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Comment by Ksucat on December 29, 2012 at 4:32pm

I was just diagnosed with an avm right before my 41 st birthday. It is too deep and near motor strip to be operated on. Too big for radiation. Too deep for embolization (I believe.) I really have no side effects. I had one seizure and that is how they found it.

No doctor is talking to any others. Just passed from one pointless appt to another. Waiting for them to again talk to one another. Going from surgeon to radiation oncologist to who knows where. I thought the radiation interventionist said it could not be embolized right after the angiogram but not sure. Thought about not treating when I thought I had options. Now that those options are no longer there I do want to treat. This all just SUCKS!

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

My spinal AVM stroke. Well I had one surgery. But it was unsuccessful. Mayo says its inoperable. I know my time is limited due to it being almost 14 years. It's goes up 2-4 percent every year. They said if I rebleed I will not survive. I'm living every day like its my last. The pain in my spine has gotten so bad. If I hurt I can't walk with out jerking. I'm lucky to be here as long as I have. But as time passes I worry if I'll wake up or what will happen. It sucks that there is no cure for spinal AVMs or any AVMs actually. I'm scared just like everyone here. I'm here if anyone needs to talk or have questions. My friends call me Super Jen.

Comment by em on May 14, 2012 at 7:16pm

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

Comment by Colin Rogers on May 14, 2012 at 6:50pm

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

Em much love to you all, and also in our prayers xx massive massive hugs xxx

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.

Comment by em on May 6, 2012 at 6:48pm

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

Comment by Padraig on April 17, 2012 at 3:22pm

hi everyone just wondering if any of have a spinal avm thats inoperable as i have same

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