Hi, I’m going to be having a consult on radiation.My avm is 6x3x3 and is pretty much taking over my brain.I had 2 back to back crainiotomy in 2000 without success.NOw it is recruiting veins from my scalp and has made a drain through my left eye and face.They say radiation is the only way to go.I’m in Canada so I’m sure they don’t get as many avm’s up here.I don’t know what the consequences of this type of procedure could be.I’m looking for advice from people who have been through it.They are going to try and do it without a halo cause there are to many veins they may rupture when they screw it on.I’ve been trying to find info but not much success.All I know is i’m scared.
Hi, Trina.
I came across your post because I was wanting to read personal stories from anyone who’s had a craniotomy. Your story is so heartbreaking. I’m so sorry that you are experiencing this. I’ve had gamma knife three times. My first treatment was after my AVM hemorrhaged 26 years ago. At that time I was one of the first AVM patients to be treated with Gamma Knife at the Mayo Clinic in MN. The results aren’t immediate. The focal radiation takes 2-4 years to show results due to the gradual scarring process. During followup they found a piece of the AVM that wasn’t targeted, but most of the nidus was obliterated and I went through a second radiation. This time it did not respond, so they put me through a third. The last treatment was in 1999 which resulted in a small remaining portion of the AVM that was resisting radiation and some scaring of surrounding brain tissue where the radiation had overlapped those three times. This year I began having symptoms that lead to an MRI where I learned that the AVM had returned. I’m going in next week to weigh the pros and cons of treatment options with the neurosurgeon.
The Gamma Knife process had changed a bit just in the 9 years between my first and my third treatment. It’s mostly painless, but it can make for a long day while the dr’s figure out radiation settings. The most uncomfortable part for me was the head frame, but that does not sound like an option for you. Nausea for a couple of weeks following radiation is normal. I had no other ill side effects after my first or second treatment. I had one grand mal seizure about three months after my third Gamma Knife due to brain swelling and likely to the fact that it was my third time through (post radiation changes to surrounding tissue from multiple exposures to radiation).
I wish you all the best and hope for a successful treatment. You are amazing. You’ve already been through the most frightening surgery I could imaging. Spending a day in a Gamma Knife Suite will be like a spa visit in comparison. And you get to sleep at home in your own bed at the end of the day.
Hang in there and keep us posted. You are surrounded by people who understand the feeling of fearing the possibilities of something you cannot control that you never gave permission to take up residence in your body. You are going to kick it’s butt and reclaim your space. I admire your strength.
HI KDee,
I’m new to the site and haven’t quite figured out how to read stories yet.Don’t be sorry it is life and no one ever said life was going to be easy.My opinion is God never gives you more then you can handle and it shows how strong you are.It has been a rough ride.I should have figured when things were some what quiet with my head that something was up.I’m in Canada so my procedure will be up here.They told me that it could take 2-5 yrs before i see any results cause of the size.They also said it could take up to 6 months to show any bad affects like speech loss or body function.It is scary.My mom and significant other are worried about the consequences and I’m just as scared.I have the option to just keep living how i am but my avm is pushing into my left side of my brain also and is affecting my eyes more everyday.I wish the evil yarn ball could be plucked out.How big was your AVM? The other thing is they can’t MRI me cause i have clips from my surgery.I hope you can get yours figured out.I don’t understand how they manage to come back after they are suppose to be gone.Did they put you on any meds after? Thank you for sharing and for the words it means alot.I hope things work out for you please let me know.Best of luck.
Hi Calgurl77.
I’m so sorry to hear what you are going though. But I think you are being so brave in your approach and it is inspirational.
I have a large AVM of the Cerebellum and am fortunate enough to say it hasn’t ruptured. However I have never undergone treatment either. I’m in the UK and docs here say craniotomy isn’t an option for me. Embolisation and gamma knife were suggested but the odds weren’t good enough for me compared with the odds of deficit. However to be honest my AVM is pretty stable and has been for years. It isn’t growing and doesn’t cause many problems in my everyday life. I know I am very lucky and this isn’t the case for you. So I think you probably have to do this if you don’t want things to get worse.
From what I understand you are right and the results of Gamma Knife aren’t clear for a few years. Its because the therapy is working even after the actual treatment. Unfortunately AVMs are pesky things and unless they are removed completely they just recruit more tissue and regrow themselves. This is what happened to most of the members that report their AVM came back.
I wish you every bit of luck in the world.
I had my consult.I listened to the doctors.I heard the pros and cons.I have decided to not go with the radiosurgery. I don’t like the results and now have an appointment with my neuro doctor on halloween.I have some of my own thoughts on why things may have changed.I was on a drug to help for migraines but was also extra siezure meds in my system and they couldn’t seem to fill the prescription there was a shortage and i think that may have caused the dialation of veins.I think I’m going to discuss my meds and see if adjusting them some will help.