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?
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.
In a simple answer NO. But you do learn to deal with it so it is not as conscious all the time. You will always get that moment when a new tingle a new pain or in our case last week a swelling of teh finger makes you think here we go, but it becomes easier to deal with.
Our Daughter leads us. She was 8 when she was first diagnosed. Luckily we have not had a bleed but many very hard episodes of stroke like symptoms and extreme pain. She knows when things are progressing and she can help us manage it. Not sure if that helps…
@Aprilbaby I am so glad you have good news about your daughter and I can only tell you about my personal experience that I am way more sensitive to weather changes esp high pressure changes since my avm and get bad headaches with weather changes. This may be happening to your daughter. Glass Bottled Coke seems to help- its made with real sugar instead of corn syrup not sure if that is why it works better. I still have 2 veins open on mine that they cant reach . My migraines also got worse post avm and I get botox shots for them and I am on topamax as a preventative.
I can’t really say because we’ve had 8 years with my son’s AVM and am not at the end of the road yet. I don’t imagine it will ever stop for me even if we get rid of it but it’s amazing what can become normal. Every now and then there are those heart stop moments but mostly we just morph into emergency mode quite easily because it’s just a regular part of our life.
