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AVM Survivors Network

New Here saying Hello, Left Frontal Lobe Avm

Hi Everyone,

My Name is Ara, this is my story.

I’m from Australia

Few months back in August while i was driving from work to home i had a grand Mal seizure which when i woke up admitted to the hospital.

Fast forward after having a Mri scan / Angiogram and many other difference scans the doctors / specialist have found a left frontal parasagittal grade 1 / 2 there is signs of a previous hemorrhage which has happened sometime through my life i am currently 28 and not sure when it could of happened.

my treatments options where to do nothing, due to prior bleed this is not recommended.
stereo tactic radiation / or Surgery.

they have advised safest is surgery to remove.
i am currently on 90 day waiting list for surgery as i have constant anxiety of having something that can rupture at any moment.

this is my first time in life which i have even knew avm existed yes a lot of reading has been done just wanted to see other members thoughts on exact location and symptoms what has worked and hasn’t worked for them. success stories.

please see photos attached

hope we can all be cured safely :frowning:

Ara,

It’s great to have you join us! We have any number of people here with a frontal AVM removed by surgery, so I am sure that you should be positive about it. I think many of us also understand your anxiety over a possible bleed, too.

I think it’s a good thing to have discovered your AVM – for you to have had a good investigation of your grand mal seizure – and be able to take steps to get the AVM removed.

While I look upon a craniotomy as scary, there are so many great success stories here (and people doing so well only a day or two after surgery) that I hope you have just as good a success. I think it’s a great thing that we live in the time that we do, that interventions of all of the kinds we have can be undertaken on a brain AVM. I do think I am most grateful for that.

Best advice I think I can give you is to keep a little busy while you wait for your operation. Don’t spend too much time idle each day just thinking, as I can imagine what your anxiety is like. Keep your mind occupied and your waiting time will go more quickly.

Very best wishes

Richard

1 Like

Hi Ara, You are a really perceptive guy. You are so right that the time we live in now better for options and odds of success.
As far as grand mal seizures, I’ve had hundreds due to my AVM surgeries. It’s just not something you get used to. Each one is terrifying and has a different location, time, witnesses (?) and recovery time.
I did check out the Epilepsy Foundation forum to see if I could connect. Seeing the absolute nightmares of existence there, I’m grateful to only have a few seizures a year. There is no doubt in my mind that the emotional/memory issues of AVMs and seizures overlap. Let’s keep hope alive and a positive day to day feeling, Greg