Arteriovenous Malformation (AVM) Survivors and side effects

Hello! I recently had open brain surgery (craniotomy) at Mayo to treat a 2nd fistula that couldn’t be safely reached by embolization. At day 23 I am pain free! No headaches, pressure or nausea!! It was a rough 22 days after surgery-lots of Tylenol and icing my head. It was discovered during surgery that I have a 3rd lesion that will probably need gamma knife radiation. It’s been a real rollercoaster ride the last 11 months, but I have total faith in my Mayo Clinic neurosurgeon in Rochester.

Hi Susan, Untangling all the conditions and symptom, and their associated acronyms can be confusing.

Hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu disease, is a genetic disorder that affects blood vessels. It can cause bleeding in the digestive tract, anemia, increased risk of stroke and other symptoms.

With HHT some of the networks of blood vessels that join arteries to veins (capillaries) aren't correctly formed. In small blood vessels, these abnormalities are called telangiectases. When they occur in larger vessels, they're called arteriovenous malformations (AVMs). People who have HHT may have both kinds of malformations.

Here's more information about HHT from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hht/symptoms-causes/syc-20351135

AVMs can occur for a variety of reasons. Having HHT is one possible cause.
AVM is explained in this article https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260

I hope this helps.

I haven’t heard that name used for my AVM-dura brain fistulas by the neurosurgeons-not sure.

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

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!

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.

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

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

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.

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.