ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: msuscottie on May 03, 2007, 07:46:48 am
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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!
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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
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What is the worst part of the procedure?
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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
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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
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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?
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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
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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
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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.
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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
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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!
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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
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I guess the steroids are kind of scaring me. Is insomnia the only side effect?
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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
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Ugh!
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Just remember the end result, Scott :) IMO, temp discomfort is tolerable to me if the end result is positive! Hang in there... you're going to do great! :)
Phyl
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I guess the steroids are kind of scaring me. Is insomnia the only side effect?
Scott,
In my case I was only given one steroid pill just prior to treatment. The only side effect I had was elavated blood pressure (160/90).
I did not require any additional medication other Tylenol for the soreness at the pin sites.
Lisa
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So, how do they determine the steroid dose?
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I guess it depends on where you go. I think it was the standard procedure where I went to only give one steroid dose. I don't believe it had anything to do with my particular case. I am only guessing, but maybe it was because of the overnight hospital stay.
I was closely monitored all night, so maybe if I had shown any signs of swelling, they could have administered a steroid at that time.
But, again, I don't know that for sure.
It seems that GK experiences can differ in more than one way. For example, Sue has mentioned some kind of cream applied to her head. I never had that, so maybe that's why I felt more pain.
Lisa
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Scott-I have been on steroids on and off for 20 years. I have chronic asthma. The pills make you a little hyper, but if you eat a good meal and take them with food it will not bother your stomach and you will handle the hyper-ness a bit better. Let me tell you I cleaned the entire house in about an hour. It is like drinking a lot of coffee.
On another note.... do they drill the pins that hold the frame into your head? Or is it pressure? Are you not drugged through the whole thing, including the MRI and GK? My aunt is going tomorrow and if someone could answer tonight that would be great.
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Jeansear,
standard GK attachment of the Halo frame requires 4 screws through the skin to contact with the skull. The area is obviously numbed in advance and I believe valium or some other sedative is utilized to calm the patient. Others who have had GK can better describe their personal experience with it but most posts I've seen here range from "no big deal" to mild discomfort to unpleasant. So I'm sure there is some variation from med center to med center.
Mark
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Now we can have a discussion on whether or not women get through this stuff better than men, generally speaking. We do get to bring children into the world, after all, and I think generally speaking women are pretty tough and possibly tolerate pain, uncomfortableness better than men. Not that you aren't tough, Scott.. ;D But still the question begs "Are men wussier about medical procedures than women?"
Just curious!! ;)
Sue in Vancouver USA
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I'll swallow my pride and say "absolutley."
I think men need to be in control and with this type of thing, you have no control. Thus, we're scrared to death.
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Hey there everybody....just figured I'd chime in for the GK "Zappers".
The headframe for me wasn't bad. They sat me upright, gave me the "happy juice" ...and then I was brought back out. I think the whole head frame experience took about 10 minutes. I walked around with it on, my wife took pics...if you want to see them just email me. It would make a great Holloween costume :)
The whole GK procedure took about 22 minutes and they kept me overnight and released the next day with no meds at all. The did give me steroids the night that I stayed to reduce the swelling from the radiation. I had the treatment on a Friday, and returned to work the following Monday.
Hope this helped...
Gary
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Love your honesty, Scott!!
;)
Sue
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So what do you do in the 2 hours after the attach this crazy frame to your head and you're waiting for the Dr's to map out the procedure? Do you just lay around, walk around in your new helmet?
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Scott, I had the GK a couple of years ago and it's not too bad. I did experience some pain with the shots to the head but one thing I havn't heard from others here is how long their head stayed numb afterwards. Mine stayed numb feeling for a long time, if I recall correctly around two months. I also had some nausea the next day that may have been from the radiation or from the meds.
I think compared to regular surgery it was still pretty tame. the thing to realize though is that results may be slow. So far I have not seen any dark spot on my tumor but on the good side it has not grown any in a year and a half. I did have a slight increase in size after the GK but none since. Now I am in a hold pattern waiting until Feb. to get another MRI
You've been through two surgeries so this should not be as hard. Some folks are using CK now and like it better, no screws in the head but more time for treatment.
I hope you will do great,
Rich
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Some folks are using CK now and like it better, no screws in the head but more time for treatment.
Hi Rich, you are correct that CK is more time because it is typically "fractionated"... one reason for fractionating is so that the surrounding critical brain structures have a chance to "recupe" between doses/days. Usual CK dosage is approx 3 days. I know of 5 days to be used as well (present company included in the latter).
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Some folks are using CK now and like it better, no screws in the head but more time for treatment.
Just to add some clarification to this comment. While CK matches the GK accuracy without the head frame, it can also do one shot protocols just like GK. The majority of folks who choose CK also opt for the fractionated ( FSR) protocol which is typically done in 3 consecutive days and studies so far suggest that increases hearing preservation.
Mark
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Mark, seems that we were thinking alike.. and thanks for the hearing preservation comment as well! You're always "spot on" :)
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Hi Phyl,
So true, I'm humbled to have even been on the same thought process as you. How do we do it :D ;D
mark
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you're scaring me, Mark!..... and I am the one to be honored :D
we now return you to your regularly schedule GK thread!
Hi Phyl,
So true, I'm humbled to have even been on the same thought process as you. How do we do it :D ;D
mark