What do you guys think?

My name is Denice and I am a 46 y/o female diagnosed in early 09 with a right temporal/occipital 4cm AVM. I have had absoluted no symptoms of any kind…ever. My angiogram showed no signs of bleeding. My doctor decided to just “watch it” since it has not caused me any problems. I was just wondering what you guys think. Is there anyone out there in the same situation?? I like the idea of no surgery but it is real hard (mentally) living with it.

Hi Denice. Welcome to the site.

If it’s treatable, I think that would be my choice as opposed to “just watch it”. How does he propose to watch it and does he feel that this is less of a risk than whatever treatment options are applicable to your situation and if so, why? Because the risk is a stroke, and that can be devastating…

I am in total agreement with Nea’s mom. As someone that had one of those devastating strokes, I can tell you that I would choose treatment if it is an option. Are you being told that there is no treatment that will work for you? I could see if it were in a location that made it very difficult to get to that they would not want to do surgery. If I were you, I’d take my films to another doctor to get another opinion. If there is a treatment option that will work for you, I think you’d want to find it. Good luck to you!

hi Denice,i am one with nothing but headaches,bad one my whole life,im 42 now and had gamma almost two years back,my avm is on theleft,just above my ear and is 3cm ,never had a bleed,or seizure,but,there is no warning signs wheny ou do,if it could be treated,please do,most people find out about avms,when its to late,a bleed ,seizure,get a second opinion k,im so glad you had no signs after all this time,thats great news,I had gamma as i said,and just two weeks ago,i had my firts ever seizure,well my gamma doctor says it was and my neuro,and i on the other had felt it was a stroke,hope to never find out ,was very scary,and now they are starting me on some meds,to majke sure ity never happens again.i never had problems as well,but if you can,please get a second opinion k,hugs and always here for you k,Caroline

denise i was 53 when they found mine they suggested i wait. i insisted on treatment, and i had 2 ruptures during surgery, so they can’t tell if they are going to rupture. i would ask for treatment, and avoid some of the heart ache. take care karen

First you need to gather your information about this condition- lots of information!! and then I think you need a second and maybe third opinion and ask all the questions you will have… Does the doctor who gave you this recommendation have a ton of experience with AVM’s? If not, find one who does. I think that is the #1 important thing.
There are people who have AVM’s that are not treatable which is so difficult but if yours CAN be treated then it is something you need to really consider and one doctor’s opinion on your life is just not enough.
It is certainly a difficult decision to make and you are right- how DO you live with this and do nothing? It seems it would be better to take some action against it. You’re the same age as me and I think I would choose to work at getting rid of it but only you know what is the right thing for you.
My heart goes out to you. Let us know what you decide.

Hi Denice,

I would get a second opinion as well. Thanks for commenting on my blog posting, and I love your picture.

Best wishes,

Debbie

Hi Denice. My advice is to learn everything you can about AVM’s. I would get another opinion and again get more info. I made the mistake of just accepting what the Dr. said.It maybe scary but knowledge is so powerful.

Hi Denise,…

I can only reinforce what others have said here (re) your question.

Get other physicians and neurosurgeons opinions, (2nd,…3rd,…4th),…Have your medical charts ready, and present them when asked.

AVM’s are as different as the people that have them. What works for me,… may not work for you.

I usually fall back on my mottos/quotes and mantras, this one comes to mind:

“Information is knowledge,…knowledge is power”

Get as much information as you can,…that,…will inturn lead to knowledge,…the knowledge will lead you to the power,…to make the “right/correct” decision in your AVM case.

Read about the other AVM survivors/members here,…ask questions,…achieve your own personal edification.

We are all here to help you,…

William

I would want to know if there is any evidence of stenosis (constriction) of the veins or swelling or distortion of the arteries, which can sometimes result from the abnormal fluid dynamics and pressures that AVMs can cause.

Mine is also in the vacinity of the right Occipital and I get my first angio on Thursday. I should be discussing the “do nothing and watch” option with my doctor soon, too. To me, it seems like an attractive option. However, it sounds like your doctor is not factoring in the mental strain this course of treatment is causing you.

Here is a great article on AVMs: http://www.medicinenet.com/arteriovenous_malformation/article.htm

Good luck and keep us posted.

Thanks for your comments John, Maggie and William. I have read soooo much about AVMs and the difference with mine is that i have never had any symptoms of any kind. It is just kind of sitting there. Have had 2 angios and they see no abnormalities…not saying that something might not happen in the future. I had a great neurosurgeon in Las Vegas but I will be seeing a new neurosurgeon now that i have moved to GA, so i am anxious to hear what they think. But basically I agree with my Vegas surgeon … if i had experienced any kind of symptoms before it would probably be a different story. Thanks for your inputs!!