Less stable AVM after Gamma Knife?

This has been on my mind quite a bit in the last week and it’s starting to worry me. Has anyone been told that Gamma Knife/any radiation treatment causes an AVM to become less stable? My doctors have not even hinted at this being the case so I’m wondering if maybe it’s something they should have told me when discussing the risks associated with this treatment. Would love to hear if other people have been told this.

i had gamma knife, they said id have no problems, but i kind of lost all balance and that was a week ago. i’m getting better though. i improve every day.

Hi there, not sure but “less stable”, but the GKR can destroy other parts of the brain. It depends where the AVM would be, and how far the risk would be. If the doctors are happy about the area and the dose is within the requirements - then you shouldnt have to worry. If there was a high risk, or even a low risk, they would say.

GKR is a bit like anything we do that may have a small risk - walking across the street can have a minor risk as some driver can come over and knock u over. But im sure your GKR dose was very minimum. Myself ive had 2 major doses of it, ive never had any problems and over 90% was removed over time.

I also had stereotactic radiotherapy back in June (5 mnonths ago on Sat) but am not sure what you mean when you say causes an AVM to become less stable? The doctors did explain to me that the treatment doesn’t stop another micro-bleed, however, it would be nothing compared to what I experienced back in FEB. They also told me about potential swelling that can set in up until 6 to 12 mos but I haven’t had any of that yet either :))!!! If you can, try to change your thoughts and focus on expecting the best and that this treatment is destroying this creature in our brains :)!! That’s what I try to do when I find myself worrying about some of these side effects that my docs had to explain tome. They also did tell me about the side effect of a tumor developing yet this was a very, very low risk. Hang in there my friend and know that his is a form of treatment to heal us completely!!! Feel free to ask me any question you’d like.

Stay strong - and get ready for all of the blessings coming your way!

Hi Lizbot,

If you mean "less stable" Like GK could cause your AVM to become weak and cause a bleed?

Just before they placed the gamma-knife halo on my head my doctor came in and read me all the possible risks associated with my GK treatment just before I signed the consent form. I questioned him about 3 of them as follows!.

  1. Possible post radiation tumors?
  2. Possible post GK Bleed?
  3. Possible post GK Swelling?

  1. The answer to my question what kind of tumor's can I get and can they be cancerous? He said "There is a very little risk (less than 1% but not 0%) that you can get a tumor from any kind of radiation including Xrays, The tumors can be cancerous or benign.
  2. The answer to my question can the GK actually cause a bleed? He said "There has been debated discussions about SRS causing AVM bleeds, but there is no clinical evidence to prove it!" People have had bleeds before and after GK but how do you know it wasn't going to happen anyway?
  3. The answer to my question what percent chance do I have of getting swelling? He said in your case 2% but it will be temporary if you get it.

Well I got 2 out of the 3. Swelling that is under control now with steroids, and a benign cyst that is shrinking as the swelling goes down. However if I was to go through this again I would do it all exactly the same.

My 2.4cm x 3.6cm AVM was obliterated in just 12 months and I'm very happy and blessed with the results...

Hope that helps with your decision.

1 Like

I got absolutely no side effct at all liz, in both doses.

Very interesting for sure! Good info… my son just had Proton Beam Surgery 2 weeks ago and all has been good so far. Keeping our fingers crossed.

Yes, I have been told that Gamma knife can cause a large AVM to become less stable. I had one seizure before the doctors found the AVM and after my first Gamma knife treatment I started to have seizures quite frequently, but I moved for school and started to see a new neurologist. My new neurologist has been planning Embolization and told me due to the size of my AVM it would had been much better to never had have to Gamma Knife treatment. That the Gamme Knife treatment was like opening Pandora’s box. I was told that the only reason that I have to have Embolization treatment was due to the Gamma Knife treatment. Now, I have what they call a stage five AVM which has a very low risk of bleeding from what I have been told, where as a smaller AVM has a higher risk of bleeding. Again this is just what I have been told and I have not done any research. But my first Embolization treatment is Nov Ninth and I am quite worried because the Neurologist also said I can have a stroke.

