About two weeks ago we learned that our son has an AVM. We heard the news from our family doctor over the phone. He told us the radiologist that read the CT didn’t think surgery was necessary and it wasn’t anything of great concern. After I got home that evening I looked it up. My first thought was where did that radiologist get his degree and please don’t let him read any of my future scans.
The next day I called our doctor and we agreed to an appointment with a neurologist which he arranged in four weeks. In the mean time, my mother was busy in the back ground speaking to her neurologist that operated on her back. He recruited a doctor from Florida to his group that specializes in AVMs. She arranged for us to see this doctor in two weeks.
Trying not to obsess and live one day at a time I limited my research of AVMs. I couldn’t drive myself crazy - we have two kids and have to maintain a normal life while we wait to see the doctor. Besides there isn’t anything I can do while we wait.
The day of the appointment came; my son and I left the house at 5:30 am and drove 3 hours to Richmond, VA. It was an interesting drive. We played and had fun all the way. Till he asked me “what if I have to have surgery?” We talked about the limited research that I had done; I gave him the information I had at the time about the different treatment options. Told him that we don’t need to think about it now because we haven’t even seen the doctor yet. Let’s wait and take it all in once we see the doctor.
Our options are do nothing and wait for a bleed (not really an option), radiation, or elbilzation followed by surgery. The doctor didn’t lean towards either; said he was a good candidate for either.
For several reasons we (mom and dad) like the surgery option. It will be gone, removed, done. Radiation leaves too many questions unanswered. We cannot have unanswered questions for him - not at 17, a junior in high school uncertain about college. We need answers.
The fear of the unknown has been plaguing me since we left the doctors office.
Like I said, we left home this past Wednesday at 5:30 am and we returned home at 5:30 pm. LONG a*s day.
Now that we had spoken to a doctor I got back on the computer and researched AVMs. That is when I found this site. Reading all of your success stories has given me great hope for our future. It has given me the strength I need to make a decision without looking back. We will come through this - all or some of us may be bald, but we will come through this stronger than before.
I want to say thank you for your support and postings. Even if you haven’t reached out to me. Just reading your stories has helped me know we are not alone and we will make the correct decision.