TMJ/ TMD Journal

Sunday, January 20, 2013

Diagnosis Journey - From 1997 to 2013

Well, here I am back again...just wanted to let folks know I was still searching for what is causing all my symptoms. Turns out it may not have been all due to TMJ.

The CT is revealing something called Superior Canal Dehiscence http://en.wikipedia.org/wiki/Superior_canal_dehiscence

This definition is from Wikipedia -

Superior canal dehiscence syndrome (SCDS) is a rare medical condition of the inner ear, first described in 1998 by Dr. Lloyd B. Minor of Johns Hopkins University, Baltimore, USA,[1] leading to hearing and balance disorders in those affected. [2] [3][4] The symptoms are caused by a thinning or complete absence of the part of the temporal bone overlying the superior semicircular canal of the vestibular system. This may result from slow erosion of the bone or physical trauma to the skull and there is evidence that the defect or susceptibility is congenital.[5][6]

So if you are suffering from unexplained symptoms you might want to check on the above link to see if you have this problem. Apparently it is very rare - could be a genetic defect or head trauma. It has also only been discovered since the late 1990's. It is hard to diagnose because many doctors have no idea it exists.

My CT scan reveals I have it on both sides. And right now either you learn to live with it or get the surgery which is quite invasive. Lots of links on SCDS out there and there is a support forum as well. I have joined under my pen name jan springer. Look me up if you have SCDS or think you might have it.

http://www.scdssupport.org/

I am happy and finally feel empowered to know what I do have but not happy with the types of options available for a possible cure. For now I will keep researching and hoping for a cutting edge alternative that doesn't have a chance of making things worse or making you go deaf in that ear after surgery.

Maybe I was supposed to have this affliction so that I can write a book about it and educate folks. Yes, maybe I will write a book... :-)

Hugs!

jan




Posted by Jan Springer, Erotic Romance Author :: 7:54 AM :: 0 Comments:

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