so after 11 months of pulsatile tinnitus I finally have a diagnosis which is grade 1 dural av fistula. it’s classed as benign and extremely low risk of hemorage. My PT changes from week to week, it can go a few days were its extremely quiet but still there but then increase and be loud again. I can manage to get on with my usual life but at times I get alot of pressure and twitching coming from area were davf is. it’s pulsing 24/7 but like I did volume changes alot.
ive been told off neuroradiology that basically because embolizing the fistula would be just to cure the sound and not because of the risk of hemorage being high (classed as extremely low hence the grade 1) they have sent me back to ENT for now to try the use of a masking device. if that helps the plan is to push the embolization aside if it doesn’t help then embolizing the fistula is an option however been told would most likely be 2 or 3 attempts and 1% risk of stroke and 1% risk of to the nerve supplying face and mouth however states that would be extremely rare.
has anybody tried a masking device to help with pulsatile tinnitus caused by a davf ? I am grateful i know know the cause and glad it’s lowest grade however I can’t help thinking a masking device is the cheapest option as I am in the UK on the nhs. they know the cause and they know it can be fixed. the risks are extremely low and rare for stroke and damage to nerve by fixing just like risk for it to get worse by leaving it is extremely low so why not just get it fixed ?
It’s really helpful that you’ve posted because I learn something nearly every day from other people on here. I’ve got a DAVF that I’ve never been told the grade for but I reckon IIa+b. I had mine embolized April 2017 and I’ve got a little something else going on (confirmed this week) that I think could be a Cognard Class I and therefore I think might not need anything doing to it.
I haven’t heard of a masking device, so would love you to explain further anything you know about it.
The bit I’m writing back to you about really is the piece I’ve selected above. I’m not clear whether you’re talking about the risks associated with the masking device or the risks of a stroke or the risks of an embolization. If you could re-state the question, I’ll have a go at answering.
Interestingly, I think you’re in a similar situation to @Wendawes and your post has prompted me to re-think some of the things I was saying the other day.
the risks am talking about are the risks of doing the embolization . I’ve been told the risk of stroke and risk of damage to face and mouth nerve is 1% each so basically would be extremely rare. I also asked if the masking device works and no embolization is done is there a risk of it changing from a type 1 to higher grade and I was told it would be extremely rare but further imaging would be done in say 3 years time just to check nothing has changed .
a masking device is like a hearing aid. it’s purpose is to distract my brain from the noise coming from the fistula (the pulsatile tinnitus pulsing away) so they want me to try that to see if I can cope better before putting me through embolization as been told it wouldn’t be in and out job and that would take 2 or 3 attempts to fully treat it
I understand, so like a white noise thing that stops you listening to the PT. Definitely sounds lower risk than doing an embo.
I’ve got a little something left after embolising my DAVF, which is definitely giving me a PT. Today, I’ve come to thinking that it might be a little grade I DAVF that I put up with, rather than my previous state which was worrying that my IIa+b wasn’t properly blocked. It could be either, so I need a proper diagnosis but talking to you and @Wendawes today has helped me re-think.
yeah a white noise device. am not convinced will work and it won’t help with then slight pain and pressure I get but I will give it a try.
hopefully you find out what causing your PT but like you say might be a type 1 fistula. did they say if they totally got rid of it before or did they leave any of it ?
When I had my embolisation, I was given the all clear. Everything fixed. That was April 2017. I was never quite convinced and felt less well Sep to Oct 17 and then had a dizzy spells in Nov that propelled me to the GP and a referral to the neuro.
My neurosurgeon is a complete arse. The interventional radiologist who did my embo is great. My neurosurgeon saw me in March and didn’t listen to a word I said. Wrote a far too simplistic (and wrong) summary of the session to my GP so I challenged him on it and I got an arsy letter back saying basically “I don’t believe there is anything I can do and no tests I could do that would show anything” but somehow sent me for some MRIs anyway. Then this week I’ve had a “hmm. The latest MRI shows a little something”. So he didn’t believe me but the MRI proved him wrong. It took 11 months to get through that. I am nearly stamping mad, TBH.
I found it best to maintain a positive outlook.
In your case, if there is really no danger from it, it shouldn’t be too difficult to ignore. The masking devices really might help. Not having anything to listen to makes your brain amplify what you can hear, especially if it bothers you. So I’d definitely give it a go.
The other thing that helped me calm down was a medical bracelet that currently explains that I’ve got an embolized DAVF right occipital and my hospital details, so if someone does find me having a stroke, they might put 2 and 2 together properly and save some time.
