Hello all I had my avm embolized going on 4 years ago , I’m now seeing neurologist because I am having hand and foot pain actually body pain , I also had radiation.
Also my fave has been twitching here and there . So I’m not sure what is going on. I’m supposed to have a nerve test soon .
Anyone have any of these symptoms after having any of this done .
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The left side of my face started twitching big time after my AVM ruptured in 2009. The twitching (and other symptoms) got worse during my two radiation necrosis and brain swelling episodes post gamma knife in 2009. My AVM was 4/5 on the Spetzler Martin scale and was in my left parietal, motor cortex, and occipital lobes. At first everyone thought it was partial focal seizures but two epilepsy specialists in Seattle both said they couldn’t find clear evidence of seizure activity so they reclassified them as facial fasciculations. Which was good since I’m allergic to or lack the liver enzymes to properly metabolize most seizure medications. The fasciculations generally get a lot worse for me when I’m neurofatigued. My friends, family, and my medical alert service dog can tell that I need to rest or switch activities when my left eye starts drooping and the left side of my face starts twitching. I think my dogs also alert based on how I’m moving and possibly scent changes, but they usually stare at my twitching face super intently before alerting and insisting on dragging me away to someplace quiet where I can sit down. If I push the neurofatigue too far I pass out but my dogs usually alert WAY before things get that far. So, you are not alone. Hope this was helpful. I wish you the best of luck in your journey.
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I’m right over the 4 year mark post Onyx embolization
I hemorrhaged back in July of 2020, that’s when my AVM was found & then 100% occluded on first treatment
Surprisingly enough, I never thought of this much & never mentioned it on here or to any of my MD’s - but, ever since all of this happened I have been getting random twitches all over my upper body. It seems quite random - some on my face, under my eye, some in my shoulders & arms
It’s not too bad for me, in comparison to anything else. But, I do get them & try to pay attention to em’
That’s right where I am the 4 year mark . My avm did not It bleed was found by mistake . And it was embolized in 2021.the twitches have subsided some . I am seeing a neurologist for the hand and foot pain.
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I don’t get any other specific unmanageable symptoms(so far)
This year has been my most ER free year. I’ve been back for stroke like symptoms multiple times in the years prior
No other pains at the moment, but everything since 2020 has been a “new normal” for me
Hope you’re ok
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Hello again wel twitches are still there. Mostly on lower lip and eye area .
I am going to tell my neurologist about then Wednesday. It could be stress on my end and lack of sleep . And I am in aniexty meds this avm made me very anxious awhile back . So I’m
Not sure but I do worry about them . But other than that I have no migraines once in a awhile il
Get one and nothing else
Saying it would be related to my avm . I do have to have an angiogram in January so fingers crossed everything ia good .
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Hey, @Chloe
The nervousness is pretty normal, I’d say. I didn’t have to wait as long as you’re having to wait for the gamma knife to do its thing. However, I had to wait several months from diagnosis to getting treatment: it took me a whole year from the point that I’d done a bit of a self-diagnosis courtesy of Dr Google to actually getting to the front of the surgery queue.
For perhaps the second half of that wait, I decided one of the things I could do for myself was to get a medical wristband made up with my name, hospital ID, my medical condition and an instruction to passers by that “In case of stroke, call Emergency!” and my wife’s mobile phone number. I have to say that having that band, and talking to my work colleagues about my situation meant that I felt I’d made some positive steps towards helping myself if I did get into trouble and that helped me a little.
I think the other way to think about it is that every day you’re one step closer to being better 
Hang in there. I think you’re doing great!
Very best wishes,
Richard