Hi. I’m mike.
55 years old. Had a first experience with AVM last month. I don’t know all the fancy words here yet so I will just be simple.
I passed out in the garage January 31st 2022. Wife helped me up and went into the bedroom. I noticed my left side was out and I had no control. Strangely it all came back to normal in 5 min. I guess that was the mini stroke. Went to ER and had the scan that came back with a head bleed front lobe over right eye. Went into the ICU for the night and had the catheter and glue procedure. It seemed to help and stopped the bleed and got released 2 days later. At home now having a headache. Bad headache that make you wrap your head in a heating pad for hours. Right eye seemed sore and very tired. I just stayed in bed for the next few weeks. No meds helped and hard to sleep. It was just constant headache all the time for three weeks. I do go to see the neurologist in a few weeks to follow up. Everything seem back to normal a month or so later. Most issues have past. But some still linger.
Numb in my armpits and shock when I reach out for something.
My hair fell out on the back of head on left side. Don’t know why but hope it grows back!!!
My main worries is WILL THIS HAPPEN AGAIN? I feel like I’m a ticking time bomb.
Thanks for reading my story, I feel for everyone here.
Hi. I’m mike.
Since you got embolized (catheter glue procedure) it is highly unlikely that it’ll happen again. BUT you have to wait until your angiograms to make sure it sticks and your avm doesn’t grow back with vengeance. Bless the lord you’re still with us. We’re all walking miracles here! Welcome aboard
Welcome to the forum! I’m sorry any of us are here but hopefully it’s a good supportive place to be for those of us in trouble.
Having some hair loss can be due to a few things: the trauma, a loss of circulation or to do with the X rays used during your procedure. With a bit of luck, it’s to do with the X rays and it will grow back. Several people here have lost their hair in a similar way.
Regarding your remaining difficulties, it definitely sounds like you need to continue to have a review with your doctor, usually a neurosurgeon or interventional radiologist rather than a neurologist, and at some point a repeat angiogram to take a look to see that everything the doc wanted to glue up he/she got glued. You may have had this repeat scan already.
I second @Teiry’s vote that so long as the doc glued up all of your AVM, you should be all sorted. My own experience is that everything feels very weird post op and it takes a looooong time to get back to feeling normal. In the meanwhile, if you have any sudden or severe onset of symptoms I wouldn’t wait for your review but go straight to the ER. That would include if you have a significant headache such as you describe.
Sometimes, there’s nothing significant going on but the best route through life at this less stable time (less stable because the doc has been in there fiddling around) is to get checked out more often than you would if you’d not had any trouble.
It’s a big shock to all of us but I think it gets a lot better over time and once you’ve been through one or two rescans to check that everything is as intended, hopefully you can settle back into normal life, the ticking stops.
Very best wishes,