Hope this helps. Pardon my language. Hopefully it will get blanked out by the system.
I have tinnitus, probably from trigeminal neuralgia (nerve damage to the large facial nerve that can also impact hearing) and I know this is going to sound simplistic, but have you tried NOT listening to the noise in your head?
Over the years I have found NOT listening to be the best thing I can do. I keep myself busy paying attention to other things and for the majority of the time the tinnitus itself becomes the white noise. At the start I found meditation to be helpful and also listening to music via headset/earbuds seemed to help. But in general now I don’t notice the noise unless I stop and listen to it. Or if someone asks me about it, then I immediatly hear it loud and clear again.
In an odd sort of way I guess you could say I have trained myself to not hear the noise. Trying something like this might be more helpful in the long run. It’s not like it’s going to go away, so you might as well get used to it, yes?
I have tried but it’s not normal tinnitus its the blood shunting through the davf that I can hear so it’s hard to ignore specially when lay in bed or when I wake up during night with it. and it will go away if they embolise the fistula , all the risks are extremely low and seems the best option to me. I will try the masking device but not convinced will make much difference.
how frustrating, you do feel at times like they don’t listen. for example I first got sent to ENT and got discharged twice after clear mri and Mra. told me basically nothing wrong and id need live with it. was by luck i saw a vascular surgeon who also said not much he can do but suggested a Doppler ultrasound which luckily showed a dilated artery. he referred my images to neuroradiology for advice who suggested and angiogram and that’s what confirmed davf. but I feel i had to argue to be taken seriously even though I could record the pulsatile tinnitus which my phone and play it to them lol
so back to ENT I go for this masking device thing . can’t wait see his face that I wasn’t imagining it lol
My ENT was the man who confirmed my DAVF. He had to go and find a stethoscope but he heard it well enough. Plotted all over my head with the stethoscope and then just didn’t move.
I know you’ve found it, I thought. You’re not moving.
He stopped listening, walked up and down the room a bit, maybe rang a friend (probably a neuro; got no answer as it was nearly 6pm) and then said, “Mr D. You’re my last patient of the day, but my most interesting patient of the day”
I already had arrived at an AVM as my Google diagnosis, so I said “Im not sure I want to be your most interesting patient of the day”.
“You’ve got what we call an arteriovenous malformation”.
“ok”.
And so the story started. I had recorded the bruit a month earlier by pressing my mobile phone to my head, so I knew it was not just in my mind.
Its good to meet you.
If you do decide on an embolisation, it obviously does have its risks but I found it a perfectly doable operation. My interventional radiologist said it might take two goes and I have to say if I needed to do it again, I would. I do understand better that DAVFs are not all risky, so it is probably not the right thing to do to risk it for a Cognard I. Mine was busy changing and getting bigger, with my symptoms changing month by month, so I am sure my embo was a good thing to do.
Good morning Chris:
I have been dealing with a DAVF for approximately 3 years now and like you it took many months for the dx. And like you my DAVF is low risk for hemorrhage.
Each year I consider the embolization but due to the risk I back off but it always remains an option. The world is noisy so most of the time when I am outside and active I am not bothered by the PT; however in the quiet it’s annoying as heck. At night it’s the most problematic. I initially used a white noise machine to distract myself from the PT but now wear Sleep phones to help me sleep. My wearing this headband also helps my husband to sleep since the sound machine was a bit bothersome to him (although he never complained about it). So maybe this is helpful…or if anyone has another option I would be interested. It would be nice to have a device to wear while awake in quiet times. Thanks all for being there.
didn’t realise I haven’t logged in since October. hope you all had a good Christmas.
Still haven’t managed to sort masking device out and was back at my NIR consultant the other day and I’ve decided to go ahead with embolization. he explained its my choice and that he doesn’t think am at risk to leave it however pulsatile tinnitus would be there for rest my life if I left it. he did say even after embolization PT might not be gone 100% all depends how much of fistula he manages to close off . the risks for procedure are 1% stroke and 2% damage nerve supplying face. no procedure goes without risks and my consultant is well experienced so the fact that am 29years old and have my life ahead of me am taking the risk to hopefully reduce if not end this PT once and for all. he reckons would be around the end of march he can fit me in as he’s sending images off to few experts to get their opinion before he plans it out as there is an area hes unsure about touching or not. am sure he said he’s sending them off to the man who made up the cognard grading system. so what more can I ask.
fingers crossed am making right choice but if not I will spend every day thinking should i or shouldn’t I.