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AVM Survivors Network

Left or right side weakness

Does anyone have good and bad days with this?
Couple of days in a row better control, then very weak again?

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I have it in my right leg. It’s usually not noticeable to someone if they don’t know, but like I’ve told my doctors - there are times where I can walk without thinking about it - and there are times where it takes a lot of concentration to make that leg do what it is supposed to.

It’s a very “on and off” type of thing and it seems to go with my overall pain levels, my levels of visual activity (have I been in my nice quiet house while the kids are at school or am I at the grocery store?)

I have nerve damage on the left side of my tongue, vocal cords, and all of that stuff down to the diaphragm on the left is significantly impaired. The doc basically says I’m operating on 1 1/2 lungs. There are many times where it’s a good day/ bad day but in reality, for me it’s more like good morning/bad afternoon and such.

Can I tell what’s going to cause it to be a good day or a bad day? Not all of the time - but I’m learning. Your mileage may vary, but I’ve found that sleep can break the bad day cycle and it is not uncommon for me to take a nap at 9:00 in the morning. If I have a loud day - like my son’s graduation next week - I know that I need to play it calm the next day. Or if I know I’m going to have something loud that night, taking some time in the afternoon to write (it’s digital but it’s still by hand), maybe sleep and build up a sense of calm inside so that it won’t be as bad.

My 18 year old graduates from high school next week - for his senior project he wrote on using mindfulness and medidtation to impact your physical health. I have not had enough time to practice it well, but I thought of many people who could benefit from it (:raised_hand:). me raising my hand

So, Tempest, I guess a simple way of saying it would be “yes.”

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Hi,
TJ127(?)
Thank you!
I had a neurology appointment today. I asked about this specifically. Why pretty good day with weakness and then, bam, a bad day… he reiterated the information about the electrical activity going on (which is more than a non-AVM person). He said it depended on which impulse was irritated which calmed down later on.
I have a lot of different seizures( (my AVM is cerebral, left lobe and large). There are a variety of variables to my seizures as well.
Dehydration, lack of sleep …
I love my two naps that I try to get. If i dont get enough, i can definitely feel it.

Hi! I personally notice that when I am tired my left side does not cooperate with what I try to do. It is difficult to tie my shoes, trying to hold something with my left hand will more than likely end up on the floor or ground I wear a AFO on my left foot and when I am tired it is difficult to get my foot and brace in my shoe. So for me it comes down to getting the amount of sleep so I can do these things ,

I currently have numbness on my left side of my face. It use to come and go lasting up to 30 minutes. This episode is going on 5 days now. I think I have probably had a mini stroke, but because my neurosurgeon has said there is nothing they can do for me and I am on Social Security, I am not going to go to the doctors to be told once again they can not help me. Sorry for posting my frustration.

I also have been falling asleep a lot, even while on the computer. I will wake up with mouse in hand. Sometimes it will be a short nap and sometimes a couple of hours.

Hey Tempest! I second, or third, the other comments on this thread. For me, my whole left side was paralyzed. After intense rehab at UAB, I pretty much got it back but have much less feeling I’m that side. I joke with my wife and kids that if there is something that falls in a fire, I’ll just reach in with my left hand and grab it, but I wouldn’t really.

I noticed you mentioned your neurologist appointment, have you tried seeing a neurophysicoligist? I mention that only because I think they deal with these sorts of issues. Regardless, I hope you continue to improve and wish you the best! Blessings!

Hey Random,

Reading your post about numbness reminded me of how mad my daughter gets every time we get flu shots. I never feel a thing. No sting when the needle goes in, no ache for days afterward.

The small benefit to having lost the feeling on your left arm.

TJ

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