Replies to This Discussion

Permalink Reply by Lisa on January 26, 2012 at 7:05am

My daughter was 19 when her avm was discovered. She was complaining of headaches so her Dr. ordered an Mri. No other symptoms or problems still.Thank God! She has had 4 embolizations with #5 scheduled for March. Her avm is deep in her opcipical lobe and over 5 cm. in size so her nuerosurgeon felt it was to risky to treat any other way! No bleed yet or other complications to this point. We are holding out hope that it stays this way until we can finish her treatments. Erin is still going to college and trying to live her life. I hope this helps as there is hope out there. I have to believe that there is something special planned for her and that is why her avm was found before any complications! God Bless you your son and the rest of your family on this journey!
Lisa

Permalink Reply by Rachel D. on January 26, 2012 at 8:33am

My son was 13 years old when his AVM was discovered. He had a seizure at school and they discovered the 3 cm AVM in his left frontal lobe in an MRI. He had an emobolization procedure done and then a craniotomy 2 days later. After 6 months they did an angiogram and found there was still a small avm 1cm. His surgeon said that he thinks this malformation is shrinking and will eventually dry up. There was not much blood flow through it. He will have another angiogram this summer to verify that it is shrinking. We researched and struggled with the options of craniotomy and Gamma Knife, and after much thought and prayer we decided to do the craniotomy.
He is doing great and doesn't really have any side effects. For awhile he couldn't raise his left eyebrow, due to nerve damage from the surgery, but he has gained back the ability to raise his left eyebrow. He played baseball last swing and football this fall. Thank God he is doing wonderful!
We decided that the risk of a bleed and related complications was much more dangerous than doing nothing! Do you research and make sure you feel comfortable with you decision. You never feel great about putting your child through surgery or gamma knife, but after everything sinks things will become more clear. It took us almost a month of research and talking with different surgeons and doctors to make our decision. Really we were in shock and denial at first, it is a lot to process. "Your son has an AVM" A A V what? We had never heard of that?? Then they said he needed brain surgery or he had a 98% chance of a brain hemorrhage in his lifetime. It just felt so surreal. It all seems like a dream sometimes, but now its part of our reality. Sorry to go on and on....I will pray for you and your son for guidance, peace and clarity!

Permalink Reply by Lillian on January 28, 2012 at 5:27pm

My son's avm was discovered at 14 after a seizure. We seeked two docs opinions and both doctors suggested surgery is the best option for him. He had an embolization one day before his craniotomy.
When in doubt, ask for second opinion.

Lillian

Permalink Reply by SIBC - MaMa on January 29, 2012 at 10:53pm

We found out in Dec 2011 about my son's AVM and it has been the longest few months. He started out with bad headaches and we knew it was not right since he was only 3 and it was about every 10 to 15 min. We were just told because of the size, location, and his age we shouldn't do anything at this time that since this is not found so young. They didn't want to try the Embolization because of the area and radiation may be an option when his head grows. I have notice before we found this and even now he tends to fall a lot but he knows his limits and lets me knows when he has pain. Headaches are not as bad with medicine now but I feel like "I wish I didn't know cause I am stressed all the time". No bleed yet but taking this time to do all I can with my son.