Hi Mindy and thank you for your videos. I think I’ve watched all of them and yes, I have bilateral SCDS. Had transmastoid superior canal tube plugging surgery 2 weeks ago in Denver. Took me over 5 years to find doctors who could diagnose my problems. Finally. About the cause of SCDS - my understanding is a bit different - and anyone please correct me if you think I’m wrong here. The initial cause is due to a small hole in the temporal bone (side of the skull that last to form as an infant and is naturally thin) the hole is called a dehiscence. The hole - if right next to the superior canal of the vestibular system - opens a pathway ( called a third window ) - for good sound to escape out of the cochlea through the superior canal and be lost into the brain matter - and for “bad sound” to enter into the vestibular canal from outside and be processed by the cochlea. Good sounds lost causing hearing distortion - bad sounds gained giving those bad symptoms of hyperacusis, autophany, fullness and probably more. There is not a hole in the superior canal. I am not a doctor so I’m sure some of this is incorrect, but I think the concept is correct. Thanks again for your videos. I don’t Facebook and RUclips has been my main source of info. Brent
@@Sandralenin-do4yo Thank you for asking. It’s been 11 months now since the surgery. Ben a difficult year for me, but so were the couple of years before the surgery. Current condition: right side of my hearing system is still “plugged up - fullness”, hearing is very muffled. Eustachian tube is probably a main source of this problem. Surgeon says there is nothing more he can do. I also probably have fluid in the inner ear that is part of the fullness sensation. Surgeon said that would be gone 3 months after surgery - not so. There are times when my eustachian opens up and I have an experience that feels like the clouds have parted, the birds are singing, all is great - - - then 10 seconds later I swallow again and it all goes back to being plugged up. Crap. But this sensation tells me that the equipment inside my ear still works - just got to get it unplugged. So I decided to find a new ENT in my area - someone I could talk with and ask questions - not expecting anything magic words or cures. I’ve had one visit so far and I like him a lot. He knows the surgeon who operated on me and spoke very highly of him. The new ENT feels that he can help me. There are different types of Eustachian tube disfunction and it is kind of a drawn out trial and error process with different low impact meds to hopefully figure it out. If this approach doesn’t work, he said that he has other methods to deal with the Eustachian tube and fluid (surgical). So - not the outcome I was hoping for - that’s for sure - but I haven’t given up. Question for you - do you have SCDS? If you do, and you ever feel like talking, let me know. I’ve never spoken with anyone who also had SCDS. If you do - my best regards to you. Brent
@@Sandralenin-do4yo Second response from Brent to Sandra. I realize that I didn’t fully answer your question. Have some of my symptoms gone away - or been reduced significantly? The answer is yes! I don’t have autophony anymore (hearing my own voice as being loud and like inside a garbage can). A lot of the sound distortion has gone away - still have some, but infrequently. Hyperacusis is less but still a problem. Tinnitus is still a problem but I’ve learned to ignore it most of the time.
Thankyou for your valuable time to spent replying me with concern, I'm not still diagnosed I have scsd , but my symptoms arised before 2months pulsatile tinnitus and autophony this my nightmare symptoms so that I'm started searching RUclips and googled,
Hi Mindy and thank you for your videos. I think I’ve watched all of them and yes, I have bilateral SCDS. Had transmastoid superior canal tube plugging surgery 2 weeks ago in Denver. Took me over 5 years to find doctors who could diagnose my problems. Finally.
About the cause of SCDS - my understanding is a bit different - and anyone please correct me if you think I’m wrong here. The initial cause is due to a small hole in the temporal bone (side of the skull that last to form as an infant and is naturally thin) the hole is called a dehiscence. The hole - if right next to the superior canal of the vestibular system - opens a pathway ( called a third window ) - for good sound to escape out of the cochlea through the superior canal and be lost into the brain matter - and for “bad sound” to enter into the vestibular canal from outside and be processed by the cochlea. Good sounds lost causing hearing distortion - bad sounds gained giving those bad symptoms of hyperacusis, autophany, fullness and probably more. There is not a hole in the superior canal. I am not a doctor so I’m sure some of this is incorrect, but I think the concept is correct. Thanks again for your videos. I don’t Facebook and RUclips has been my main source of info. Brent
How is your surgery journey going on, hope you are doing well 😊
@@Sandralenin-do4yo Thank you for asking. It’s been 11 months now since the surgery. Ben a difficult year for me, but so were the couple of years before the surgery.
Current condition: right side of my hearing system is still “plugged up - fullness”, hearing is very muffled. Eustachian tube is probably a main source of this problem. Surgeon says there is nothing more he can do. I also probably have fluid in the inner ear that is part of the fullness sensation. Surgeon said that would be gone 3 months after surgery - not so. There are times when my eustachian opens up and I have an experience that feels like the clouds have parted, the birds are singing, all is great - - - then 10 seconds later I swallow again and it all goes back to being plugged up. Crap. But this sensation tells me that the equipment inside my ear still works - just got to get it unplugged.
So I decided to find a new ENT in my area - someone I could talk with and ask questions - not expecting anything magic words or cures. I’ve had one visit so far and I like him a lot. He knows the surgeon who operated on me and spoke very highly of him. The new ENT feels that he can help me. There are different types of Eustachian tube disfunction and it is kind of a drawn out trial and error process with different low impact meds to hopefully figure it out. If this approach doesn’t work, he said that he has other methods to deal with the Eustachian tube and fluid (surgical).
So - not the outcome I was hoping for - that’s for sure - but I haven’t given up. Question for you - do you have SCDS? If you do, and you ever feel like talking, let me know. I’ve never spoken with anyone who also had SCDS. If you do - my best regards to you. Brent
@@Sandralenin-do4yo Second response from Brent to Sandra. I realize that I didn’t fully answer your question. Have some of my symptoms gone away - or been reduced significantly? The answer is yes! I don’t have autophony anymore (hearing my own voice as being loud and like inside a garbage can). A lot of the sound distortion has gone away - still have some, but infrequently. Hyperacusis is less but still a problem. Tinnitus is still a problem but I’ve learned to ignore it most of the time.
Thankyou for your valuable time to spent replying me with concern, I'm not still diagnosed I have scsd , but my symptoms arised before 2months pulsatile tinnitus and autophony this my nightmare symptoms so that I'm started searching RUclips and googled,