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AVM Survivors Network

AVM 8 year old daughter

#1

Hi! My 8 year old daughter survived an AVM rupture summer 2018. She had a successful embolization with glue. We have had had several MRI and MRA this year to keep on top of it and find any new ones that may occur.

We just last week had a great follow up with her neurosurgeon. Latest scans totally clean, next scans in August, cerebral angio can be scheduled for the fall. As good as it can be.

Then, last night, she started complaining of a headache. Immediately, I start asking her the list of questions I ask when she has a headache since last summer. She went to bed with a headache, and I’ve been a wreck waiting for her to wake up. She’s finally awake and the headache is less, and in a different spot in her head, which I suppose should make me feel better, but I’m a wreck anyway. Even though our great follow up was 4 days ago.

Does this waiting for the other shoe to drop ever go away? :confused:

#2

I can only imagine having a child with an AVM, I was “fortunate” that it was me and not one of my children. My son was born with a disease call Hirschsprung Disease and had 30 cm of bowel removed at 6 1/2 months and had a mutlitude of issues until about 4 that were related. I know the stress to some degree of having a sick child, although certainly not the same. He is now a rambunctious 13 year old, hockey playing fool of a teenager! I guess I’m saying he is your typical 13 year old. Whenever he has anything up with his abdomen he gets the second degree about bodily functions and if everything plumbing wise is working. You can imagine how much a 13 year old enjoys those type of questions!

It sounds like all is going well so far for you and your daughter and you’re doing everything right. The fears faded for us as time passed, but I imagine like us with his tummy, every time your daughter mentions her head it will be full interrogation mode, we can’t not do it, we love our kids too much. I guess thats what makes us who we are. Stay strong and think that every scan that positively passes the less likely further related complications are. Take Care, John.

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#3

My son’s AVM ruptured when he was 18. He recovered completely. We havé prioritised the embolisation treatment even though his AVM was large. He was operated in Paris , specialised department for embolisation . He has had 2 embolisations. He has experienced some headaches but they would go away. After last angiogram they found tiny vein that was left , so he is going ahead with number 3 embolisation in 2 weeks. After that he should be completely clear from his AVM and put everything behind.

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