I posted this in the general discussion section. I haven't heard anything yet so I thought I'd try this place. I think I fit in nicely here!
I Just got news last week that I have a 2.3cm AVM on my left temporalis muscle. I can't find very much information on AVMs that aren't located in the brain. I'm looking forward to seeing if there are others like me out there.
This is my second AVM. My first one was 4cm and located in my neck. It would blow up blue like a balloon when I would get excited or when I'd work out and my head was lower than my heart. That was removed successfully in 2002. Back then I couldn't really find any information on AVMs and frankly I forgot about it.
I have an appointment with an AVM specialist at UCSD's Neurosurgery department later this month. BUT I have sooo many questions before then.
I think I noticed the "lump" on my temple 6-7 years ago. Of course whatever doctors I saw told me it couldn't be another AVM... Every so often maybe 1-3 times a year or less it would enlarge and harden like there was a little rock on my temple. It would hang out for a week to a month and then dissipate. What was it doing and why did it do that?
Beginning of March this year, I had a terrible headache for three days. It was so bad I threw up (which I have never done before) and then a few days later the lump was there again, bigger and harder then ever before. It stayed for over two weeks. Sleeping was really difficult because the lump hurt worse at night. Why did it do that?
I'm 39 years old and I have a 4 year old daughter and a 17 month old son. I'm assuming that since my AVM isn't in my brain that my AVM isn't life threatening. Again this is my assumption. I don't know the risks or the symptoms or treatment for extracranial AVM! I honestly have a million questions and would love some insight!
So if someone can help me shed some light on what I'm experiencing that would be super awesome.
Thank you!