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AVM Survivors Network

Newly AVM diagnosed

#21

Hi Zarah,

My name is Anna. I had my first hemmorage 5 years ago when I was 47 and a second bleed this past April. The AVM location is in the right ventricule of my brain, so I had terrible headaches but no neurological deficits from the bleeding.

I have been told that surgery is the only way to remove this AVM so my plan is to wait and if it bleeds a third time, I will opt for surgical removal.

I have been living with occasional headaches and fear that it will bleed again but I am able to go about my daily life without obsessing over it. My headaches took a long time to resolve but in time, I felt about 75% back to my self. Fatigue and headaches are still something I deal with occasionally, but it is possible to adjust one’s mindset and continue enjoying most everything even with the AVM still present.

I hope you’re able to resolve your condition, but if you have to adjust to life with it, it is possible.

Best of luck to you.

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#22

Hello Annalise,
Thank you for sharing your story with me.
I have as well some bleeding but no deficit for now,
My angiogram is programmed for 8th January and doctor will say what shall I consider as a treatment.
Am doing ok accepting it and trying to live with it untill the 8th at least . Just feel like it’ll happen anytime. So whenever I wake up am so grateful to be alive.
Am scared and feel like my life is changing . Already dropped some plans with boyfriend to travel untill I see what’s gonna happen in the near future.
Am emotionally unstable and going through a rollercoaster of feelings and mood swings.
I’ll keep you posted about my angiogram.
God bless u

1 Like
#23

Hi Zarah,

I had a tonic clonic seizure back in 2016 to wake up with a dislocated broken shoulder, had to go through surgery, recover from that and just had a angiogram recently for my avm, at first I was just like you but I met with a very well known doctor who is notorious for avm research etc , he explained everything early to me. The more knowledge the better as soon as I got proper information I was instantly releived, now I’m not doctor but from experience and tons of research and knowledge I can just say you have already lived with this your entire life, you were more or less born with it.

Good news is you did have a bleed, you found it early, no seizure, no stroke etc etc… you are on a perfect path actually, u got all the doctors lined up etc… ask them all the questions you need, available surgical options etc, there a study called ARUBA read into it, I’m also part of the TOBAS study .

Sometimes after the angiogram they may ellect to just leave it be and keep it monitored with yearly scans etc, but every single person has a specific scenario with each and every avm they all differ in sizes locations etc…

Take comfort in knowing you have it, your doing your research, your getting you angiogram To further diagnose exactly the structure of the avm, to he angiogram is painless , the only long part is sitting still post procedure, you know you have good doctors you can ask how many they have done and how often also if it gives you comfort.

To end this with a big good luck and smooth sailing, I would not stress about it or else that will drain away your life, remember you were born with it and only cause this is new to you it’s different at the moment.

Sit back relax take it easy and continue with life , you are already doing what is needed to be done. We also live in a age and have the tools to ammend these things.

Wally

#24

Dear wally,
Thank you so much for your words.
Am trying to read and get more information about the AVM every single day. I’m fortunate in a sense that I get to know about it now and not later.
I won’t hide that am scared from my angiogram on 8th January but am trying to lift my spirit up and keep positive.
I will share my results once am discharged from hospital on 9th.
Thank you.