Comment

Comment by Lynne LaMacchia on February 15, 2012 at 6:48am

MelJay,

You are very lucky that you haven't had a bleed. If you have to have surgery it is best done when the brain is stable. My husband's avm didn't bleed until he was 44. His avm was discovered when he was 30 after a break through seizure. We had gone to Johns Hopkins for embolization the year before the bleed. They decided not to perform the embolization during the procedure has they discovered that the veins branched off too much supplying blood to some very important parts of the brain. We decided to wait after that to make a decision and then the darn thing bled. Since the bleed was small we were able to wait to have surgery for a couple of months to let the brain cool down and recover a bit. Those 3 months after the bleed were awful. We kept waiting for another bleed. In the end, we opted for surgery rather then gamma because the waiting and not knowing was killing us. For us, we decided to have the surgery and know then what we were up against.

We had the surgery January of 2010 with Dr. Lawton at UCSF. It has been 2 years now and sometimes I feel like it was all a dream. He was resonably young and in good shape. I think that this helped him from a recovery stand point. I am hoping that embolization works for you. If not, take comfort in the fact that you are young and healthy. It is amazing what the brain and body can do! We found out last year that the AVM was completely removed. They had told us the day after the surgery but I didn't believe it until he had another MRI a year ago. Looking back, making the decision to have any procedure that involves the brain is scary, but hearing that you no longer have this thing is worth it! Good luck!

Moderator Comment by Suzy E on February 12, 2012 at 10:48am

Welcome MelJay... whether you believe it or not 60-70% are good odds! Stay positive and strong, it'll serve you well and no matter what the outcome, know we we always be he for you in any way that helps. Hope you're feeling well and good luck! :)

Moderator Comment by Ninibeth Ramirez on February 10, 2012 at 8:57pm

it is so normal to be nervous. I was 19 when I had my craniotomy.. Even though I was a little nervous I beleved that everything was going to be fine... Think the positive part is that you have the opportunity to have a treatment, so you can be avm free!!! There are a lot of success story's here.. Just think about the positive things that you have.. Wishing for the best.. Try to be calm.. Hope you have a perfect surgery and fast recovery :-)

Moderator Comment by Louisa on February 10, 2012 at 12:41pm

Meljay..It seems that you have the best neurosurg in your area. Knowing that..try to think positive and stay strong! My thoughts and prayers will be for you on the 23rd! Please keep us informed on your journey to be AVM Free!

Comment by Lisa on February 10, 2012 at 6:52am

MelJay,
You are only about 6 months older than my daughter,Erin. I will tell you what I have told her. From a mother's perspective. #1- Thank God you did not believe those that told you, you were a hypochondriac! Listening to your body is something we all should do. Persistance pays off! #2- There is a reason you have not had a bleed or any other major issues related to this monstor in your head, only headaches! YOU WILL DO GREAT! God must have something special planned for you! You are young and otherwise have your health on your side. Trust in God, your family, your Dr. and in the power of prayer, because your AVM family will be sending you tons of prayers. You are meant for something special and this obstical will make you stronger for when it is your time to shine!! Cant wait to see what God has in store for you!!
All my love and prayers
Lisa (Erins Mom)

Moderator Comment by Barbara H. on February 9, 2012 at 7:42pm

Well if it makes you feel any better...I had my brain surgery before you were born and I am still here. YIKES! Just think of all the wonderful medical advancements that have taken place in the last 25 years and you can take advantage of them. My husband always jokes and says they used flint tools to do surgery way back when I had my craniotomy done...LOL. All joking aside...I remember being terrified too!

Comment by MelJay on February 9, 2012 at 7:09pm

thanks so much, Barbara! i appreciate that so much! it does feel good to know that i have a great doctor! but still unsettling to know theyre going into my brain...

Moderator Comment by Barbara H. on February 9, 2012 at 6:47pm

Hi MelJay. It is unfortunate but there is no simple way to get rid of an AVM and no one can tell you what to do. I will tell you it is normal to be scared and that you have one of the few doctors who actually understands AVMs. I did a search for you...http://www.avmsurvivors.org/main/search/search?q=Dr.+Berenstein
You are on my prayer list.