It’s hard to believe that just 1 month ago someone opened up my son’s skull and took out a handball-sized chunk. And I certainly didn’t believe my report at this time could be so positive. But I remember, as a parent, hanging onto every hope when reading everyone’s stories here, so I know I need to provide hope for others who will follow.
Mick (my 15-yo son) still sleeps a lot, but his healing is nothing short of remarkable. Other than getting tired more easily, there remain absolutely no physical impairments except for some vision loss. He hopped and skipped and balanced and followed every instruction to the letter and the PT ended with one visit.
And the vision loss, which was heart-breaking to me as a parent, I confess, is also getting better as he heals. Since his AVM was left occipital, I want to expound on that here. What started as complete loss of right field of vision post surgery is now down to just a narrow strip of of blindness, a little right of center. And we have no reason to believe this won’t continue to improve. But even now he can easily compensate so it has very little effect on his daily living. His 2nd OT appointment today ended with recommendation to practice reading to build speed back up, but no new appointment. Just a “call us if you need to.”
(In the most important terms for a 15-year-old: he is back to on his video game abilities, and the occupational therapist assured him there’s no concern about getting his drivers license next year! )
Oh, and NO migraines, which is what caused us to discover the AVM to begin with. He has to continue taking Keppra (anti-seizure) till the 6-month mark, but he’s down to 2 Tylenol every 8 hours. The only pain now is really from nerves healing. And he reports some crazy bursts of rainbow-colored flashes in his blind spot which makes us hope his brain is trying to reroute signals there.
Really, a wonderful report to share. And I know that he’s been in the prayers of some here and I can’t thank you enough. @mike_az_21 said at one point that knowledge about AVMs and medical advancements make this such a better time for treatment. I’m sure that’s true, and we owe our son’s life to the skill of those who treated him.
But I’m also sure I owe my own sanity to the stories and support I’ve found in this group. Thank you all!