AVM With Pulsatile Tinnitus

Types of Avm's Brain DAVF
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Greetings.
I’m a Michiganainian woman, 37.

I developed pulsatile tinnitus starting in October, 2024, and initially was told it was nothing (after a doctor listened to my neck with a stethoscope), and sent me on my way after maybe 5 minutes together. The tinnitus didn’t improve, and I went through a series of different tests and doctors last year leading up to my December 15 angiogram. I am now diagnosed with a level 1 AVM/AVF.

My AVM/AVF is towards the back of my head, close to my right ear (sorry, I forgot what lobe that is). I was told that the typical treatment for my situation, assuming the person is asymptomatic, is often to do nothing, just check on it regularly.

Unfortunatly, I am not asymptomatic. I have 24/7 whooshing heartbeat in my right ear. It makes it impossible to sleep. Falling asleep at night has been a nightmare for me since this started. I have to drown the sound of the heartbeat out with ambient sound to cope with the anxiety it causes. I can’t fall asleep when there’s noise in my environment. The heartbeat makes me anxious, covering the noise with other sound is overstimulating for sleep, regardless of whether I do ambient sound or not, sleep isn’t happening until I eventually pass out from exhaustion. I even have a separate bedroom from my husband because he snores loudly and I literally can’t sleep with him beside me, snoring away. Before anyone suggests earplugs, I’m prone to ear infections and impacted ear wax, they’re not an option for me as a baseline, and NOW they’d just amplify the pulsatile tinnitus whoosh. I’ve tried sleeping sitting up, as that makes the whoosh quieter than lying down, but that’s wrecking my neck and back.

Besides the constant whoosh, I also have severe headaches, and the muscles in my face tend to twitch, like over the bridge of my nose. Whether this is from the AVM itself or simply an effect of ongoing poor sleep isn’t really known.
I’ve opted for treatment. We’re doing embolization on April 9.

This isn’t my first go around with a significant health problem. Previously, I had to have a hysterectomy after prolonged menstrual bleeding (heavy and continuous for approximately a year and a half) that almost ended my life.

I’m unsure if I’m making the right choice this time around. With the hysterectomy. I WAS sure. Completely. I had one forward path- take the thing out, or eventually die from the blood loss and strain on my body, when every other intervention had failed to stop the bleeding. This time, however, technically, I could do nothing and not be at risk of imminent death. I may honestly be better off NOT doing it, in terms of the whole chances-of-death vs not-death. I don’t have the same certainty I had before. It isn’t do or die this time.

Things that contribute to my uncertainty about moving forward with embolization-

In October of last year, my stepmom passed away from epilepsy, age 59. My double-widower dad has been, understandably, devastated. I’m aware that embolization has risks, like infection, damage to other areas of the brain, stroke, developing epilepsy, and death. I have about a 5% chance of rupture currently. Dad wants me to do it, I’m worried about him in all of this. Especially without Mom #2 by his side to support him (and me). I don’t want to make a choice for me that then brings more devastation to his life, should things go wrong. What if I end up with epilepsy after? How will he sleep at night?

I also have EDS. My connective tissues are fragile. This raises the risks and odds of complications somewhat.

Additional factors to consider-
My mother died from a stroke when she was 43. She has 2 deceased sisters from unknown cardiac complications (one at 3 months, the other at 3 years), and another sister who lived to be an adult, who survived a stroke a couple of years ago. There was also a great grandmother on mom’s side who died from a stroke.
On my dad’s side of things, my Grandma had a stroke and survived, but was greatly disabled by it. Her mother (my great-grandmother), died from a stroke in the later years of her life. There have been other family who have had strokes as well. Every one of them had a brain hemorrhage, with the exception of my mother, who had a significant clot that cut off almost 100% of the blood-flow to her brain.

