Author Topic: To Gamma, or not to Gamma ...  (Read 12465 times)

msuscottie

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To Gamma, or not to Gamma ...
« on: May 03, 2007, 07:46:48 am »
That is the question.

I had appointments yesterday with my Dr's to read my 1 year post op MRI from my second surgery. For those of you I haven't met. I had a large AN, a bit larger than a golf ball, that was debulked in surgery #1, and then further removed in a second surgery. The residual is about the size of a thumbnail.

The MRI shows that it hasn't grown, but it's still signifigant (2cm). My thought process has always been to leave it alone if it's not growing, but both of my Dr's are (95%) sure that it'll grow in my lifetime. My neurosurgeon made a great analogy comparing it to a battle ...

"we've charged the tumor and it's retreating, it's back on it's heals, but if we just wait and watch we give it a chance to regroup and attack us again, if we use GK, we can kick it while it's down."

GK sounds like the right thing to do, to hopefully end this tumor for good, but it's very scary, especially after having already had 2 brain surgeries. Has anyone here had GK? Is it anything to worry about? Some have said it's "no big deal," but I find that hard to believe.

I basically have to options. Wait & Watch and let this tumor regroup and attack, or go with the GK and kick it while it's down.

I really don't know what to do?

I'd appreciate your feedback.

Thanks!

Sefra22

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Re: To Gamma, or not to Gamma ...
« Reply #1 on: May 03, 2007, 08:16:34 am »
Hi Scott,
I had GK 6 weeks ago. Of course, it's too early for me to know the results, but I don't regret my decision for a second.
I wouldn't go so far as to say "it's no big deal", but I think the most difficult part was making the decision, the arrangements, and the
stress that goes along with all that. The thing I am most happy about is that my life was not interrupted by hospital stays and recovery.
Lisa
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

msuscottie

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Re: To Gamma, or not to Gamma ...
« Reply #2 on: May 03, 2007, 08:21:26 am »
What is the worst part of the procedure?

flier58

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Re: To Gamma, or not to Gamma ...
« Reply #3 on: May 03, 2007, 09:10:00 am »
Hi msuscottie,
This baby of yours is getting cuter and cuter.  What a doll.  I had CK so lying down more or less motionless for 40-50 mins was the most daunting for me.
Flier58   

ppearl214

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Re: To Gamma, or not to Gamma ...
« Reply #4 on: May 03, 2007, 09:54:16 am »
Scott, baby is DEFINATELY getting cuter! :)

Question... I know you are asking about Gamma... but have you considered fractionated treatment (ie: FSR, CK, etc), since you have already endured AN treatment and want to make sure all critical structures are reduced risk as possible by fractionated treatment?  Just a thought.....

Ok, to answer your question about GK (as to the best of my ability), some have noted the metal headframe as a temp inconvenice/discomfort, but noted as temp.  I'd have to research here but some noted that application of the headframe was ok, since happy pills were kicking in, but after treatment, some discomfort from where the pins in the head were......

Hang in there!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

msuscottie

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Re: To Gamma, or not to Gamma ...
« Reply #5 on: May 03, 2007, 10:49:39 am »
Thanks ladies, I'm not familiar with FSR, we talked about CK and why GK might be better for my situation, but he didn't mention FSR?

Sefra22

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Re: To Gamma, or not to Gamma ...
« Reply #6 on: May 03, 2007, 11:04:18 am »
What is the worst part of the procedure?

The worst part was the placement of the headframe. It was more painful than I had anticipated, but was over very quickly. I did have to wear it for the entire day, because they use the frame as a point of reference when reading the MRI and CT scan I had that day.
It took several hours for them to map out the tumor, so it was a bit uncomfortable to be wearing it all day, but not painful once it was on. The removal was not painful at all, and I slept like a baby that night in the hospital. Depending on where you have treatment, you may not have to stay in the hospital. It was explained to me that it is a Rhode Island law that requires patients who have undergone radio-surgery to the brain, must be kept overnight.
I did also experience some pain at the sites where the pins went into the back of my head. There was some fluid leakage, but I had my PCP check it out, and after running some blood tests, it was found to be not infected. Even that pain lasted only a couple of days, and was far from severe.
Lisa
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

Sue

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Re: To Gamma, or not to Gamma ...
« Reply #7 on: May 03, 2007, 07:17:12 pm »
Hi Scott,

We've chatted before about this and you've read my story....but here I go again!

What are you nervous about exactly?  Surely GK can't be as daunting as two brain surgeries!!  Is it just because it's another procedure that you've never had before or are you nervous about radiation or just the major uncomfortableness of it all? 

I recently had to undergo the common procedure of colonoscopy for colon cancer screening. My husband had this already, my aunt had this, my parents had this and now it was my turn.  I'd heard them all say that the "getting ready" part was far worse than the actual procedure.  But, after the 4 days of getting ready and the big "clean out" (I know...too much information! :D) I was still nervous about the actual procedure. Well, duh.....they drug ya!  Piece of cake. 

So, here's my take on the above:


#1 New procedure?   After two surgeries, you probably want another "procedure" like you need a hole in your head.   ;D  Sorry, Scott...couldn't resist!   Anyway, the only holes you get are 4 very tiny pin sites that heal quickly.  And as far as "procedures" go, this one certainly is less invasive than a colonoscopy, and it's more interesting and it does have the WOW factor with the cool techno-gadget-Cobalt 60 stuff you can impress your friends with.

#2  Radiation?   Scott you've probably read the other posts on this issue.  It's technology that helps people and kills tumors. 

