Hi folks- Im so glad I stumbled across this sight.

This is all so new and I have so much to learn. My diognosis was two days ago. We thought I was having a stroke when I couldant speak the words my brain was trying to say. I was hoping it was just a flashback! It was a very out of body expierance.

My wife Jenny rushed me to the hospital, they sure get excited if they think you are having a stroke.

After a CT-MRI-MRA and a MVI the consencess was that I have a rather large AVM on the left side of my brain that had caused a siezure which in turn was causing the speech problems.

The Neurosurgen explained that it was not something he could operate on, and recomended I get a couple opinions about the possibility of using " coils " to repair things.

I consider myself very lucky that the symptoms were what they were and the AVM was discovered before it bled. Im trying to keep the glass half full.

Looks like there will be a lot too learn- Jen and I are both scared, but we do beleave that knowledges is power.

Right now the doc has me taking Keppra 250MG every 12 hours with hopes of avoiding another siezure.

Im really not too sure what to expect next, Ill keep you updated on my journy.

Thanks for being here,



Don't be afraid, we all, were afraid/scared at one time. But with information came knowledge, and with knowledge came understanding.

There are many good people here, many of which I call my friends, and you found the right place for support, information and friendships.


Thanks William-

I know your right. And I know I'm in a better posisition than many.

Im very impatiant. I'm really not sure at all whats next. The doctors frankly scared the crap out of me. Theres still so much mistery, so many questions I wished I had asked in the hospital. I was so excited the Doc. said he wasn't going to operate, I kind of ignored the part that he COULDNT opperate. Its just sinking in that Im not out of the woods yet.

Im trying my best not to slip into the " poor me " mind set. I just hope this search for information goes quickly.

Im finding comfort in the fact that the docs wern't considering this an emergency since it hadn't bled yet. But when they

talk about "how large it is" and how "surprized" they are it hasn't bled, is a bit unsetteling.

But your right pal- with information comes knowledge and with knowledge comes understanding. For now Im gonna keep fighting the battle, some day Ill be livin the dream! Thanks again dude- your support is greatly appreiciated.




William said:


Don't be afraid, we all, were afraid/scared at one time. But with information came knowledge, and with knowledge came understanding.

There are many good people here, many of which I call my friends, and you found the right place for support, information and friendships.


Hi Sandy,

It's a good thing that your doctor wants you to get a few opinions; each neurosurgeon has a different area of expertise, and one can treat what another one can't. If you look around in the old discussion threads on this site, you'll get an idea of all the different types of treatments--different ways to use radiation, different ways to embolize (block off the AVM with coils, with a hardening fluid, etc.), and so on. It's a good idea to know as many of the options as you can before your next appointment, so you can ask questions about what's recommended.

You might also be able to find a recommendation here for local surgeons with AVM experience. We've found that a lot of doctors don't even know what an AVM is, so you really want someone who's used to treating these.

Since you're just starting a seizure drug, think about starting a notebook where you keep track of any side effects you notice, especially in the first few weeks. There are so many different options, so if Keppra changes your mood or makes you overtired, it's likely there's another one you can try.

It's scary, and some of the info you find will probably make you even more scared, because it's hard to know what applies to you and what doesn't. But you made it this far, and it sounds like you and your wife caught this at the very first symptom, so you're taking good care of yourself, which is the most important thing.

Welcome to the site, and keep us updated!


Welcome to the group ,so great to have you here and I think you just discribed your seizure exactly as I had mine one year ago, mine is as well on the left side of the brain and was like an out of body experience,was thinking I was having a stroke too,I already knew about my avm at the time found out two year before but didnt have any problems with it besides headaches till this first seizure,and only one so far,thank god, on topamax now,anyway,welcome!!! had gammar radiation three years ago for my avm ,am still waiting on it to go away,:slight_smile:

Sandy, I’m new on here, also, and am glad you found this site so soon. I was diagnosed a couple of months ago, and from what I’ve been reading, I’ve got it good. I was having balance problems so my ENT found my avm. He called and told me over the phone & said he was sending me to a neurologist, but was very non-chalant about it, so I was shocked when I looked it up on the internet. However, it did prepare me for when I did see the neurologist, because I understood what he was saying a lot better. I still didn’t appreciate the seriousness of it, though. Mine is also on the left side, but the neurologist thinks it’s operable. I went for a 2nd opinion last Wed. which was a waste of time, because the dr didn’t have the discs with my MRI and arteriogram on it. Maybe I’ll hear something this week. Please be more patient than I’ve been. Do continue your research, because it will help you understand better, too. When the drs are talking, well, it’s just a lot to absorb at once. My prayers are going up for you!

Glad you’ve found this site. I was diagnosed a couple of weeks ago so I know how overwhelming this all is. My prayers are with you :slight_smile: Stay strong. The people on here have been so helpful

This site is wonderful to understand the many ways AVMs can be detected and the many plans of treatment. A good one friend once reminded me that this is a marathon, it's not a sprint. As much as I want answers and cures today, they're not coming. But take this a day at a time, and tackle today's battles today. Tomorrow's will come soon enough.

Two years ago today, I had no clue what an AVM was. Then my 6-year-old had a headache and collapsed when her undiagnosed AVM massively ruptured. Gradually, we have learned more and more. Still scary not knowing if the AVM will regrow. But we do the best we can to be thankful for today and give my daughter as much support as she needs.

Best wishes. Keep us updated.

Welcome Sandy and MSG - glad you both found us.