Uncurable DAVF outlook with Partial Embolisation

Greetings friends. Long diagnostic road following initial at the wheel seizure June '21 and lucky to be alive due to my Ford Raptor. This month angiogram revealed Cognard IIa+b DAVF. No venous pouch & multiple individual branches that will take estimated 4-6 embolisation procedures to relieve venous hypertension which at this point causing pulsatile tinnitus, headaches and most concerning papilledema. My first embolisation which is 2 coils to be placed to control flow to reduce some risk and prep for gluing is Sept 12.

Treated by a strong University of Cincinnati Health team Neurosurgeon Dr. Mario Zucarello & Interventionalist Dr. Aaron Grossman. Grossman’s angiogram catheter closure was so good I had to hunt to find it it 2 days later. I trust them. Issue is due to risk on left side that prohibits full obliteration/cure the goal is hypertension reduction by closing as much of it as possible with Onyx. Outside chance getting the risky left side small enough for gamma treatment.

Due to inability to obliterate my fear is what sure seems like continual fistula return/growth which I understand can be as quick as 6 months. Does this mean I will be on a glue for life maintenance program to stay ahead of it since it cannot be completely obliterated? Is that even possible? I’m ‘only’ 53 lol and things not looking all that wonderful when it appears on top of the beast that is I caught the roughly 15% DAVFs that can’t be fully closed. Thoughts much appreciated as sometimes it is very difficult to extract the projected longevity prognosis/outlook from the docs. Steve A.

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Steve,

Wow! It does sound like quite a monster. It’s really good you joined us and I hope we can share some things with you along the way.

So, assuming you’ve not already found me telling my story dozens of times already, I had a DAVF discharging into my right transverse sinus: no monster formation, just the tiniest straight connection between artery and TVS but a big flow. I’ve never been given a Cognard classification but I’m convinced there was plenty of retrograde flow going on. I felt quite poorly as it developed and had dizziness, pulsatile tinnitus and odd pressures in weird places in my head. Very difficult to sleep at night without going into a spin. I think it was Dean Martin who said “You’re not drunk if you can lie on the floor without holding on”. Not quite as bad as that but lying down at night (and the pressures growing due to lying down) did send me into a spin by the end.

I had an embolisation in April 2017 and – long story short – I’ve got better since then. My doc thought it might take two goes but afterwards he said “Got it in one, used LOTS of glue!”

So, welcome!

The idea of 10 approaches to it sounds really rather a lot and if I’m honest with you, I’d agree that it sounds like something you’re never going to close off 100%. So, how it will affect you over the long term is anyone’s guess.

Hoping that this might give you some comfort, we learned last week of the death of one of our members here from a cause not related to his AVM at the age of about 57 but he had had something like 19 embolisations over time, first one in 1978, the last one this year. His AVM was in his neck and chest, affecting his lungs and voice initially but, not resolved wholly at any point, made its way up his neck and into his cerebellum. I think he made it to 2018 before it having a seriously adverse impact on his life.

I’ve no idea how quickly yours might do anything but I hope it helps to show others who are going through the same stuff.

I, too, was amazed at the incision size. My first op was a combined angiogram and embolization and I came away with something like a 6mm incision. If that’s as big a hole as anyone needs to conduct brain surgery, that’s great by me! I think it is wonderful that we live in an age when these things are possible.

Ask anything you want. It’s a massive shock to your life plan but I’d say half of us have been there. Hopefully we can talk you through anything you’re worried about.

Very best wishes,

Richard

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Dang,

Mine was a very similar situation to Richard’s aside from the fact that it ruptured(multiple times). The last one is what got me into finding what was what.

Each one of these cases is so so different. Mine is a dAVF about 1” behind my ear straight towards the back of my head - pretty much inoperable. “If” the embolization didn’t take, well - it’d b definitely in a different place right now.

But, it did - straight 100% on the 1st try. Even the neuros were preparing me for another very possible embolization.

