Josh's AVM is in the left frontal lobe. He's had one grand mal seizure, which is how we found out about his AVM.
He's always had headaches and sleep issues. His dr years ago wanted him to do a sleep study because they thought he had sleep apnea. He snores, and then will all of a sudden stop breathing. When he finally starts breathing again, he will sometimes moan, or laugh, or mumble something. And then he twitches. It's not a lot of time, just for a few seconds - but he does this the entire night.
When I asked him about it - he said it couldn't be seizures because it wasn't anything like the grand mal one, where he was so tired and achy he slept for two whole days afterwards.
But I've been doing some research online and found that AVMs in the frontal lobe can cause seizures with his exact symptoms - even the laughing part!
Has anyone experienced these, or have a loved one who did? Do we tell the dr? he's already being examined for treatment and we are just waiting to hear back on the lastest MRI results to talk treatment options and scheduling.
Do I need to bring this up with his dr? Or is it just assumed he's having these since it's the nature of a frontal lobe AVM? No one's ever asked us if he's had another seizure. If I bring it up will he lose his license? He needs his license to work... and he needs work to have insurance to cover the treatment...
I'm not sure what the best thing to do is - should i be recording his night episodes? Should i share with his dr what is going on? Should I try to wake him up while he's having the episode?
Hi J. Spriggs, Is Josh on anticonvulsants?
Definitely discuss this with his dr. to rule out the possibility of it being seizure activity. Better to be safe! :)
The following discussions re: Anticonvulsants came up under Discussions search @ http://www.avmsurvivors.org/forum/topic/search?q=anticonvulsants. Seizures are a common symptom of vascular malformations & I think many of 'us' are, or have been on anticonvulsants at least @ some point of our journey's.
Journaling Josh's episodes is also a good idea which you can present to his dr.
Hope this helps. :)
Definitely discuss with the Dr. It could be seizures, apnea, or both. When I was tested for seizures they did an EEG test. Basically a bunch of sensors were put on my head and then they had me go to sleep while lights flashed (or something like that). It was painless and I think it's pretty standard for determining seizure activity.
I emailed and talked with the Dr yesterday. he said not to worry because he's going to taking care of the AVM soon. the latest MRIx came back with the results he wanted so we are moving into the treatment phase. Going to do a series of embollizations and then surgery to removed the AVM. We're waiting to hear from his secretary to schedule everything. All is good.
Great to hear the treatment plan. Sounds like the surgeon beleives he can remove the AVM successfully. Very good news. I'm sure the doctor will tell you this, but keep in mind that seizures are quite common following a brain surgery and many people need to be on anti-seizure meds afterwards. Please let us know when his surgery is set.
hi,i hope you understand my english..my husband had the same symptoms before his embo(had 2)...the dr sended him to that sleep apnea study....well,he has sleep apnea...they gave him the machine and he is doing great...having sleep apnia has everithing to do with AVM'S:)(circulation)that's what our neuro told us...:0)