I’m doing alright! 11th grade is a struggle for me, balancing all the appointments with school and homework is difficult. Still, I know I’ve got hope and as long as I don’t think about the AVM, surgery, or anything else brain related, I’ll be in relatively good shape for the day
Hi Brody, I like your attitude. You’re one tough boy! (I think you’re a boy.) I was 14 when my AVM “exploded”. Later that year my brother found me with my head in a trash can from a seizure. That’s what he said anyway. I don’t know how I could’ve got my head in the trash can but it was definitely the first of many, many, many seizures.
The reason I am writing you is because we are about the same age for starting this painful journey. I want to echo what Merl said-- take it slow.
When I had my 2 craniotomies I was in the hospital for so long I got pudgy and weak but I wanted to look good for the ladies. As soon as the doctors let me I got my parents to buy me a weight set and I started working out. It gave me a goal and something healthy to do and I ended up being co-captain of the wrestling team. (I wasn’t allowed to play football.)
Don’t worry, trust me, something positive will come from your ordeal/pain. Best wishes and full respect, Greg
I was 14 when my AVM exploded as well! I even celebrated my 15th birthday in the hospital. (Not worth the medical bills, very expensive venue)
Thank you for the kind words of encouragement,
(P.S. yes, I am a 16 year old boy)
I’m not sure what grade my AVM was. I’m sure if I asked my neurologist he would be able to tell me.
The black area is empty space, caused by the AVM rupturing and compressing my brain tissue.
I’m not sure the size of it, but it is in the left parietal part of my brain, near the center and away from the surface. So they’d need to dig around deep in my brain
I’ve been having killer headaches for the past couple days when I get my heart rate up. It’s been scaring me, lol
The only thing to do when stuff freaks you out is to go get checked out. It’s a difficult balance between being checked and crying “wolf!” but if ever you get acute symptoms that worry you, ER is the place to be. And if you’ve got less acute symptoms, I’d be inclined to have a conversation with the doctor.
Hi y’all, I had a mini-stroke a couple nights ago. I woke up in a cold sweat and couldn’t move my right side, i couldn’t move my tongue either. I don’t know what to do about it. I can function normally now, but in that moment I was having a stroke, I couldn’t move or feel my right side. Anyone else have this happen?
Go and see your primary as a minimum. It could be a seizure rather than a stroke but go and get checked out. Ideally if you or someone with you is able to call an ambulance if it happens in future, get an ambulance or get to the ER while it is going on.
It’s a slippery slope - I know you don’t want to go, but it’s could be crucial to have it checked out.
After my embolization I was a regular in the Barrow ER. If it is not wasn’t one thing, it was another - from numbness to slurred speech. They checked me out every time & shot me back out. They related it all to CNS damage & my brain still adjusting to the new blood flow.
LOOL no. I can’t have the surgery 'til mid-June unless it is a complete and utter emergency. We haven’t even scheduled it yet so that’s sweet. I’ll bug my mom about it but really we’re lucky to get a June date.
If it’s any consolation, I discovered my AVM in April 2016, got to see an ENT doctor in the August (who diagnosed an AVM). Took until Nov to be referred to neurosurgery and then I had to wait until April 2017 for my surgery.
So I know it isn’t an easy time to wait. I’d say keep busy with something, ideally something that keeps your mind busy: I set myself an electronics project to do (I’d never successfully done anything electronic, at least not when I previously tried – I probably haven’t tried since I was a teenager). The distraction helped a bit and I managed to get my project to work, too, so I was very happy about that!
Hang in there. If anything untoward goes on – e.g. another seizure – tell people around you they should get an ambulance or get you to the ER. So tell them before it happens, obvs.
Sorry yours happened during spring break. Mine happened just 2 weeks before Christmas in 2003. Not a good way to spend Christmas, or spring break. Mine was undiagnosed until it ruptured. My recovery took years, and I never fully recovered. I still have some side effects from it, but I manage it. I have been living with the side effects for many years and now they are just part of me. They don’t really bother me anymore. I found ways of coping. I had to adjust to my new way of life, it wasn’t easy, but I am a happy person now. I got my bachelor’s degree in 2022 and going back to work after 20 years. No matter what obstacles were there, I beat them all.
And yes, angiograms do suck.
I have a surgery date now!! July 25th. Not great. But at least it’s during the summer and not during the school year.
The wait is not what you’d like but that it gives you good time to get better is overall a much better plan than to potentially miss a chunk of school or college. It sounds pretty good to me.
How are you doing about ignoring it meanwhile? I know it’s not easy.
Well I’ve had a few other mini-strokes (for lack of a better term) so that’s not awesome. But on the side of not thinking about it, I’be been trying to distract myself with music and biking. I’m alright.
The distraction technique sounds good. Just stay on their case if you have further trouble. So long as they understand how you are, you should get seen appropriately.
I think you’re doing amazingly.
Update! A late update, but better late than never.
I had my craniotomy on September 6th of 2023 to seal up/cauterize the blood vessels that were trying to grow the AVM back post rupture. I stayed in the hospital for about 4 days and stayed home from school until about… October 17th? Well, now I have a big ole scar on my head, about 5 inches long, and have a few titanium screws in my head! Hopefully only MRI’s from now on, no more angiograms!! Yippee!!
One drawback is that my head has been P O U N D I N G ever since the surgery, but hey. Beggars can’t be choosers
It’s good to hear from you. I hope the big headache goes away and you only get to play with the MRI machine occasionally.
Do let us know how you are getting on from time to time because if it’s rough it’s worth talking out loud about it and if it is fantastically smooth, we wanna know that part!
You sound in a good place so that is fantastic!