← Return to Arteriovenous Malformation (AVM) Survivors and side effects

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@heather8900

Hello my name is Heather. 10 and a half years ago I found out I had a temporal AVM because I had the worst migraine ever and I had a ct in the ER. I was sent to a specialist and because it was so large they had to do 2 separate embolizations. The first one went great but the second one a couple weeks later went bad. The catheter got stuck by the glue (onyx) that they use and I now have a catheter entrapped from my groin to my brain for the rest of my life. A day or so later they had to then remove the AVM, which was not in the plan. That night after my 3rd surgery I had a stroke because my vein closed in on the catheter and I was losing oxygen to my brain. I spent 10 days in the ICU and had to learn after that how to read write and speak again. I now suffer for the past 10 years with horrible migraines and numbness constantly and I am on lots of meds. I also had to have a 4th brain surgery because they missed a spot of my AVM. I am still trying to find an answer. I have even been a patient at Mayo Clinic.

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Replies to "Hello my name is Heather. 10 and a half years ago I found out I had..."

Oh, no!!! Would love to know the place that did this! Doctors, etc. and you went to Mayo, too??

I went to UAMS Little Rock, AR. It was Dr. Erdem and Professor Dr. Yasorgil. I think I spelt it right. The professor was known as the best in the world about AVM brain surgery. I was the first that he left a piece of AVM. The other Dr. did my embolization and got the catheter stuck. I was the first to have that stuck also. It is now on FDA and there has been about 100 people all over. I went to Mayo Clinic about a little over a year ago for help but they didn’t really help.