avm in left parietal lobe

[bgpolo1]

Here's my background first: I am a 16 year old female who is active in sports and in relativly good shape. I have had episodes for the past couple of years where my vision will go away and ill have a loud ringing/buzzing in my ears and nausea followed by a headach. I have also have a history of migranes. I went to a pediatric neurologist a couple weeks ago and he thought i had complex migranes but wanted to be sure so i got an mra and mri and am scheduled for an eeg next week. the mri came back with arteriovenous malformations in my left parietal lobe. my neurologist now wants me to go see a nerosurgeon and i have an appointment with him in mid february. my mom is a rn and works in a neurologists office...i have never met the doctors but she brought my films in and they think that i will have surgery to have them removed.

i have accepted the fact that surgery is a very real possibility, but i am really scared, maybe its too much greys anatomy...for the type of surgery to remove avm will they keep me awake? what kind of recovery am i looking at? i am a varsity starter on my water polo team, will i still be able to play? will the complex migranes go away after the surgery?

thanks for all the help, i could realy use some answers.
jessica

[Juliejd]

When I read your post, I thought I was reading my diary...I had an avm removed when I was 13 (now 33). I, too, presented with terrible migraines which ultimately led to being tested via MRI. I was also experiencing visual auras and loss of left peripheral vision. I has surgery to remove the avm, but continued to have migraines and visual disturbances. I still have them. I am also epileptic from scar tissue that formed as a result of the surgery. The good news is that it's gone, I'm very active (play volleyball in college), My seizures are controlled (not everyone develops this) My point is that your life will change tempoarily, but you WILL get better. My memory sucks, but that may have been so anyway, who knows.

Surgery now can be much less invasive. There is something now called the "gamma knife". It's essentially localized radiation that treats the avm. It's typically done one time with few side effects, if any. A hospital stay may or may not be required. And insurance convers it. There are other less invasive ways they treat them too.

Please try not to worry too much right now. It's treatable. You are so young, and will recover quickly. Hope this helps. Good luck and keep us informed!

[uuudianauuu]

My sister also at age 13 had avm. She also experiences sezuires now. She is 41 now, and has a normal life, aside from sezuires. When she has sezuires it effects her speech and memory temporarily for a couple of days.
I am wondering, givin your age, if you have been told everything. You need to talk to doctor and ask him what you are wondering. Write down all your questions. My sister avm, became a blood clot, similar to anuryesm. She was lucky. She dived into a pool and the pressure must have done something, we thought she had the flu for three days, until we realized her speach was off. She went in house and said she didn't feel good and wanted to lye down. Everytime we would ask if she needed anything she would say, just let me sleep, I'm fine. We did not realize that was all she could say. She was givin very poor odds, due to blood clot.
She was lucky, and now has a brilliant six year old son. Back then they used medal clamps. They don't do this now. My sisters avm was over the speech and memory portion of her brain. This is why her speech and memory are affected after sezuires. I'm not familiar with the brain and sections, but I am sure there are areas that are easier to access and treat.
You are intitled to more information. Givin the fact your surgery date is not immediate, I would assume you are not in immediate danger. My family was told anyone of us could have avm, and it may never effect us. My mother wanted us all screened. They told her why worry about something that may never be an issue.
I know you are worried. If you keep looking up information...you will find stuff that may or may not bother you more. Talk with your Doctor, get details on the what ifs. Ask about the section of brain, your avm is in. What does it control and how accesible it is, for surgery. Are there any risk?
They have made major advances in medicine since my sisters emergency surgery.
Please keep us posted on you.
Diana

[bgpolo1]

thanks very much for ur feedback...

i am hoping to wait until after school is out if possible to have the surgery...my dream is the go to state with my water polo team and our only chance of going to state is this year as we will be gradueating about 15 seniors this year...do u kno of any advantages/disadvantages to waiting a couple months?

juliejd, i relise ur surgery was awhile ago but how was ur recovery? how much time were u in the hospital?
my mom isnt a big fan of radiation but ive read about what you are talking about online. the thing that frustrates me is there is so little information about the surgery, i guess its because avms are rare...

uuudianauuu, did ur sisters avm burst? did she have siezures before the surgery? or did she develop them after?

thanks! jess

[Juliejd]

In my opinion, waiting a couple of months is risky since it could rupture. But it completely depends on you're situation. Your Dr. should make that decision. That's why it's imperative you find one who will give you answers. Get a second opinion as well. You're mom may not be comfortable with radiation, but you really need to trust your doc. Treatment really has comne a LONG way. 20 years ago, brain surgery was invasive. In order to remove the avm, they had to cut through other brain tissue, in particular areas of my vision. With radiation therapy, that is eliminated. All risk associated with cutting through and damaging other brain functions is eliminated. That, in and of itself, would make me opt for that, rather than invasive surgery. That said, my recovery went well. I was in the hospital about 8 days and back in school two weeks later. My hair grew back slowly (that had to shave half), but it grew back wavy:)..I resumed sports later that winter.

Please get informed about your choices!!!! Good luck, and keep us informed as well. Don't be afraid to ask questions.

[uuudianauuu]

My sister was perfectly healthy prior to avm. She did not have sezuires prior.Yes, it did burst. Her sezuires are also from scar tissue. You need to talk to your Doctor. Ask him about the location your AVM is in, how evasive is this surgery. I'm not sure why your Doctor is waiting on surgery, or exactly the severity of your situation. I would assume if your mother is a nurse and works with a Neurologist, they would not want to subject you to unnecessary surgery.
I'm sure things have changed in 28 years medically. I am wondering if lasers are used now. Please talk with your doc. about what advances have been made and what are the chances of developing scar tissue.
My sister was very ill following surgery. She did not return to school for a year. She was over-medicated and lost a great deal of weight. It took quite a while to get her meds right.Things have changed quite a bit since.
I would strongly recommend having surgery done in a neurological hospital. My sisters was done in a hospital that did not specialize in Brain surgery. Neurological hospitals have access to modern equipment and if necessary another Neurologist available promptly.
You would be suprised, in my sons case no Neurologist was available, he was in a level three trauma center. He had a spinal cord injury (motorcycle crash), he was misdiagnosed do to fact no specialist was available. He just turned 18. You learn about where you should have gone after the fact...but its to late then.
I am sure your mom is aware of how important this is...but it doesn't hurt to make sure.
Take care, and please keep us updated!
Diana

[bgpolo1]

i had my eeg today and no seizures!! im really happy about that!

julie-u say you resumed sports later that winter, when did you have the surgery?

i leave near chicago so our hospitals are pretty good. My neurologist and neurosurgeon (though i dont see him until feb 14th) are both at childrens hospital at luthern general which is a pretty good hospital. i had two previous surgeries there for orthopedic reasons.

i keep you guys updated!! thanks so much for your input!!