Yes! 3 questions for you, please! My #1 heartbreak is the loss of vision. We have been assured there is %100 chance he will lose at least some of his right field of vision, if not all. Did you go through all the same emotions-so thankful that the loss would not be to motor or cognitive functions, but sad there would be lasting vision loss?
I am encouraged to hear your son is driving, etc. of course I’m reading everything about Homonymous hemianopsia, but I would love to know more about how your son adapted to it, etc.
My current struggle is knowing how to bring up the idea of advance directives, prior to his first procedure, in case bad things happen during surgery (next week is 1st of 3 embolizations, followed by removal, each procedure 2 weeks apart). Did you talk with your son about this?
Can you remember anything that really helped with his recovery? Helped with discomfort, aided in any way? I’m sure I can’t prepare for every possibility, but if I can have som obvious aids ready t9 go when we come home, I will!
Hi, yes, exactly the same spot, though mine did bleed. I was told I would lose some field of vision but I didn’t.
I was 34 when I had mine, so my brain was already developed, I suppose they would approach things differently with a younger still developing brain, and I would also expect a brilliant recovery.
I’m just going to post to see if I can invite the @ParentsAndCarers group to help answer your concerns about how to talk to your son about advance directives: what does he want to do if things go badly.
If there are any parents or carers out there who had the difficult conversations about these kind of choices, please read the thread and pitch in.
Ha! I like that. Yes, he did receive the juice. 2 embolizations and then gamma knife. It has taken a while, but I finally have my boy back! The recovery took time, but so worth it!
Children are resilient. He has gotten used to overcompensating (being careful) as far as lack of vision. I did not not even think to have a conversation should anything go wrong. They are clear to tell you the risks, but I tried to always stay positive & not scare him. Again, we were fortunate to have very good Dr.s, & I prayed a lot. They are not sick. He shouldn’t be in the hospital that long. Try to get him back to doing what he liked before this happened (safety considered, of course). My son likes video games with his friends. He got right back into it. TLC…
UPDATE: #1 of 3 Embolizations done
Last Tuesday, 2/9 was (my son) Mick’s 1st of 3 scheduled embolizations. The plan is to tackle some of the largest feeders to the AVM prior to its removal surgery. #1 embolized a couple of the smaller, more superficial feeders. By all accounts this was successful, though the AVM recruited a new feeder while they were closing up the others. Two more embolizations to go, each scheduled about 2 weeks apart, so the next is Monday, 2/22.
Mick came through the procedure just fine, though I’m sure if he were writing this he’d have plenty of complaints, mostly about how long they kept tubes and lines going in to him before he was allowed to move around normally.
Unfortunately, the migraines which he used to get 1-2 times per month are now a daily occurrence, usually right when he wakes up. We don’t know if this is because his brain is adjusting to the changed blood flow or ?? By lunchtime he’s generally able to get online and get to his schoolwork. We’re taking all a day at a time, but wonder if the next 2 embolizations will continue or even worsen this trend as they tackle some of the more major feeders.
I can’t say enough good about the doctors, PICU nurses and entire care team at Children’s Hospital in Pittsburgh!
I don’t know what’s going on with your son but I tend to think that doing partial embolizations is always going to induce weird effects as it changes the blood flow and is bound to increase pressure in places where it has been unusual. So I think the thing to do is to expect weird stuff while this is all going on. I had decent headaches after my embolization for several weeks post op.
For all that embolization seems like a really low impact intervention, it still makes you feel quite operated-on: the pressures all change, you’ve got contrast material bunging up your brain like a hangover and you’ve got the solvent from the Onyx or PHIL embolic material that you breathe out. I’m quite sure he’ll just about feel past the worst by the time he goes in for the next one, so a tough month or two overall
Having embolizations prior to surgery is a good idea, since it reduces the likelihood of a stroke in surgery (so far as I understand it). It’s hard going but hopefully a really good plan.
I would love to say that we’ve spoken to our daughter about what could happened if things go wrong, but honestly we haven’t. I mean, we’ve touched on it, but aside from her initial brain surgery when she was a baby, her condition over the past 7 years has been untreatable.
About 2 months ago we met with a dr who said now that she’s older she might be a candidate for radiosurgery , and he discussed some of the risks with us/ her, but until we finish consulting with other drs, and decide what we’re doing there’s no point in scaring her any more than she currently is.
She’s 13 years old. She’s in multiple therapies a week just to be able to maintain her daily functioning. She sees what happens when she’s not actively working. I drip information so she has bits and pieces, but honestly, I don’t think she can handle more.
As religious people I do discuss on a global level- with all my children -how we come to this world with a purpose and some of us complete our mission sooner than others. It’s sad for the people who are left behind, but for the person who has passed his soul is at ease.
As a parent I hope never to know what it means to lose my child, but that is a reality that I need to face.
My prayers are with you in your ongoing journey through this. We have been quite fortunate here that ongoing symptoms were manageable enough we didn’t even suspect something so serious was causing them. And we are also lucky that his AVM is operable, though not without risk, of course.
The possibility of losing my child is a reality my own brain can only process in bite-sized pieces. The emotions of it come and go in waves. Self-preservation of my sanity, I’m sure.
