Renewed Headaches and Tinnitus

It's nearly two years since I had my DAVF successfully embololised. I was given the "all clear" last November by my Neurosurgeon and did not need a follow up consultation for 2 years.
Intermittent tinnitus episodes stated a month ago and following a 3 day headache the tinnitus is now constant.
The tinnitus sound is like air being let out of a tyre.
My Neurosurgeon has scheduled another MRI tomorrow morning and will schedule a consultation when reviewed.
Has this happened to anybody post an Onyx procedure?
I feel my DAVF is starting to "act up" again!
Any advice would be greatly appreciated,
Thanks
Macker

I had an embolization nine years ago and was given the all clear then nine years later i started having visual problems (seeing sparkly metal things) I went back in to my neuro and needed another embolization. Evidently the"glue" can move over time. Trust your body. You know what’s normal. good luck!

Thanks Layla

Hi Eileen,
Thanks for your input, I am not allowed to take aspirin as it is a blood thinner and would cause bleed problems if surgery was required.
I took paracetamol to the recommended dose, however I might as well have taken M+M's,
Macker

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I got tinnitus after AVM surgery on my ear which has remained contant. The only explanation I got was It might be because of the loud noises during surgery. It's bad but not as bad as the bruit sound I had from the AVM. Follow up with your doctors and keep asking until you get answers.

Thanks, hope the tinnitus does not drive you around the bend!!

Have you taken a new medication? If you have, had you looked at the side effects? Some medications have the side effect of headaches, and our first instinct is to think it is because of our past health issues. I hope that you can find out the solution, because it is fearful to not know what is going on.

Hi Proudmomma8,
You may be right!
Last month my Pharmacist changed one of my generic blood pressure meds to a different manufacturer and I was taking a prescribed painkiller called Solpadol for a torn tendon which I stopped 2 weeks ago.
I will revert to my original BP med and let you know how I get on,
Thanks for your help,
Macker

Macker,

SHOOT! So sorry for your tinnnitus issues here.

Could you, by chance, talk to a couple more neurosurgeons for their opinions about what is going on? If not, I hope your doctor will fix the tinnitus.

Good luck and may God be with your DAVF future!

Lisa

I think if your neurosurgeon is good and experience and says its oblierated (cured) then thats exactly what he means I have been signed off no more checkups after 18months since my bleed. The hardest thing is now you worry about every pain you get we all do and wonder if things have returned I say odds are slim we now take more notice of every pain we get and think straight away has it come back !!!! Had it not been for the AVM|DAVF we would probably not take so much notice. If you are told you are cured beleive it and dont worry best way I found just thank God and enjoy life dont let it take over otherwise you start worring as much as you did when you had it.

All the very best

Good luck Macker.

Hi Macker, does your tinnitus follow your heartbeat or is it just a constant sound when it acts up?

My DAVF was treated with Onyx too, so I’m curious to hear how this turns out for you.

My neurosurgeon said that Onyx has only been in use since around 2005 so maybe we don’t know what long term projections are for patients like us that have had it, in terms of whether some of us will experience familiar symptoms like we had before treatment.

I wish you the all the best on your follow up! Please keep us posted on what your doctor says.

Did you tinnitus go away? I have the same symptoms just like you. My tinnitus started after embolization and it sounds like air being let out of a tire.

@Alex1907

This is a VERY old conversation. Some of the correspondents have not logged in since 2012 (and quite likely have changed their email address in the intervening years)

Is your tinnitus a constant noise – you describe it as being like air being let out of a tyre – but is it just one long whooooooooooosh or is it whoosh, whoosh, whoosh, like once a second?

The former I think is regular tinnitus and the causes are less well known or less well dealt with. I’d say most of us who’ve had a DAVF embolisation have got regular tinnitus.

The latter I think would be pulsatile tinnitus and I’d say deserves further investigation. It was a pulsatile tinnitus that sounded like the washing machine on pump out that alerted me to my DAVF in the first place.

Best wishes,

Richard

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Thanks for your answer. I had Pulsatile Tinnitus before. Therefore, I got DAVF embolization. After the surgery I got regular tinnitus. My surgent told me that he had not heard anyone complaning about tinnitus after DAVF embolization.

Currently, I am exploring “Gadolinium Toxicity” caused by contrast MRA. There are thousands of people like me, who suffer from tinnitus after getting a contrats MRA. (see https://gadoliniumtoxicity.com)

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I had a quick read but couldn’t see a reference to tinnitus, though there are all sorts of other conditions that are listed on one of the pages.

It is certainly true that some patients find themselves quite allergic to the contrast material and get very strong reactions to it; most patients seem to be largely unaffected. I would attribute the tinnitus to something much more specific to do with a DAVF than to the gladiolinium since I feel there is a good correlation with DAVF patients or embolisation patients and a lesser correlation with other brain AVM patients, yet both will be subject to angiograms using a contrast agent. It could be that high flow AVFs require much more contrast but I feel there is a stronger correlation with DAVF and/or embolisation patients.

I’m lucky that my tinnitus is not roaring loud: it’s there, it’s a high pitched key engine noise and it’s annoying but my hearing overall is decent and my best strategy is to ignore it. If I listen to it, it gets louder. If I ignore it, it can disappear into the background and I can enjoy life perfectly well. If tinnitus is a side effect of having had my operation, it’s ok for me: I’m comfortable that the trade of tinnitus for my stroke risk was a good one overall because I know how dreadful I felt my stroke risk was pre op.

Oh, and I had some tinnitus before any of this happened.

Another 1st of what I don’t want to hear

This pos coming back - oh well. . . My chances of getting hit by a car or having a freak work accident are probably just as high.

So hard to gather concrete information on this stuff - neurosurgery is definitely a science, but a science nowhere near being perfected

God Bless Us All!

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Hi Macker,

I had a Davf nd needed a craniotomy. Everything was sUccessful but I now love with tinnitus. My neurosurgeon tOld me to try riboflavin. I have not tried it yet but I am going to. Best of luck to you.