Hello All,
My husband was having seizures (several over the period of a year) so I told him the next time he had a seizure I was going to call 911. Well, in March he had another one and I called 911 but he refused to let them take him during his postictal seizure state, so the next day when he was more aware I dragged him to the ER kicking and screaming and after being in that hospital for 2 days, we were transferred to a Neurology Hospital where, after a week of tests, they told us he has a Type 5 AVM on his left frontal lobe. He was given Keppra and told the best course of action would be to leave the AVM as it is big and in a sensitive area. It has calcified itself mostly so no embolization was necessary and they told him to continue to take the Keppra to manage the seizures. They said he shouldnāt feel like he needs to live his life in a bubble.
My husband is very much in the āangerā stage of grief after finding all of this out. He was having several neurological/ cognitive symptoms before and was able to just brush them off (aside from the seizures) but now every time he forgets a word or canāt finish a thought or has a headache, he canāt just brush it off. He is in constant fear that his AVM will burst (even though heās had it now for his whole 38 years of life) and heās afraid that he will die in front of our children. The Keppra side effects make him tired all the time, and quick to anger on top of his already irritable (and stubborn) personality! lol He has lost friends and pushed family away. He is afraid if people know how badly this effects him they will treat him differently, like heās slow, or ānot normalā (and they have!). Even when we go to Drs appointments, he jokes with them that he feels like a little kid and that Iām there to be his ānote takerā but itās not a joke, because he really canāt remember.
He has said (in a joking but serious way) that heād rather have seizures than deal with these Keppra side effects. I keep reassuring him that heās only been on the meds a short while and he needs to give his body time to adjust. I also told him that while HE might want to just continue having seizures, HEāS not āaroundā when they happen so he doesnāt know how scary they are (theyāve always been at night and Tonic-Clonic type violent seizures). He also said (unlike me) he doesnāt really want to think about it or do any research because it will drive him crazy and send him spiraling. Iām very much the opposite and feel like since Iām his advocate I need to find out all I can so I can understand, ask the right questions to doctors, get second opinions, etc. since he cannot remember a lot of things and he doesnāt really want to know. I donāt know exactly how to help him through this but Iāve joined a virtual support group for my area and joined this site as well, partly for me and partly for him since he wonāt do it for himself. I feel like I canāt talk to him about it because it upsets him, but I need to talk to someone. I know his reaction and his sour mood is all fear-based, because who wouldnāt be scared about an egg-sized mass in the part of your brain that controls all the important stuff right?!
So anyway, here we are! If youāve made it all the way to the end of this, thank you for listening! Iām very sad that so many of you are going through this and similar (and worse!) situations and dealing with all these fears and emotions! You are all very strong people and you should be proud! 
Hey!
Thatās a lot going on! Welcome to AVM survivors: itās great that you found the club that nobody wants to join!
It makes absolute sense to me that you want to do that research, reach out for a bit of camaraderie and manage it that way while heās perhaps similarly un-ok with this unwelcome turn along the path of life but in a completely different way.
Youāve described the situation perfectly: it makes real sense and we have other carers or partners or @ParentsAndCarers who have joined here to try to help their loved one. You are not alone.
If I might share a bit of my story, I discovered my AVM aged about 50 because I could hear mine: it was pumping rough blood flows into my right transverse sinus and past my ears. I think I went through all of the same worry about a rupture that any of us do, while waiting for a referral initially to ENT then to neurosurgery and finally to the theatre, a year after I had first gone to my local doctor about it. Itās a very worrisome thing.
The calcification sounds like it might be a good thing overall: I canāt say I understand perfectly why calcification occurs but I think it might be to do with slow flow blood rather than fast flow blood and I think thatās the better option. If the docs are saying ānothing to do hereā because of the calcification, then thatās not a bad position to be in.
Being in Tucson puts you not very far away from Barrow Neurological Institute at Phoenix, so if you take up a second opinion from there, youāre really well served by having what I tend to think of as a world-class practice nearby 
I hope some of our Keppra and Frontal patients find your post because neither are particularly easy: oh, I am such an Englishman! No, they are particularly hard, I think, so if it is proving difficult understand that actually youāre doing brilliantly because I think youāre doing some of the most difficult things.
Welcome aboard! It is great to have you join us!
Very best wishes,
Richard
My daughter was super tired on Keppra and another user on here recommended the extended release (24 hour) and taking it at night. Its only been two days but she went from being a zombie back to my normal kiddo. You might see if thats an option. Its the generic of Keppra, Levetiracetam.
Yes, thats the first thing the Neurologist said to try so hes been switched to the same, extended release at bedtime. Its been about a week and it has been helping with the fatigue!
Hi, Sorry sorry to hear your story about your husbandās AVM , I wish you and him the best and our prayers for a successful solution to it , my spouse has a cervical AVM for a very long time and at one time they did discuss gamma knife but it was to risky and currently any more procedures are too risky. And although hers is completely different then his, its still an AVM and thatās the one thing that ties us all together in this group. Best wishes to you and him!
Ken
Hi there. I am not in the same position as you having never had a seizure. Neither is my AVM in the frontal lobe. Just wanted to say congratulations on your approach really. We all deal with things in different ways. For some it feels best to pretend things arenāt happening - the smaller your knowledge the better huh? Personally Iām more like you though and prefer to know everything, good or bad. I find this helps me keep things in perspective and rationalise them, at least in my mind. I ādiscoveredā my AVM long ago (mid-20s) and its mind-blowing, so I can understand your husband being angry. Like him I was given the āgo away and live your lifeā mantra. Its tough at times but if you can accept the situation (in time) it gets easier to live with. Support groups like this one are wonderful so maybe if you can persuade your husband to use one it might really benefit him. Best of luck.