Well we were in the er again today. I think my son had another “focal seizure” or whatever you want to call it. This time he wasn’t exerting himself. We were car shopping. On top of everything happening my husbands old, old car died and we decided to doate it to Make a Wish. Anyways he started to look not well. His face was red and he said he didn’t feel good, but couldn’t discribe what was bothering him. I called the Drs office we’ve been working with at Children’s in Mpls and they said I could take him to the er or maybe take him home to rest. We decided to take him to the er. On the way I was asking him simple questions like what his Grandma’s name is(my mom) and what his math teachers name was and he couldn’t remember. They did a CT to make sure he hadn’t had a bleed and it came back ok. He seemed confused and didn’t feel well for about an 2 hours and then he seemed to come out of it. We have an appoinment with the nuerosurgen, who does crainiotomies, on Monday. It was scary today and I thank God that it wasn’t a bleed, but it makes us think we should do something soonner rather then later and definatley we are seriously considering the crainiotomy. Also, the nuerologist from Mayo suggested that route for us as well, he is such a great doctor. I’m sure I’ll have more to write soon.
Mary (Jaime’s Mom) said:
I’ve just been catching up on the conversation. This is a good thread. First let me say I’m so sorry to read about your son. Reading about your struggle to make the right decision brings back such strong memories. I’m not sure of what to say about the exercised induced symptoms. What I can say is that my daughter always had headaches but once she hit puberty, at specific times of the month, the symptoms were way more accute. By this I mean we could literally see the blood pulsing through her face/nose area. This isn’t the same thing as exercise but I do believe the blood pressure highlighted the problem. The “episode” you describe sounds exactly like an incident which my Jaime experienced. For Jaime this happened at school after her surgery while weaning her off the anti seizure medication. All involved called it a seizure.
As for treatment options, we were told that the smaller AVMs are more risky for bleeding. We were told to think of it like a tree in a storm. If the more mature tree breaks it’s a big problem but, in general, they hold up better than the little saplings. Both can snap but the bigger stronger tree/vein is stronger and less likely to break. It’s a personal decision but we were glad we went with the surgery, none of us could bear the thought of living with this situation for 3 years hoping it didn’t bleed. Then there was the risk of radiation side effects for the rest of her life. It was too much for us. Brain surgery is scary…when you first hear the word you go into shock. How can this scary word be a part of our lives? It’s different for everyone but we were glad we went this route when we found that in addition to the AVM, Jaime had 3 aneurysms lurking in right next to the AVM. I’m assuming if you’ve had the angiogram that this isn’t the case for you. Not sure. As for recovery time, you’d be amazed ! We were at a Paul McCartney concert with my daughter 1 week to the day after crainiotomy. She was running 2 weeks after surgery (not a lot but…it was a start). Her surgery was mid July and she ran cross country that September. It’s amazing how quickly kids heal.
I’ll be praying for you, your son, your husband and family while you weigh your options. Whatever you decide please know that you have our support and that there is a light at the end of this dark tunnel called AVM.