AVM Free after just 1 year post GK

As some of you know on Monday I went into the ER with really bad headaches that had been progressively getting worse over a week up to a pain scale 10 I was also throwing up. I have the pain and swelling under control with steroids and just had a angio which confirmed I’m now AVM free. Yay. Update since coming home I sent my records to The Gamma Team at USC for them to take a look for me. I got a call and they said there is a new cyst near the AMV site. 1.4mm. The Dr’s at the ER did mention something about a cyst but it didn’t seem to be concern so I kind of forgot about it. However now learning that cysts are a rare but possible side effect after SRS I have something more to worry about. I’m waiting for the doctors to get back to me with a detailed report and their recommendation what to do if anything about it.

Congratulations, Brett! Great news!

Super Hurrah!!!

Oh Brett…you now have to update your profile page from active to obliterated!!!

WOW! That’s excellent! Congrats!

WOW this is the BEST news I’ve heard all day Brett - AWSUMMMMMM and am so happy for you!!! As I say, yet another AVM “bye bye”!!! Everyone on this site is giong to beat this trial that we have all had to face :)))!!!


Woohoo! Brett–this is great. And so fast. You definitely did the right thing.
I’m really happy for you and your family.

Fantastic news Brett!! So wonderful to be AVM FREE…Congratulations and all my very best wishes to you and your family!!

Congratulations Brett! Great news for you!

That is amazing new Congratulations!

Thank you everyone. First day at home now and I have a lot to catch up on being out for 3 days including fixing a plumbing hemorrhage in my house. I came home to an upstairs water leak into my kitchen. “Whatever” not a bad trade off. :slight_smile:

YAY! So happy to hear :slight_smile:

Congrats!!! So wonderful to hear that for you!

congrats its great to hear that someone has had great results,

Congratulations on being AVM free!

Thank you everyone. I just updated this post to let you know I have a cyst near the AVM site now so I’m not 100% off the hook.:frowning: I’m still learning about this new find! FYI These Steroids are horrible. Cant sleep, breaking out etc. Take care.

Congratulatios on the great news! I, too, underwent Gamma Knife treatment for my AVM after several embolizations, as my AVM is too deep to be operated on. I was never told of the possibility of a cyst forming. Just have a few questions about your case- how long was the predicted amount of time from Gamma to AVM disappearance? My Gamma was on May 11, 2011, and I was told that we would not even look at it for at least 1 year, but they would estimate it to completely disappear 2 years after Gamma, i.e. May of 2013. Furthermore, were you told if your pain and nausea were typical symptoms of the closing off of the AVM? Should I be looking forward to these feelings as they will be indications that I will be in the clear zone? I am very anxious to finish with this AVM once and for all, and time seems to be creeping by for me…

Hi Birdie,

FYI I had a 6 month MRI that showed little to no change at all so I think 12 months is a good time to check on it unless you are having problems.

They predicted 2-3 years and the doc said it “will” shrink its just a matter of how much? It took only 12 months to the day and the doctors are surprised. Treated with GK 9/14/10 went into ER on 9/12/11 spent a couple days doing CT MRIs bring down the swelling with steroids and a PET scan looking at the Cyst to rule out the Cyst as possible Malignant tumor. Thankfully it’s just a benign cyst. Finally they did an Angiogram on the 9/14/11 the one year anniversary of my GK treatment. That’s when they confirmed it was obliterated.

I’m still learning about the Cyst and have made an appointment with the doc to have a chat. I did do some of my own research and its pretty rare (less than 2% chance) so I wouldn’t be worried about that if I were you. I’m just special I guess, so I get one. Here is a study of cyst’s

When I signed my GK consent the doc read all the possibilities including a seizures, post gk bleed, tumors malignant or benign, death, yada yada. I questioned him about post gk bleed he said there has been discussions about it but no evident proof so I guess they have to disclose every possibility ever talked about. I guess a cyst would come under the tumor category kind of like a water filled sac. I’m hoping it will just dry up or something.


Yes my doc said I may get headaches as the AVM closes off it’s feeders and I could feel something was going on between the 6mo and forward. I would get these headaches that would last like a week and then go away. I was pretty sure that was a sign of the AVM closing off.


The swelling was a little different however. These headaches came on progressively slow over like the last month leading up to the ER visit. I could feel pressure in my head, eyes, neck etc and then I started getting nausea and finally throwing up at the ER. Tylenol would not work at all the last few day before ER, I could not lay down in bed because it felt like my head was going to explode. I asked a few members on here that had swelling and none of them experienced it the way I did. However one doc did confirm what I was feeling is a common symptom of swelling. It’s just strange to me there is not more info about that on this site. I read Ben’s post and he said he just started throwing up, another member just has numbness and drop foot etc. So I don’t really know the true answer to that question but I know it was the swelling for me because as soon as they put me on steroids the pain just went away almost instantly.

Bottom line is I could feel the GK doing it’s job from about the 6 month point forward then the swelling kicked in. Hope that helps…

Congrats Brett on becoming avm free!!! Hope the cyst doesnt give you anymore problems. So happy for you!