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!
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.
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?
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.
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!
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!!
wow, what a day...
i saw the neurosurgeon today and the news was ok...
im having an angiogram on thursday and once those results are in we r going to sit down with the neurosurgeon and discuss the future...he said from the mri it looks pretty small but the angiogram will tell us exactly how big it is...
but until then no water polo which made me cry...our season starts in just 3 weeks!!!
im having gamma knife radiation on march 14th
my surgery went well, although they told me i would be fine the day after, bs, i had horrible headachs for three days after, my face swelled to the point where i couldnt even open my right eye (tho they did tell me this would happen, tho it wasnt until i was leaving...), i didnt go back to school til last wednesday (my surgery was two weeks aga yesterday) and this week was spring break, ive been back in practice since last wednesday, i took two shots to the head yesterday and had a real bad headache for the rest of the day...
my holes in the back of my head are still really really tender and they hurt after practice because of my caps...the front ones are pretty much ok, i still have not regained feeling everywhere in my head though and i can not feel my left front hole still...
i go back to my surgeon and get another mri in june to check for swelling and stuff...
the staff at the gamma knife center were phenomenal!!! the physicist and radiation ocologist were amazingly nice and understanding and my nurses were fantastic. i was a little disappointed that my surgeon left once i started my radiation ( i know this because i took a break since my treatment was 2 and half hours long and he wasnt there then or once i was done) though he was really good putting my halo on. i needed more numbing medicine while they were putting it on and after i was done with my angiogram and they had no problem giving me more...
ill let u guys kno how everything goes
I just want to thank you for your story. I, too, had an avm removed from the left side of my brain in Aug. 2003. I never had a seizure prior to brain surgery but since brain surgery I have seizures. My original neurologist left my town 2 years ago and since then I have not had great luck with a neurologist believing I have seizures because I don't pass out They tell me that my EEG is normal. What a mis-diagnosis of temporal lobe epilepsy! My AVM was in my occipital, parietal, temporal and partially frontal lobes. IT WAS VERY BIG. My last mri two weeks ago shows the scar tissue in the temporal and periatl lopbes. It was discoved when I was 41 and I am 46 today! To this very day I have areas in my head that are sensitive from the brain surgery. It took my 2 1/2 years to recover from it! Today I live a very full busy life with my 3 sons and full time job as a dental hygienist. It has affected my memory, ability to "do" math and my eyes have good days and bad days. Somedays I need my contact lenses and somedays I don't! I just want to thank all of you for your stories. It has taken me all these years to find stories that parallel my own!
That is horrible! I have been fairly lucky with my neurologists. I highly reccomend you check out avmsurvivors.org it is full of avmers like us :)
and just an update, my avm was gone just 11 months after gamma knife, waaaaaaay earlier than i or my surgeon expected!!
I'm a 46 year old female now .Had brain surgery to remove an AVM at 17teen yes it was very difficult but you will get though it. I have two childern.I raise myself they fine 23 and 17teen. As long you belive this is not the end and you have have some kind of mental support .
I am a 67 year old male and have a superficial to deep arteriovenous malformation of the left parietal lobe near the speech center. I've known something was wrong since high school. In college I played soccer and would lose sensation in my right arm and not be able to tell where it was. When I was finally given a diagnosis at age 26 I was told it was inoperable. Follow-up studies caused me to have seizures for which I was given phenobarbital to which dilantin was added. Next dilantin and tegretol. And then tegretol and depakote. Finally gabapentin. All during this I have had break through seizures but no one was willing to operate for which I am now grateful. I have had an active and fulfilling life. I still ride a bike. I'm a one day Seattle to Portland rider and try to do a century every month from March to October. The pills haven't been fun - especially when they go toxic - but after hearing the stories about surgery... You young folks are certainly a courageous bunch. My hat's off to you.
My mother who is 53 years old had surgery to remove an AVM in the left frontal part of his brain in June of 2010. She was first given some sort of dye treatment the day before the surgery, when she came out of that she was irritated and could not be understood. She was unable to speak coherently. They then went into surgery she went through 22 units of blood and almost died. Since surgery she has been unable to use her right arm still as of april 2012, she had a tracheostomy done and cannot speak now due to damaged vocal cords. I am very upset that she has not improved and cannot take care of herself even. She can understand things but we have been told she has aphasia, they also have claimed she has epilepsy she prior to surgery never had a seizure and her symptoms were eye pain, and sensitivity, and headaches. It was found in an MRI. She has not seen her neurologist in a year and they seem to be unconcerned citing she should have been brought in to see him. I am sad because I feel that after researching this subject the treatment chosen was inappropriate and am looking for more information. PLease! Thank you.