Tiny AVM?

Hi I am new to this. I was told I have a “tiny AVM” in my brain. I am having an angiogram tomorrow to find out more. I have been having migraines for years and seizures for the past few months (that’s why I had the MRI). Does the fact that it’s “tiny” mean it’s not dangerous? The doctors are being so vague with me. I know you are not doctors. I would just like to have an idea of what it means.

Hi Samantha,

Neurologists are vague by nature, it’s very hard to get a simple answer because the brain is the most complicated organ and everyone is truly wired differently. The good news is that the cerebral angiogram will provide a much better and detailed picture of the arteries/veins in your brain so hopefully you’ll get more definitive information. I find it’s good to write out your questions ahead of time on a notepad,bring it w/ you to take notes and to make sure your questions are all answered. If at all possible, bring someone with you that is good with complicated stuff since the patient finds it hard to ‘take it in’ and the person with you can make sure you get the info right. As to tiny, both the size and location are very important. in general, surely ‘tiny’ is a good sign, some can be large and complicated, which likely makes them more difficult to treat. The size of the AVM may not have little to do with how ‘dangerous’ it is. I’m no doctor, but I suspect you’ll get much better information when the angiogram is done.

Here’s the mayo clinic info on AVMs (I like they’re info since it’s written for ‘real people’). If you notice their pictue of an AVM it’s a large one, mine looked pretty tiny by comparison Best of luck to you, it may be vey scary right now, but it is great to have caught it now. Probably doesn’t feel like it, but my first real symptom was a stroke, which is a bad way to find out you’ve got an AVM, but also fairly common. take care & keep strong.

Welcome to the group. I’ll take a shot at answering. Remember that all responses here, unless someone assures us he/she is a DR, are from lay people. But most of us here have more experience than we like by either having an AVM or a family member with one.

While it might be easier to remove a tiny AVM, I don’t think the size has much to do with the risk of a bleed. It matters a lot where the AVM is located and what it’s close to. If it’s small, but deep in the brain, making it harder to get to, that’s not good. If it’s small on on the surface, it would be easier to remove.

Your Drs should be able to tell you more after the angiogram. They should be able to offer you some options for treatment and risks of each. Obviously if you are having migraines and seizures, you probably want it fixed.

Depending on where you are, there might or might not be DRs experienced in AVMs in your area. Most people want to have someone treat them that has fixed at least hundreds, if not thousands of AVMs. It’s not something that you want fixed by someone who read about it in med school.

Best Wishes,
Ron, KS

Thanks everyone for your input. I go back to the neuro today to find out what they saw on the angio. I don’t know whether to hope that the avm is what is causing my seizures so that is “fixable” or to hope that it is “just” epilepsy. I am so anxious today I am pretty worthless at work (as I sit here posting on a website). This is a really nice website to find since it is such an uncommon issue. No one seems to even know what it is. Thanks again.

I hope you get some useful info at the follow-up. Stress can’t be controlled, but focus on anything good you can find. It helps to keep you sane. I’m hoping you get the best news possible, whatever that may be. Stay strong!

Hi Samantha
Have you had ay more info from drou have had angio?
Has he suggested ay treatments yet?
Take Care

Good evening Samantha,

My AVM was not in my brain, but I totally know about the anxiety of not knowing what will happen.

Over ten years ago, I had a small pituitary tumor show up on an MRI. I was scared to death. There were a bunch of hormonal tests done, and when the results of those were normal, the subject was just dropped. But as years passed by, and each time it was checked and there were no changes, I felt better.

More recently, I went to a orthopedic surgeon because I had some problems with my right hand that I thought may be related to the removal of my AVM. Although he concluded that it was probably work related, I asked him if I it would get worse, and he told me that if he knew what the future held, he would be buying lottery tickets. Considering I asked that because I was wondering if I should consider early retirement, I found that totally unhelpful. But as I thought about everything, I decided to twist his answer around and turn it into hope. Maybe I won’t get worse. And I did take his suggestion of lowering the keyboard shelf on mydesk, and my hand is functioning better. And somewhat related, maybe there will be better treatments for AVMs someday.

