Earlier my son was whistling a tune in the shower, like he hasn’t got a care in the world, and it boggles MY brain to think 4 days ago someone opened his skull and cut out a handball-sized chunk. But here we are and we are celebrating!
Quick recap: 5cm grade 4 left occipital AVM, no bleed. 4 onyx embos over 4 months, followed by 6 hour resection. Post-op angiogram show zero residual AVM. Children’s Hospital in Pittsburgh by Dr Stephanie Greene. Embos and angios done by Dr Sandra Narayanan from UPMC Presby.
The giant zipper across the back of his head should come with its own trigger warnings, but except for the first day of recovery when my son still had fentanyl when needed, his pain has been managed with alternating acetaminophen and ibuprofen and he’s never reported pain level over 1 or 2. He’s got a low level headache and is just starting to get some nerve pains. The incision is sore to touch, of course. Still pretty raw. We can see a little more swelling right at the bone flap and it’s tender too. But he can lay back on pillows without pain.
While 100% better than discovery by bleed and all that might have been, he does seem to have lost his entire right field of vision in both eyes (right homonymous hemianopsia). He has regained a little clarity at the edge of that margin and as days 3-5 are peak swelling, some more may be regained. We certainly hoped for less loss but he’s navigating the early days of it well and we will hit the ground running with a good vision therapist.
Physically, he’s truly doing remarkably well. First 2 days post-op he felt (and looked) like he’d been hit by a truck. Brain muddled by adapting to the significant blood flow changes happening and also wearing off the anesthesia. Awake maybe 3-5 minutes between naps. But day 3 started a big turnaround and by today his equilibrium is back and stamina is impressive. He’s been awake for 10 hours, up and down as needed, walking himself to the bathroom, needed to sit in the shower but only needed help with shampoo around his incision. Has been playing with his Nintendo switch for 2 hours now, so none of the eye sensitivity some have had. He’s in bed, but not tired enough to sleep. Not at all what I expected this soon out!
Psychologically he knows to milk our sympathies as much as possible and has asked for a new pro controller for his Switch, knowing my husband and I would say yes to anything right now. Right on track for a 15-year-old.
Very Good to hear - I suppose, this is the day of age to deal with this stuff. The improvements they have made with embolization & micro surgery are nothing short of leaps & strides.
Wishing him the best! In recovery & life - and yes, a Pro Controller for the Nintendo Switch makes a world of a difference. My son loves it, I still use the JoyCons.
@JessPitt From our experience, you are in the best hands. 100%. She is very direct in her advice, confident and methodical and skilled. Of course, we don’t have experience with another to compare her to. But after 6 angios and 4 embolisations we count her as invaluable to the success of our son’s surgery. She went out of her way to show us images of how the procedures were progressing his treatment, even when she was presenting news we didn’t want to hear (like suggesting a lengthened vs. shortened treatment timeline for additional embos). Gave us plenty of time to ask and answered every question.
And importantly, each procedure was completed exactly as she described ahead of time. I’ve come to understand that precise placement of the onyx can be an art as much as science. She nailed her targets every time. The neurosurgeon said it was helpful to follow after her embos which showed a clear perimeter along any portions of the nidus she could reach.
I hope you feel very confident with her, because we really did. My prayers for your successful procedure and speedy recovery .
@HeatherC thank you so much for taking this time to type of this details reply! Wow, 6 angios and 4 embolizations … I can only imagine. I’m glad to hear your son is bouncing back so quickly after this most recent surgery - that’s one resilient kid you’ve got there. Your trust in Dr Narayana gives me great comfort. It’s consistent with my experience so far in describing the planned procedure. I just found this community this morning and am so glad I did!
@JessPitt when we first got Mick’s AVM diagnosis we were unmoored by all the unknowns. I spent hours reading any story in this community with even slight similarity. It helped immensely and I hope you find the same. I’m certainly happy to help you in any way I can.
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