A subgroup for patients (and relatives) who have been told their AVM is inoperable.
Members: 186
Latest Activity: on Wednesday
Started by Lisa. Last reply by Lisa Mar 5. 6 Replies 0 Likes
Started by Sandra. Last reply by dancermom Nov 5, 2012. 9 Replies 0 Likes
Comment
Comment by LeaMi on November 20, 2012 at 8:28am Super Jen! Im so sorry to hear about your AVM. You seem very brave and for someone who struggles with such a bad case of AVM, I find it completely moving that you want to be there for others as well. PLease dont hesitate to let me know if you need someone to listen or talk to! You're in my thoughts, xxx LeaMi
Comment by Superjenlynn on November 19, 2012 at 2:50am Just wanted to thank you all for your kind thoughts - what a great support people on this site have been. I hear your words Colin and I value them - thank you.
Em
Hi EM, you know I keep telling people these things but I must admit it's hard to comment on the trials of such a young sufferer. Children are so very tough though when it comes to adverse health problems and suprise us with the way they come through them.
For a mother it is the last thing that you want to see, your child going through this. Try to hold on to these words;
You will always be there for your daughter and she will always have your love and support, and that is all a child needs. Do not let the fear of the unknown interfere with this, never be scared of "what if" because "What if" might just be for the good and not a bad outcome! Remember to live the good days and cope with the bad ones! You have to take what comes but be assured you have all the love and support of everyone on this site and more.
I have an inoperable 6cm brain AVM and might make 64 on the 14 August this year. Don't give up, anything is possable.
You are both in our thoughts and prayers.
COLIN.
Comment by Amanda on May 14, 2012 at 5:03pm
Comment by Connie T on May 14, 2012 at 1:05am Em, I will also keep your precious daughter in my prayers.
Comment by Carol Hart on May 13, 2012 at 12:43am Dear EM, I began to cry when I read your story. Your little girl is in my prayers. I had my first bleed in 1995. I have had MANY surgeries and treatments for this AVM, I learned that it goes thru my brainstem. I know the possibility of a rebleed is there. I don't know the numbers and I think it's better not to even think about it. Try to keep a positive attitude about it, help your daughter live every day to the fullest, and pray that God will provide her and you with the strength to overcome this. Godspeed.
Hello all - I'm joining your group.
My daughter is only 3. She has a diffuse AVM in her Thalamus, discovered 5 weeks ago when she had a large bleed.
She has recovered really, really well from this incident with minimal neurological deficit (amazing) and I'm so relieved to have her here with us right now.
Her AVM is inoperable (embolisation was not possible and she is not suitable for radiosurgery either). Given her age and nature of the AVM, her prognosis seems pretty poor. A re-bleed seems inevitable and given the location of the malformation the consequences are likely to be devastating.
Of course we are all trying to get on with life as she is essentially a happy, bouncy toddler right now. I'm wondering how we are going to manage the constant fear of the next event. Every time she holds her head or cries out I'm a nervous wreck...does this fear ever subside?
How do you all approach risk? What (if any) activities have you been advised to avoid? I appreciate that managing her activity may be difficult given her age, and to an extent I believe we must let her just enjoy her little life, but I'd be interested to hear how you have all approached this dilemma.
Thanks
hi everyone just wondering if any of have a spinal avm thats inoperable as i have same
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Posted by Ben on May 24, 2013 at 10:11am 0 Comments 1 Like
Dear AVMSurvivors Family and Friends,
Celebrating Awareness Months for specific rare diseases are a great way of procuring attention to our cause. By discussing our condition and helping to educate others, our active participation creates…
ContinuePosted by mamaginof3 on May 9, 2013 at 3:13pm 14 Comments 0 Likes
Posted by Fish on May 10, 2013 at 3:25pm 1 Comment 0 Likes
My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has…
ContinuePosted by Michael on May 2, 2013 at 3:14am 5 Comments 1 Like
Hello there,
how it's for you? In my case, I have the paralysis since last october 2012. Before that I was very active with cross country running, dogsport, and so on. The good thing: In my dreams I had no Paralysis. I run in my dreams,…
ContinuePosted by tdz103m on May 2, 2013 at 5:34am 5 Comments 5 Likes
I don't know exactly when it happened because I slept through May 1, 2012. All day.
May 2, I was able to move around a bit. May 3 a bit more but by May 4th I was feeling in the deepness of it and told my wife to dial 911 and it was into the…
Posted by Armando A. on April 21, 2013 at 8:00am 0 Comments 2 Likes
After being featured on a number of publications,…
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