Topic: Off Balance, Sounds unbearable - SCD in NYT
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SCD - Superior Canal Dehiscence
Although the woman interviewed below did not seem to have hyperacusis to the max, in a general way, it was more from internal processes, it seems. Adding that as a afterthought and I can't even figure out how to make it a real sentence. Oh, well.
Today's NYT has an excellent article about this (for once, they get something right about a complex medical condition -- although they do omit the fact that certain infections can contribute to it, it's understandable they don't go into that kind of depth).
I wish I could say I had no reason to have learned as much about this as possible. I was diagnosed with this years ago - but no help in sight in my case for various reasons. Still, to help others who may be able to access help, start below.
Also keep in mind that lyme and TBD can bring enormously severe hyperacusis and other vestibular symptoms that can be equally rough, just not SCD. Most doctors, even ear specialists have no clue about SCD. The experiences of the woman below mirrored my own early on with doctors.
Only a very - very - specific CT scan and other very specific diagnostics can help in diagnosis. Most testing techniques cannot determine this.
Medical Mysteries: Doctors puzzled by woman’s dizziness and amplified body sounds
- By Sandra G. Boodman - The New York Times - November 24, 2014
Excerpts:
" . . . a medical tuning fork, an instrument used to assess the nerves outside the brain and spinal cord. When Zee tapped her ankle bone, Miller told him she felt nothing but heard the sound vibrating loudly in her head. . . . "
. . superior canal dehiscence syndrome, or SCDS. Her increased sensitivity to sounds, along with the vertigo, unsteadiness, abnormal eye movements and visual disturbances were all symptoms of the recently identified disorder.
The syndrome results from a dehiscence — a thinning or a hole in the temporal bone, which covers the fluid-filled canal in the inner ear.
The hole allows the fluid, which helps control balance, to touch the brain, transmitting sounds such as a heartbeat, a voice or the ordinarily imperceptible sound of the patient’s eyeballs as they move.
In essence, the body’s internal gyroscope is damaged, which affects balance, vision and hearing. In Miller’s case, the concussion she suffered in 2003 or an earlier head injury at age 15 when she was thrown from a horse may have triggered the problem. . . ."
Full article at link above. --------------------------------------------------
There is also a SCD links set within the Tinnitus thread -- I'll add those to this later.
Keep in mind if surgery is considered -- work with LLMD regarding the common used of steroids with surgery. That can be devastating for some with lyme.
The brain literally has to be moved to reach this part of the ear system. That can also present challenges for someone with lyme / TBD.
Still, if the bone structure is broken, with holes in it, that's a major thing to see how it might be mended as safely as possible (if one is lucky enough to have an insurance that covers the very few doctors in the U.S. who are adequately trained to do this technique). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Saving this space for the official SCD links set.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic