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AVM Survivors Network

Gamma Knife side effects


#1

I know that many of you have had this procedure done. I was wondering what some of the bad side affects that you experienced. Matt is going to have the gamma knife procedure in June and we are trying to figure out what to expect after the procedure is over. He was told all about the day of the procedure, but we are not sure what to expect after it was over. Thanks for any information. You guys are so great with all of the help and advise that you are able to give.


#2

Hi Donna,
I had my gamma knife on Dec 1st and so far, no side effects. I have fewer headaches (hardly any, actually) and continue to work hard and live my life as I always did. Thankfully, I found about my AVM by accident I never had a bleed, so this was preventive. I was very anxious and frightened by the procedure, but once it was over–to tell you the truth–I felt so relieved, I felt a thousand times better. In any case, am very glad I did it.
Let me know how things go with Matt.
Best,
Lanie


#3

I didn’t have any side effects. The worst part is that it took up to a year to find out if it worked ok. I thought this one was a lot easier than brain surgery.


#4

Hi Donna,

My daughter is 12 and is having her 3rd Gamma Knife on April 8th. She is sedated for about 10 hours because they have to do an angiogram and MRI’s before they start the Gamma. The worst part for her is having to be wheeled from the recovery room right to the car since it is only ‘outpatient’. She usually has to deal with headaches worse than usual for the next day. The doctors just say to keep an eye on her to watch for brain swelling or seizure. Of course, these risks are very low but they are possible. She usually stays out of school for a few days and then is back to her normal activity. It really just depends on how many ‘shots’ of Gamma and how long the doses are. Jaclyn’s avm is deep seeded and her last Gamma in 07, they could only radiate 1/2 the avm because of the size. Jaclyn is working on 6 yrs since her 1st Gamma and is still fighting it. Unfortunately, this is her only option as she already had 1 embolization and they deem hers as ‘inoperable’ due to it’s location. Good luck to you in making the decisions as every case is different. Matt has been through so much already that Gamma should be a ‘piece of cake’ for him!


#5

I had my first lot of gamma knife in 20004. The treatment may seem medi-eval but, the outcome compared to risk or the unknown is small. My Avm was reduced by 95% and now I’m waiting for the results of my second lot of gamma knife treatment. If I was to be critical about my treatment that I had I would say, It was frightening and looks a bit “Frankinstien”. I look back now and breath a sigh of relief , that I went through with it and have some scars but not all visable. By that I mean hidden by my hair. After the treatment I felt empowered. I was in controll and not this thing in my brain. I was fighting back.Please let me know what you do and how things are/do progress for you.regards, Evan Evans

Kim (Jaclyn’s mom) said:

Hi Donna,

My daughter is 12 and is having her 3rd Gamma Knife on April 8th. She is sedated for about 10 hours because they have to do an angiogram and MRI’s before they start the Gamma. The worst part for her is having to be wheeled from the recovery room right to the car since it is only ‘outpatient’. She usually has to deal with headaches worse than usual for the next day. The doctors just say to keep an eye on her to watch for brain swelling or seizure. Of course, these risks are very low but they are possible. She usually stays out of school for a few days and then is back to her normal activity. It really just depends on how many ‘shots’ of Gamma and how long the doses are. Jaclyn’s avm is deep seeded and her last Gamma in 07, they could only radiate 1/2 the avm because of the size. Jaclyn is working on 6 yrs since her 1st Gamma and is still fighting it. Unfortunately, this is her only option as she already had 1 embolization and they deem hers as ‘inoperable’ due to it’s location. Good luck to you in making the decisions as every case is different. Matt has been through so much already that Gamma should be a ‘piece of cake’ for him!

#6

I had gamma and was back in school after the weekend. Pretty uneventful. Read some of my blogs about what happened one year later. In short, I had some nausea and numbness which I immediately went to the doctor for. I was prescribed three months of steroids and then back to normal. So my experience was pretty positive.

The waiting is a killer though. Try and keep Matt’s mind off the AVM for the year.


#7

It has taken me the better part of 14 months to recover from gamma knife. Mine was January 2007. Mostly I have been so tired and had a lot of seizures. This past few months have gotten better. I hope that all goes well.


#8

Hi Donna I had many side effects after the gamma knife that I wasn’t expecting. The first being stroke like symptoms on the whole left side of my body. I also had severe head aches. Those symptoms disapeared along with the AVM. Now 5 yrs later, I’ve had trouble getting words out or remembering. Also my spelling is awful. This past winter, I went through Hyperbaric Oxygen treatment (because of radiation damage due to the gamma) for 6 weeks 5 days a week. So far things are great and I hve my fingers crossed. Good luck to you, and remember everyone is different. I ve had many seizures also. Im on seizure medicine and keep close eye on that.


