Thank you, Everyone

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.

Michelle- So glad you found our little corner of the internet. And good for you for finding out more and not listening to that original doc. That was crazy and sounds irresponsible from a medical standpoint. It sounds like you have done all of the right things for your son and I wish you all the best. At 17, he probably can’t completely appreciate this journey you are sharing with him as a parent. But I’m sure he feels lucky to have you as his advocate.
I hope all goes well with his surgery.

Michelle! There are so many of us parents that are members on this site who know exactly how you feel! It is tough being a parent of a child with an AVM. You might want to join the Parents group on this site as well.

My daughter Lindsey, who is 10, had a bleed last July, which is when they discovered her AVM. It set off the whirlwind of medical activity that you are experiencing right now. At first our surgeon was leaning toward radiation, but I (like you) wasn’t feeling too comfortable with that, and when the outside consults came back recommending surgery, I was actually relieved, though also scared to death. I just wanted it out, and not risk another bleed. Long story short, she had 1 embolization, followed by surgery, in January this year. She did great with the surgery, and has bounced back very quickly! It is such a relief.

Have they done an angiogram on your son yet? They really can’t recommend treatment, without one. I would think that would be the next step. The angio is what really shows the vascular make-up of the AVM. You can’t get that from a CT scan. I would also recommend getting other opinions, even if you really like your doctor. Our surgeon highly recommended getting more opinions, and actually sent out for them himself, for us. We ultimately decided to have him do the surgery, and he did a great job, but we were more confident in our decision after consulting other doctors.

Anyway, I just want to let you know that you are not alone. If I can help in any way, let me know. Your family is in my prayers.

i was 16 and a junior in high school when my avm was discovered and i personally wanted surgery for the samw reasons, my avm was on the high end of the scale that gamma works for and i was worried it wouldnt work however after my angio i learned that surgery could not happen, surgeon said i would stroke before he even reached the avm, but anyway, if surgery is an option i would say go for it. just remember if it is during the school year it will be tough to keep up. i missed about a week for gamma and that is much less invasive. but summer is soon, then your son can take all the time he needs to recover

I with you luck!!

You are not alone, my 12yr old son was diagnosed in Jan and we also were told we could do nothing but that is not an option, we were offered radiation and we are waiting to here our results of wether treatment will be a successful option, thanks to the wonderful supportive people on this site a doctors name kept coming up Prof Michael Morgan in Sydney and so we are going to see him in 2.5weeks. I am only new to this site also and all the support and well wishes as brought a little bit of hope each day. Take care my heart goes out you and your son. Tracey