Who found out proactively?

Hi,

Just curious how many of us found out about our avm’s with no bleed? I found out I had mine because I was very proactive with my body signals and went to my Doctor about it. I had two episodes this past year where I had a visual aura come across my eyes followed by dizziness, confusion, numbness, tingling… some panic attack symptoms and a headache followed by throwing up. This only happened two times almost an entire year apart but was enough to scare me. My Doctor said it was probably a migraine with aura but she referred me to a Neurologist anyway. The Neurologist also thought it was a migraine with aura but ran an MRI to be safe and voila the AVM was discovered. Just curious who here also found out before a bleed because it seems most of the stories I come across are people who have had bleeds…

thanks,
Rachel

Hi Rachel,i also found out about mine without a bleed,was having a check up on my neck and had a cat scan and that looked at my head also,thats how they found mine,not from a bleed,but all the signes you said,I also have,just yesterday ,u doctor told me that the sparkles i see in my vision were from a migraine,he called it like an aura,not always do i get a headache after,but same here,dizziness,tingling,panic attack,throwing up,but only after real bad headachesand also headbeat sounds in head and ringing in ear…

Hi Rachel, I didn’t have a bleed either. For years I suffered with migraines, but about a year or so before they found the aneurysms I started feeling very dizzy and I also started have aura’s in my vision field and it did scare me, that’s when I was alarmed that something seriously wasn’t right with my body. It wasn’t the normal and I verbalized it with my doctors. They diagnosed me with migraines, and sinusitis. I already knew I had those problems but kept complaining to them about my dizziness. My complaints is what eventually lead to the ct scans which were normal. My ent doctor was baffled as to what was causin my dizziness.I had so, so many test done and then had the mri which threw up a suppision in an area in my brain. Well that’s how mine was found. I also was having problems with confusion.

Caroline, I get the heartbeat thing in my ear and ringing sometimes too!

Caroline said:

Hi Rachel,i also found out about mine without a bleed,was having a check up on my neck and had a cat scan and that looked at my head also,thats how they found mine,not from a bleed,but all the signes you said,I also have,just yesterday ,u doctor told me that the sparkles i see in my vision were from a migraine,he called it like an aura,not always do i get a headache after,but same here,dizziness,tingling,panic attack,throwing up,but only after real bad headachesand also headbeat sounds in head and ringing in ear…

i found out about my avm when i woke one morning just not feeling right and when i got up i noticed i couldnt see any thing to the left of me as i had lost all field vision to my left…when i got to the docs they assummed i had a stroke…but i hadnt what had happened was the avm had stolen the blood and oxyegen from my occipital lobe…resulting in the looss of vision

Hi Rachel, My daughter found her’s after she fell on the ice jan. '08 and had a concussion so I made her come home from college and go to the ER the next day after she told(she thought I was totally over-reacting, by the way) and that’s when we found the AVM. I try to look at it as a blessing in disquise, because Ashley has never had ANY symptoms…so we are ahead of the game with treatment…at least that’s what I tell myself. They say her’s is inoperable due to it’s location near her motor center and they fear complete paralysis if they go in. So last May she had 4 fractions of Cyber-Knife radiation and now we play the waiting game with MRI’s every 3months…so far no change, but I try to stay optimistic. How is your’s being treated if i may ask???

Nico didn’t have a bleed. At three he was struggling with language I had him evaulated. The doctors sent him to speech therapy. I knew something wasn’t right., because some days he would just zone out and suck his thumb. Finally at age four he had a MRI and that is how we found out he had a AVM.

Hi Rachel, same thing here. I found out because had migraines with aura and went to the eye doctor. They recommended a scan and there it was the avm. I was told the migraines had probably nothing to do with the avm. But reading all the comments here i think it definetely is.

The first headache i ever remember was in 8th grade. I had headaches since then. They were actually migraines but i did not realize. When i was 45, i woke in the middle of the night with a terrible migraine. I took a pain pill and told myself if i woke up in an hour, i would go to er. That’s what i did. After a couple of ct scans, the dr walked in a confused state asked if i ever had a ct of my brain before. Told him if did, it would be in my hospital records. He left again. Came back in spouting off a long diagnosis name. Sent me to the neurologist. Within 10 days i was at Duke prepping for angiogram. As soon as it was able to be scheduled, i had two embolism proceedures and due to complications end with gamma ray radiation.

Monica, Shawn,

Be careful searching for posts and then replying, as to how old the post is. I would suggest that where a conversation is more than 2 years old, you shouldn’t in general reply. Where a conversation is a year old or less, it is more likely that members are still active on the forum.

This conversation dates back to March 2009… the date subtly uses Mar '09 to indicate March 2009 rather than Mar 09 which means 9 March this year. Of the Members in this conversation, only one has logged on in the last 7-8 years.

Monica,

If you’re brand-new to the site, do start your own topic in the New Members section and tell us a little about yourself and any questions you have and current members can talk about their experiences.

Best wishes both,

Richard

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