Arteriovenous Malformation (AVM) Survivors and side effects

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

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.

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!

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

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

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.

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 - some of you have mentioned arteriovenous malformations (AVMs), and I'm wondering how things are going. I'm sure others will benefit from hearing about your experiences.

@stellgma - have you continued to be pain free following your craniotomy? Do you know if you will be getting gamma knife radiation on the third lesion found in the surgery?

@tanvir22 - how is your brother doing?

@auldcelt - how are your headaches?

Hi! I’m doing well. No headaches, but my dr put me on 325 mg a day aspirin which seems to be irritating my stomach. A lot of nausea. 😖 He reduced it to 81mg at my brain angiogram on sept7, but still not better yet. My primary care Dr put me on Zantac 2x a day yesterday...hoping this helps! My 3rd lesion apparently is in a bone and is not using a brain vein to drain at this time so the surgeon will do an MRA in a year to check it.

Hi, @stellgma - glad to hear from you and that you are doing well and not experiencing headaches. That is unfortunate the daily aspirin the doctor put you on is irritating your stomach.

You mentioned your primary care doctor put you on ranitidine (Zantac) now. Is that helping the nausea and stomach issues at all?