Happy New Year to you all. Thought I'd introduce myself and my DAVF experience

Hi, I’m Nicole, brand new here. First of all, happy new year, and may 2025 bring health and happiness to all you.
I’ve read a lot of your stories, some actually made me cry, you are all so brave. I have definitely not endured as much as some of you, but still feel like it’s been a strange and often stressful experience, and welcome any support.

I was diagnosed with a DAVF in June 2024. About a month before that, I had some odd scratching noises in my ear, first one, then the other, heartbeat sounds/wooshing in my ear started. I headed to my GP, so she could check my ears.

She initially sent me to a audiologist, hearing test was all good. Skipped the ENT appointment, for an MRI she referred herself. Next thing I knew, she sent me to the hospital emergency to make sure I got seen by a neurosurgeon ASAP, as a DAVF was found on the MRI, together with a possible blood clot (which to this day it seems a little unclear if it was even a blood clot or some other thing from the DAVF).
After some communication breakdown stuff-ups at the hospital, I had an angiogram, which I was totally unprepared for due to the said stuff-ups, but the imaging department were amazing. After a quick look they classified my DAVF as a Cognard Type 2a, low risk, left transverse sinus DAVF.
A week or so later, I met my interventional neuroradiologist, who explained all the images, and after that first appointment I felt like I was in good hands.

He got me to try carotid compression therapy, as there was a 30% chance it can help the DAVF resolve itself. But over those few weeks my symptoms got worse and worse. My PT got louder, with various different wooshing, whistling, and siren sounds joining the orchestra, and my right ear joined in the fun my left ear was experiencing. I also had a weird high pitched cicada like PT on top of it. I had prickling sensations, headaches etc, and other strange facial symptoms.

Mid-September, another IR review, and after discussing how my symptoms were affecting my quality of life, he recommended embolisation as he considered the benefits now outweighed the risks. I was basically at the stage where exercise and even bending over were causing weird pressure changes and headaches. So many symptoms from a type 2a fistula.

After an initial cancellation of my procedure, due to an emergency coming in as I was getting gowned up, I was re-scheduled for 2 weeks after that, 1st October. It took 7 hours, as it turned out to be a bit more complex to fix. I had a fair few feeders; they blocked off my left sigmoid sinus vein, where most of the 30-something coils were placed. Apparently they had to take that approach, as I had a number of feeders going through my facial nerves. They didn’t want to risk the nerve damage by touching those branches directly. They also coiled some arterial feeders in a few other spots, and used PHIL in another.

I had a bit of a terrible time in ICU and neurosurgery ward, due to some uncaring nurses. I won’t go into the dramas at the hospital, but all I can say is that it left a bit of an emotional mark. The 7 hour procedure affected me a fair bit, I couldn’t move at all for most of the night afterwards, and one of my puncture sites (arterial) kept bleeding. I couldn’t walk or stand on my own without losing my balance. After a 2 night stay, the physios that had the final say, saw the lack of care I was getting, said I would be better off at home.
Bit by bit my balance came back - took 2 weeks for me to feel like I could walk straight.

The severe headaches and sharp pains in my head continued and the odd PT, and after 2 weeks, my INR ordered an MRI, just to be sure there were no complications. He was pretty happy with the result, which showed “significantly reduced flow”. He was confident they got all of it in one go.

Fast forward to my 6 week review, and I still had very bad headaches, and the ongoing high-pitched PT, which was now sounding like a metallic hissing/metallic vibration, still pulsing in time to my heartbeat. It gets worse when I lie down, especially the longer I spend lying down. I can change the way it sounds or diminish it by putting pressure on different parts of my head, or turning my head specific ways. Out of all the severe headaches, sharp stabbing head pain, none of those cause me as much distress as this new(?)/changed(?) PT.

Original plan was to do a 3 month MRI, then a 1 year angiogram as the final test. The 3 month follow up MRI got changed to an angiogram instead as he needs to be sure there’s no residual flow left over, as the MRI doesn’t always give enough info.

So currently I’m in a holding pattern, while I wait for my upcoming angiogram. I am apprehensive, because in some ways, I hope they find something, as I desperately need an explanation for this PT, instead of having no idea.

