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AVM Survivors Network

Revisiting a nightmare

Wow! Where do I begin? I was checking my emails this morning when AVMsurvivors.org showed up. I hadn’t seen this site in such a long time (thank goodness!). I am a grandma now, but my 12 year old son (he’s 41 now! :shushing_face:) woke up one morning with a seizure. We were so scared. Little did we know that that feeling would multiply by 1000 in the next couple of days! To make a very long story short, we found out our son had an AVM! We had NO idea what that even was back then. But, it was not good. Remember…this was almost 30 years ago. Moving on, Mike, our son, ended up having a craniotomy with no pre-procedures like GammaKnife or radiation. He was in surgery for 12 hours! (The surgeon said it would be about 4-6 hours!) His recovery lasted 2 years, including physical therapy. He was paralyzed on his left side after surgery so it was scary. No one really knew what the long-term prognosis was. It was very hard as my son was a very good little athlete. He loved all sports, and that was a big part of our lives. Anyway, he eventually regained about 80% of his ability to move on the left side. He still walks with a slight limp and it’s hard for him to grasp things with his left hand, but he is great! He married a wonderful gal and we now have 4 grandchildren! (Well, actually 5, counting my daughter’s daughter!). No, Mike wasn’t able to pursue his dream of playing sports in high school and college, but he found other interests along the way. Considering what he faced, he has grown to be a fine young man, if I do say so myself.

Why did I write this? Only to give other parents or caregivers a positive outcome even when there wasn’t much info or knowledge on AVMs back then. Always keep the faith, and make sure to be positive. Good luck and God Bless.

9 Likes

Debbie thank you for sharing your positive message! Your son is truly blessed to have recovered as well as he has. We are all striving to get better and better. Mike, may God continue to bless you.

Sharon D…

Thank you so much Debbie this is a good encouragement for a mom with an AVM survivor . The same like your son my son Walta blasted an AVM on his brain stem at his age of 12 in 2011. It is now 8 years on a wheelchair with right part of his body paralysis. He is improving he did a surgery of DBS in John Hopkins this year . I am waiting more improvement to be a grand mom like you. He is 19 years old now. Walta’s mom Netsanet . He can not communicate much to be part of this family.

Debbie, sound like your son was Blessed by a ‘2nd Life’! I was, too, In 1990, at 29, after 2 strokes during 7 brain surgeries to fix my gigantic AVM, I was, also, 1/2 paralyzed. I was, also, blinded, could not walk, talk & more. Anyway, I lost everything because of that, so I realized I will just have to start over at everything. It was hard, but I survived it all, & I am so Blessed & HAPPY, now! Lisa

Hi Sharon,
I’m so sorry I haven’t responded to your message. Thank you for your blessing for my son. I pray that whatever you are going through or went through is continuing to improve and that you will have a great outcome like my son. Thank you again, and God bless.
Debbie

Hi Walta,
I am so glad that my message gave you some positive hope for your son’s outcome. I know how hard it is to watch your child go through such horrific things. I will pray for you and your son. Never give up hope because your son can improve. Please keep me posted regarding his road to recovery.
Debbie

Hi,
Wow! You are truly blessed to have recovered from your ordeal. It is so inspiring to so many out there who are currently going through their struggles. I will keep you in my prayers, and I’m so happy that your life is a happy one! God bless!
Debbie