I had embolization for an “aggressive” dAVF August 21, 2018. Main symptoms going in were pulsatile tinnitus (PT) and occasional vertigo. The PT is gone, and my balance is back, but…
Now I have a mild regular tinnitus, like a faint white noise buzz on the same side as the original PT; it started a few weeks back. Not bad enough to interfere with sleep. I never had regular tinnitus before.
Did any of you develop regular tinnitus post-embolization?
They went up the middle meningeal artery (MMA), then went down and to the posterior branch of the MMA. Initial plan was just to use Onyx. On the way, they ruptured the MMA, and created a fistula between it and an MM vein. They withdrew the Onyx catheter, and put in a new catheter to deliver platinum coils into the ma-made fistula, which is actual “in front of my ear” (intracranial). In fact that fistula has the most mass added to my head.
I’ve found just two people who developed regular tinnitus after embolization to cure PT. One still has it, much worse than mine; one, who had an extremely similar procedure (including the doctor-created fistula in the MMA, blocked by coils), lost the regular tinnitus “after a while.”
Yes, I also developed regular tinnitus after my coil embolization for a left-sided DAVF that was fed by the left middle meningeal artery.
Prior to the embolization, I had pulsatile tinnitus, which resolved immediately. I woke up and the PT was gone, but instead I heard a high pitch ringing in my left ear. It sounds like air is being let out of a tire. I had no prior history of regular tinnitus, and I sort of assumed it was a temporary side effect of the intervention and would go away eventually.
I am almost one year out from my embolization and the regular tinnitus hasn’t changed - no better, no worse. It is there about half the time. I notice that I always hear it when I am being active (jogging, going for a walk) and it is always “on” when I am in a moving vehicle. It is annoying, but not nearly as crazy-making as the pulsatile tinnitus.
I’ve spoken to several doctors about this. No one is quite sure what to make of it, but no one seems concerned. I did have a hearing test which showed very slight high frequency sensorineural hearing loss in my left ear. I was told that the fistula or the embolization may have caused some nerve damage, though again, no one really knows for sure.
Thanks! My regular tinnitus is mild, and started about 4 weeks after the operation. The PT was actually worse after the operation, but gradually resolved in 4 days, came back after an unintentional BP spike and has been absent since, except for a very faint pulse. I can’t hear the regular tinnitus at all unless the environment is quiet. I’m curious which nerves are near the embolizations; but the recanalized blood vessels may also impinge on nerves.
The Hi I had an embolization in May 2018, I had a follow up MRAin August and showed that the fistula was completely gone. Since then I have had occasional PT an regular tinnitus that the doctor is aware of and was not concerned. This morning I awoke with PT back and constant ringing both ears ,Could I have another fistula, I have been diagnosed with sleep apnea and have been using a cpap machine. Could this somehow cause PT?
Hi I am eight months post emblozation, awoke from surgery with my Tinittus 100% louder. My Davf was a grade 4+, they used ona x, I am at my wits end. Now they are thinking MVD for a grade three vascularloop, but I think it’s two gold. I am able to manipulate my Tinittus by also moving my neck exercise any advise no sleep sound is like a helicopter mixed with bees, going crazy…it’s also trying to push to the right ear, when that happens it’s a pure tone whistle, I can stop it with pressure to my ear for 15 seconds. No one can figure this out. All my scans are on!one.
I had emblozation for a grade four davf 9 months ago and a woke up with a lower version pulsating Tinittus. It’s day in and out never stops, it’s so loud now I can hardly hear it sleep, Drs not sure what happened, said I also have a vascular loop, but that was their before, they think it’s turbulent blood flow from All the onax ughh, stuck
Definitely. I’ve had regular tinnitus for decades but it definitely went up post embo. I don’t have a neat picture of where the glue is in my brain like yours but it is somewhere near my right transverse sinus.
Mine is the high pitched whine type, like you get if you spend an evening dancing in front of the DJ’s speakers.