#3 Major uncomfortableness (I think that's a real word...)  Okay, everyone is a bit different here.  And maybe it depends on your doctor and how much meds they give you or something, but the cream on the head deadened the skin, the quick needle injection of further local anesthetic really numbed the pin sites for me, so that when they put on the headframe (after I'd received the relaxing white pill - that's the duh, they drug ya part again...) I don't remember any pain associated with it - only pressure.  The front right side of my head dug in a little deeper for some reason and that's where it was the most noticeable.  The next day, the head nurse called me and asked..."Was any part of this painful?"  They wanted to know! They don't want to hurt you!  I said no.  But, other's have remarked that they had a bit of pain with the headframe. Personal sensitivity to pain, amount of anesthetic....for whatever reason, this might be different for you. After that there is nothing else painful about the rest of the GK. I went in at 6 AM and I was home before noon. The pin sites were a little sore after the anesthetic wore off, and it's sort of weird because the anesthetic sort of drifts around your head, I guess because there isn't that much tissue to absorb it or something...so you get weird little numb spots as it travels around.  Nothing painful....just weird. And if you've done steroids already, you probably know what that's like. And for me, after stirring up my AN, the nerves on my AN side of my face went crazy and I felt like I'd been burned but it was tingling and lighting up the nerves like a neon sign on the fritz. I held a cool washcloth to my face.  And, for me, there was no way on God's Green Earth that I would have been able to go to work for at least two weeks.  It and the steroids and the insomnia really wiped me out. 

But, Scott, you've had TWO surgeries and the rotten thing is still hanging on my by it's fingernails.   After all of that, you might as well deal the death blow to that stupid thing in your head, and nuke it one way or another. And when it's all said and done, you'll probably say, "Piece of cake!".

With kindest regards for the very best outcome, no matter WHAT YOU DO!!!!! ;D ;D ;D

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

shim

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Re: To Gamma, or not to Gamma ...
« Reply #8 on: May 06, 2007, 08:33:31 pm »
I had GK 2 days ago the head frame mounting was a little uncomfortable but that was it,they kept me over night for observation and sat. am went home and went on with my weekend.

Sue

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Re: To Gamma, or not to Gamma ...
« Reply #9 on: May 07, 2007, 01:50:39 am »
I kind of wish I'd had an overnight stay, because then I would have qualified for some additional insurance from my husband's office, that I didn't get because I went home!  Can't win, sometimes.

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

msuscottie

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Re: To Gamma, or not to Gamma ...
« Reply #10 on: May 07, 2007, 09:25:05 am »
You guys are awesome, thanks for all of info. Sue, you make me laugh and totally help to ease my worry.

I'm not sure what I'm so scared about, the headframe, the steroids, to lasers burning into my brain, but I just kind of subscribe to the whole, "whatever can go wrong, will go wrong" thing, very pessimistic after 2 brain surgeries.

I haven't really had to deal with steroids yet, what am I in for?

My Doctors keep telling me I can return to work the next day, to which I say "crap." If I'm having another procedure, I'd at least like some time off of work   :)  What is the recovery time? How much time could I get away with taking off?   :)  Gotta find a bright spot in all of this!

Are you mobile once in a headframe? Can you still go to the bathroom and stuff? I'm totally ignorant.

Thanks again everyone!

Sue

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Re: To Gamma, or not to Gamma ...
« Reply #11 on: May 07, 2007, 05:07:53 pm »
Yes, you can go potty in the headframe!!  Just don't look at yourself in the mirror and faint! ;D  The deal is the meds, Scott.  By then, you have had whatever it is they will give you to chill you out, and you might not be wanting to walk around.  You might ask about the steroids. Since yours is small now, maybe they won't give you any.  Steroids made me feel TERRIFIC the day after, and then it went steadily downhill as the insomnia kicked in and I found it difficult to function after about 4 days of that. I think with the CK since you get a smaller dose of radiation over a longer period of time, people can go about their business, return to work, go out to lunch, etc...but with GK, the one shot wonder, it just takes awhile to get over the meds, and the procedure.  And this probably depends on your age, general state of health, strength level, etc.  So, you might be able to go to work the day AFTER the procedure if you have the steroids, because you're going to feel really good and have a lot of energy. You will want to paint the house, clean out the garage, wax the drive-way - in short you are going to turn into a Boarder Collie.  If the steroids work on you the way they work on most people, by the end of the week you will be - not happy. And I don't know how anybody can work and  drive on 2 hours of sleep at night. But then, sleep returns and all will be well. Or ask if you can take sleeping aids.  I never did ask, so don't know if it will be allowed. So, just be prepared to stay home if you are put on steroids. I don't know about everybody else, but they just about did me in! yuk

Hey, at least you don't have to be on a liquid diet for a day before and take that nasty Fleet drink stuff that makes you run for the "loo".

Hang in there, kiddo.

Sue in Vancouver


Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

msuscottie

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Re: To Gamma, or not to Gamma ...
« Reply #12 on: May 08, 2007, 07:06:04 am »
I guess the steroids are kind of scaring me. Is insomnia the only side effect?

ppearl214

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Re: To Gamma, or not to Gamma ...
« Reply #13 on: May 08, 2007, 09:04:49 am »
I guess the steroids are kind of scaring me. Is insomnia the only side effect?

Hey Scott....

Um... no... let me put it this way.. to keep this "clean" in nature... drink LOTS of water to help keep your system "regular".  My dr gave me a wonderful, natural remedy of heated prune juice and honey....... there were threads on it this time last year re: the post-treatment, steroid use "issue" some of us had.......

Insomnia will begin to wear off approx 1 week after you are off steroids. It really does depend on if they give them to you, how much for how long.....

Cheering you on! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

msuscottie

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Re: To Gamma, or not to Gamma ...
« Reply #14 on: May 08, 2007, 09:46:02 am »
Ugh!