Does anyone here have Superior Canal Dehiscence Syndrome

Yes, my son has been diagnosed. He also has sudden hearing loss in his other ear. He has an appointment at Johns Hopkins in Baltimore MD USA in July. He is 41. Would like to hear from you.

After having surgery how are you now? Are your symptons gone? I am nervous to get it done...

Philippa, I am awaiting the VEMP test to see which side is worse of my diagnosis of bilateral superior canal dehiscence, to then decide on surgical approach. I would prefer resurfacing as being bilateral I can't afford to be plugged both sides. Who is best in that speciality in the UK, do you know?

Hi Phillipa, I've seen your story published on the internet (I think it's yours anyway !), and I just wondered if you can direct me towards somewhere where I can get some support and advice for SCD? I have just been diagnosed and have no choice but to have surgery.. My specialist is in Oxford and said they do the mastoid approach for surgery. However I've read that this isn't necessarily the best way and can cause hearing loss. What surgery did you have? I just want to make sure I get the best surgery done to avoid further surgery in the future. Thankyou. Beth

Hi there ! I just wondered if you can direct me towards somewhere where I can get some support and advice for SCD? I have just been diagnosed and have no choice but to have surgery.. My specialist is in Oxford and said they do the mastoid approach for surgery. However I've read that this isn't necessarily the best way and can cause hearing loss. What surgery did you have? I just want to make sure I get the best surgery done to avoid further surgery in the future. Thankyou. Beth

I have now been living with SCDS for around 10 years. At first I would got light headed with any pressure resulting from straining or blowing nose etc. I found out about my condition on a train platform, when a whistle was blown and the frequency knocked me to the floor. Up until that point thought it was blood pressure related. I do recall in the early days having severe fullness in ear and the ability to hear the strangest internal bodilly movements/sounds (eye movement/stomach gurgling/muscle movement).  However all these aside I am fortunate enough to have managed my condition and thus far avoid surgery. The internal sounds are not as severe now as my brain must have become used to them. I do still struggle to hear properly in noisy resturant/pubs etc, and am wary of high pitch loud sounds and pressure changes.

So in conclusion for those that have recently been diagnosed your body does adjust to a point, obviously i can only speak for the severity of my condition. I would advise where possible to give it some time you maybe supprised. For those with more severe symptoms i truly feel for you as this can and does affect most things around your daily life..

JB

Hi! Did you ever get a diagnosis? Your symptoms sound identical to mine! Especially the pressure after sitting and then standing up!

I too have ssds in both ears. I have had 2 surgeries on my left. I would be happy to convers with you on FB messenger.

Susie H
Are you still on this group?
I'm also from ne England would love to get in touch see how you are now?

Yes I've just been diagnosed with superior canal dehisense in both my ears.

There is a SCDS support group on Facebook, look for it.

Hi everyone. I'm from NW England, near Chester. I had SCDS for nearly 10 years after hitting my head in a fall. I diagnosed it myself through research, since no Dr would believe my symptoms. I eventually found a consultant who believed my diagnoses and who was willing to do the correct tests and scans. The outcome was that I was correct, I had a 2mm long hole. 2 years later (that was 10 years ago now) I had surgery at the National Hospital for Neurology and Neurosurgery in London. Result was all the very nasty scds symptoms were gone. Only bad bit was that my tinnitus got louder, my balance went completely for a few days, and today feels like I've just stepped off a boat most of the time. The HF hearing was much worse post op and still is. The tinnitus eventually settled down a little, but even today is louder than I would like. But, I've no autophony, (voice sounding loud when I speak) no occlusion effect (feeling of fullness) no dizziness/ vertigo caused by me own voice, I can't hear my own heart beating any more, and I can eat anything without having to wonder how loud it's going to be. Soume lod sounds like police car sirens still bother me, but I just stick my fingers in my ears. Would I have had the op knowing everything that I do now? Yes, without hesitation, but I also know of people who've come out of surgery in a much worse state than the went in. I was lucky. Chris

Did you ever find out what was going on? This is exactly what I have been going through, doctors don't take me seriously!

I have SCD and will read up here and connect. Has anyone had a severe version of SCD? Where the hole or crack is from the backside to the front. Imaging is 2D and I'm afraid mine may involve a crack and not just a hole.
Seeing an ENT and need of skull base doctor as well next week. Extreme dizziness and occasional autonomy. I may have had the condition for years since four concussions, fall off a surgical table as well. I went past the limit of time to file a malpractice suit against the hospital. Now I'm in a fight to keep my insanity from taking over from the dizziness and headaches. I read up on some surgeries not 100% satisfied, but hope most of all went well.

I was diagnosed with SSCD. I had a ct scan, vemp test and vng test. After surgery
I was still experiencing the same
symptoms. Another hole in the bone was discovered. After the second surgery I did better for two weeks then the symptoms came back. .I still have a loud heartbeat that happens over my entire head. Autonomy,
Nystagmus and oscillopsia. This 2nd surgery was last July of 2019. Dr. Performed surgery by going through the mastoid bone. Patients that are over 70 are not good candidates for a crainiotomy.. I take an herbal supplement to relax so I can sleep. I was told it would take a year for me to get better. I have faith and hope that i will get better. I go walking everyday and do weight training. My head gets out of control but I still keep exercising. I will be 72/in June.