Fortunately, I manage to put it out of my mind mostly and only hear it if I listen for it. The more conscious you are of it, the more it intrudes.
A lot / most people post DAVF embo seem to have increased regular tinnitus, from reading stories on here.
Hi everyone excuse my typing I’m using text-to-speech as I can’t hear I got 75% louder tinnitus after my embolisation my embolisation is in the occipital area behind my ear the glue or Onyx, it was supposed to repair it and said my left ear sounds like a helicopter 24/7 it never stops them faster I move the faster it goes in the louder it is, so now they found out that I have a vascular Loop that’s 50% in my left ear that sitting on the edge nerve and they want to do MVD thinking of doing that in August because I can’t sleep sleeping is impossible I’ve tried practically everything on the market Harlan are you out here too it’s Cynthia good luck to all of you if any of you can come up with anything let me know I can upload a picture of my onyx best wishes to all of you with all of this my davf was a grade 4 + so I’m lucky that was caught, so that saved my life however the side effects of been pretty miserable I have severe headaches I get BOTOX for that and that works but the tinnitus is just unbearable, please let me know how to upload a picture I’ll post it my Onyx is massive, compared to yours! Here are some before and after pictures
I had type 2(a+b) DAVF in the back of my right ear. On may 7, I had angio and embolization to treat my fistula. The operation was succesful and I was released from the hospital the next day. I was asked to take Eliquis (blood thinner) and MethyIPREDNISolone (steroids). Five days after the surgery, I started hearing ringing in my both ears. I could not make sense of it. I thought it was the end of my steroid pack causing the ringing. My doctor gave me another steroids to use one more week. However, my ringing never got better. Then, the doctor said it could be the side effect of blood thinner and I was asked to stop taking it. It has been 4 days after I stopped blood thinner but the ringing is still the same. The doctor says that there was no problem in embolization. Hence, ringing in my ears cannot be related to the surgery. But given that I stopped using all the medicine, I still have ringing. I do not know what to do. I cannot take it anymore. Please let me know how your ringing changed since the last time you posted a message in the thread. Thank you.
Welcome to avmsurvivors! It’s good you found us and I’m sorry you’re having such a hard time with the tinnitus. I’m sure I’ve seen another conversation round here (much more recent than this one) about regular tinnitus and I’m afraid that my view is very much as it was here back in 2019: tinnitus seems often to be a side effect of some of these operations.
What I would say to encourage you is that if you only had your operation a couple of weeks ago, you’re still very early in your recovery and I do think for me, my tinnitus got less than at the point you’re at.
I find that if I’m conscious of it or I listen to it, it is really loud. Discussing it with you now, I’d say it is quite intrusive, but for the most part, it is something that becomes less if I’m busy or distracted and generally I wouldn’t describe it as a trouble.
I also had quite a loud pulse that I could hear following my DAVF embolisation in 2017 and again, putting that out of my mind has been the best tonic.
I completely understand how difficult this is. I think my main advice is to distract yourself with things to do. Having some background noise may also help rather than a wholly silent room. I’m also convinced that mine is not present when I’m actually asleep: it doesn’t appear in dreams, for example.
You’re early on. I’m hoping it will fade at least a bit.
I “almost” wish I knew what it was before I had my hemorrhage
But, I didn’t - I had a pulse in my ear that developed about six months prior to my rupture, which would come in & out. I couldn’t make sense of it, so I just pushed through it.
After my embolization - well, it sounds like a constant sea shell on the left side where my dAVF is located. I’m listening to it right now since the house is very quiet. . . When I’m outside & there is some form of sound I don’t hear it much at all. But, at night it absolutely ads to my difficulty sleeping.
If you want to read a member’s story, you can click on their icon. Then, if you select “Activity” rather than “Summary” you can see their full history. Mine is a bit full so the relevant part of my story is here.
Tinittus. It’s day in and out never stops, it’s so loud now I can hardly hear it sleep, Drs not sure what happened, said I also have a vascular loop, but that was their before, they think it’s turbulent blood flow from All the onax ughh, stuck
