JUST TO START OFF I WRITE IN ALL CAPS BECAUSE IT'S EASIER FOR ME TO SEE...JUST DON'T WANT TO OFFEND ANYONE...I AM A 38 YR OLD MOTHER OF A CHILD WHO WILL BE 21 IN SEPTEMBER WHOM WAS DIAGNOSED WITH A BRAIN AVM WHEN HE WAS 2 MONTHS OLD...IT WAS THE MOST SCARIEST THING I EVER HAD TO ENDURE SEEING I HAD JUST TURNED 17 & ALL THE 1ST HOSPITAL COULD TELL ME IS THAT HE (AS IN MY SON) WAS GOING TO DIE & THERE WAS NOTHING THEY COULD DO...THEY DIDN'T EXPECT HIM TO LIVE THIS LONG BUT SO FAR SO GOOD... HE SHOWS SIGNS OF PROGRESSIVELY GETTING WORSE 5 YEARS AGO HE STARTED GETTING NOSE BLEEDS...HIS LIFE GOAL WAS TO ALWAYS BE A FATHER...I BELIEVE IT IS BECAUSE HE DOESN'T WANT TO PASS WITHOUT LEAVING ME A GRAND BABY FROM HIM...JUST TO JUMP AWAY FROM THIS BECAUSE I AM SO EMOTIONAL RELIVING THIS...ALL THESE YEARS I FELT SO ALONE...THE PEOPLE THAT NEVER HEARD OF AN AVM JUST LOOKED AS IF I WAS MAKING UP STORIES...I JUST FEEL LIKE NOW I CAN BREATHE LIKE A BIG WEIGHT HAS BEEN LIFTED OFF MY SHOULDERS...I CAN'T WAIT TO TELL HIM WITH HOPES THAT MAYBE HE WILL JOIN BECAUSE HE NEEDS THIS SUPPORT AS WELL AS I DO...I AM GLAD TO BE HERE THANK YOU...
WELCOME, NATASHA! IT'S A HARD THING TO GO THROUGH ALONE. I'M GLAD YOU'RE HERE!
JH
THANK YOU VERY MUCH JH
Hi Tony’s Mom. There is a sub-group here you may wish to join…
http://www.avmsurvivors.org/group/parentsofavm
Every member there has a child with an AVM. No limits on the age of the child. Once a parent always a parent. There are several people in that group with grown children!
THANK YOU VERY MUCH BARBARA...
NATASHA,
GLAD YOU'RE HERE AS WELL. YOU ARE NO LONGER ALONE AND THERE ARE SOME WONDERFUL PEOPLE HERE WHO ARE GOING THRU THEIR OWN JOURNEY. WELCOME TO THE SITE AND DON'T HESITATE TO ASK IF YOU HAVE ANY QUESTIONS!
Hello,
So glad you feel some peace in finding this site :) Please research HHT. An AVM and nosebleeds are two of the four criteria. There's a 50% chance of passing it on to children.
Best of luck on your journey. My daughter just had her craniotomy two weeks ago and is doing well.
Take care!
Hi
I have a son, but he is 31. I was the child with the AVM when I was 9. I am now almost 62. No one else in my family has an AVM as far as I know. I will be thinking of you and Tony.
beans
Welcome Natasha ! As one mother of a child with AVM, I can totally understand all your emotions. I;ve been there, and I felt all of them. This place here helped me a lot when my daughter was diagnosed, when she was having her surgery, and post-op. This is a great community, everyone is very helpful, and trust me they know a lot from experience. I've learned here a lot too. I feel maybe you should get a different oppinion, things have changed, thechnology have gotten better. Maybe what was inoperable before, now it is. I would look into it, 2nd, 3rd, opinions. I would go until I could not go anymore. I feel your pain. Good luck to you all, and God Bless
hello natasha,
first of all welcome...im myself have a AVM, psuedo tumor cerebrai and a hemangioma all in my brain...im 28 n just found out about all of this within a matter of the past year and a half...i know my mom is takin it hard especially because im a single parent of two little kids...its not eay but all we can do is take it day by day and try n learn as much as we can about it...what i can say is that since discovering all this i take my life day by day and try to enjoy every moment..i dont dwell on my sickness because it will only depress me n thats not good for my family...keep in touch and let us know how tony is doing..
THANK YOU...MY SON ANTHONY'S IN INOPERABLE THE MAIN ARTERIES IN HIS BRAIN ARE TANGLED & THE HOLES ARE IN THE TANGLEMENT THEY MANY EMBOLIZATIONS BUT STOPPED YEARS AGO...HOPE ALL IS WELL WITH YOUR DAUGHTER HOW IS SHE DOING...THANK YOU FOR THE BLESSINGS ME & MY FAMILY SEND MANY BLESSINGS BACK TO YOUR FAMILY...
THANK YOU HOPE ALL IS WELL WITH YOU AND YOUR FAMILY YOU WILL ALL BE IN MY PRAYERS...
GLAD ALL IS WELL WITH YOUR DAUGHTER PRAYERS WILL ALWAYS BE FOR YOU AND YOUR FAMILY...WHAT MY SON HAS WHEN IT WAS DISCOVERED THEIR WAS ONLY 500 REPORTED CASES...AND THEY TOLD ME HIS CASE IS RARE & NOT HEREDITARY (JUST SAYING WHAT THEY SAID BUT THINGS HAVE COME A VERY LONG WAY SINCE THEN)THE MAIN ARTERIES IN HIS BRAIN ARE TANGLED & THE HOLES ARE IN THE TANGLEMENT..I AM GOING TO TALK TO THE DR.S THAT LOUISA SUGGESTED AND SEE WHAT THEY THINK NOW...
THANK YOU VERY MUCH SUZY...THANK YOU...YOU HAVE ALL ALREADY BEEN SO WONDERFUL & HELPFUL...
THANK YOU...TONY LIVES HIS LIFE LIKE THERE IS NOTHING WRONG WITH HIM BUT I MAKE HIM AWARE THAT THERE IS BECAUSE HIS HEART IS ALREADY STRAINING & HE WALKS TOWN TO TOWN (WHICH IS A LOT)...HE BLESSED ME WITH A BEAUTIFUL GRANDDAUGHTER (SHE IS HIS TWIN) YOU AND YOUR FAMILY ARE IN MY PRAYERS...PLEASE KEEP ME UPDATED ON HOW YOU ARE DOING...THANK YOU VERY MUCH FOR THE KIND WORDS...
EVERYONE HERE HAS BEEN SOON WONDERFUL I THANK YOU ALL SO VERY MUCH :D
WELCOME NATASHA TO A AMAZING SUPPORT GROUP,THEY HAVE HELPED ME COPE THROUGH MY SONS DIAGNOSIS AND TREATMENT, WHEN I WAS TOLD MY SON HAD A AVM I WAS CLUELESS TO WHAT IT WAS AND EXTREMELY SCARED BUT FINDING THIS GROUP HAS BROUGHT ME AND MY SON COMFORT KNOWING THERE IS SOMEBODY THERE WHO UNDERSTANDS, I HOPE YOU FIND THE SAME COMFORT I HAVE XX
Your not alone. It is so hard. No one understands what an AVM is and everyone thinks just because they look normal, they are ok. Feel really bad for our children having to live with this. Just doesn't seem fair. My daughter was diagnosed at 7 after a bleed. She still has the AVM and everyday I pray for this nightmare to end for her. I just want her to be able to live a normal life. I hope for the best for you and your son. This website is a great support system. It's nice to be able to communicate with others who are going threw similiar circumstances.