My specialist has been an absolute sweetheart and a lifeline through my rough experience with ICU/neuro wards, various appointment cancellations/etc, and got me through it. I have never met a doc quite like him, and thankful for the care and compassion he’s shown so far. Every time I mentioned that maybe I was just being a baby, he would remind me that that this is a rare and real pathology, and I was anything but. And that a 7 hour op is a pretty long ordeal.

Everything happened so fast, from diagnosis through to embolisation in less than 6 months, I don’t think I’ve processed it all. Despite the classification being only a 2a, this whole experience definitely took over my life. I know it will take a while to get back to feeling “normal”, do “normal” things. I’ve read many of your stories to now know not to push too much, but it took time to learn that.

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Welcome Nicole! It sounds like you have had a lot going on in a relatively short period of time! I was a straight AVM discovered by a bleed back in 2016, gamma knife also in 2016 and confirmed obliterated in 2019. I understand some of what you describe for sure, largely the finding out that I had and AVM and what the heck an AVM was!

I think we all go through the full range of emotions, and the research we can do these days is great, but also very frightening. The waiting is always difficult, and I rationalize it by its actually better than being at the front of the line! Particularly true in a publicly funded health system. On my bleed day I was at the front of a lot of lines, but once stabilized the hurry up and wait started!

I was very fortunate as had an excellent experience through my journey with all in the health care, and my neuro surgeons were totally amazing. I have had some friends and family that had less than great experience with their health care experience, and it shouldn’t happen. I do find here in Canada that a lot of front line service providers in many areas are becoming numb by always being short, working crazy hours and often not treated great by clients.

We have a number of DAVF folks here and have a lot of experience in embolization and their recoveries and challenges who I think will likely join in. I hope we are able to help out some. Take Care, John

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@NicoleS

I think your experience is the nearest I’ve read to my experience on here.

I had a DAVF which developed pretty slowly at first: I had some pulsatile tinnitus that was very faint at first and as it got louder, I did more concerted Googling until I found an article on the American Stroke Association website that described AVMs, pulsatile tinnitus, bruit and DAVFs and had my first OMG! moment.

It was an ENT doctor I saw who said “You have what we call an arteriovenous malformation. I’m going to send you for an urgent MRI” but it took a whole month for that MRI to happen and a further month for the report to get back to him. I discovered this website just before the MRI and it took several months to be referred to neurosurgery and in fact took a whole year from my first OMG! moment to embolization, so I feel I had a lot longer to read, understand, frighten myself somewhat and yet also rationalise about the need for an op etc.

In the same way as you, the conclusion of the investigations was a DAVF adjacent to a “diminution” of one of my transverse sinuses. I’m not sure whether that was through some kind of build up or just a narrowing for some other reason but yes, that was present at the site. I was treated with PHIL glue (no coils) but my consultant said he thought he’d blocked it off in one go “I used a lot of glue!”

Equally like you, post op I didn’t feel fixed. I’ll have to link you to my story as I’ll remember some things inaccurately these days but basically I had a very loud pulse in my ear post op – it sounded like a proper pulse, not the whoosh whoosh of PT, but I was very perturbed by that. Here’s the link: My Update - Dural AVF Embolization - #22 by DickD

At the 7 or 8 week rescan I was hoping they’d find a little something that needed fixing because I didn’t feel right at all. A decent amount of dizziness and oddness remained but the conclusion after that scan was “Nothing found. Just resume life as normal.”

I did as I was told, though I’m not sure I believed. In general, thing went ok but I had a spell of big dizziness about 6 months post op which I had to go back on the waiting list to be seen, had a rescan six months after that and the report six months later still – so, a year after that dizzy spell!! And the conclusion was still “Nothing found. Just get used to the new pressures in your head [and it will fade into the background].”

The truth is that I concurred and allowed myself to believe I was ok, I ignored the noises and the slight weirdness and today, getting on for 8 years post op, I’m absolutely fine. I don’t worry about it, I don’t particularly pay any attention to it and there’s nothing I don’t do in life as a result of it.

From what you say, your initial diagnosis may have been Cognard 2a but it sounds much more 2a+b by the time you finished. I was never told a Cognard assessment but I’m pretty sure I was 2a+b. I had dizziness principally and a loud whoosh whoosh pulsatile tinnitus that was incredibly loud by the end. I didn’t have the regular tinnitus whistles and screeches that you describe, though I’ve had a jet engine whistle for decades that’s not overly loud but emanates from a night in a club maybe 20+ years ago.

