I have had neck pain and burning between the shoulder blades and up the back of my head since this all began. When I met with the neurosurgeon for the first time he stated it could be caused by the AVM. I just had a follow up and met with the Physician Assistant (PA) and she stated that neck pain was not generally associated with the AVM. My AVM is in the right temporal lobe. I have had my first embollization and have three more to go. Confused.
These things are rare. Not everyone knows.
I also had neck pain from my temporal/cerebellum DAVF. It improved after my 1st embolization which targeted primary feeders off my internal carotid artery.
Thanks for the info. I am hoping mine gets better too.
I thought I would wait until all the procedures are done and see it it stills exist, then I can seek attention for that problem if it separate from this darn AVM. It is bearable at this point.
My bleed was in my cerebellum and I get a warm feeling at the back of my head. I usually take a shower and this makes it feel nice. When I mentioned the sensation to a neurologist, they had never come across it. It’s nearly a yr on and I still experience it though it may be getting less. Not sure. I don’t have any answers but at least you know your not alone.
Thanks for your encouragement. The thing is, I know what I feel and I do have different sensations around my head that were not there before, so I contribute it all to this AVM. I have a wonderful doctor and he doesn’t dismiss anything I say, but it is nice to have support from those who have been there a lot longer I have.
I have different sensations, too. Im still getting them checked out. My doc seems satisfied everything is as it should be but I want to qualify between: this is to be expected and is safe versus this is not to be expected and may indicate we didn’t get all of your AVM. So far, everything is “safe” but doesn’t feel “normal”.
When I get some answers, I’ll share. I had an MRI of my internal auditory meatus on both sides on Sunday to see if there is anything untoward going on in there. Need to wait for the doc to see and interpret the images… then let me know. Could ve a while yet.
We are all in this together