Superior semi-circular canal dehiscence and Eagles syndrome

LeaBee

Hi,  I was diagnosed with bilateral Superior semi-circular canal dehiscence, bilateral elongated styloid process and Eagles syndrome in 2018. I also have an odd shaped skull which is squeezing the internal jugular vein left and right and possibly the cause of raised-intracranial pressure. I have Tinnitus both ears and Pulsatile Tinnitus left ear as well as high/low frequency hearing loss. I experience some bizarre and bonkers symptoms such as Tullio's phenomenon and Autophony as well as being generally unsteady on my feet.  Symptoms first started in 2015, but getting a diagnosis has been difficult as the conditions are so rare many clinicians do not automatically think about investigating for them. It is a hidden disability and at times a very embarrassing one, especially at times when I stumble, fall or generally look like I am drunk when out and about. I have become more and more isolated and reluctant to venture out alone and I feel exhausted trying to explain the conditions to friends and family. I am curious to know if any one else has these conditions and if so how have you been medically treated? How do you manage on a daily basis and manage to keep cheerful?  Thank you in advance 

Ross_Alumni

Hello and welcome to the community @LeaBee

Thanks for telling us a bit about yourself and I'm sorry to hear that you've had challenges with getting diagnosed and with isolation, that can't be easy. This is a very supportive and welcoming community so I'm sure you'll find friends here and people who understand what you are going through.

Take care

leeCal

I have superior canal dehiscence. I remember explaining how I could hear my eyes move left to right and no one beleived me until pointed them to scd. Then they said I couldn’t possibly have that because it’s rare, I pointed out that I am that rare person. I was given no medication for it and sent away with tinnitus happily ringing or shushing in both ears. Happy days. 

just to add, I have gotten used to the tinnitus over the years and the SCD comes and goes oddly.

LeaBee

@leeCal So nice to make contact with another SSCD person. yeah the hearing eyes move is weird! when I blink it sounds like sandpaper. I also can hear every gurgle in my tummy and bone movement. The tulios is especially weird, the world tilts and my eyes wobble when exposed to certain sounds and I have fallen at the sound of a pneumatic drill ( road works) and with the sound of a broken car exhaust. Travel on the tube is an absolute nightmare with the screeching and the pressure change. Even my own laughter makes the world move!  When I tell people they just don't get it. 

leeCal

I must admit it is nice to hear from someone who also has this condition, though you have it worse than me. When it first occurred I thought the worst, ie that my days were numbered. However after an mri scan found nothing sinister as they call it I settled down a bit. I couldn’t believe that someone with all this tinnitus and as you say sounds of sandpaper scratching could live for much longer. But live I did and, touch wood, still am! 

Over time, several years, I have become used to it to some extent and no longer panic about it, even though it’s a constant irritation really. The doctor I saw told me that their are millions of people worldwide with tinnitus alone, that didn’t help me much especially when he added that’s there is no cure! 

Take care @LeaBee ?

just to add, when I first saw the so called expert in auditory maladies and told him that I could hear my eyes moving he suggested I had a mental health problem in a letter to my GP! I was, as you can imagine, livid!