#9

One of the symptoms of my AVM was the numb stroke symptoms (my whole left-side of my body went numb. A few times I went to the hospital and thought I was having a stroke. But my neurologist said that it was Jacksonian seizures. http://www.medterms.com/script/main/art.asp?articlekey=7453

I had these seizures for years (my AVM is in the motor cortex region of the brain) – but have slowed down during the past few months. I have other seizures instead. Just thought I would share the type of seizure since it seems to be common with us


#10

I just completed my Gamma knife last week and actually the only side effects I had were caused by the Keppra which they prescibed as an anti-seizure medicine. I was also on a steroid through the process but headaches were minimal, just soreness from the bolts securing the frame.
Good Luck,
Ross


#11

Thank you all for your input. Matt is scheduled for the Gamma Knife on the 24th of June. We are looking forward to getting this over and done with. I know that the year wait can be bad, but after all that we have been through I think we can handle it. After a near death experience we are looking forward to hopefully the last step of this long journey. Matt’s AVM, what is left of it is very small. The doctor told us that it was the size of a small pencil eraser, and since it started out as a golf ball size bundle things are going pretty well for Matt. Thank you all again for all your input and please feel free to add more, I am always interested in what effects others have had, so that we know what to look for and watch out for.


#12

Agreed! Keppra was terrible! I can’t stand the waiting either.

Ross Venett said:

I just completed my Gamma knife last week and actually the only side effects I had were caused by the Keppra which they prescibed as an anti-seizure medicine. I was also on a steroid through the process but headaches were minimal, just soreness from the bolts securing the frame.
Good Luck,
Ross

#13

I had stroke like side effects after my Gamma knife in 2004. Just this past winter I underwent 2-3 months of Hyperbaric Oxygen therapy due to radiation damage. My speech has been affected along with spelling, and memory.


#14

I had Gamma Knife 3 times over the last 10 years and the most I ever got was scalp numbness (from the frame) which did subside over time. All in all, they weren’t that bad. Sure beats an open craniotomy!


#15

Hi

I had my treatment (Cyber knife at Stanford hospital) in July last year and so far no side effects. Went back to work directly after treatment. All the best with yours

Pauline B


#16

GAMMA SIDE EFFECTS:
I thought I would add to this discussion. My son had Gamma on July 2,2008. Now, 11 months later, he is having what the doctors call focal seizures. During this he feels suddenly very weak and his whole left leg is paralysed from the hip down for about 10 min. He said there is twitching in his leg when this happens but he cannot feel his leg AT ALL. The second seizure he had also made his heart beat very slowly and hard and it was very frightening for him. It happened at work and they called 911. (the paramedics and nurses at our local hospital did not know what an AVM was… that was encouraging-:P) But the doctor came to attention when he saw the CAT scan. HELLO!

Anyway we went back down to his treatment hospital and he just had an MRI this week and there is brain swelling. For now, they are going to watch him rather than putting him on steroids right away. His Dilantin was increased to 400mg per day and they will increase it again if he has another of these seizures.
The doctor felt that there is a good chance that this swelling could get worse over the next few months but we are going to watch him carefully for permanent numbness or weakness in that leg.

The doctor also said that rest is critical and if he gets overtired, his chance of having another seizure is much higher. He also told him absolutely no drinking.

I have started him on a load of vitamins that I read are good for brain tissue…my son thinks I’m crazy but I want to do all I can to avoid the steroids and more damage to his brain. This has been so scary for us because besides his first grand mal seizure, he has not had any symptoms related to his AVM.

Anyway, I just wanted to post this so others who have had Gamma will know if the same thing happens to them.
He can’t drive again and he is not a happy camper…


#17

Hi,
I’m wondering how your doing now. My sister is considering Cyber at Stamford also. Thanks!

Pauline B said:

Hi

I had my treatment (Cyber knife at Stanford hospital) in July last year and so far no side effects. Went back to work directly after treatment. All the best with yours

Pauline B

#18

Hi Laura

It has now been 1 year and 2 months since my procedure. I had an MRI after 6 months and the AVM was already being destroyed. Although the doctor said he saw a small amount of inflamation also. I think I have been virtual symptom free although I do sleep more (which could be related to the swelling or not :-)). I should have had a second MRI in July (1 year mark) but I delayed it until the end of the year - insurance reasons. So now I await my second MRI. The Stanford Hospital folks were very nice.

Pauline

Laura Damboragian said:

Hi,
I’m wondering how your doing now. My sister is considering Cyber at Stamford also. Thanks!



Pauline B said:
Hi

I had my treatment (Cyber knife at Stanford hospital) in July last year and so far no side effects. Went back to work directly after treatment. All the best with yours

Pauline B

#19

I just had my radiation yesterday…not gamma but still a different type of radiation made by Brain lab called Novalis. So far I feel ok. My head is a little sore where the pins were but that’s it so far and it’s been 24 hours. We’ll see how things go as time progresses and I’ll keep you posted.

Rachel


#20

It is so good to hear all of your experiences with some sort of radiation treatment. Matt is doing great, no side effects at all to report. I am hoping that the doctor will want to get him in and do an MRI or something in December, just so we will know what is going on in his head. Thank you all for sharing all of your information and I hope all continues to go well for you as well as for Matt. Take care and we hope God will watch over you and bless you.

Donna