Hi all,
I am so thankful I found this support group, and after reading many of the stories I finally find myself not being alone… I was diagnosed with a DAVF, Borden type 3 in Jan this year. Embolisation March failed, Squid material went to another vein than the fistula… Then they removed the fistulae by craniotomy right after. Before and after surgery I have had a tremendous noise in my right ear (fistula was in left occipital region). Not pulsating, but crazy whistling, high frequencies. Sometimes sound like a boling tea kettle, others like wind around a rooftop/corner… anyone else experiencing this?
From 2009 to 2018, I had relatively normal tinnitus-sometimes worse, sometimes not. Sometimes pulsatile, sometimes non-stop, sometimes louder, sometimes softer, sometimes not hearable.
In 2018, major surgery, embolizations, 30 some coils and a lot of super glue (so I was told). When I woke up, a couple of things:
Rather than being similar, my left ear was significantly worse than my right ear.
My right ear could hear about 80% of what it was - so from barely above the “deaf” level to full blown deaf. The pulsatile tinnitus was in the right ear and varied in volume but was almost always there. And it was louder than it was before the procedure.
My left ear, I honestly think I would be better off if I had lost all hearing in that ear… I lost approximately 40% of my hearing (according to standard tests). If I was listening only with my left ear, (right ear on a pillow) then anything I would hear would sound like Alvin and the chipmunks. There is a constant background noise in my left ear. Sometimes it sounds like a high pitched dentist drill, sometimes it sounds like a transistor radio that can’t get a signal - all static. The noise is there any time I am awake and quite often it varies with the amount of external noise and also with my headache levels. So my headaches get worse, noise in my head goes up. Noise in my head goes up, headache levels go up. Oh and there are some times where every word that I say vibrates up into my skull and shakes it around a bit. That’s a fun time. Fortunately that only happens for 1 to 3 minutes at a time and most times no more than 3 or 4 times a week.
I have become a craver of quiet. My brain functions better when there is less noise coming into my head. I used to be an extrovert, now I’m an introvert. At least verbally - I still like talking to people online.
And that is as much as I can recall of the journey of my ears…
Welcome to avmsurvivors. It’s very good to meet you!
I have/had a DAVF which was discharging into my transverse sinus, and gave me a pulsatile tinnitus in both ears. I’ve also had mild regular tinnitus for probably 20 years, which I think was damage from going to a nightclub. I had the DAVF embolised in 2017 and when the operation was done, I had increased regular tinnitus and a pretty loud pulse that I could hear – I think perhaps even louder than the pulsatile tinnitus pre op.
I’d say that pulse has faded quite a bit over the intervening years (or I’m better at ignoring it) and the tinnitus I’m better at ignoring, too.
From hanging around here for the last 4 years and taking an interest in particular in DAVFs, I do feel that increased tinnitus is pretty common post op. I don’t know this – I couldn’t give you hard statistics – but I just think quite a lot of the DAVF patients still have some increased tinnitus.
I also know a decent number of folk here who have either a loud pulse or pulsatile tinnitus post DAVF treatment. I think @tinysilky was reporting such things only the other day. So, you’re definitely not alone. Whether it indicates danger or further intervention needed or benign tinnitus that is to be ignored, I don’t know but if you find out, I’ll be very interested to follow what you learn!
I’ll have a dig around to see who I remember our can find who is in a similar situation.
mercifully, my extraneous noises stopped within a year of my DAVF embolization. I had worse PT for about a week after, and it had become bilateral. Then I had normal tinnitus in the same ear as the original PT. Eventually that went away, or my brain shut it out. My worst sequela was fortification spectra (scintomas) that make it hard to see on occasion.
Thank you for sharing, you must be very strong to manage such severe life changes.
These sounds and the impact they can have is almost impossible to understand for people without this experience. I am hopefully learning to live with them…
Thank for sharing, DickD, it helps me to know that I am not alone… Have discussed the issue with my GP, the neuro and audiographic dr, but this seems to be unknown material to them. Pulsatile tinnitus seems well known, but not the whistling/turbulent streams type that I experience… Anyway, from this site I have learned so much already, so many different stories. Until now, I have only read scientific and research material, all quantitative analyses, so you know; successful operation means fistulae is not visible on DSA, MR, or CT. But the real people behind those statistics are telling a quite different and much more interesting story, and I’d rather learn from you. So, I think it is good to learn that others than me are still experiencing tinnitus in different forms. Until yesterday I was thinking to get another angio, but now I am not sure anymore. There is a 0,5-1% likelihood of complications from that procedure too (according to my neuro dr), and the probability is low that there is any new obstacles in there, so I might just learn to live with this.
