Does Anyone Else Here Have SCDS (Superior Canal Dehiscence Syndrome)?

[shrimp]

Been a member for years since I first developed tinnitus in 2016 (Tinnitus Talk pretty much kept me sane that first year), but as of lately I'm back as a frequent visitor again so thought I'd introduce myself.

I first developed one-sided tinnitus, a single tone that woke me in the middle of the night from nowhere. For years I believed it was due to medication, I was on Ciprofloxacin for a UTI when it first emerged.

Fast forward a few years I in 2019 suddenly developed vertigo. It was believed to be BPV at first but when Epley manoeuvres didn't settle it down for 3 whole months I was referred to an ENT who decided on an MRI just in case. My MRI shows a thinning, and possibly also opening in both ears in the superior canal so SCDS.

The horrible vertigo eventually subsided and for the most part I have been doing fairly well I'd say. I've been completely habituated in the sense that I always heard my tinnitus, and it also changed into multiple tones and spread to both ears eventually, but I just wasn't that bothered by it after the first two years.

Then came COVID-19 a month ago. Developed sinusitis and a bacterial chest infection and my tinnitus spiked like crazy. Sent me into complete panic again for the first time in 6 years as it was really bad this time. Had to go back to masking, couldn't sleep the first week, wake up from the noise every single night. Just horrible. One month in it's not gone down, I'm just slightly less panicked now, just slightly less. It's screaming all the time. Now I've just been put on a antibiotic that is not great for tinnitus, but after having been sick as a dog for a month and even broken a rib from all the coughing there wasn't much choice, so now just praying ot won't get EVEN worse from that.

Mainly I'm hoping to hear from someone else with this strange ailment that is SCDS. I mostly notice it from hearing my pulse in my left ear (on top of the hissing and tonal shit I have in both) and having some bodily noises transport themselves through my bones. I can hear my eyes blinking if it's really quiet and doing stuff with my right hand sends thuds into my left ear that sound and feel like my ear blocking and unblocking super fast many times. Chewing crunchy stuff sounds like I'm chewing on my bones etc.

Sorry about the long intro My excuse is it's been almost 7 years in the making

 

[shrimp]

No one? Can it really be that no one on here has SCDS (or similar dehiscence issues) as the underlying reason to their tinnitus ans hyperacusis?

I'm in a support group for SCDS sufferers and every single person on there has both tinnitus and hyperacusis + many other symptoms, so I'm thinking perhaps many more actually have this underlying condition, but it just hasn't been found? I had tinnitus for several years before my SCDS was found by mistake when I got an MRI for other reasons, until then I had no clue where my tinnitus came from.

 

[DeanD]

No one? Can it really be that no one on here has SCDS (or similar dehiscence issues) as the underlying reason to their tinnitus ans hyperacusis?

I'm in a support group for SCDS sufferers and every single person on there has both tinnitus and hyperacusis + many other symptoms, so I'm thinking perhaps many more actually have this underlying condition, but it just hasn't been found? I had tinnitus for several years before my SCDS was found by mistake when I got an MRI for other reasons, until then I had no clue where my tinnitus came from.

I know this is a very delayed response to your question but if you are still around, I am wondering if this is a condition I may have.

I try not to visit 'Dr Google' but I have had tinnitus all my life, and around 2-3 times a year a spell of what I can only describe as instant vertigo (which always felt as if it came from nowhere) but only lasted for 1-2 minutes before receding. As it happened rarely, I never noticed a trigger.

I have always had balance issues and was notorious for never being able to walk in a straight line, and falling over my own shadow. I would walk alongside someone and literally keep bumping in to them.

I also have bad hearing loss, going from Moderate at 2 kHz to Severe at 8 kHz, and this for as long as I can remember.

I mention this as my tinnitus has recently become worse after microsuction (but as I said, I have had since birth) and my audiologist mentioned a potential bone growing defect during birth as I explained my symptoms - and I wonder if SCDS is the condition she was describing as I couldn't remember.

I haven't had a bad spell of vertigo since the microsuction 9 weeks ago and the worsening of my tinnitus (mild to severe), although felt as if it could have come on - but over the past couple of weeks I am noticing more balance and slight dizzyness issues as well as more intense head pressures.

Although I am a member on here, I found your thread through Dr Google when typing my symptoms and coming across a Johns Hopkins site on SCDS, and then on to here.

I think I may go back to my ENT and ask for a CT Scan, which I have read can spot this.

 

[Hypac]

Shrimp,

Sorry to hear that your SSCD is so disruptive. I've got it too, in both ears, though it's only symptomatic in one ear. Seems I spend much of my time running from noise. (Hyperacusis). I've got autophony... can even hear my right eye move (sounds a bit squishy).

Aside from autophony, my biggest complaint is reactive tinnitus. A lot of electrical equipment makes my ears ring for up to a day or more after exposure. Electric cars? No thank you. Solid state drives? Most of them wig out my hearing. I don't even use headphones or ear buds at this point... also problematic.

In the process of choosing where I want to get MFC. Though it's much more involved than the Transmastoid approach, I really don't like the idea of disabling one of my superior semicircular canals. IMO, ya don't mess with the original equipment... (I'm not a car).

Hope the above is helpful. I'm new to this board... You can probably message me, if you have questions.