 1-24-13
« Reply #156 on: March 04, 2016, 06:25:38 pm »
Thanks for the journal and thanks for putting the link to it in your signature. Very helpful!
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #157 on: December 31, 2016, 06:14:05 pm »
Well I have been off the forum for a little over two years, although I continue to connect w/people that contact me through private messages or the WTT list. Yes no news is good news. Life is great, working usual 60+ hours a week, however we now take a 2-3 week vacation. Last three cruises and just booked another for 2017.

I had my 2 year MRI yesterday and sent the disk off to Dr. Lunsford. Will report back when I hear from him. Still have constant tinnitus and no usable hearing on the AN side. Used to it now.

Still carrying around excess weight, started new regimen with a personal trainer/coach and dropped 7 lbs so far.

When I hear from Dr. L I will report back. Best to all for a wonderful 2017!
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

rupert

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Re: My personal gamma knife experience 1-24-13
« Reply #158 on: January 02, 2017, 07:53:47 am »
Cruise on my fellow UPMC AN alum.   :) :)

cathyroe

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Re: My personal gamma knife experience 1-24-13
« Reply #159 on: January 04, 2017, 06:35:09 pm »
Thanks for the update, Robin. Please let us all know what Dr. Lusford reports back. I know it will be good news!
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #160 on: January 07, 2017, 10:47:10 am »
I did get the radiologist report; says tumor unchanged. Will see what Dr. L. says.
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

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #161 on: January 11, 2017, 04:38:16 pm »
Email from Lana today saying "Dr. L evaluated my images....everything looks good, you will get his official letter soon."

Those of you that had treatment with Dr. Lunsford know that his letters dont say much more, other than when to get my next MRI. If I hear anything different, will update.

So good news, but I'm still wishing I heard there were signs of necrosis! I just realized over 4 years since my diagnosis and almost 4 years since GK.

Cathyroe- hope your spasms easing up; call or email me any time. Same for anyone else that reaches out through this forum or the WTT list; I will always respond asap.

Be well everyone!

-Robin
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

cathyroe

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Re: My personal gamma knife experience 1-24-13
« Reply #162 on: January 14, 2017, 11:04:21 pm »
Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

robinb

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Re: My personal gamma knife experience 1-24-13
« Reply #163 on: January 15, 2017, 12:25:04 pm »
Good news Robin!
My spasms have gotten much worse in the past week. Like 10 a day! I started the gabapentin, so we shall see. The weird thing is, I was only having like 2 or 3 a day until I started the gabapentin, and now they seem to be just all day long. If I eat, drink, exercise, talk.... wham! Spasm!
How long did it take for your drugs to kick in when you took it?

Cathy-
I kept a detailed journal of the spasms, I had a weekly review with Lana during this prioed until they finally stopped in Agu/Sept. They definitely started to get weaker and less frequent as I ramped up the Gabapentin. What day and how many mg are you up to?

I will PM my journal to you; TMI for this thread.

-Robin
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

cathyroe

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Re: My personal gamma knife experience 1-24-13
« Reply #164 on: January 16, 2017, 07:49:13 am »
Thanks Robin,
I wish Lana had asked me to check in with her at all! She didn't offer me weekly telephone meetings, or any further communication. Maybe I'll just email it to her anyway.
Thanks so much for letting me see your journal. At least I will have something to compare to.
I started the gabapentin 6 days ago and am now up to 100. Mg. 3  times daily.
I am trying to make an appointment with a neurologist. So far, the soonest I can see one locally is 3 months from now!
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8