Hope you were able to get answers to your questions.

Take care,

Debbie

Hi,
I have a “tiny” AVM too, and it caused me quite a large bleed on Nov 15, 2009, and a stroke, so yes they can be dangerous. and i finally found a doc who will tell me all the nitty gritty details, an interventional radiologist in Boston at Mass General Hospital. So keep pushing to learn the details, and if they dont tell you, find another doc who will. Tiny for me means less than 1 cm, and mine is in my cerebellum, between 1 & 1/2 inches deep into the cerebellum, which by the way they also say is “near” the surface and relatively easy location for surgery. Im seeing my 3rd opinion Neurosurgeon at Mass General tomorrow and then i will decide what to do about the damn thing. Please friend me and we can chat more too.

Hi, I’m new to this as well. There is a grading system for AVM’s. Mine is a 1-2, which means between 1 and 2 centimeters. I’m having surgery on Wed to remove it. I just started having seizures a few months ago. I think removal will help. I also think all AVM’s are dangerous as they can hemmorage. We are lucky from what I’ve read here. I had never heard of an AVM utill 3 months ago. I’m not really scared of surgery, but I am afraid to leave my 3 month baby. They will only need to shave 1 inch of my hair. I’m having it done at Mass General, so I feel really fortunate. Hope this helps. God Bless

Samantha McClaren said:

Thanks everyone for your input. I go back to the neuro today to find out what they saw on the angio. I don’t know whether to hope that the avm is what is causing my seizures so that is “fixable” or to hope that it is “just” epilepsy. I am so anxious today I am pretty worthless at work (as I sit here posting on a website). This is a really nice website to find since it is such an uncommon issue. No one seems to even know what it is. Thanks again.

Research shows that small ones are more likely to bleed, but there are plenty of other problems with large ones I have learned from others here, that is for sure, but as others have said location is important too

mary kate said:

Hey Having a tiny AVM is definitely better than having a large one, but I am sure having a tiny one is still dangerous because its not really the size thats so dangerous, even though really big ones are worse. The danger is from the location and whether the AVM bleeds. I am not sure if a tiny AVM is less likely to bleed, but I am sure any AVM could potentially bleed. Good Luck!

Actually according to my dr the smaller the AVM the more likely it is to bleed. The location of tiny ones is usually the biggest issue like in my case mine is 1 cm X 1 cm but it is in the center of the brain towards the right side. Its pressing against pituitary stalk causing it to shift to the right and thus rendering my pituitary gland useless. but because its so close to the optic nerves and hypothalamus it is also causing symptoms with motor control and what not. so the smaller more risky to bleed but really with ALL avms it can bleed any given time.

Hi Samantha…I totally agree with what Shary Laney said. You will get more information after you have the angio. Stay stronge and let us know the results.

i have been told that any avm is dangerous… as for headache after i had my radiation THAT THE headaches are the avm shrinking but before it was cause the avm is sitting on something and that causes it to hurt… so go figure good luck with your procedure and god bless…

Yeh I too was told smaller is more likely to bleed. But there are so many factors that determine that. best to you.

Deb C. said:

Good evening Samantha,

My AVM was not in my brain, but I totally know about the anxiety of not knowing what will happen.


Over ten years ago, I had a small pituitary tumor show up on an MRI. I was scared to death. There were a bunch of hormonal tests done, and when the results of those were normal, the subject was just dropped. But as years passed by, and each time it was checked and there were no changes, I felt better.



More recently, I went to a orthopedic surgeon because I had some problems with my right hand that I thought may be related to the removal of my AVM. Although he concluded that it was probably work related, I asked him if I it would get worse, and he told me that if he knew what the future held, he would be buying lottery tickets. Considering I asked that because I was wondering if I should consider early retirement, I found that totally unhelpful. But as I thought about everything, I decided to twist his answer around and turn it into hope. Maybe I won’t get worse. And I did take his suggestion of lowering the keyboard shelf on mydesk, and my hand is functioning better. And somewhat related, maybe there will be better treatments for AVMs someday.



Hope you were able to get answers to your questions.



Take care,



Debbie

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