What are the chances that I have an AVM in my brain and they'll just leave it be? No procedures, no surgeries. . . .Or is that NOT how it works?? Once it is "discovered" something will be done about it?? Does size and location factor in to treating or not treating OR just factor in to the HOW it is treated?? Any advice will be helpful! Thanks.......

The answer depends on a lot of things, Misti. Was your AVM discovered incidentally, while you were being checked for something else, or were you symptomatic (headaches, weakness, seizures)? You age matters, too -- the older you are when an unruptured AVM is discovered, the less likely you are to have a rupture. The size and location of the AVM matters, too. Is it easily accessed by craniotomy? small enough to be taken care of with embolization? Just remember than no one can treat your AVM without your permission except under extreme circumstances. Sometimes not treating can be a valid choice, but you need the fullest possible information before making that decision. Doctors will be inclined to treat, but getting several opinions is helpful before deciding on a plan. Best wishes!

Misti, you may wish to join the Unruptured AVM group (

It was discovered during an MRI. We were thinking MS or lupus. Left leg has been numb for months and headaches (for 2 months straight that were so BAD and neck and arms "burning)I am 32 so maybe that’s a good thing. Just confused right now and have been so sick this past summer! Lost 16 lbs and dizzy like crazy

In that case, you are experiencing four symptoms from the AVM -- numbness, headaches, pains, and dizziness. If you are otherwise healthy and your AVM is operable, I believe that most neuros will recommend treating it. An often-repeated, though very rough, formula for the cumulative risk of avm rupture is 105 - your age, or 73% in your case.

Before your next appointment, it will be helpful for you to learn as much as you can about craniotomy, radiation surgery, and embolization. Ask as specifically as possible about the characteristics of your AVM: its size, location, and complexity. Ask why certain treatments are recommended for you and why others are not. Read others' stories, but try not to assume that your experience will be the same.

Thanks to you both! I am reading and researching all I can so as to ask “smart questions!!” smile! I have been so very sick and then BAM almost everything except the left leg numbness went away soooo that’s why we were thinking MS … I am loving this site!!

And dancemom… I didn’t really understand your formula… Smile! My poor brain lol

The formula is very rough. It assumes a 3% rupture each year. Somehow that works out to:

105 - 32 (your age) = a 73% chance of a rupture sometime during your life.

See if your doctors have a better way of estimating your risk.

Thank you so much!! I am sure it’s normal to be a confused mess … At least,I hope so lol

Misti..What I did was find the best neurosurgen in my area and get a second opinion. They may give you the same advise. I am a total believer of a second opinion!

Hi Misti,

DancerMom has good info. Hear what your first specialists have to say, then have your files sent somewhere else for a 2nd opinion. Make sure anyone treating you has worked on hundreds if not thousands of AVMs just like yours.

As my wife's DR told her, "you're too young NOT to fix this." Think the same applies to you.

Best wishes,
Ron, KS

Hi Misti B. I saw 3 neurosurgeons and received 3 very different opinions. There are no right or wrong answers. However you decide to proceed…we will be here to support you!

Thanks so much! We knew something was wrong!! I was in a heck of a bunch of pain!! One doc told me I needed Prozac… So I started that! The pain has chilled out or I’ve learned to deal but the headaches are much better. They were killer for a cpl months! So we were looking at MS and did a MRI so glad I have a doc that believed me finally!! That’s been the hardest part!! People thinking you’re crazy bc blood work and all come back ok. I’m really surprised they didn’t start with my head, looking back now, but we didn’t. We looked for Lyme West Nile MS and wld have looked at Lupus and vitamin def next … Crazy! Thank you guys for the information!! I appreciate it. I have 4 kiddos so it’s hard to not worry but you have all helped me to relax!! Smile