Getting the micro catheter in there was definitely a challenge(I read the procedure foot notes). But, when they were done - they were confident that they could slide in for another & as many as they had to. From what I recall, I have a single feeder - I think.

So, in your case - it is possible you’re in for a round of embolizations in conjunction with possible radiation therapy. I’m turning 42 next month & I can definitely get that at 53 that’s not the news you wanna get.

Try to get as much info as you can from neurosurgical team & just hope for the best. All we can do - wish you the best!

Bless you fine gentlemen. Thanks for taking the time to share your thoughts. In research, definitely was familiar with your stories and some of the others before just jumping on and dumping. My daughter at 4 suffered a spinal stroke during angiogram at Johns Hopkins while they were searching in hopes of embolizing a spinal fistula. She later passed in 2010 at 6yo from liver failure. So, not my first rodeo. I know way the hell too much about fistulas. Eerily similar path only mine in the brain. Hoping for a different outcome. Again, thanks for the warm embrace.

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Steve,

The other thing that struck me as I was busy in the garden this afternoon is that, if you or your doctors think that your DAVF could deprive you of much of a retirement, take some advice on pensions and maybe even retirement early if either of those would help you better achieve what you want to achieve in life.

When I told my financial advisor of my medical condition, he was momentarily animated by the idea he might get me a better pension (higher income) if the doctors believed it would shorten my life. However, I told him that I expect the current view on my lifespan to be as good as anyone, so no big windfall to be had for me.

Richard

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Richard, Indeed a point and once again thanks for caring about me. One of the gut punches with this is I have long planned and prepared for early retirement as a life goal (I love to play) and wonder now how much of that I will even see…if any. A lifetime of intense savings not all lost as it goes to my family. But, a gut punch none the less bc I love life & had big plans.
A 56 year old retirement & only 3 yrs out is a near certainty as my 401k is extremely healthy. The bonus is I will have 25 yrs with my big company, MolsonCoors which gets me full retirement benefits (insurance the big one) and somewhat of a pension to include allowing to draw off 401k under rule of 55. I also draw a small one from GM my former employer. Forgot to mention loved the Dean Martin quote. SA

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My repair was 4 years back. I suffered some from a mishap in the surgery (they tore the middle branch of the MMA), but I’ve been free of the worst symptom – pulsatile tinnitus – since closure:
https://hwstock.org/PT_my_story.pdf

Maybe you’ve posted this before, but I can’t garner where your dAVF was located. For good hospitals, the rate of successful closure (for “routine” dAVFs) should be much higher than 15%.

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That sounds very encouraging. I can tell you that happenstance led to me taking early retirement just before I hit 54 and honestly, it is a wonderful thing!

I gained my AVM diagnosis a few years earlier (a bit earlier than you) and while it rocked my world, actually I felt better off than any of the much younger people hereabouts. In that way, I was encouraged that I’d had about 50 years of not worrying about my health at all and that’s a blessing.

Hopefully, we both have some decent mileage left to do and, while it’s completely understandable that that’s not what you’re thinking about at the moment, I expect that time will lead you a bit more in that direction.

I agree.

:face_with_hand_over_mouth:

Apologies…I saw that typo & corrected this earlier…should have read can’t. Read in study 85% successful obliterations…hence 15% can’t be obliterated in totality.

1st post…Bilateral transverse sinuses and the torcula supplied by occipital, ascending pharyngal and middle meningeal arteries bilaterally, along with the right tentorial artery of the Bernasconi and Cassinari adn the posterior falcine artery arising from the left vertebral artery. There is retrograde filling of the superior sagittal sinus and a single cortical vein resulting in hypertension,

That’s more like it.

Having had an AVM I fully understand the gravity of this situation. Mine was near my brain stem so not in a really good place for surgery. I ended up getting Gamma Knife treatment, but when considering embolization, I wanted to make sure they used Super Glue vs Krazy Glue.

Sending prayers your direction.

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