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AVM Survivors Network

Daughter has avm

Hello. I am a mom of an avm survivor. Her instance happened Nov. 14, 2014. It was the scariest moments of my life. She was 5 yrs old then. I had no idea. I didn't even know what avm was. She survived to see her 6th birthday this February. My sweet baby has been through so much. She still has surgery due. I'm scared because her avm is in her brain stem.

Mom, There is a sub-group that may be great support for you.

http://www.avmsurvivors.org/group/parentsofavm

My thoughts and prayers are here for you.

Hi again avmmom and good for you in posting here. This community is so caring and hopefully the members can allay some of your fear.

My thoughts and prayers are with you, too. There are thousands of survivors here, so have hope. :slight_smile:

Hello avmmom, I’m a AVM survivor. I encountered mine at the age of nine. i have overcome mountains. I have assisted in several accounts of loved ones struggling with avmsurvivors. I’m writing this to tell you if you have any immediate questions email me at ■■■■■■■■■■■■■■■■■■■■■■■
Yours Truly,
Tex

My daughter's avm also happend in Nov of 2014--wow her's happend on NOv. 29 2014, us too it was the scarest time of our life. I didn't know what an Avm was either. My daughter is 10, & also suffered 2 mini strokes along with hers. She is now in a wheelchair can't walk or talk due to these & she was an active child before all this. Her only symptoms were: falling behind in school in math & reading for the last 3 yrs & poor eye sight, occ headaches. She has underwent at least 7 surgeries for the avm--she had a shunt put in, a craintonomy bone flap removed, bone flap put back in, & her face swelled up & the fluid is infected & may have to undergo yet another surgery to poss remove the bone flap & put an artifical one in. Does anyone else experince this artifical bone thing?? what to expect, regetions drugs , long term antibotics?? anyone deal with this?? any thoughts on this would be helpful

Update-- My daughter is now 7. It has been a year and 3 months since her rupture. She still has a palsy on her left side of her face. She cannot close her eye. She has had an eye lid weight implant so it can close when she sleeps. I have to put ointment in her eye every 3-4 hours to keep it lubricated. She also has a rare form of TMJ. She has had several treatments for this and nothing has helped yet. She cannot move her left eye to the left and she has had 2 muscle eye movement surgeries to help correct this. The good thing is that the dr is happy and no more eye surgeries. She will be fitted with glasses that have a prism to help with her double vision. She continues to go to speech therapy and physical therapy (for her ataxia).

Even with all this going on in her life and what she has been through, she is a very happy child, social and will start gymnastics next week. She is still the same little girl.

Thank you everyone for your words of encouragement.