avm in my 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

[Lee0691]

Hi Jessica,
I am so sorry to hear your news.  I can truly empathize because I am a 47 year old mom with a large AVM in the left parietal lobe too. I think I am going to undergo surgery when my 7 year old son is a little more independent.  We have never been apart for 3 days, so I have no idea how he would manage my hospital stay for a month etc.
  My decision to wait is difficult as I hear every pulse in my ear and it reminds me of the AVM and the aneurysms I have blowing up.  But I think it is best for me.
You are young without too much responsibility -seek treatment soon!
Best wishes and I hope I hear that everything worked out well. My prayers are with you.
Leeanne

[bgpolo1]

Is gamma knife an option for u?? or emobolization?
i had gamma knife because my avm is too deep. mine is 3.5 sm long, i think like 2 cm wide, it looks like a little sausage, lol
I had it 2 and 1/2 months ago and i go for my first visist and mri since in 2 weeks...pretty nervous!!
luckily i dont have and aneurysms but i too get very scarred when i have a wierd headach or get dizzy

[Lee0691]

OH I do hope and pray that your visit will show that it is starting to occlude the AVM.
I think my doctors have told me that surgery, although scary, has better results for me than gamma knife.  Gamma knife will likely only have a 60% success, whereas surgery although has a 10% risk of dying on the table or being permanently damaged, will likely be more successful at removing the AVM and then hopefully the anneurysms will shrink.
  I can appreciate how headaches are scary.  I am prone to migraines at every thunderstorm and they definitely have new meaning now.  I take feverfew ( an herb ) to prevent the migraines, although I know that is risky too as it is a blood thinner and I will bleed out faster if anything ruptures.  
  I do hope you have success with occluding your AVM and will say a little prayer for you tonight.  If you believe in the afterlife ( I was a skeptic until I went to a famous medium and both my Dad and brother came through), apparently you can ask for healing angels to come into your sleep.  I will ask for you too.  You are too young to have such a stress. My best wishes, Leeanne

[bgpolo1]

all i can do is sigh. this summer has been a mess and although i thought i was finally getting on with my life, all that progress stopped. like i said before i swim and play water polo. well during swim practice one mornign, i got a really wierd headach, part of m head had a pulsating pain and in the back it felt like the screws they used for my halo were back in there, i also felt pretty dizzy when i swam. i told my coach and shes awesome about it so i just swam real easy for the rest of practice. the pain went away during the day so i went to polo practice that night. i made it thru most of practice without any problems, just one shot to th face. but with 15 minutes left in practice, one of the best shooters on the team shot, the ball it the cross bar and came down and hit the back of my head. it was the hardest ive ever gotten hit and it felt like my head was going to split open. i immediatly left practice on my friends urging. i took 2 extra strength tylenol and slept with an icepack on my head. when i woke the pain was only slightly better so i called my mom and she called my surgeon and he sent us to the er for a ct scan to see if there was any bleeding. thank goodness there wasnt but he said he wanted me to not play or swim until at least when i saw him (my appt was 3 weeks away). so i had to stop going to practices which were the only things keeping me sane. finally my appt came and he said that he had wanted me to get back to my baseline and now he had no medical reason to keep him from clearing me. although he didnt like that i was repeatedly getting balls thrown at my head (cuz im a goalie) because he didnt want any head injuries with my avm so i had to quit that :( i felt horrible about it but to be honest i was sorta expecting it. luckily my coach is super supportive of me and was totally cool with it so now im trying to adjust to playing  field.
wow, sorry that was so long and prob more than u care about, its just been an emotional roller coaster and i needed to get it off my chest.
the mri showed no shrinkage :( but he said not to expect any yet, hopefully the one year one will show some!!


how big is ur avm? bc my surgeon told me that i have a 90% chance of it working in 2 yrs and 80% chance in 3
and also where is urs located? bc with open surgery i would have had permant neuroglogic damage and most likely had a strok once he got to the avm.
when are u having your surgery?

i am extremely cautious about taking any type of a blood thinner now tho i will for bad muscle aches that tylenol just doesnt seem to help. i am very paranoid that when i do bleed it will be when i have taken motrin or something like that.

actually i am athiest but i greatly appretiate ur thoughts and prayers! i will be thinking about u too and hoping for a quick recovery!

question tho, do u kno wat any of the symptoms of a bleed are? because im going to be going to college next year and i want to tell my roomate and new coaches about it but i want to give them some warnign signs incase something does happen someone knows wats going on and i can get the right treatment asap. i looked online and i couldnt find much information, just that u can die, which i very well know...

[bgpolo1]

i also believe (as does my mom) that i have permanent nerve damage on the front left side of my head from the screws of the halo. when i touch my head in that area i feel it in a different spot and it doesnt feel like im touching, like not with a finger, idk its very hard to explain...

[redneckgurl]

you are in my prayers and i hpoe every thing turns out good

[bgpolo1]

thanks u so much ben!! ive been looking all over for something like this, i started a community on rareshare but its nothing like urs!

[fcasey]

I would like to know in which part of the country you live in because I was diagnosed with an AVM ten years ago and the Dr's won't do sugery and just this last summer I had a seizure after ten years on no medication at the time I am highly allergic. I would like to talk to a Dr. who is willing to do surgery. I can not find one in the area I live in. They olny want to treta with medication.

[bgpolo1]

i am in the chicago area
but i highly reccomend you check out avmsurvivors.org
there are people from all over on there who can give you advice on doctors in your area probably and they are full of support!