Hello everyone. I turned 21 in October. This all started because I started having near syncope episodes at my job and they became frequent. Of course I had a host of other symptoms I would have during these episodes, but they would lead to me almost passing out (near syncope). After going 9 months with no diagnosis I finally was diagnosed with my inoperable 5cm vein of Galen avm. I would like to know how if anyone here has this specific avm and has done gamma knife or holistic treatments? I would also like to know of any after effects. Thank you so much in advance.
Hi Kai, and welcome! I hadn’t heard of the Vein of Galen Malformation before and just gave it a read. I had an AVM left temporal and had Gamma Knife in 2016 which was successful, mine was much smaller. If you go to the magnifying glass in the upper right and search Galen, you will see a number of threads. It may be worthwhile to give read and reach out. Our group is really open and I’m sure it would be beneficial. Again, welcome and take care, John.
I’ve invited a handful of our more recent VGM members to join the conversation. We do have quite an array of folk with the same malformation but a lot of them are way back in 2009, 10, 11, so will have moved on, changed email addresses etc.
If you use the icon above, keep an eye on the date of each post. “Jan 11” would mean 11th Jan this year but “Jan '11” would mean January 2011 – the difference is really subtle – just the apostrophe!
Welcome to the best group of AVM-ers anywhere. We will lend support and encouragement to help you on your AVM journey. Being newly diagnosed we all know the fear and confusion that you feel. We’ve all been there. My 4.0 cm AVM is in the Cerebellum and it was treated with Gamma Knife Radiation. Because of the location, Gamma Knife was the only option open to me. I’ve had 2 GKR treatments and I had no serious side affects. I did have a mild headache for a week or two. My AVM is not completely gone, but only a small portion remains. Gamma Knife offers no quick fix. It’s been a long journey for me (6 years), but I’m still in the game. I wish you all the best.
Kai, I called you Kricha. So sorry for the mix up. All the best, again!