My AVM journey began October 20, 2016 when I had my first, and so far only, grand mal seizure. I was backing out of my driveway and ended up in the neighbor’s front yard. I was awoken by my husband and EMT. I was then taken to the emergency room where a CT Scan was ordered. The results showed an AVM on my right temporal lobe about 2-3cm. The next day an angiogram was ordered that confirmed the results. I was shocked because prior to this seizure I did not have any symptoms. The next couple of months were spent researching options and getting multiple doctor’s opinions. Every medical opinion was to remove it either by radiation (Gamma Knife) or surgery. I decided to do surgery because my AVM was located in an area that resection has an extremely high success rate and surgery causing deficits was extremely unlikely. Next, I did my homework on neurosurgeons that specialize in AVM removals. I live in Covington, LA, but decided to have the surgery done at New York-Presbyterian/Columbia. My husband and I spent 10 days in New York and 5 were in the hospital. On December 28th Dr. Philip Meyers did the embolization and the following day Dr. Sander Connolly (born and raised in New Orleans, LA) did the AVM resection. Everything went just as they said it would. I am so blessed to have found them. They worked so well together and led me through every step of the way. We had to stay 5 more days in the city so that I could get my staples removed before returning home. The next 5 days in New York were spent taking walks in Central Park, eating fantastic food, shopping and just appreciating being alive. I feel compelled to share my story for people just discovering that they have an AVM. I know how scary it is and this site really helped me more than any other place on the internet. There is life after discovering an AVM. My advice is to do your homework and get multiple opinions. I am still taking Keppra and have some short-term memory problems, but I think it has a lot to do with the seizure and the medication. It seems that success stories can be difficult to find, but there are plenty of them!!! I have a special place in my heart for people going through this process. Sending prayers to all for peaceful journeys.
Hi Valerie:
Welcome to our AVM-ers support group. Your story was very enlightening and I’m glad you chose to share it. You are blessed to have received such good results thus far in your AVM journey. Your positive attitude will surely make the healing process easier. My AVM in my Cerebellum, ruptured in late 2014; had gamma knife 4/15 and in May 2017, test appear to indicate that my AVM is gone. I need one more Angiogram to declare it gone for good! Your positive story will surely lift the spirits of our other AVM-ers. May blessings continue to come your way.
Sharon D…
Hi Valerie, it is great you’re here. Your success is really good to hear, and certainly helps keep me positive. I had a bleed just over 14 months ago and gamma knife 8 months ago, I am in the waiting stage. I would have opted for craniotomy had the risks not have been so high compared to gamma. The waiting is certainly challenging. Sure sounds like you did the right things and made the right choice! Great photo! My wife is a twin, it is amazing how close they have remained through their lives and imagine you will experience the same! Thanks for being here. John