Patient Comments: Arteriovenous Malformation - Health Consequences


Do you know someone who had a health consequence related to an arteriovenous malformation? Please share your story. Submit Your Comment

Comment from: mum of 2, 0-2 Female (Caregiver) Published: January 27

My daughter started having seizures at 3 months old and 1 month later was diagnosed with an arteriovenous malformation (AVM) in the brain. After several MRI and angiograms it was found that the AVM had disappeared. She is now 4 and has had physical problems, low tone in total and hypomobility. I am not sure if this is linked, but she has speech problems and is getting tested for autism. It has been a long hard journey but she is most definitely a little fighter!

Comment from: drexes, 25-34 Male (Patient) Published: September 12

I was born with an arteriovenous malformation (AVM) in the left leg. I went through 24 years of embolization treatments with ethanol. I finally had the leg amputated in 2007 to get rid of it, because I needed major ankle surgery due to muscular and skeletal deformation cause by walking on the side of my foot due to the pain. When I went in for a second opinion they said the surgery would fix the ankle but the underlying AVM would cause deformations about every 5 to 7 years and surgery would be needed every time. At the moment I’m currently experiencing a lot of the symptoms listed for an AVM in the head. I’ve seen a neurologist for the issues I thought was related to something else. They refused to do a contrast MRI/MRA, but the MRI/MRA they did showed a lesion. They said all my symptoms were unrelated to a neurological issue and basically said they wouldn’t be doing any more testing till something else went wrong. The problem I’m having now is all the symptoms listed on the first page are what ive experienced since January and they’re all neurological symptoms.

Comment from: Ellen caregiver, 65-74 Female (Caregiver) Published: July 07

I am the wife of one with arteriovenous malformation (AVM) with many other health issues. He has a large AVM and elected no surgery because of bad lungs. He is having more seizures now after over 10 years after we found out following a bad grand mal seizure. He is falling too much and now has a hip replacement. Life is getting tough for him with bad COPD (chronic obstructive pulmonary disease) and seizure now affecting his memory. I am sure his 2 aneurysms in the AVM that are slowly leaking. Very hard to watch someone go through so much pain and suffering.

Comment from: 65-74 Female (Patient) Published: June 02

I had embolization with glue for arteriovenous malformation. My health issues are: uncontrollable bowels and bladder problems, muscle tremors in legs, tingling in one arm and leg with a lot of weakness, and cannot walk without walker. I am thankful to be alive.

Comment from: Kygger, 25-34 Male (Patient) Published: December 05

I recently found out that I have an arteriovenous malformation (AVM) in my right lung. I originally went to the hospital to find out why I was in so much pain. I thought I had appendicitis but because I'm FTM (female to male transgender) the doctor had to rule out other issues I could have been having, such as cysts, kidney stones, intestinal blockage, etc. They gave me a CT scan which concluded I had two small kidney stones. The CT scan also uncovered the AVM in my lung, a small cyst under my skin that I already knew about, and a degenerative disc in my back. So far I have not noticed anything odd but then again I didn't know I had it to begin with.

Comment from: foot AVM, 19-24 Male (Caregiver) Published: January 30

The patient had small lesion on forehead and was removed when he was a child. He had a foot with the middle toe that grew grossly abnormally fat. He was seen by a podiatrist who discovered arteriovenous malformation with an MRI and stated it might also be in his foot and heel. Patient does have heart valve murmurs in all four valves.


Arteriovenous Malformation See brain scan pictures of Alzheimer's and types of dementia See Images