Thanks for sharing, and for setting a name on what I also experienced big time after the surgery; fortification spectra. I googled it and it was exacty what I also experienced. I tried to explain to my dr, but this was unknown complications to him…
Hope you are doing better, are you still having them? Mine are gone, since 5 months.
I still get them, when I look up a bit. they accidentally created a larger dAVF and the had to fill my middle meningeal artery and vein. Unfortunately that artery anastam I see with the ophthalmic arteries in about 55% of the population. to add to the problem, i lost1/4 of my left side peripheral vision, and my eyes switch dominance all the time.
I only found this forum not long ago and it’s made me feel so much better in life!
I’m sorry to hear of your troubles
My embolisation was successful but I have the exact same thing with regard to wind noise like being on a rooftop corner. I have never been able to explain it to my docs. I always said I could hear the beach but your explanation is much more accurate
I’ll say that it was very bad after operation 5 months ago and although still there, it’s got less and less (unless I’ve got used to it a bit)
Mines bad when I bend or lean over
I will also add that the docs said they hadn’t heard of the rooftop wind noise before but I could be that my brain is now hearing the blood flow where it neverhad before hence the new sound… mine
Was also occipital lobe.
You probably haven’t seen my other post but as you mentioned possible getting another angio … well I’m freaking out as even tho I’m completely obliterated… I’ve had scans every 30 days plus they want me to have an angio to check in 30 days (6 months post op)… then an angio every 2 years for the rest of my life… to be safe… But there’s a risk in that! So many!
I’ll report back after this angio for you to let you know if it’s still all fixed and the noises are just noises:)
You are right and it is something my wife and I discuss on a regular basis. Where’s the fine line between saying enough so that the people around you understand and not saying so much that you end up being called a whiner? That line seems to move on a daily basis.
I didn’t even tell you about the inability to figure out where sounds are coming from. (What direction) along with road noise blocking out substantially more sound (so I’m deafer (more deaf?) in the car than I am working in the yard. Which means I’m also more deaf driving an old Chevy pick up than I am driving a brand new Mercedes. With that kind of whacked out and twisted thinking, a Mercedes would be good for my hearing and therefore good for my health and therefor the government insurance that I get with Social Security Disability should pay for one, right?
This is the kind of strange and whacked out health insurance and physical symptoms we live with.
And that’s why I come here quite often - it keeps me sane…
I got a caneotromy to remove a AVM in the left side of my brain in Nov 2018. Sometimes, I still feel that I have a laundry machine in my left ear, neuralgias are common in my left side, as well.
I don’t Know if they are going to disappear some day, but I hope so.
I am sorry to hear that. Would be interesting to learn your strategy to manage this in your everyday life. I am constantly dragged between accepting and denying my situation.
Thanks for sharing, @AlwaysCurious. It helps knowing that not only me having these weird sounds in my head. I am still ´counting buttons´ on whether I should go for a new angio or not, difficult choice to make. Good luck with your forthcoming angio, and will be great to know how it all goes. Warm thoughts from the other side of the globe.
Hardest is driving. I used to go on many long trips, but now don’t trust myself to go more than 100-200 miles. Friends used to drive my car, but not in the time of COVID-19. I stay very active, I just have to watch what brings on the auras, and mitigate quickly. I often get the auras when climbing mountains, and quickly change to looking down and using the non-affected eye.
Hey TJ, Nice theory on the Merc. Let us know how you get on
Insurance companies are such ‘fun’ to deal with. The theory of ‘Well, those symptoms shouldn’t be happening… …maybe it’s not your head’ is common. ‘If it’s not your head we might be able to get out of paying’ is their idea. If they can see an out, even a pinhole of opportunity to get out of it, they will try and squeeze through that pinhole.
Thanks. I will let you know how it goes. Hopefully it’s still all filled and good and I still have the noises. That way we can all know that it can be fully fixed but have terrible new noises
