Sharing your experience with dural AVM

Hi everyone! This is really a fantastic community. I feel so fortunate to be part of it. My mom's AVM is considered a type of dural AVM. Just wanted to learn about your experience with dural AVM (diagnosis, treatment, recovery, etc.). Thanks for sharing!

I did a search on here for you…

Barbara- Thank you so much!!!

I had a dural AVM on the top left side of my head(3cm). Subsequently, I had a stroke because of the AVM bleed. I had physical therapy, occupational therapy, and speech therapy (to learn to speak again). They didn’t find my AVM for several days because it didn’t show up with an MRI/MRA. It was only when they did an angiogram that they found it. In May 2011, they corrected it by going up through my femoral artery and emboli zing it with Onyx glue. I am due to have another angiogram on Feb 27 to make sure it is obliterated. it has taken me a long time to feel better but each and every day I feel a little bit better. I actually feel pretty good 8 months after the stroke with just a little bit of aphasia. But I still can only concentrate on one task at a time.
Every person is different so don’t be discouraged. I wasn’t like this when I came home from the hospital—every day was a stuggle. I used to get wicked headaches. I felt like my head was full of ping pong balls when I would try to talk to my friends and family. But eventually it got easier.
I have one son who just graduated from College and a daughter who is a junior in College. My daughter was with me when I had the stroke and I couldn’t move or speak. She says she still has post traumatic stress from the incident.
I hope this helps and I hope you find the answers you are looking for. You are kind to care so much about your mother.

Hello and Welcome
I have a DAVF and just had my angiogram and embolism this Jan at Stanford. I was under for 7 hours but I think that is longer than most. It was on the left occipital side of my brain but I dont know how big it was. I do know I had 30 connections on the artery side and one of the vein side. I was awake for the angiogram and then knocked out for the embolism part which they used medical glue and onyx. I woke up with a a terrible headache and stayed in the hospital for two days. I had a stroke last March (unrelated) so i think my head pain is worse because of the stroke. I am on sleeping pills, gabapentin and tramadol for pain. I am also going to acupuncture and also getting a nerve block in a few weeks. But again I think its all related to the stroke and then a few months after the stroke I started to hear the whooshing (bruit) and an MRA showed blood was going in the opposite direction it should..retrograde. where is your mom's DAVM? What hospital is treating her?

Thank you, Wendy, for sharing your journey to recovery. I hope everything goes well with your second angiogram. My mother had moderate to severe bruit in her right ear so her doctor decided to perform embolization to alleviate the symptoms about two and a half months ago. She still hears whooshing noises, which means a second embo or GK radiation is probably needed. Did your doctor say anything about why a 9-month wait/observation before your second angiogram? Hope you have a blessed day every day!

Hi Angela- Thanks for sharing! My mom's DAVM is on the right side (I think) since her main symptom is the loud bruit in her right ear. She had embo about 2 1/2 months ago. But she still hears whooshing sound, which her doctor had informed her that it may not completely go away.

A recent episode of stress and anxiety caused her to experience hallucinations. But she seems to be doing better on that. My mother lives in Shanghai, China. I found out two days ago that only one hospital there is equipped with Gamma Knife. Given my mom's age (she is 80), I wonder if GK is more suitable than another embo.

Good luck with your acupuncture treatment. I've heard many wonderful things about its effectiveness in treating stroke patients.