SCDS - The Musician who heard too much

Documentary on a condition called superior semicircular canal dehiscence syndrome - where someone can hear themselves very loudly in their head, and hear their eyes move.

For sufferers of this condition seeking support, information or tips on treatment please visit http://scdssupport.org.

• Category

  Education

[hypernation2007]

Inspiring and well researched stuff. The power of the internet.

[hornaplenty]

Wow-what a trek. Congratulations on your handling it all these years. May you continue to profit from this very special operation for many decades to come!

[Michael M]

This report is really impressing. There is the hope, that a lot of similar suffering people will see it for there salutary !A great Job, Adrian !

[kittttygirl5]

That surgery must have cost a fortune

[Dick Purdy]

My grandson is undergoing testing to determine if this is his condition. His auditory problem is similar to the musician's. Unfortunately his insurance provider indicates that Ryan's policy will not qualify him for treatment at Johns Hopkins. A physician in Wilmington, Delaware, will be doing the surgery - if that is the outcome of the diagnosis.

[62kenbob]

i suffered from scds for a couple years,my doctors had no idea what was wrong with me till i ran into a friend at local supermarket and when i told her what was going on in my head she claimed she just saw a show about what i described.,it was on medical mysteries,i researched it and found scds was exactly what i had and a trip to univ. of penn hospitol confirmed it.without this show i would still be suffering,thanks

[Duey Ramone]

Ive got PET as well from all the fluid drainage into the middle ear. Both clear and purulent, and occasionally bloodstained. Anyone suffering, message me, love to swap some war stories. Best of luck to you all.

[Duey Ramone]

Was just finally diagnosed with this after nearly four years of incapacitating headaches, loss of balance, and constant drainage into my sinuses and recurrent infections that would resemble meningitis symptoms every couple weeks. Was missed completely at the Mayo Clinic, and by numerous ENT's, Neurologists etc. I had to literally beg for another appointment to finally get a high resolution CT of my temporal bones because of a misdiagnosis of "Migraine's" and "It's all in your head."

[xohearts16]

Wow, what he was saying about hearing his voice like a kazoo actually happened to me when I was sick with a bad sinus infection. Every time I talked I heard a buzzing in my head and I felt the vibration. It was very strange.

[Fran Cambridge]

this is a great video. It is sooo hard to explain to people what it is like for sufferers of this condition. My husband had a hit to the head a few years ago and has had this ever since and it is completely debilitating.

[curlyharpy]

Update: I had the procedure done in January. It was four times more severe than the CT revealed. The hole in the temporal bone was so large that a portion of the brain had fallen into it. My case is now being published in the medical journals, and was featured in a recent symposium on the east coast. Good news: I AM BETTER! My doctor said it will take 6 month to a year for full recovery, and sometimes it's two steps forward and one step back, but I am improving!

[Todd Bradley]

I get relief from my head position changing. That's a symptom of both PET and SCDS.