What is SCDS and why does this website exist?

If you are new to this site and want to learn how to get the most from it, this is the place to start
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What is SCDS and why does this website exist?

Post by ToddBradley » Sun Dec 08, 2013 11:13 am

Superior Canal Dehiscence Syndrome (SCDS)

Welcome to SCDS Support, the world’s leading resource for sufferers of superior canal dehiscence syndrome and their friends and families. This is a not-for-profit, ad-free site where everyone is welcome to learn about and discuss this family of debilitating disorders.

If you have come to this site seeking information about SCDS, a great place to start is on our links page. This page will direct you to a multitude of websites that will define SCDS, its treatment, and research. Then come join us on the forum.

SCDS is also sometimes called SSCD (superior semicircular canal dehiscence). It is an inner ear disorder that causes balance and hearing problems. The medical community is still in the early stages of understanding SCDS and how to best treat it, because doctors have only known about the root cause for less than 15 years, since the advent of very high resolution CT scan technology.

Also, people with other related inner ear disorders will find useful information here on posterior semicircular canal dehiscence, Meniere’s disease, and patulous eustachian tube. Because the symptoms for these all overlap, those of us with SCDS often get misdiagnosed with one of the others.

Legal Stuff

All information contained in this web site is intended for informational purposes only and is not intended to replace and should not be interpreted or relied upon as professional advice. It is strongly recommended that you consult a physician to assess individual conditions and needs.

Site History

On February 16, 2003, Mindy Haines was battling SCDS and was tired of searching the web only to find medical reports and jargon. She really wanted to get in touch with someone else who might understand just how miserable this condition is. She felt a true need to share her experiences and find out what others were going through.

On a leap of faith, Mindy created a Yahoo group for SCDS support. She then waited and prayed that others would find it and join. On May 8, 2003, her prayers were answered when the first new member joined the group.

That email discussion list later turned into this full-blown web forum. Since then, the group has expanded to nearly 1000 users who have posted 30,000 messages.

This group has been a true blessing to the many who suffer from or assist someone suffering from SCDS. It has helped many to overcome the feeling that they are alone in this battle. Many who suffer feel that others consider them a crazy hypochondriac who just wants to be lazy or seek attention.This group has helped them discover that their symptoms are real and their suffering can be understood.

This website is a gift from Mindy and those on this list who have graciously given of their time and money to make this group more visible to the general public. We hope and pray that you will find it as helpful as we have. Please browse the links, review the forum (membership is required), and join us by logging into and adding your own comments and questions to our forum.

How to Support the Site

The web hosting costs for this site aren't paid for by any company, doctor, hospital, etc. It's supported 100% by member donations. We've worked hard to keep our ongoing costs as low as possible, but someone has to pay for this server. If you'd like to help, please make a donation of any amount using PayPal or a credit card.

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Misdiagnosed '95 to '08.
Diagnosed SCD Dr. Cass, Sep '08.
Mid-fossa resurfacing Dr. Gianoli, Jan '09 on right. All symptoms resolved.
Trans-mastoid resurfacing Dr. Gianoli, Nov '13 on left + window reinforcement. Didn't fix autophony.
Encephalocele repair with more SCD repair Dr. Gianoli, Feb '15 on left. Autophony mostly eliminated.


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