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AVM Survivors Network

New here

Hi everyone, my name is Isabella Antenucci, and I was diagnosed that a brain AVM a little over a month ago. I have a 3 cm that is located on the right side of my brain near my eye. I’m 20 years old from Roswell, New Mexico, and attend college at the University of Massachusetts Boston as a double major in English and psychology. I started experiencing symptoms without even knowing it about a year ago. There is a field in my left eye where I cannot see, and I’ve been experiencing migraines for quite sometime. We found the AVM completely by chance when my eye doctor decided to have a scan done to observe the corneal thickness in both eyes. In the span of a month, I’ve had an MRI/MRA (day of diagnosis) an angiogram (July 10th), and am scheduled for a radiation consultation on August 4th. I’m so happy to see that we have a support group, and am looking forward to hearing about everyone else’s journey on here as well. Nice to meet y’all.

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Thanks for joining, as one English major to another, it’s good to have you around. Totally random - what is the most unusual thing that has happened in your English classes so far?

TJ

P.S. I’ll tell you mine once I hear from you…

Hi @Bellnucci! Sorry to meet you under these circumstances. Interesting about the visual field loss but that is my situation as well. I cannot see out of my right eye though functionally with the muscle of the eye it “works.” Have the doctors said anything about risk of bleed? With you finding it pre-bleed, the should have a variety of techniques to deal with the danger. Course I am not nor ever will be a medical doctor, but I’m glad you found the AVM. Blessings as you continue!

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Hi there TJ!
As far as odd experiences go I would say it depends on the teacher I had! In my Five British Authors class, I had a teacher who would come in every morning, play a ska song of the day, and disperse to that class random carb filled treats as he was training for a marathon and didn’t want to be the only one eating. I couldn’t count amount of times he brought honey buns in haha! Every class with him was an odd albeit interesting and fun one! He actually became one of my favorite professors. Thanks so much for the question!

Bella

Hello!
Though the circumstances aren’t great, I’m so glad to be here! I really had no idea about the vision loss until my doctor said something about it! In terms of bleeding, they say I am at risk, so to keep it under control and lower my chances I am not allowed to lift, workout or really do a lot of strenuous activities. I’m also not allowed to have anything that would thin my blood, so no drinking and they said Aleve and Advil are completely out of the question for me (unfortunate for my headaches)! Thanks so much, I hope all is well for you and am sending many good vibes your way!

Bella

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ha, i had an English teacher, he was lecturing on British literature from the 1700s. One of my classmates fell asleep. While lecturing, Prof wrote on the board, “starting in the front row, with the exception of MR Smith, all of you are excused from the class one at a time.” It took about 5 minutes and then the prof, while still lecturing, walked over and out the door too. I guess he didn’t wake up until the bell rang - which was another 20 minutes.

30 years later, we will laugh about that one.

TJ

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I had GKRS on 9/16/19 and lost my peripheral vision on both sides at the 10 month mark. My neurosurgeon said it only happens to 10/15% of people this far out. I did a round of such high steroids I am on insulin l. Good luck to you.

I could relate to your story. They found my AVM by accident last year @19. I was experiencing stroke like symptoms and went to the ER. The doctors there were hesitant to do a CT Scan since I was so young, but they did one anyways and found my 3.5 cm AVM in my Basal Ganglia. I got 2 rounds of Gamma Knife Treatment last year in July and November. I was on a modern dose of Corticosteroids for almost 4 months, I just got off recently around 2 weeks ago. This group is filled with very supportive people who have gone through similar struggles. My AVM has shrunk 40% is the last 10 months. Now @21, I’m optimistic of my future, and I’m sure you’re gonna become a much stronger person from this as well! If you’re ever feeling down and depressed or need someone to talk to, you can reach out to any of us and we’ll be happy to help! I’m a Psych. Major too btw.