Patient Comments: Arteriovenous Malformation - Health Consequences

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

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.

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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.

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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.

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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.

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Patient Comments

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Arteriovenous Malformation - Symptoms Question: If you or someone you know has an arteriovenous malformation, what were the symptoms? How was it discovered?
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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