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AVM Survivors Network

My son is AVM free!


#1

Finding this website has been the best thing that’s happened for our family as we went through this difficult time. My only regret is not finding you guys sooner. For those who have not read my previous post, I came to this site in a state of panic. My 12 year old son had a craniotomy to reset an AVM 2 days ago. I was asking for advice on what to bring, words that may comfort him, etc. The outpouring of love and support I received was unfathomable. I checked this page every day and always had a new, extremely useful, good piece of advice from the beautiful people who have responded to my post. You all will never know the level of comfort and peace of mind I was given after reading your kind words not only in response to my post, but from the discussions I’ve read by other users on this site.
I am happy to report that my son is post op day 2 and doing wonderful! He had a shower, walked the halls 3 times today and has mild-moderate pain. God bless you all, my friends.
Sincerely,
Ginger :heart:
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#2

Wow Ginger, your comments are great and it’s fantastic news about your son !, hope he’s doing good at the moment :slight_smile: take care and thanks again


#3

Great news, congratulations!


#4

you are never free....one day at a time....


#5

Martin,
He’s doing better than I could have imagined. Thanks for the response!

Take care,
Ginger


#6

Thanks, Ahmad! :slight_smile:


#7

No sir, my son is free & clear of the AVM. No evidence of recurrence or residual as all post surgical testing shows unremarkable. He and I have never been more free of this fear and stress as we are now.


#8

Excellent news and may he continue to grow stronger and have a speedy recovery… It’s posts like this that make me feel proud to help run this site as I know first hand also how much it does help and how great the members are… God bless!


#9

Congrats! You’ve made it to the other side where the grass is green :slight_smile:



Maybe find him an instrument for motor control or something enjoyable to pass the time? The hospital is frustratingly slow.


#10

Ginger
I am so glad to hear this great news! I am happy that is able to walk and hope only the best for him and your family
Hugs
Angela


#11

Ginger that’s great to hear. Like in my profile if you’ll read I go on about my struggles but also go on about how I pushed through it. And how I found out that my story and guidance since finding this group has gotten me out of the funk and in the process helped two caretakers and a few AVMsuviviors see that there can be a life lived post-bleed. Peace and Tranquility
Yours Truly
Tex


#12

Thanks for the reply and suggeations! We made it back home and he is back to all of his old hobbies. He plays the clarinet and was able to pick it up and keep playing. Thanks again for writing!
Sincerely,
Ginger


#13

Thanks, Angela! We were very fortunate to have the outcome that we did. He’s continuing to get stronger every day-even went to a birthday party! Thanks for your sweet reply. God bless!
Love,
Ginger


#14

Hey Tex! You are truly an inspiration to many people. I enjoyed reading about your perseverance and bravery. Thank you for sharing your remarkable story and for replying to my post.
Love,
Ginger


#15

Hey Ginger, I’ve been lucky I’ve had the joy of mentoring people for years and hope my story is one that inspires for more years to come. Even in my darkest days I’ve found peace and love through inspiring and sharing with others. 17 years doesn’t seem like fare ago. I can remember laying up in ICU, being told the possibilities and laying there and telling myself in two years I will be walking. I was an arrogant nine year old with a wild hair not wanting to listen to the doctors’ prejections. And here I am. Walking without any aids (no cast, no crutches). I am surprised and not surprised, what others settled for but, want to show others that have encountered this beast that their is a life post bleed. I had a young lady that at the time was juggling her fence’s diagnoses of a bleed and the post bleed differences in his actions. She told me that he hadn’t been himself and I just enlightened her to a point of an AVMSUVIVOR. I later wrote to find out how things were. And she told me a month after our talk he pushed her beyond her limit and she left him and she had worried if she had done the right thing. And I enlighten her she was faced with a choice and choose the one that she felt was the best for her. I wish whomever reads this finds peace and encouragement to follow your heart.

YT,
Tex


#16

Hey, Ginger, is your son still doing Well? I’m just reading through posts and hoping everything has proved to be a good outcome that has lasted. Best wishes Richard


#17

Congratulations to u and your family keep us posted ok


#18

So happy for you!I hope he remains AVM free!My 4 yr old son has DAVF…had many embolization and a craniotomy last year.He was cured!A recent angiogram showed new growth areas…I’m not sure about AVM recurrence,but these DAVF’s are tenecious!


#19

Hi dear. I am happy your son can walk now. Thanis God. How much did it take for his recovery?
My brother had spinal avm and he had the sergury two months ago and he is paralyse now :cry: is there any hope that he can walk again?
Thanks all


#20

Ginger, Praise the Lord! So thankful for your story. Please keep us updated on his process… your success gives me so much hope.

Sincerely,
JoJo