I call them rogue arteries and vein

I started with a “Thunderclap Headache” on April 10th of this year. Took some extra blood pressure meds and a little pain med and relaxed for the day. Back to work x 3 days, but I did call my primary care doc. He said I should have a CT. Radiologist sent me to the ER with a brain bleed. Where did that come from? I was sent back for MRI and CTA and transferred to a bigger hospital for embolization of my newly discovered Dural AV fistula. 2 sessions, the left on 4/15 and the right on 4/19. 2 arteries each side. They said there was a 5th artery and I had to have surgery for that, but I was good to be discharged, recover from the anesthesia and come back later. I researched online and decided to change to a hospital that is in the top 10 in the country in neurosurgery. My new date is 7/22. New doc says he will try to treat endovascularly, gives himself a 50/50 chance. If no success, we do surgery 7/23. Obviously scared. Looking back I realize this is the cause of the headaches I’ve had for about 20 years (Dr agreed).

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Well, Dee, welcome to avmsurvivors!

It sounds like you’ve been through plenty already (and it also sounds like you’re doing well, which is good).

I know a craniotomy sounds like a frightening deal but (if I can pitch my own worries in here) I’d have said that having a DAVF is worrying enough. I discovered mine before it bled and had to wait in the queue for at least six months for an embolisation and I worried myself to bits about the impact of a bleed. I couldn’t see how anyone would get through a DAVF bleed. However you have and I know @mike_az_21 has and so maybe we should have more confidence in the doctors.

I know you’re not a young person but here is a wonderful story from @HeatherC about her 15-year-old son who recently had a craniotomy after four embolisation procedures. My hope is that you get through as nicely as he has. Click on the blue text to read the full story.

Very best wishes,

Richard

Hi,

A thunderclap headache actually seems to be an understatement for what mine felt like.

Embolization seems to be the first line of defense in AVM/dAVF treatment

I have been very lucky/blessed, my neurosurgeon achieved full obliteration on the first try - he told me he didn’t think it’d happen & I would most likely need a minimum of two, and to be realistic.

Here I am, two weeks shy of a year post procedure.

Every case is different - all, I can say is - try to put yourself in the best hands possible.

Again - I have gotten extremely lucky to wind up at Barrow Neurological. From everything I’ve gathered, they are #1(or 2) in the US for the best embolization rates.

Same here - I’ve been suffering from headaches as a normal routine since I was a kid - yet, never bad enough to get checked out.

I know I’ve been very lucky so far and hoping for more seems like pushing it, but I am. So far no symptoms whatsoever other than the remnants of the headache I’ve had for the last 20 years. It is actually relieved a good bit after the embolization. Oh, and my hair has been shedding a lot more since 2 weeks post op. I’m going to go to Cleveland Clinic for the procedure/potential surgery. Fun fact - one of the local neurosurgeons (who I wouldn’t let touch me anyway) read my CT and stated there was “no evidence of vascular malformations”. Thankfully the new local neurologist recognized it for what it was. I appreciate the perspective folks - that bleed could have caused a lot of trouble. I did have pain in my spine for a few weeks from the blood getting into the CSF, but that was it.

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Hope is all we have at some points in our life

I like that - “a MD that I wouldn’t let touch me” < it’s so true. . . Specially when it comes to AVM’s/dAVF’s

Half of my luck was the fact that I wound up at Barrow Neurological - no way someone could have done better. . . These men/women are who saved my life & let me live my life the way that I am right now.

I wish you luck with yours that I have with mine < hard one to type, that’s for sure

Thoughts and prayers for the best possible outcome!!!

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Today was my angiogram and attempt to embolize. Yesterday the doctor showed us the pictures from the last angiogram in April (from the other hospital) and why this would be tricky to navigate with the catheter. So they knock me out and I wake up to the surgeon telling me that that remaining artery and the vein were gone. He even shot the dye twice to double check. So I’m done and discharged. The scary bit is that I was scheduled for a craniotomy 6/24 and only learned it wasn’t needed because I got a 2nd opinion and a doc that wanted to try endovascular.

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Well, overall, it sounds like you’ve done nicely! It’s not unusual for the docs to achieve more than they initially thought, or a bit less than they thought, so I’d take it as a straight bonus that you’re done.

I know the feeling of “Really? Am I fixed?” because I inhabited that very unsure space for a long time post op. So, get better post op. Take it easy. Expect things to wear you out a lot more than you expected for quite some time and hopefully you are all done!

Well done you!

Very best wishes,

Richard