8am Tuesday (6/15) begins the 8-10 hour surgery to remove my son’s AVM. What I know to be true:
5cm, grade IV means the neurosurgeon has her hands full
She’s really good at this (she said, “people don’t become neurosurgeons expecting surgery to be easy”)
It’s going to be messy because there’s at least 1 major feeder they’ve not been able to reach for embolism.
4 previous and successful embolizations have helped to dry it up somewhat and prevent the “bloodbath” a resection alone would have been
No previous bleed means the surgeon can focus on resection vs also contending with prior or emergent damage
He’s going to lose some of his right field of vision
I started this post as a self-help tool to focus on facts vs my fears and have reached the limit of my ability to compartmentalize. So now I’ll just ask for the kind thoughts and prayers of this group for my son’s upcoming surgery.
Your son will certainly be front and centre in my thoughts on Tuesday. It sure does sound like your neurosurgeon is down to earth and matter of fact, that is really good. You will be in my thoughts as well, take time for yourself, rest, and ensure personal health and well being. It is not selfish to take care of yourself in times like this, you need to ensure your self care to be the best for your son. Take Care, John.
Thinking about you and your son this evening. In the same way as Tom, I hope you all have a good day tomorrow and a very good week overall.
I’ve not done the “parent of…” role for this stuff so I don’t know what it’s like. I only know I told my wife for my one embolisation that she shouldn’t hang around the hospital all day worrying and having nothing constructive to do. I’ve no idea what is possible for you to do tomorrow to stay sane and safe but remember to look after yourself and others in your family, perhaps. You’re first, ok? Whatever you need to do to stay ok, go and do.
My gratitude to all for your support. I read responses a few times yesterday and it truly helped. The surgery was long but without complications or surprises. The neurosurgeon was confident that she’d removed all of it and this was confirmed by a midnight angiogram. No residual AVM. Hallelujah!
After fully exhaling for the first time in 6 months, my husband and I are ready to next tackle whatever comes in recovery. For now, our son is resting comfortably with the aid of every available medication plus the kitchen sink. A good start.
Wonderful news and the best possible outcome. I wish your son a full recovery, and wish you and your other half every opportunity to relax and recover from this traumatic experience.
Dear HMCaspar
This is good to hear. Thank you for keeping us informed.
I‘m truly happy that all went well so far. First of all I’m happy for your very brave son, and then for you, Mom and Dad, who overcame the huge challenge of this soul-tearing waiting. Well done and keep up the good spirits! You will get there, to this life without worrying about a possible AVM bleeding. I wish you all the best.
My mantra:
Everything will be okay in the end. If it‘s not okay, ii‘s not the end.
Maybe this saying helps you too when tackling the next steps of treatment.
(Your doctors‘ success makes me a bit less nervous for our son‘s surgery in August. Feels good.) Sitta /Conny
Sitta /Conny