Our son is now 11 years olds. His AVM was discover after a hemorrhage in August 2017. We had no warning at all, he just got up, said he didn’t felt well and one minute later, he collapsed on the floor with a stoke. When my husband pick it up, he could move his right side and was speechless. That was the worst day of your life.
He regain speech after five days and started to wiggles is fingers at the same time. The feeling was incredible, there was hope !
He has been in hospital for 46 days because he needed to learn to use his arm and walk again which he did like a champion. He’s been so strong and so brave through that. He just amaze me ! He recuperated full usage of speech, right arm and most of his leg. Right now, he’s walking with a brace since a got a falling foot (the ankle is too weak to support his foot properly and the toes are not wiggling yet). He can now dance, jump and run (with limitation in the last case).
At the time of the hemorrhage, the doctors decided not to operate immediately because the suspected that the AVM was in the supplementary motor area (SMA) and the wanted to get more information once the hematoma was gone and more time to analyze the options.
After a second angiogram and a functional MRI, we receive the news yesterday. The AVM is a frontal parietal AVM. They initially thought it was a grade 3 but it had been revised to a grade 2 (1 grade for side = 12 mm, 1 grade for eloquent and luckely, no deep vein). The AVM got one feeder and one drainage.
Two options are recommended at that point. Embolization and surgery.
The vascular specialist thinks she has good chance (> 50%) to obturate completely the AVM by embolization but according to the study available on the Internet it seems to be between 15-35 %. She’s saying that technology is changing so fast and that the small amount of cases don’t give the reality in those study. There’s is a still 15% of chance that something could go wrong and that our son could have some numbness of even an hemorrhage du to perforation of a vein.
The neurosurgeon is saying that he can do the operation but since it’s in the SAM, there’s also 15% of chance that our son will regress and that some fonctions (leg and arm) could be temporarily affected. Our son will recuperate from it but will it all come back ? He the doctor can’t promise that.
Since our son already went through paralysis, hospitalization and rehab, it’s really hard to think that he could have to go through that again if we choose surgery and there’s complications. But, at the same time, with surgery, he would be cure for good without any chance of a second bleeding which could be wort. We don’t feel that embolization can give us the same guarantee.
There’s always the possibility of trying the embolization first and keep surgery if it doesn’t work but it feels like adding procedures, amplifying risks and impacting a second school year (he will have to redo is 5th grade already). Since he already had learning issues before the AVM was found, it’s just getting worst since he missed 6 months of school and just going part time at this point.
I read in one of the answer on this site that hemorrhage was a lot worse then the resection of the AVM for another patient. That is giving us some hope that it could go better.
Other than JasonLisa1837, which I contact directly by email, is there anybody else who had an AVM in the supplementary motor area (SMA) ?
If it’s the case can you tell me more about your options, what you pick and why and how it went ? Like how long did it last, did you had a lot of pain after, any numbness ou side effects, how long were you at the hospital, and how long before he was back to normal and went back to school/work ?
It’s a really hard process as you know, especially for caregivers who have to take decision for somebody else. We are so afraid of doing the wrong choice.
We lived by Ottawa city in Canada.
Nadine