I feel very confused?

On Tuesday my neurologist looked through my old MRIs after I had another seizure last week.... he said that I have at least 4 AVMs. Im doing a 24 hour EEG, a new MRI, and some blood work to see how much of my Keppra Im actually absorbing. I go see him to talk about everything again in 3 weeks. Everything Im finding online I scaring me (except avmsurvivors.org). Any advice for someone who is 26, already has a rare congenital heart condition, and is really feeling strange about the AVM diagnosis? I just feel so strange being scared when Ive lived 26 years with them, had a baby, living a normal active life, etc.

It is very normal to feel this way. I am 24 years old and in January of 2012 my whole life changed in a matter of a day. I have never been sick, never knew I had an AVM, or in fact I've never even been to a hospital before. But one day, I woke up and my hand was twitching very badly. It felt wrong so I went to the Emergency Room and they did an MRI and they said I had an AVM and was probably born with it. I had no idea what an AVM was or no clue that I even had an AVM before that day. It just decided to start bleeding that day. I had brain surgery later on in the week. So I know how it feels to one day live a "normal" live and the next day have it all change. How I looked at it was I was very thankful they knew I had an AVM because a lot of times my neurologist said they go undetected.
Wishing you luck!

Hillary: the good news is you are young and in most cases AVM's can be removed or treated. At this point you are probably filled with anxiety in finding out about your 4 AVM's. I know I was in shock when they discovered mine in my brainstem when I was 43 years old. Life changed a bit, especially the things I believe are important, but never stop believing you will improve. In my case, I was able to have surgery and at 8 months post-op I am still making improvements. Educate yourself as you are doing on this website, I know I got more information from people who had an AVM and then surgery than I learned from any doctor when it came down to what I should expect and what to do next.
Good luck to you, Frank


Your feelings of dread and fear of what could possibly happen (considering your extensive circumstances) are very normal but in reality, and with the progress made in today's medical treatments your actual risks are truly minimal.

My own journey began 40 years ago at age seventeen (back in the Dark Ages) and is chronicled online at:

Fear Not, My Son I maintain inspirational materials called the Wordsmith series, located in the group Gratitude Attitude, I have crafted specifically for my fellow AVMer's. I am also a community moderator and am poised to assist you in any possible way I can. I have dedicated my crisis intervention skills and extensive experience to helping my fellow survivors cope, so don't hesitate to contact me. Best of luck in everything!

Your friend,

Rob Forsythe

Ah Hilary, I feel for you my friend. I didn't have a rare congenital heart condition, but 2 yrs before I was diagnosed with my brain AVM, I had what is called a Tripple A = AAA. I don't remember the full name but part of it was an anuerism in my aorta and had surgery to repair it. I also had 2 heart stents inserted after the surgery. When I found out that I had a huge AVM on the left side frontal lobe, I was in shock!! My Cartiologist is a wonderful man and he & my surgeon explained that the AAA had nothing to do with my AVM. I truly understand your fears Hilary and the saving grace for me was having complete trust in my doctors. Contact you doctors and make a list of all the questions you want to ask them, it really will give you some peace of mind! Take care & please keep me posted as to how things go for you!