To close, I don’t know if I’m doing the right thing. I’m desperate for the pulsatile tinnitus to stop, which is my main driving force to go through with it, risks be damned, I’m losing my mind from exhaustion. The surgery team is really confident the embolization will stop the tinnitus AND that I’ll be alright after. But, as my own lived life experiences have taught me, again and again over the years, the worst can, does, will happen, and I have to proceed very cautiously and seriously. I put the date in April so I don’t feel rushed, and have time to change my mind and cancel, if needed.

Advice and personal experience stories are welcome.

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@Sara-Bear

Welcome!

I had a dural arteriovenous fistula in my right occiput over 2015-2017 and had an embolization in April 2017. You can see me going through the agony of sleep, propped up on three pillows here:

I was also in the spare room by this time. So I know exactly how you feel.

My doctor didn’t give me a Cognard classification for mine but I think I was a IIa+b because I was getting dizziness and an area on the outside of my head that was pulsing as well as whatever was going on inside.

I assume the pulsatile tinnitus is getting louder over time? Mine first appeared as the quietest sound you can imagine that you might just hear with your head stuffed into a pillow back in autumn 2015. By Jan/Feb/Mar 2017 it was like having the washing machine on pump out next to my head all night. Very noisy.

So… I had an embolization as well. I can honestly tell you it went absolutely fine. If I ever needed to go round and do it again, I would do it again. I think the fear of the unknown is a good part of the trepidation that we feel. There are definitely risks to it, so you must go into it knowingly, but it’s a perfectly gettable throughable operation. If I can get through this stuff, so can you.

Did I feel back to normal afterwards? No. If you read my story linked above you’ll see the worries I had post op. It took me 1½-2 years to feel back to normal but I went back to work after 3 weeks and rejoined society after only a couple of weeks but it took a long time for me to believe that I was fixed post op.

Ask anything you need. I’ve been there.

Lots of love,

Richard

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It has gotten louder. It was stable, loudness wise, until I was assaulted on June 5, 2025. I was punched in the right eye with significant force, the impact made my jaw slam shut and broke 2 of my teeth. That’s when the tinnitus ramped up in sound, and the intense headaches leaving me bed-ridden began. I haven’t felt “normal”, or like my baseline me, for a long time. Sometimes, post-assault, I can even feel the heartbeat in my ear.

Thank you for sharing. Knowing you have no regrets gives me hope.

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You’re right about Cognard type I usually being advised that no action is needed. We have one or two other people here who elected to have an embolization on a DAVF type I.

I could feel the pulse on an area on the outside of my head. I also managed to record it on my phone by pressing the microphone to the patch on the back of my head. It’s very disconcerting. Most people never hear their AVM.

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Thank you for your insight. I wish more people had had some thoughts to share, though, and I actually feel a lot lonelier in this with only one person responding. I don’t think I’ll stick around these forums after this.

Thanks again.

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Some of the trouble is that I’m a bit too present. I think my being over enthusiastic puts quieter people off. But you’re definitely a match for my experience.

Having a DAVF is relatively rare, even here, so there are very few people with the same experience. If you have a look under Type Of AVMs > DAVF you’ll find a handful of other @BrainDuralMeningeal patients but there are not many of us. If you read their stories and/or reply to them, you may well get further shared information. Equally, most people visit here weekly rather than hourly, so don’t expect most people to be as present as me. I’m just a bit crazy.

If you have any questions or concerns, do shout them up. I don’t like to shower you with everything in one go.

Best wishes,

Richard

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Oh, I see. Should I move the post over there, to the DAVF part?

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Lets see. I just invited all of the DAVF folk into the conversation, so hopefully some will join in.

Some people follow “new members” and are keen to just welcome new members where you’ve posted this. For those in the DAVF group, it notifies them of the first post in any new conversations in that DAVF category. I’ve added you to the DAVF group as well, so if we get anyone posting afresh in that category, you’ll get a notification, too.

But bear in mind: you’re rare. There aren’t a ton of people out there with the same situation as you. I’d say only a handful can/could hear their AVM.

