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AVM Survivors Network

12 yo son 12 embolisations in on extracranial avm


#1

Long story short , my son was diagnosed in 2014 with an AVM above his right eye after years of shuffling from specialist to specialist. Another smaller one was located on his scalp. The scalp AVM was embolised once with onyx and surgically removed. It returned quickly and more was removed again surgically the second time and a skin graft was taken from his thigh. Over the course of the last two years he has had 12 embolisations on the AVM above his eye. The last few I think had alcohol as well as onyx. While each time the lump around his eyebrow is looking smaller than it originally was I am concerned that it could be spreading, Is that possible?? The right side of his face his noticeably bigger than the left. I was advised this was due to the AVM. Prior to his last embolisation in March this year he started complaining about ear pain. GP ruled out ear infection and after his angiogram his specialist, Dr David Lorde at Westmead childrens hospital, said that the AVM was causing pressure near his ear.
He is due for his next embolisation and angiogram this coming Monday 18th Sept.
He has missed a great deal of school and is sometimes finding it hard to fit in at school because he can’t play many of the school sports the boys play. The last two treatments have taken him a long time to recover from. Last year he had to be admitted to get his pain under control as his specialist had been away on medical leave for 6months and he had a big break in between treatments . He stayed in hospital for a week prior to his procedure.
I wish I had some idea about what lies ahead. ( I didn’t think we would still be at this stage by now)
What other questions can I ask his interventional radiologist that might give me some more clarity?
I don’t know the size or what stage his AVM is? Would this information give me a better understanding of where we are at? Any advice or guidance as to what I should be asking would be greatly appreciated. I feel like I’m only just starting to get my head around how complicated these AVMs are. Thx


#2

After 3 embolizations last done on Monday all I can say is wow. I now have asphasia hoping it is temporary. You are not alone .


#3

Hollie,

My experience of being in this community for a year is that facial AVMs are rotters to get under control.

I saw a BBC news article when I posted the original link below and found a YouTube video by a young girl named Nikki. She has quite an extensive facial AVM which might paint a bit of a picture of how your son’s AVM might develop. She discusses the treatments she has had. Her video is very difficult viewing for someone in your position, so do approach it knowing it is likely to show you difficult things but I hope it is helpful for me to share it.

You may be as well to communicate with the Facial AVM community here, as what you describe sounds very much like Nikki’s case.

I hope this is helpful.

Love,

Richard


#4

Thx Kell, will keep you posted after next embolization. Fingers crossed I wll know more :blush:


#5

What an amazing girl
The video puts it in perspective doesn’t it
When u think u have it tough there is always someone battling something bigger and facing it more positively than most adults - now that is truly brave and inspiring thx


#6

I think so, too. I was worried about sharing the video with you but she is so positive about life, it is inspiring. Glad it was worth sharing with you.