I just came across this old post and had to revive it (I couldn’t figure out how to reply to it). My unruptured brain AVM is in my right frontal lobe in the area of the premotor cortex for my left leg. Right after my diagnosis I started experiencing a ghost-like feeling of my whole left leg like the feeling had faded compared to the rest of my body. I thought it must be psychosomatic since the AVM has been there since birth and I had only ever had a bit of an odd feeling in the back of my calf occasionally. Why else would I suddenly get a symptom just because I know about it? After awhile the ghostliness started going away and my leg felt normal but last night I was very upset over something and the ghostliness came back. I now realize that right after my AVM diagnosis I was also quite upset.
Does anyone know why something like this would happen physiologically? Anyone experiencing similar? I have an appointment with my neurosurgeon soon and I’ll ask him, but I’d like to hear what you all think too. Thanks to @grammy623 for the original post. Grammy, if you see this post, I’d like to know if you’re still having this issue. Thanks.
I am sorry I missed this post! I can only imagine that when you are very upset/emotional, your blood pressure increases, potentially raising flow in your AVM which then affects surrounding brain causing temporary numbness in your left leg.
For me, I recognised when I was emotional, stressed, or been very active, had high/low blood sugar or caffiene, I would get visual episodes triggered. This makes sense since my AVM is located in my left occipital lobe (visual centre of the brain). The neuro-opthalmologist also suspected these visual episodes I was experiencing (only effecting my right hand vision) could be localised occipital seizures (rather than grand mal seizures).
Possibly being upset/emotional might be causing higher blood pressure in your AVM which in turn could also be triggering localised seizures in your right frontal lobe? It could be a good idea to seek out advise from a neurologist (aswell as your neurosurgeon) to see if this or something else is the cause? Could have an EEG scan to check the electrical activity in your frontal lobe too. If this is epilepsy then the neurologist could advise on medications/what the next step to do is. I am no medic but these are the only explanations I can think of - definently important to get the specialists to look into anyway.
Have you heard back from your neuro surgeon yet? Hoping you get some answers.
Hope you don’t mind, I have moved your post from General discussions to symptoms and trearment, hoping to get more responses from others.
Thank you so much for your response. I had not thought about possible seizures or higher blood pressure which does make sense.
I had forgotten to put this on my list of questions for the neurosurgeon (I had so many others) and forgot to ask. I have an fMRI coming up though. That may give some more info and I can ask then.
No problem with moving the post and thank you for the frontal lobe group link. I didn’t realize there were subsections.
Hmm have you been assigned a specialist nurse to help with any concerns you have? or been given the number for your neurosurgeon’s Secretary? Would be good to ask them about this symptom so they could follow it up for you. I contact my specialist nurse all the time about any concerns that pop up, to ensure I dont forget and also for peace of mind
Also could be useful to ask your nurse/consultant Secretary for a referral to a neurologist too so you save time on waiting for an appointment!
Awesome to see you’ve become a member of the frontal lobe group hopefully joining will encourage more people to join too!
Also glad to hear you’ve got an fMRI coming up, great to hear your neurosurgeons keeping a close eye on things
hopefully joining will encourage more people to join too!