Much of what any of the brain AVM people talk about is common to you and me as well: the worries, the potential treatment modes, the examination scans, finding an appropriate practitioner, etc. But some of it is specific: Cognard classification rather than Spetzler-Martin classification and as far as I can tell so far, a greater balance of recommending an embolization to address a DAVF rather than the slightly wider menu of craniotomy or radiotherapy that is offered to other brain AVM patients.

If you tell us about any of the things that you’re worried about, or you’d like to know about or understand, you’ll provoke people to share their experience. Feel free to talk about anything.

Best wishes

Richard

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I’m worried about it all. The process, the outcome, the recovery, being in the hospital in general. The risk of stroke, seizures, infection, death. The stress of the situation on my poor old Dad. My own emotional distress, as I face yet another major, life-disrupting medical problem with no appealing, easy solutions. The compounding aggravation of already experiencing a debilitating and rare illness beforehand, and wondering if this is the end of the rare problems, or if there will be more.

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Well, I’ll leave plenty of space for others to talk about their experience but for me, I had all the same worries as you and I got through it nicely. I’d very much prefer to have felt perfect straight afterwards but it took a year or two. However, if that noisy whooshing sound reappears in my ear, I’ll be happier to go round the circuit again than I was first time because I know what it’s like, I’m much more confident, I guess, than I was when I was in your position and I can do it. I’d been in hospital for a carpal tunnel release surgery prior to my DAVF and that was as serious as it had been: even then, I’m not very good with blood and that had been done under a general anaesthetic in case I fainted during the operation: I’m such a wuss. So I’m confident that if I can get through an embolization, you’ll be just as good. I promise.

I’ll let others share their experience.

Have a good night. You’ll be in great hands.

Richard

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Hi Sara-Bear, I went to the Dr’s because I could hear my heartbeat in my ear, and it took two years to get an ENT appointment, so I can also relate to the unpleasantness of living with the constant wooshing and the anxiety it brings. I actually thought the problem was my heart, so was worrying about the wrong thing anyway! ENT reluctantly offered me an MRI late 2024 as they said it’s just tinnitus … they only agreed when I pushed them on confirming it could not be anything more sinister. Results came in early feb … grade 4 DAF … and I was having my first cerebral angiogram 2 weeks later and embolisation the week after that, so it all happened very fast and I was told I had no choice as so close to rupture.

I won’t lie, I found recovery quite challenging. The op was a success, and I know it was life saving, but I now have 2 new tinitus noises and still occaisionally hearing the wooshing heartbeat if I bend over, or stand up quickly. I found it hard to believe I was fixed, but subsequent MRIs and another cerebral angio confirm the DAF was obliterated. So I know I am not in danger but do I feel normal? Not yet. Finding this group was amazing for me. It was so good knowing others understood how ‘not me’ I felt. Medical staff relate to the physical you’re fixed, but I think the trauma affected me more emotionally, and although I’m 10 months post op I do still feel anxiety and question why I feel like I do, hear the things I hear. I lie in bed in that between sleep state listening forbthat wooshing sound … sometimes I’m sure I convinced myself it was back when it really isn’t! Richard advised me to believe I am fixed and that was excellent advice for me at the time … I still give myself pep talks when I’m over analysing every noise in my head and twitch in my body. The new tinnitus is not as loud, but I think it’s here to stay and I can live with that … fair trade for a life saving op in my opinion. I’m back to living life as I was … but I’m not ‘back to normal’ … I’m settling into and making friends with my new normal. I know we all experience these things differently, but I hope my story helps you realise there are peeps out here who can relate and are happy to listen.

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@LisaG

It does sound like you’re doing exactly the same as I did, which is encouraging for me but would be good to speed you back to more normal life if we can!

