Thanks. It helps on bad days to come back and read your message.
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No worries. If I’m honest with you, I felt quite unusual for at least a year and a half post op. I had a few days when noticeable dizziness got me, enough to reach out to the hospital again and say “Am I really ok in there?” Even after the 18 months, it was only being persuaded by the interventional radiologist that there really was nothing to see on my scans that I decided I had to believe him. He described it as having replumbed my brain quite significantly – high pressure in arteries where that hasn’t been the case for a long time and low pressure in veins where that hadn’t been the case, either – and that I just needed to get used to the new pressures. It does take some getting used to.
If you get anything significant or worrying, always take it seriously and get checked out but the time to recover is much longer (or, can be much longer) than you’d ever give it credit for.
I get occasions when my head doesn’t feel quite right. I talked about this a few months ago I think. But at the moment I can say I feel absolutely top notch. Only 5 years post op! 
Patience. That’s one of the magic words.
It’s good to stand together.
Richard
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I didn’t really want to let this all over the board or elsewhere for that matter
But, me & the wife are just getting over COVId. I got the worst of it - and, boy have a I had some roller coasters - finally felt fine, two weeks later. Went to the gym - felt like I was a hair away from calling the ambulance. All the sudden, everything got so shaky - I could barely stand. Luckily, my wife was with me & drove me home.
Now - I’m finally, feeling ok
She barely got a fever - I got feverish & felt like I was going to pass out for close to two weeks
Like Richard mentioned, if you or any of “us” feel off - just go in. My neurological team beat that into my head quite well - literally. It’s much better to be safe than sorry - I’ve had some close calls. But, with luck on my side I am about 10 months ER free.
It’s also such a huge factor in how I go about what we do now - I try to stay as close to Barrow as possible, since they have an amazing neurological emergency department.
Reading people’s stories, mine being one of em - not many facilities are equipped to handle an AVM patient.
I was(I’m still not) a huge religious pusher - but, I truly do feel like I was out here in this specific time for a real reason.
So you live close to Barrow in Phoenix?
Yes I do 
About 15 mins away
Negative all around
I was one of the first to be released after 100% occlusion was reached without a required follow up
None at all - no, periodical follow ups, angios, or MRIs - just put under a care of completely uneducated in “our” condition PCP(which I am in the process of changing)
What they told me verbatim(recorded) come back to see us when you have an issue
I came back a handful of times for odd symptoms, but all symptoms were caused by CNS damage - verified by multiple MRIs
Haven’t been back for just about a year now
I’m sorry what is “PCP”
Oh just a random physician?
So you don’t get EEGs at Barrow’s?
Wow 
That’s not okay
Exactly!
I am the first AVM patient my PCP had ever seen 
No follow ups at all - I asked < multiple times if any were required
To be honest, I am so so glad - it’s amazing to have a “normal” life after what I have been through
I just passed 18 months post my embolization procedure & I feel excellent. My workouts are spot on - I hardly have any “odd” sensations in the quadrant of my head where the embolization was done - so, I just keep on keeping on - to be honest, I feel better than I have for years leading up to my hemorrhage
I get no headaches anymore & my vision is my right eye is better than it has been in years
I still have a tad of “brut” in my left year at times when there is no noise/sound present, but it is quite minimal
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Take it easy, work your way into things - it took me about a month or two to just be able to drive a real distance
As far as lifting/working out goes - take it slow, I did - then worked my way up < so far, so good 
I purchased a Bowflex Tradmill finally it arrived yesterday
I’m excited to start doing some light exercise and next week the Bowflex bicycle arrives that will go to my work
Hi this is Mary Thompson., On September 20, 2021 I had a transarterial onyx embolization of my left jugular bulb dural arteriovenous fistula. Slow recovery, I’m 82, and now it feels as if I again have some new symptoms. Severe dizziness followed by nausea and fatigue on 4 recent days and some poor balance, stumbling. I just called my PCP for an appointment. Dr. Felipe Albuquerque at Barrow Brain and Spine in Phoenix did my last surgery but now we live in Rochester, NY and I’m looking for treatment on the east coast. Thanks to all for your recommendations
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Thank you. Mary T