Welcome to the site! It’s great to have you join us and I hope we can help you to rationalise, get a bit more ok with needing that next angiogram and be with you asking the way.

Very best wishes,

Richard

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@JD12
Thank you, yes, it seemed too short a time to make decisions, but at the same time I’m grateful that a DAVF/AVM is taken so seriously, and the imaging department/IR clinic at this hospital is very good. My INR has been advocating for me, making sure things happen in a timely manner also. I got lucky with my specialist at least!

I’m in Queensland, Australia, by the way. Our public system, like everywhere where there’s free health care can be tough to navigate sometimes, but I think the docs and nurses do the best they can. And I am glad I live somewhere where we have this kind of world class treatment available to us in a public system. And for me the wait time was short, in general they can do embolisations fairly quickly, even when it’s elective.

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@DickD

Thank you for your kind words, I truly appreciate the support everyone tries to give each other on this site.

I have actually read your story before I even signed up for the site, as I found I could very much relate!. I didn’t have dizziness, only rarely, ( and after the embolisation for a whlie also), but I found my symptoms escalated so quickly.
They told me though, that my fistula didn’t really change that much by the time I had the embolisation procedure. My INR mentioned, that he’s seen the diagnostic angiogram sometimes start triggering more symptoms though.

I am suspicious that I’ve had some weird nerve damage somewhere but it’s unclear to me how much damage a “benign” DAVF can do; it seems doctors are really not sure about this side of things, they can only guess, as everyone’s brains are wired so differently in terms of nerve and blood vessel pathways. I am aware however that I had feeders that went through facial nerves, which they couldn’t touch, hence they sacrificed my left sigmoid sinus vein. The facial symptoms I developed caused some minor tingles, numbness, and I sometimes feel like I’m hissing when I talk (it’s like something is vibrating in my face, haha). That has not yet gone away completely after embolisation. I can’t imagine that it could be something unrelated, it would be too coincidental … but who knows?

At this stage I still have pressure headaches (makes me think of a migraine), and ear fullness, and even my nose/sinuses are feeling it. That often feels like it’s getting worse instead of better. I know I have to give it more time for sure.

My INR said, often symptoms take as long to go away as you’ve had them! I am really hoping that’s the case here, and this PT settles down. Sometimes it does, and it’s a more of a soft hissing in time to my heartbeat, but when it’s sharp it’s aggravating as heck. Lying down makes it much much worse.
I’ve had one embarrassing teary phone call about all this to my doc, as I really wasn’t coping well with it.

Again, thank you for the welcome. I am glad you are doing so well after a few years, and living life as normal, it is encouraging.

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It definitely takes a long time for everything to feel back towards normal, so there’s a good amount of patience needed. The other thing I feel from my experience is that recovery from this stuff isn’t a linear thing: it can definitely feel like you’re going backwards – like the strong dizziness I had in Oct 2017 – but that was ruled as nothing to worry about / nothing visibly amiss on the subsequent scans, so it is very possible to feel like you’re regressing when in reality you’re making perfectly good general progress.

It’s impossible to know whether your remaining symptoms are to worry about or not, so I think my approach would be to try to chill about it but anything that seems important to investigate, report to the doctors and see what they make of it. I don’t like the residual hissing that you’re describing: that just sounds like an AVM still in play to me but I’m no doctor. It’s fair to say that a bunch of people here have or gain some degree of pulsatile tinnitus post op (and obviously when it gets close to the sigmoid sinuses) so it may just be an ok residual thing. You’ll need to choose whether to accept it or stay suspicious of it!

I do think that the best way to move on from these experiences is to not listen to the noises in our heads. I think we can obsess a little about them and that amplifies the noise. So if / when you can conclude that everything is ok up there, ignore any remaining noises and effects and I think they fade quicker into the background.

I’m very interested to know how you get on, so do share with us how you do. It is by this sharing that we can help each other and help more new, frightened folk find someone to relate to.

It’s really good to meet you, though always imperfect that it should be our health worries that bring us together!

