1. < Stroke & Cerebrovascular Diseases
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Arteriovenous Malformation (AVM) survival and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

I'm a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I'm also interested in reading about studies and research on AVMs

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susan1955 | @susan1955 | Apr 23, 2018

Is AVM the same as Osler-Weber-Rendu? (Also known as HHT)

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2 replies
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stellgma | @stellgma | Apr 22, 2018

I had that too-an embolization. My procedure closed part of the fistula, but they couldn’t safely get it all. I have an appt at Mayo in May to find out if the dr can do open brain surgery to remove a 2nd fistula. Best wishes to your brother!

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tanvir22 | @tanvir22 | Apr 22, 2018
In reply to @tanvir22 "Hello... my brother was diagnosed with an AVM and had his second procedure on Thursday. They..." + (show)
Profile picture for tanvir22 @tanvir22

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

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Thanks @stellgma! I am not sure of the medical terms but he had the procedure that involved the medical glue to stop blood flow to the AVM.

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stellgma | @stellgma | Apr 21, 2018
In reply to @tanvir22 "Hello... my brother was diagnosed with an AVM and had his second procedure on Thursday. They..." + (show)
Profile picture for tanvir22 @tanvir22

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

Jump to this post

So sorry to hear about your brothers complications. What type of procedure did he have done?

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Profile picture for tanvir22
tanvir22 | @tanvir22 | Apr 21, 2018

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

REPLY
2 replies
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stellgma | @stellgma | Mar 24, 2018

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.

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1 reply
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heather8900 | @heather8900 | Feb 26, 2018
In reply to @heather8900 "Hello my name is Heather. 10 and a half years ago I found out I had..." + (show)
Profile picture for heather8900 @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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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.

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EES1 | @ees1 | Feb 26, 2018
In reply to @heather8900 "Hello my name is Heather. 10 and a half years ago I found out I had..." + (show)
Profile picture for heather8900 @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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Oh, no!!! Would love to know the place that did this! Doctors, etc. and you went to Mayo, too??

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Profile picture for heather8900
heather8900 | @heather8900 | Feb 26, 2018

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.

REPLY
2 replies
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