My advice for the regular tinnitus is to not listen to it: I found it got louder if I listened to it, so it also needs ignoring to the best of your ability. It took me two years to ignore the sounds in my head, so hopefully you’ll still get to a better place but it is really good to hear your update. As I’m sitting here in the complete quiet this morning, my regular tinnitus is making a high pitched jet engine sound – louder than most days, as far as I know – so I obviously do ignore it successfully most of the time.

I’ve added you to the DAVF group on the site.

Really good share, thank you.

Richard

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Thanks Richard :slight_smile: Just to let you know @Sara-Bear if I ever got another DAF would I go through the procedure again … yes I would. Stay strong x

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Dear @Sara-Bear

I really, really hear you. There are a number of things that you described which I can identify with.

My own treatment pathway for my 5 x dural fistulae was riddled with mistakes, errors of judgement and exceptionally poor behaviour from my first hospital but my whole brain was then stabilised when I took the decision to change hospitals and receive embolisation. In between transferring to my new hospital, I had to have surgery for endometrial cancer too. I ended up also being diagnosed with a gene condition PTEN that the doctors have a million doom and gloom predictions for but which I think of in my own mind as being a vulnerability to unpredictable blood vessel behaviour, depending on the ‘environment’. Am I right in thinking that ED is Ehlers-Danlos Syndrome? I’m afraid I don’t know too much about it but I would say that like PTEN Syndrome, we need Consultants who absolutely take it on board when discussing treatment options. They need, no they must be interested in how this affects blood vessel health and healing in the brain. I don’t regret the decisions that I made to be treated but I did not stop to question my original neurosurgeon when he said before my second craniotomy (like the first one, the second one also failed), that my genetic diagnosis made no difference to him. HIs shame, not mine.

Like many others, my pulsatile tinnitus was the first sign that something was wrong in my brain and yes, the ENT doctors ignored it. The two craniotomies that I had with my ex-neurosurgeon were failures anyway and so there was no chance that the pulsatile tinnitus was going to go away. The embolisation DID change the noise which was dominating my left side. Nearly two years later, I am still in pain with the high pitched, pulsed whining, drilling sound - a bit like a dentist’s drill. My Audiovestibular Consultant in the Tinnitus clinic (can you somehow eventually get to have an appointment with one?) said that he could hear it with his stethoscope and so I didn’t just have damaged nerves. He is supporting me in asking for further imaging from my present neurosurgeon and interventional radiologist to understand where the noise is now coming from - if not arteries, then veins? If I do have to manage the pain of this, it will be easier if I have knowledge and understanding of what is happening, as far as it is possible to do so.

Hearing about your unbelievably shocking head assault when you were mugged, straightaway makes me want to ask if you have had any care for concussion and just as importantly, symptoms relating to post-concussion syndrome? My post operative recovery care was diabolical in my first hospital and after my second surgery, my head was mishandled and effectively allowed to drop during transfer from trolley to bed. I don’t think the memory of the pain will ever leave me. I did my own research into post-concussion syndrome and it explained a great deal of where I am at now, remarkably well. Of course, according to my first hospital, this concussion never happened and I would say that even well-intended clinicians are probably quite ignorant about post-concussion syndrome. I’m just wondering what kind of investigative imaging you had after the attack and what trauma changes have or haven’t been seen yet.

I think it is incredibly difficult and needs massive courage to make a decision about treatment against the background of family health difficulties and suffering. I think that I tried to focus on and care for the overall health of my own body as much as I could. This is what I did have the power to control. The mental stress of all of this cannot really be put into words. Keep talking to as many doctors as possible to build up knowledge, and if you like animals, cuddle a dog or a cat from anybody whom you know.

Keeping all my fingers crossed for you,

Talloak

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From October 2024 through the present, I’ve undergone the following:

I’ve seen an ENT for the whooshing, who sent me off for imaging, and had me undergo a hearing test and other evaluations by an audiologist. I’m not sure if I had a CT scan or MRI. (I had an MRI with and without contrast in 2023 for a separate issue, and a CT scan without contrast in the ER after slipping and falling on our front porch steps in early 2023 due to black ice, so we have a comparison to look back on).