Lots of love,

Richard

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Hi Nicole, I must start with how incredibly strong you have been through out this process. My experience is different to yours due to mine being a large ruptured AVM in left frontal lobe, but your experience sounds equally as stressful to mine. I am so proud of you and wish you the best for the future. I am also located in Australia. NSW to be exact. I understand the hospital system not always being the best, but I’m grateful you have also come across a great specialist. Just wanting to send my love and so much health your way.

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Thanks Skyekh, thank you for your encouraging words, and I appreciate the love. I can’t imagine going through what you did, and so young! I hope everything is going well!

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@NicoleS Hello Nicole and welcome I too have a DAVF mine was caused from a rare stroke from 5 blood clots cvst and then about 6 months later my left transverse vein collapse and thus my body created the DAVF…,mine had 30 legs I said it looked like a spider. I too feel like ear f ullness and constant tingle like someone is pulling my hair hard . From my massive stroke I still have constant pain on top of my head and made my migraines worse.

You can ask about Botox that might help that migraine pain. I get Botox every 12 weeks and they do it where my actual pain is - they say I shouldn’t have pain there but they still don’t know so much about the brain and think the small nerves in my brain got damaged, I was in a coma for a week and had to relearn everything.

Also there are shots with lidocaine and ropivocaine that can help as well. I see the head of pain at Stanford.

Hugs
Angela

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Hi Angela, so sorry to hear what you went through, that is scary! Hope you are doing much better now.
Thanks for the info! It feels like things are ever so slowly heading in a positive direction, and the spikes of pain and migraine like headaches are less frequent, though still get triggered easily from lack of sleep or activity or stress.
Good to know about the options for managing things!
Love and hugs,
Nicole

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I had my follow-up angiogram this week, on the 14th. Good news is that I don’t need any more treatments, things are looking good. DAVF 100% occluded, and no other blood vessel issues that they can see. Just MRI to go at the 1 year mark to confirm nothing is returning, and I should get the all clear.

Doc and I are hoping that the symptoms I’m still experiencing - the odd PT I still have, pressure, and the facial stuff - may just need more time, as I have had some promising minor improvements in the last week or so, especially in the headache department. My PT is gentler, it is not hurting my ear all the time now, just at times of stress and activity (it was literally a painful sound before, all the time). The facial symptoms don’t bother me that much as they come and go, but do get worse at the same time the PT does. I have however acquired some normal tinnitus in the opposite ear from the DAVF! Arrgggghh… haha.

I am being as positive as can be. I will have an appointment with my INR in a few weeks when he gets back from paternity leave, and will be going through pictures again, and re-assessing where I’m at. Here’s hoping, that by that time I have good news for him.

I am however feeling rather overwhelmed and at times very teary. I don’t think I’ve processed everything that’s happened over the last 6 months or so (too much too fast), and things are starting to hit me.

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Honestly, this sounds great. It sounds very similar to me still and my own recommendation is to try to believe you’re fixed, ignore the remaining noises etc. It took me 1½-2 years to get there but there’s nothing I do today that is affected by my op. I’ve quit caffeine in coffee, actually, that’s about all of it.

I’m completely with you on the remaining weirdness and the regular tinnitus. However, the more you listen to it, the louder it gets, so ignore it the best you can.

None of this is easy, so be kind to yourself as you go along but we’re here to support you and I think you’re doing amazingly.

Lots of love,

Richard

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Hello @NicoleS I am so happy to hear your good news. It does take time for our body/brain to heal.
It’s been 13 years since my first angiogram and treatment - I still worry if I get a new zap or even something on the other . I always tell my husband just so he can be aware so he can keep an eye on me because I never told anyone when I was having my pain with my blood clots. I think its normal to freak out after we have been through what we have been through. We have something rare and invisible.
I was very freaked out after being diagnosed . It is completely normal to be overwhelmed and cry. It is a great deal to process. Most people don’t get but we do.
We are here for you and note any changes and tell your dr
Big hugs
Angela

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Thanks Angela, big hugs to you too, you’ve been through so much, it must be so scary whenever something happens in the head area.
You’re right, the fact that it’s invisible, and only we know how we’re feeling can be hard to deal with, and harder to explain to doctors. And sometimes they still don’t quite understand! I remember ringing my doc every time I got some new symptom, as I had no idea when I should be worried! I’ve learnt a lot though in the past 6 months.
Thank you again, and I hope that I can be there for people here the same way eventually :slight_smile:

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