I'm planning to have an operation for SSCD with Dr.Poe in Boston.
Anyone had this op.done with Dr.Poe or elswhere ?

Thanks Jim, that's encouraging news...  I also think I'm lucky to have been
diagnosed.

Despite the fact that I pointed out the probability of having this condition
to a consultant some 3 years ago - he decided that I was moving my eyes
deliberately in response to sudden noises and my own voice - he was a bit of
a dinosaur.  I eventually tracked down a consultant doing research into this
condition in the UK and low and behold the scans showed up a bi-lateral
dehiscence but worse on the right.

For those who are interested, the symptoms are (on the side with the more
severe condition)...

Felling of fullness in the ear, own voice very very loud and distorted -
mainly the low frequencies, own voice causes sudden flicks of the eyes
making it look like everything jumps or a feeling that your head is rotating
over to the left (in my case), loud external sounds also cause the same
effect, ability to hear joint noise, footsteps, stomach rumbles, muscle
noise, even eye movements as if inside the ear. The inability to tell how
loudly you are speaking because even speaking quietly is deafening which
makes conversation in noisy places impossible

Tensing stomach muscles tightly resolves the condition and everything
returns to normal - except the T.  Something to do with the pressure with
the skull I believe as lowering my head to horizontal or lower also resolves
the condition.

Kevin, After I did my procedure with Dr. Poe I tried to be too active too
quickly and I think it caused  whatever had been done to revert back. I
have the syndrome as well as a number of small holes in the inner ear next
to the dura. Dr. Poe tried to patch them from the side by peeling my ear
back and patching it from the side, but he did not have a clear view. The
substance he used to patch it has now moved and I can feel it in my head
and inner ear. I also hear my voice very loudly when I speak and now when
I touch my ear or that area it makes me dizzy and can make me lose
balance. I am a singer and it has made my job very diificult at best. The
next step according to him where there might be a better chance for
success is to do a spinal tap, drill thru the skull directly above it,
then patch it. I am scared to do this as the first operation really took
it out of me and the next procedure would take  a serious  amount of time
to get life back in order. Surgery just rocks your world. I think I have
chosen to live with it, rather than go back in.

JOn Pousette-Dart