Then I had the MRI, and MRA or MRE or maybe all of those, I forget what the acronyms are, late last year, I think in October, but it might have been November. It was the MRE (or MRA) that showed the AVM/AVF, then the cerebral angiogram on December 15 to definitively confirm and visualize it.

Following the assault itself, I had x-rays, and a head CT without contrast, at the ER, then a full wraparound xray taken of my teeth, jaw, face, and individual xrays, at my dental office the same day, and a full eye exam, plus a follow-up eye exam a month later, and 2 more by the end of the year. At the ER, the docs said they were glad my eyeball itself was intact, and they were surprised I didn’t have a blowout fracture of my eye socket. I had taken off my glasses shortly before it happened (because I was sweating and they kept sliding off my face anyway), and they said that, too, was fortunate, and I probably would have lost my eye if I had been wearing them.

Per the concussion, I had nystagmus as well, some aphasia, some very out of character emotional rage, and I was bedridden for months. I did occupational therapy for my vision, but by the time I was doing that I had improved on the aphasia and no longer needed speech therapy.

If there was more than this, I can’t think of it.

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Oh! As for alternative opinions, my neurosurgeon brought in other neurosurgeons to look into my case, and view my images, so the recommendation to embolize isn’t the viewpoint of a single individual.

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Dear @Sara-Bear,

Yes. I am definitely with you regarding the misery of facing one life changing medical diagnosis after another. In one of my blackest, despairing ironical moments, I told a good friend that it was obviously too boring to have two failed brain surgeries and why not have major gynaecological surgery a few months later to make things more interesting…

I honestly do think you are working out a pathway which is right for you, though. It sounds as if you have been thoroughly checked after your head assault and that your neurosurgeon is a thoughtful person who isn’t afraid of communicating with other neurosurgeons to share opinions on your case. Perhaps collectively they can give you clarity that there is no long term legacy issue from your head assault, alongside ED syndrome that would compromise the embolisation procedure and safe post-op healing?

For me, the pulsatile tinnitus was also tearing my sanity into pieces and I knew that I needed to try and make the danger that this sound represented, much safer by agreeing to the one option then open to me: surgery.

I think this logic has helped keep me going because how each person experiences pulsatile tinnitus (and tinnitus) is completely unique and very poorly understood. A really good Audiologist specialising in Tinnitus pain, told me that the brain will reinforce the sound to make us focus on it because the brain doesn’t have a reason for why it is there and it wants us to sort it out, as it is now a threat. I know that this is probably really obvious to some people but I found it reassuring. Whilst I wait for my next appointments, I will do daily ‘self-talk’ and thank my brain for looking out for me and tell it yes, I’m on this! I was also warned away from ear plugs (makes it easier for the brain to focus entirely on the sound and drive you crazy), but bird song and the sound of water from a lake, river, stream or waves from the sea, has worked well for me.

Talloak

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I remember when I started getting similar symptoms leading up to my hemorrhagic stroke. I had no idea what pulsatile tenitus even was. Vision started to go a bit blurry in my right eye - went to an optometrist, he told me I was fine & it is what it is.

Then I had a few severe migraines, which I figured were from me working outside in the heat.

I have no idea how I made it to 39 Without major issues. Although the neuros did tell me that I had multiples brain bleeds previously - again, I thought they were just terrible headaches which lasted for days.

Now, I’m going on 6 years post embolization - with the closest thing to a deficit is a very slight numbness on the outside right side of my body - pinky finger + outside right toes & a tad in my right leg.

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Wow. Hemorrhage sounds like such a terrifying thing to experience.

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I actually told some folks I know recently that I have never felt crazier than I feel now, over a year into dealing with the tinnitus, let alone everything else that’s happened in the past few months. I can definitely believe that the brain perceives tinnitus as a threat- the best descriptor for myself these days is “distressed”.

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