Patient Comments: Arteriovenous Malformation - Symptoms

If you or someone you know has an arteriovenous malformation, what were the symptoms? How was it discovered?

Comment from: Al DK, 35-44 Male (Patient) Published: September 15

I could not talk like I used to do when I went to work. It got worse later. Blood pressure was high. I went to the hospital for CT, then MRI and was diagnosed with arteriovenous malformation.

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Comment from: Mary, 45-54 Male (Caregiver) Published: July 28

My husband was diagnosed 2 years ago with an arteriovenous malformation (AVM). I began to notice subtle changes in his personality and he went from somebody who would go power walking every evening to suddenly only being able to walk really slowly. I brought him to the general physician who sent him straight to the Accident and Emergency department and he was diagnosed within a couple of hours as having an AVM. He underwent embolization on same and during this procedure had a massive hemorrhage. They then removed the AVM under emergency surgery. He spent many months in hospital and rehabilitation but still has many neurological deficits which I believe were caused by the AVM itself.

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Comment from: Sara, 55-64 Female (Patient) Published: July 21

I fell and when I tried to sit up I could not and kept falling over. I did get myself up and then started laughing. It did not take my husband long to know I needed to go to emergency room (ER) and the ER doctor said he thought I was having a stroke. He ordered CT and then MRI which showed arteriovenous malformation (AVM) and I was told this was nothing because it was venous and the symptom I had was in the back of my brain. This AVM was in the right temple. This happened in 2013, then in 2014 I went down again and I am still having trouble with my balance.

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Comment from: sue, 55-64 Female (Patient) Published: May 21

An arteriovenous malformation (AVM) in the right frontal lobe was found after I passed out and when I tried to sit up the room started to spin and I started laughing. The emergency room doctor felt I had a stroke in the back of my brain as I am unable to maintain my balance, instead they found the AVM and I have since passed out and have balance issue. No one feels it is caused by the AVM; for years I had migraines.

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Comment from: CathyFair, 55-64 Female (Patient) Published: April 03

I had a headache my whole life. In 1995 I felt the most violent intense pain of my life, it felt like someone came up behind me and hit me with a two-by-four. The pain took me to the ground. We were 2 hours from home, and I had the most painful drive of my life. I could not talk, and every single movement increased my pain. I insisted my husband take me home, took pain pills and went to bed! I thought it was a migraine which I had never experienced and knew that they were severe. It took 3 months, and 5 MRIs, numerous drugs, doctors, and frustration trying to get diagnosed! Finally, one neurologist had the dye injected into my groin, and he saw the arteriovenous malformation and where my bleed was! He performed surgery to remove tightly twisted blood vessels, size of my thumb, in my right ventricle, very center of the brain. The surgery left me with equilibrium/balance issues, and my entire left side of my body is wracked with 24/7, chronic severe nerve pain, that I cannot be 1 minute without thinking about the pain; it's exhausting, and I cannot sleep. I also have fibromyalgia and chronic fatigue syndrome. I am on medical leave from my job right now, due to the severity since 12/5/14.

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Comment from: navigator, 65-74 Male (Patient) Published: September 13

At age of 20 in the Air Force I was found to have an arteriovenous malformation (AVM). I went in for surgery on the left side of my brain. I suffered headaches for years afterwards. Approximately 18 years ago pain in my head kept me in bed for a year, I went to several clinics with no relief, just slowly got back on my feet again. Military had given me 10 percent disability.

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Arteriovenous Malformation - Health Consequences Question: Do you know someone who had a health consequence related to an arteriovenous malformation? Please share your story.
Arteriovenous Malformation - Vascular Lesions Question: Please describe the events that led to a diagnosis of vascular lesions due to an arteriovenous malformation.
Arteriovenous Malformation - Treatment Question: What treatment did you have for your arteriovenous malformation?

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