Just diagnosed and symptoms have me worried

I was just diagnosed with 2 AVM’s. I woke up on a Saturday with what I thought was the worst migraine headache of my life. The next day my vision went completely blurry and my eyes became very sensitive to light. I called my internist immediately on Monday morning thinking it was just a bad migraine. He had me come right in and gave me a shot of Toradol for the headache. He was concerned about the vision so he sent me right over to see an eye doctor who was seeing a severe sensitivity to light but couldn’t tell what was causing it or the blurriness. That afternoon, my internist sent me for blood work and an MRI. The next morning the doctor called to tell me that the MRI showed 2 AVM’s, one located in the right frontal lobe and one located in the back right. He immediately called the neurosurgeon to schedule an appointment for me and in the meantime sent me over for a MRA. 2 days later and my symptoms seemed to be getting worse even though I was now on heavy painkillers. My headache was excruciating and I started hearing a funny sound in my ears so doctor sent me to the hospital where they performed a CT scan and a Lumbar Puncture. Both tests showed no signs of a bleed so I was released on a new cocktail of pain medications. I am now waiting to see the neurosurgeon and have an appointment later this week. I am scared out of my mind and I am in pain, even with the pain medication. My vision is still very blurry and my headache is unrelenting. The noise in my ears comes and goes. I am really worried and scared and waiting for this neuro appointment is killing me. I am curious if anyone else experienced similar symptoms with an AVM?

Hi, Nicole - How did your appointment go? I've heard many people report the insane headache, vision problems, and ears ringing sensations. It is good that the hospital saw no sign of a bleed although the "lumbar puncture" sounds highly unpleasant. Mine bled too fast for me to feel anything than a bad headache. It wasn't excruciating, it was just like, "uh oh." Thankfully I passed out soon after so I didn't feel anything.

Don't be scared. Lots of people on here have scheduled surgeries etc., and recovered, too! I know - easy to say...the waiting must be awful, but hang in there!


The noise in your ears is probably a bruit…common with AVMs. http://www.avmsurvivors.org/main/search/search?q=Bruit