Significant Bone Loss in Inner Ear...

That, it turns out, looks to be the source of my pulsatile tinnitus.

The tale so far...

A year ago tinnitus starts with an infection from abscess tooth. This turns into a bad acute sinusitis infection. Intracranial pressure through the roof, CSF pressure the same, blood pressure spiking over 200! Pulsatile tinnitus starts. A year and a dozen "specialists" later and still no joy on what, why, or how - a tale you're all tragically familiar with. Spring. Go see a neurologist - I have plenty of C-spine issues to boot. He says I'm ok for now - likely surgery in 10-15 years depending on the breaks. Says the man I need to see is an ENT he works with at TGH. So off I go a couple of months later.

Meet with the junior man. Nice young doctor from South Africa of all places. I tell him my sad tale, he goes through my MRV/CT/X-rays says he doesn't see anything..."unusual". Senior man comes in. Junior man fills him in on the deets. He asks me a few pointed questions. Is there anything odd or specific about my condition? 'Why yes!' sez I. 'I don't much hear the PT when I'm up and moving around unless I'm really exerting myself or my BP is up. However, it's bit more pronounced sitting down and it's much louder when I'm lying down. Particularly on my left side.' 'Also,' I say, 'when I yawn the volume of the PT goes through the friggin roof. It's unreal.' "Just the left or both ears?' 'Just the left.' I reply.

He hrmms for a minute going through my scans. 'Could it be otosclerosis?' I ask. 'Doubtful' he replies. 'Hello? What's this?' he says as he looks at my first CT scan. 'Well, would you look at that.' he states, inviting us to indeed look at it. 'There looks to be some serious bone loss in your left inner ear.' Sure enough there's a visible difference between the right and left inner ear bone. The scan isn't great so he schedules me for a high-rez CT scan. And it turns out he was right. Just got his findings today. He's bringing me in for more testing just to rule other stuff out - they feel my symptoms are also a good fit for Microvascular Compression Syndrome - so I'm getting an ABR next week, damn thing and the other tests are 4 hours long.

So, once we get everything ruled in/out then we'll proceed with options. They said that a bone graft is doable without too much sweat - same sort of deal with how you get it for your jaw. They mold in soft ground up bone and oxygenated blood and it hardens and becomes the new bone. They figure what's happening is that with the missing bone there's a bit of collapse in that region and the acoustic nerve is being pulled into a vein or vice versa and hence the PT - when I said that in my head right now I flashed on Quentin Tarantino in Reservoir Dogs when he said, "Hence, Like a Virgin."

Regardless of how it all ends up I really wish I would have seen this guy first - his name is Dr. John Rutka, for anyone else in Canada or Ontario specifically. He knows his stuff, and he has the right attitude. One of the first things he said to me was, 'I know this sucks bad. And even if we can't find out exactly what is it, we can rule out what's it isn't so at least you can get some peace of mind that way and it'll help trying to isolate it in future.' And he also said he could get me into the resident psychiatrist PDQ because he deals with a lot of the people who come through suffering from T/PT and we could also try some different meds - Campral, Trileptal, et al. if I was so inclined as they could help. Exactly, the sort of thing I was looking for and wanted to hear. Where everyone else has been pretty indifferent, 'Sorry sport, learn to live with it.'

I've done a metric shit ton of research in the past year since this ordeal has started and I've learned a great deal - heh, I've had a few doctors ask me now if I had science background in biology or the like. The one thing that stands out above everything else that I keep trying to reiterate to people here is that in ever medical paper on these accursed conditions you will see them littered with examples of people who suffer from T/PT for years until they luck out and meet the right doctor. Go to a site like Whooshers and read some of the success stories.. Virtually all the same, saw a dozen docs, nothing. Met the right one and within a few minutes he found the friggin' problem. So it's not that your case is hopeless or you'll never get better, you just haven't wont the lottery yet.

Keep at it, it'll come. And don't forget the science related to cures for all of this is progressing in leaps and bounds. Within 5 years we'll see some amazing - and quite potential cures, or at least strong management tools - coming down the pipe. It's coming. All you need to do is hold on a while longer.

Well that's the story so far. We'll see what comes this December.

Good night and good luck.

 

thanks for your post, I agree on maintaining the hope part. Hopefully they develop something to bulk up the bone in the inner ear area as it seems it could be the cause for many people PT. Im interested to know, If you tap your neck and/or move your head, can you hear anything in your ear?

 

It would be so cool if your T were to fade after they do that procedure!

I can't believe the first doctor didn't see the bone loss on your CT scan...

 

Oh I can easily believe it: I had to show my CT scan to half a dozen doctors before I found one who saw radiolucencies on it, which was key to diagnose otosclerosis.

If you are going to show imaging data to multiple doctors, it can be helpful to remove the prose/reports and just show the images, so they can't be influenced/biased by what they read.

 

Hello,
Very promising story. Where can we find Dr.john rutka? Thanks

 

Dr. R practices at Toronto General Hospital. Another excellent neurotologist in Toronto is Dr. Maya Kurowia at Sunnybrook Hospital. If you're not from Ontario you'll never get to see them without a referral and it make take quite a while to do so - took 6 months to see Dr. R and a year to see Dr K. and I'm am Ontario resident. Best to see if there are any neurotologists around where you live, or ask your family doctor.

 

Like PT or just modifying my tinnitus? I definitely have somatosensory tinnitus so when I move my jaw or neck around - usually have to strain - it certainly modifies my tinnitus. I can only hear the PT when my BP from working out, exertion, stress, that sort of thing. Or when I'm lying down, which sucks for sleeping but isn't bad standing up.

 

Hey Halsy, I just read your story and have some questions for you. I am also in Toronto and have an appt with Dr. Rutka in February 2021. I am seeing him for my ear pain, tinnitus and hyperacusis.

 

Yep, at the very least he should be able to rule out a bunch of stuff. But he was pretty amazing IMO of finding the problem after a couple of questions and looking at a CT scan. Feel free to ask away.