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AVM Survivors Network

On Surviving Into Adulthood: A Childhood AVM in Brain

#23

Mari,
What a story you have here! Your life, I feel, is a MIRACLE, and God must be saying ‘You have more work to be done here.’ Hopefully, you could help others patients who have ruptured things going on w/them? Just a thought.
God Bless You.
Lisa

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#24

Dear Corrine,

Just passing by to say that your story is really inspiring. My wife has 31 years old and is recovering from a recent major avm bleeding, and I’ve read your story to her and she also felt inspired. Thank you for sharing! Best, Luiz.

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#25

Luiz,

I’m really glad my story helped your wife at such a difficult time. At first it is hard to see the light on the other side of the tunnel. Things will get better and you will work through this as a unit.

Keep us updated on how you are both doing :relieved:

Best wishes

Corrine

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#26

Mari:

You could be my daughter. She was also 12 when her AVM ruptured and is now 24. Her AVM was right on top of her brain stem and fairly large. We were told that the only viable option was Gamma Knife. At the time it was very new and only three doctors in the Country were doing it. To make a long story short, my daughter suffered from radiation poisoning from the Gamma Knife. While the AVM seems to have been taken care of, my daughter went through hell from the radiation and was left with many residual deficits which are fairly noticeable. Despite that, she finished High School and then obtained her Associates Degree. Now her problem is getting the rest of the world to accept her as she is and to give her a chance. I know her outlook on life is much different then other people her age and I suspect she often suffers from depression. I wish she were on this forum so perhaps the two of you could connect. I often think that she would do better if she had someone her age who she could relate to. I’m her Mom so my encouragement is expected and therefore suspect. She is one of the strongest and best people I know! I’m sure you are equally worthy. If you survived the AVM you can survive anything life throws your way. Enjoy each day and just do the best you can. My daughter is very active on line perhapos you would like to drop her an email and the two of you might correspond with each other. If you would like her email, let me know. Rachel is her first name and she is a lovely, compassionate, intelligent and warm human being. I wish you all the luck in the world!

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#27

Wow I feel I can relate with you on this. Doctors have given me an expiration date as well. You have given me hope, thank you. I hope you are well! Please message me if you’d like. I’m 27.

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#29

My AVM ruptured when I was 16. The doctors did not hold out much hope. I am now 62. I have lived a normal life. I have a child and a grandchild. A word of advice-before getting pregnant check with your neurosurgeon for special instructions. I was told that if I ever went into labor it could kill me.
Live your life and don’t be afraid to make plans. I used to freak out anytime I got a headache. Finally, I got rid of them with the help of my dentist. What happened to you was traumatic. Never forget (for reference) but don’t let it define you, either. May you live a very long and happy life!!!

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#30

AMEN!! Mine ruptured when I was 25. I gave birth to two beautiful daughters (C-section as we can’t deliver naturally or the clips can move!) and they are now wonderful moms and I have beautiful grandbabies. I work sometimes 2 jobs/always a full time/have never stopped living. The headaches after surgery I cured finally with acupuncture. Never let going thru this define your life. They said I’d have short term memory issues. I know I do but I just ignore it for the most part and take a lot of notes!! LOL. Love life!! Live FULLY!! Thank GOD we had that chance. XOXOXOXOXOXO

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#31

I just have to say this: “You go Girl”!!!

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