Superior Semicircular Canal Dehiscence

[DownUnderInAus]

I have just been diagnosed with SSCD, and I'm keen to hear from others who may have had the same diagnosis. My main symptoms are pulsatile tinnitus (2.5 years) in my left ear. Thanks

[TinnitusUKPat Partner]

For anyone who has not come across this condition before, the vestibular conditions website VEDA has a good overview of it - vestibular.org/article/diag...

[mmmgggsss]

I also have P tinnitus in just my left ear, and I have had it for about 18 months. I had the same exam but everything was normal no SSCD. I had other tests as well including an angiogram of my head and neck area where they shoot fluid into my circulatory system to evaluate the blood flow pattern to look for anything unusual like a narrow spot or leakage etc...that was also normal so I am just living with it. Since you and I have a similar condition hopefully you find it manageable like I do.

I have moments of total silence at times and other times I can hear it and its a bit bothersome. What I would really like to know is what triggers it...Last night I woke up from a dream and it was pounding pretty good. I had no exposure to food or loud noise or any of the "traditional" theories on triggers. I was totally asleep so I really think this whole thing is more about the brain/neurological vs the ears/circulatory conditions. I also just lost 25 pounds and it made no difference ( 220 LB's to 195 LBs ).

[DownUnderInAus in reply to mmmgggsss]

Hi, Yes PT can be a bit of a mystery. I'm not totaly convinced that I do have SSCD, that diagnosis was made by a second ENT and was not mentioned by the radiologist reading the scans or my first ENT who ordered the scans. The first ENT that I was assessed by made the diagnosis of a (significantly) dominant left jugular with my normal hearing picking up the sound of the blood pumping through it. I doubt that I will ever find a solution to the problem. I also believe that PT is probably more common than we think. Cheers

[mmmgggsss in reply to DownUnderInAus]

Yup, we have the same thing they also theorized to me that I had a high left jugular and was picking it up but to me that did not make sense because it would be hard to figure why that would randomly come and go. One other strange thing mine does it it seems to have a 30 second cycle where the volume of it increase a bit and then decreases like a wave pattern.

[Swimmizz]

I was just diagnosed with SSCD. Waiting for the MRI. How are you?

[DownUnderInAus in reply to Swimmizz]

Hi, No change here, I'm not convinced that have SSCD, I think the ENT just plucked that diagnosis out of the sky. My thumping can be changed in volume just by moving my head / neck around. I've given up the search for an answer.

[Swimmizz in reply to DownUnderInAus]

Have you had a scan?

[ViHayhurst]

As a known cause of pulsatile tinnitus, "Superior Semicircular Canal Dehiscence" can often be surgically corrected. The American based but internationally focused, patient focused group would be your goto for more information: Whooshers.Com

[ViHayhurst in reply to ViHayhurst]

As the Whoosher.com site accurately states, "Pulsatile tinnitus is not tinnitus.

Pulsatile tinnitus (PT) is a rhythmical noise that is synchronous with the patient's heartbeat." The reason for this is that, unlike regular tinnitus, those experiencing pulsatile tinnitus need a thorough diagnostic work- up, including head and neck scan by specialists knowledgeable in PT. Those include interventional neuroradiologists. The reason is that while rare, life threatening cardiovascular conditions could be its cause. And even if not rare, the skilled centers are able to diagnose the cause of PT in up to 70- 90 % of their patients. Sometimes there is a cure, sometimes not. In my case, the cause was the equally rare (or rarely diagnosed Carotid Fibromuscular Dysplasia (FMD), and while prevention must be taken to protect my turbulent arteries from dissection there is no cure.

[DownUnderInAus in reply to ViHayhurst]

Sadly I have not been able to find a "skilled centre" in Australia...,

[ViHayhurst in reply to DownUnderInAus]

Many members of Whooshers are "Aussies". They would be able to help out.

[Swimmizz in reply to ViHayhurst]

Thank you for this.

[Swimmizz in reply to ViHayhurst]

I will investigate whoosher. Thanks

[Upbeatmap]

I was diagnosed with SSCD late last year and am currently in hospital recovering from my 3rd surgery.

My symptoms include pulsatile tinnitus as well others such as autophany, strong sensitivity to noise and generally hearing my body moving.

I’ve always been sensitive to noise and loud noises would make me feel dizzy but it all ramped up and the PT started after a flight last year.

The diagnosis involves 2 factors. A scan needs to show the holes in the temporal bone(s) and you need a positive VEMP test. This is because some people have the holes but no symptoms so you need both to be confirmed.

The first op I had involved plugging the canal (rather than the hole) on the worst side. While it has not completely cured it, it is much better. The PT is quieter and more of a hiss now. The other symptoms are much better.

The second op attempted to resurface the hole with cartilage on the other side but this actually made it worse so I’ve just had the canal plugged on this second side.

Recovery is quite tough as plugging the canal wrecks your balance until your brain readjusts so I’ve got 4-6 weeks of walking about like I’m drunk but fingers crossed this will leave me in a position where it is easier to live with it all.

It is definitely not going to completely cure it but I’m hoping I’ll be significantly better within a couple of months.

The first ENT I saw didn’t even consider SSCD but the second I saw immediately suspected it when I described my symptoms and the scan and VEMP test confirmed it.

I hope you get some good progress. Good luck.

[DownUnderInAus in reply to Upbeatmap]

Hi and sincere thanks for the response. I'm hoping that my PT stays at it's current level which I can live with. Cheers