It is stiil there...;((

I don´t know what to say…just feeling like sharing this with you all…Daniel exams are not clear, there is still a 0,8 cm AVM. It seems the doctor failed to remove it all…Mixed feelings in my head…His doctor told us he will need one embolisation and thats all…

I’m so sorry to hear that. I can imagine how disappointed I would be in your situation. How is the recovery so far?


Hi Ben, you mean the recovery after the craniotomy? He is doing great, no headaches, no medicines, it was too perfect. Thank you.

Oh Erica! My heart is just aching for you and Daniel. He (and you) have already been through so much. That really sucks. How is he dealing with the news? How are you dealing with it? Is the doctor who did the follow up exam the same doctor who did the craniotomy? Are you considering a different doctor now? It’s a blessing that he has not had any complications, but it just doesn’t seem like the doctor should have missed that. I am really sorry to hear this.

Your friend,

Hi Erica
I am so sick for you and Daniel right now, what is doc proposing to do treatment wise this time, is it another embolisation. Daniel is young and strong he’s fought and won so he will do it again and so will you. I know your down right now but keep your chin up Erica everyone will be routing for you two. x

I’m sorry to hear this news, Erica. At least what’s left is so tiny hat it will be quick to get rid of. Hugs to both you and Daniel. Keep us posted on what happens next.

Thank you my dear friends, I don´t know how I would cope without you to talk to.
I am not afraid of the embolization in itself (it is like the angiogram isn´t it?). It is far less scary than the craniotomy and that was a success in many ways.
At the moment I am trying to grab all my positive thoughts and energy to continue to ride this road. I just wanted to be sure embolisation will solve the problem considering the small size of the AVM now and that it is only one bloodstream. Thank you all!

Dear Erica,
i am glad you already find the energy again to remain positive. We never give up! As I had an embolisation I can only say that it has solved my problem and I am doing very well (except for an atrial fibrillation that is not yet fully under control but has nothing to do at all with the AVM). The procedure itself is like an angiogram and was relatively easy to support for me. Maybe it would be worthwhile to investigate if a cyber knife (not gamma knife) procedure would be a good alternative. See on Jessica’s page.
Many positive thoughts and my best wishes

So sorry to hear that Erica I hope the Ebolization is a success and everything works out as it should. Take good care!

Stay positive and know that we will all be here for you. It is always hard to hear of one so young having to deal with so much but sometimes I think it is harder on the parents than the child. Children are so resilient and it sounds like Daniel did good the first time and will so again, I have faith. I know how scary a second surgery can be, I know I am facing one in the near future also but we will Survive!! Keep in touch and rememebr if we cannot walk through, God will carry us.

Thank you Susan, you are right it is harder on parents. Daniel is happy as always. I explaiin everything to him and he takes as normal as possible. He also helps a lot, staying still for 40 minutes on MRI. God bless all my avm friends. Love you all.