Arteriovenous Malformation (AVM) Survivors and side effects

Hello again @feroza

Have you had the opportunity to read the NIH article yet? It looks like a multidisciplinary approach is the best way to treat AVM.

Have you tried getting a second opinion yet? Perhaps that would give you more confidence to step out and make the right decision for your daughter's treatment.

Teresa

Hi there:) I just read this and was wondering how your daughter is doing. I found my AVM only after it had burst when I was 21. I would love to talk to you.

Not quite sure how you know my daughter. Would not mind talking too you either.

Hi @skielley, I believe that @loulouburke was responding to @feroza and asking how her/his daughter is doing.

Skielley, do you or your daughter have experience with Arteriovenous Malformation (AVM)?

No we do not

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.

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.

Hello, does anyone else have a dura brain fistula? I was diagnosed with 2 of them and haven’t heard of anybody else having brain fistulas. I’ve read a lot online about them, but would like to talk to someone who has one.

Hello... my brother was diagnosed with an AVM and had his second procedure on Thursday. They said the procedure was successful however he is currently still in the hospital with complications that will require him go to physical and speech therapy. He has slurred and slow speech along with limited mobility in his right hand.

Does anyone know if this is expected and temporary and can be treated with therapy? He lives out of state and we are worried about him, I will be going there tomorrow to be with him but wanted to see if anyone has any additional insight or advice?

Thanks