On July 4th I went for a 2nd consult at Toronto Western Hospital in the AVM clinic & have been accepted to proceed with Gamma Knife Surgery. Now I am just waiting to be called by the Radio Surgeon to learn all the exact details & set up my surgery date to proceed.
I have a very large vein that is draining into my AVM (Ted) & is pushing down on the right side on my brain causes numbness & I have severe daily headaches… Especially in this heat.
I’m Neuroligist from Hamilton General Hospital, Ontario, Canada- supports Gamma Knife surgery as its less invasive than the original plan of possible 3-4 embolization surgeries. & he didn’t want to make TED any angrier if he didn’t have too! LOL
TED… My AVM is the right on the cusp of how big the Radio Surgeon can shrink. I’m looking for advice from people who have had the surgery & side effects they have suffered? Anyone experience Adema on the brain? Or did the headaches & numbness still continue?
I also have Chiari1 symptoms & still have a long road ahead of me for that!
Looking for some advice… Could receive a call with in the next few weeks as I was told my case is pretty critical due to the large vein feeding the AVM & draining into my Brain… Everything’s moving so quick on me, I only found out about all of these issues in February, I feel like I haven’t been able to catch my breath sometimes since then.
Congratulations for being accepted for G.K. (smiling) When I had my G.K. done, I was only having seizures and they were under control with medicine at the time.
You may want to search "gamma knife" in the search area at the top right of this page.
I myself haven't had Gamma Knife for my AVM but I do know there are a lot of people who have had Gamma Knife on this board that can help you out with some advice and let you know what their experiences have been :).
You MAY develop some cerebral edema or tissue necrosis with gamma knife but it sound like in your case gamma is probably the best way to go and surgery can be very risky for more complex AVMS. When i was talking to the doctors about my AVM I kind of leaned more towards Gamma Knife because it was minimally invasive and didn't require anyone cutting my head open and touching my brain (I have already had endocopic brain surgery for an aneurysm and a ventriculotomy placed in my head last year so of course the less brain scar tissue the better!).
What is the wait time in Canada for Gamma Knife? I am originally from Winnipeg but live in Texas and was curious what the wait times for Gamma are up in canada compared to down here in the USA.
Also, I LOVE that you have also named your AVM!! I have decided to leave mine alone for the time being as I don't have symptoms and it is considered to be unruptured. Since i have decided to live with it for now I figured I needed to name mine too...so I decided to call mine Marla (like Marla from Fight Club). :)
Lindsay,
I love to finally hear from someone else who has named their AVM!! I love the name Marla! That’s awesome! My Neuroligist spit laughing when I told him I named him Ted & only refers to my AVM as Ted now! I love it… He said I’m his 1st patient who named it & he loves it. I’m a little worried that since Ted has been apart of me for my whole life that once he’s gone, part of my personality & anger might be gone! My Dr. Burst out laughing & said most patients are concerned about their health & I’m worried about my personality… He’s just apart of me, I now understand why I’ve been “unique” all my life! Lmao
Lindsay- I’ve already heard back from Toronto Western yesterday. I go see the Radio Surgeon on July 31st for my consult then my surgery will be set after that. I don’t know how long it will take. But my case is critical because of this large vein I have draining into my AVM. I was told my Gamma Knife will be soon. My 1st appointment with TW was MAY 30th. They did a clinic study on my case in June. Called me back for July 4th, accepted me for GK surgery. So things are moving quick here for me in Canada. I’ve also had 3 MRI’s since February.
I don’t know what the norm is for people though. I apparently am luck with lots of complications & every new specialist I see keeps telling me I’m critical! It’s been fun since my diagnosis’s to say the least! & I like the crazy person I am… Insisted on going back to work part time on June 10th in the middle of all of this to try to just be “ME” again!!! It’s been nuts!!!
I have a super high stress job as a union president in charge of 206 people for the federal government… But I thrive on stress & helping others! I needed to get back to my office & be back incharge of something again!
I just wish everyone luck with this crazy AVM stuff!!! Reading all of our differences is nuts! No wonder why Dr.s don’t know what to do with us or misdiagnosed us for so long!! I’m just so grateful that I finally know why I’ve been sick for so many years. It’s a miracle that I’m not crazy anymore! Well I am… But now I have proof with TED on disk!!! Lol