So far I have had 3 AVM’s. One 15 years ago treated with an embollization. Two more were found in November of this past year. One was treated with an embollization, the last one in December with a craniotomy. My neurosurgeon can’t tell me if this means I may have more and wants me not to worry about it. It’s hard not to think about. I don’t understand why I have had so many. I am trying to stay positive and not worry about what I can’t control. Any thoughts?
Hi Sue,
Your doctor monitors you yearly, with MRIs or some other scan of your brain, right? Beyond that, the only other thing I could suggest would be a second opinion. You could have your records from both time periods sent to another neurosurgeon, who might be able to give you more certainty about what’s going on.
As far as what might be going on, here are some other possibilities to think about…
1. Imaging technology has improved over the past 15 years. You may have had exactly 3 AVMs your whole life, but 1990s technology just wasn’t good enough to show all of them yet. The detail they get now is incredible.
2. Your doctor might have misread your scans, the first time around. My husband’s AVM is huge, 4 cm by 6 cm, and for MANY years, doctors at some top-ranked hospitals completely ignored it every time it showed up on scans he was having for his epilepsy. Now that I look at the films, I wonder how this gigantic thing could possibly have been missed. So again, you might have exactly 3 AVMs, and the last 2 were only noticed recently.
By which I mean, there are a lot of possible explanations for this, and not all of them are scary!
JH
I really appreciate your thoughts. Your idea makes a lot of sense. I could see the possibility of having had all 3 avms all along. When I was having symptoms this past August, my regular Dr. ordered a CT and an MRI and I was told they were clear and nothing was wrong with me and not to worry about it. The headaches were horrible and I knew something was wrong and I was suspicious it was another avm. I persisted and went back to my radiologist from 15 years ago. He did an angiogram and discovered the other two.
Now I wonder if having a yearly MRI would do any good. It seems like an angiogram is the only way to really detect these things. I think it might be a good idea to take all my records for a second opinion but, at the same time I would like to forget about all this and not be looking for more trouble. I had an MRI about a month ago and everything was clear and it showed all avms were gone. I am seeing my neurologist today about seizures and I will talk to him about your suggestions. Thanks so much for your input!
JH said:
Hi Sue,
Your doctor monitors you yearly, with MRIs or some other scan of your brain, right? Beyond that, the only other thing I could suggest would be a second opinion. You could have your records from both time periods sent to another neurosurgeon, who might be able to give you more certainty about what’s going on.
As far as what might be going on, here are some other possibilities to think about…
1. Imaging technology has improved over the past 15 years. You may have had exactly 3 AVMs your whole life, but 1990s technology just wasn’t good enough to show all of them yet. The detail they get now is incredible.
2. Your doctor might have misread your scans, the first time around. My husband’s AVM is huge, 4 cm by 6 cm, and for MANY years, doctors at some top-ranked hospitals completely ignored it every time it showed up on scans he was having for his epilepsy. Now that I look at the films, I wonder how this gigantic thing could possibly have been missed. So again, you might have exactly 3 AVMs, and the last 2 were only noticed recently.
By which I mean, there are a lot of possible explanations for this, and not all of them are scary!
JH
My son has 4-5 AVMs. THere is one and they are unsure whether it is one big one or two. They think it is just one that is very diffuse. He has had them since birthe and they were found on an angiogram. He has an MRI every 2 years to monitor.
Thanks, Betsey. I read some of your story and I will pray for your son and family. He sounds like a real joy and true blessing in your life. Take care and continue having faith in God’s plan. You are an inspiration!
Betsy said:
My son has 4-5 AVMs. THere is one and they are unsure whether it is one big one or two. They think it is just one that is very diffuse. He has had them since birthe and they were found on an angiogram. He has an MRI every 2 years to monitor.