I also had the Gamma knife treatment. A couple days later I started having multiple seizures everyday, which before I had only a total of three. They did tell me that as the AVM grew smaller that it could leave scar tissue, which is what I have along with some AVM left. So, I now will always have seizures and have alot of nerve damage thru out my right side, worst eye sight, and memory problems. I now cannot work bc of the nerve damage in my hand and arm and my memory so, I have a lawyer and were getting me on disabliity and SSI. I try to stay positive but, i have been very depressed and i am now seeing someone for it.

its a risk - i was told not to have it at all, originally. Im sorry to hear that things have not gone so well. Rosie,Can you just let me know a bit about multiple seizures? I believe it did have them during my actually bleed, but that many years ago, and tbh, im still not entirely sure what would happen?

the week after my Gamma knife my seizures started.(Remind u I had only 2 before the Gamma knife). At first, my right hand would start twitching and go inward and would last a few seconds. Then a couple hrs later it would be my hand twitching And my head going front to back not stopping with my right side of face sticking in an upward position.
Then it went from minor little seizure's to Granmal's. Since it effect's my right side I have this hot electrical rush that starts from lower inside me to my brain and then to my right hand, and will start convulsing...so, I know I'm going into one at least so, I lay down on my left side and it goes flow blown Granmal. I have choked on my tongue before and passed out from lack of oxygen and I have taken chucks out of the inside of my cheeks and tongue and another one where I almost suffecated into the ground. It went from having alot of these happening in one day and as time went on they became a weekly thing and then monthly and so on.
So, to ur question...every one's seizure's are different. Some will go into one without even knowing and will completley fall to the grown and convulse. But, unlike them I know when it's coming on. They say to always lay on ur left side bc u get more oxygen from ur heart that way. They also say most zeizure's will last a few seconds to a minute. Mine will last for minute's most of the time. My longest recorded was 6 min. Most of the time I am awake, but sometime's I black out. I have been most fortunate to have had someone always there. My worst fear is going into one with nobody around.
To me, they are the scariest thing's I can imagine. I would never wish this upon someone else.
It's weird how I lived a completley normal life for about 23yrs and then all of a sudden out of NO where this all started.
I know I was blabbering, but feels good to talk about it to people who have had something tramatic happen in their live's as well, unlike my family or friend's.
I hope I answered ur question Rich!

Yes, our daughter's doctor last week informed us that there is an increased chance of a bleed for up to 3 months after radiation treatment. It didn't give us a warm fuzzy to hear that. We are still waiting for the blood clot to disappear to decide whether or not surgery will be an option. We are praying that the doctor can go in and get it fixed right away.

hi rosie, yes that must be very scarey, i guess mostly because u just have no control on it at all? No medication u can do? (sorry if i missed this earlier somewhere here!) I truly wish u good luck on this road there, and anyone in the same situation....

I had my first seizure at eighteen and within the week the doctors at Cleveland clinic had jumped to GK. About two months after I had my GK I started to have seizures regularly. It got pretty bad at first they would only happen while I was sleep but over time I started to have seizures while I was awake. It is the worst feeling imaginable. I would just be going about my business and all of a sudden I cant talk, like I am screaming but nothing comes out, then when I try reach for anything it feels like everything is slowly moving away while my arms get shorter. I really freak out when I have a seizure while I am awake. like fifteen to twenty minutes later I wake up on the ground feeling like absolute shit. I have had seizures at work, in the bathroom and once on my front lawn where the cops found me with my little niece crying over me. But, the seizures have pretty much stopped when the doctors at the University of Minnesota upped my Keppra to 1500 twice daily. I just had my first embolization. I still have two holes in my groin but with this treatment a pizza slice of hair didn't fall out three days later. I expect to have fourteen more embolization treatments. But, I dont feel as bad as I did after the GK. I understand what you mean about getting it all of your chest, it feels so good.