Forum Mission and Code of Conduct

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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Forum Mission and Code of Conduct

Post by onanoisyboat » Mon Jul 27, 2015 12:34 pm

Welcome to SCDS Support. We're glad you decided to be part of this online community.

The members of this site support people with SCDS as well as their families, friends and caregivers through friendship and the sharing of knowledge and personal experience. Our aim is to help people suffering with SCDS by enabling them to make informed choices about their treatment options, coping skills, available community resources and lifestyle choices. The founding principles of this site are unconditional friendship and the open sharing of knowledge.

Who Can Be a Member
• This web forum is open to everyone with the exception of spammers. To become a member, you must register a username and valid email address, answer some basic registration questions, and adhere to the rest of the code of conduct listed here.
• Most of the members here are people who suffer from superior semicircular canal dehiscence syndrome, or related inner ear disorders. Some members are family or friends of SCDS patients.

Code of Conduct
This applies to the Personal Message (PM) System as well as the main forum.
• This site welcomes everybody who agrees to follow these rules of conduct. We respect people's diverse views and recognize that such views may not be welcomed by others. Therefore members' posts should focus predominantly on the subject matter of SCDS without the heavy addition of any particular theology or religion. We also ask that any subject matter pertaining to controversial subjects not directly related to SCDS be generally avoided in forum topics. We recognize that many members gain inspiration, hope, solace, and relief from their faith and for this reason we have included a section on faith support.
• Members are encouraged to share their knowledge, what they learn from the medical profession and their experience openly but not to make unsubstantiated significant claims about the efficacy of treatments or individual hospitals or surgeons without the supporting data.
• Members are expected to be as unbiased as possible when doctor referrals are requested. It is acceptable to praise a successful surgical experience. It is unacceptable to insist that that surgeon is the best or only surgeon to see. Members should not instigate any form of pressure or repeatedly suggest that a member visits a particular physician.
• Post your questions and comments in the most appropriate section. This will help you receive a more timely response.
• Do not post the same message in different sections of the forum.
• This is meant to be a family-oriented site, so don't use profanity.
• "Flaming" of other participants is unacceptable. We are all different and have varied opinions. Personal attacks against any individual or organization will not be tolerated.
• Treat everyone here with respect and kindness. Treat others as you would want to be treated, remembering that words typed are not always interpreted in the way we intend them to be.
• Spamming in any form, or registering multiple names, is not permitted and will be removed without notice. Spam posts will be deleted and their author banned.
• Don't solicit or post advertising for any business or cause other than SCDS.
• Don't submit posts where legal action and/or legal counsel is involved. This includes posts related to future, ongoing, or past lawsuits. We really don't want this site to ever have to be subpoenaed as evidence.
• You may post about problems or concerns you have with a doctor, facility, or insurer; however the use of the forums to repeatedly attack them is strictly forbidden. Users should be careful to simply post the facts of the situation so as to protect themselves from potential legal problems.
• Don't post anything here that you wouldn't want your employer, family member, doctor, or neighbor to read. Unless they're a spammer, they can become a member of the site just like anyone else. You can easily keep your identity anonymous here by not posting personal information about yourself.
• All users must respect the privacy of other users, keeping in mind that is an internet based forum and what you post here is public. Access to the forum is controlled by membership, but no internet forum can be totally safe from hackers. Members may not post private information such as last name, telephone number, email address, snail mail address, or personal information related to someone else's health without the expressed written consent of the individual in question. This excludes the last name of physicians; and their business information.
• All users must follow US copyright laws when posting information to the forum. Users will be responsible for any copyright issues which arise from their posts. If you live outside the US and don't know our copyright laws, ask someone.
• Most importantly, please remember that all information contained in this web site is intended for informational purposes only. Nothing you read here is intended to replace advice from a licensed medical professional. It is strongly recommended that you consult a physician to assess individual conditions and needs.
• Other than enforcing the above rules, the Administrators and Moderators do not attempt to validate any comments or recommendations provided by participants., its owners, and its contributors are not responsible for any inaccuracies that may result in personal injury, or any type of loss or damage.

Examples of Acceptable and Unacceptable Posts


"My surgeon, Dr. Williams at the University of Wyoming, told me he feels most failed mid-fossa SCD repairs are due to materials that break down a year or two after surgery. That's why he only uses the trans-mastoid approach now."

"My audiologist told me there's a study underway in Germany to find out if there's a connection between polio vaccines and thin skull base."

"I counted six patients of Dr. Alnafoosi on the forum, and all of them said their surgery was a complete success."

"Good luck on tomorrow's surgery, Candace. I'll be praying for you."


"All mid-fossa surgeries fail within 6 months."

"Vaccines cause SCDS. It's been proven, and you're a moron for arguing with the facts."

"Whatever you do, if you're in Australia, don't go to any surgeon other than Dr. Alnafoosi, or you're likely to end up deaf."

"Candace, I don't know if you're a true Christian or not, but I'll be praying for you. Jesus is my personal savior and I know he listens, so you should pray, too. I will ask God to guide Dr. Long's hand as he repairs your dehiscence tomorrow. Also, I've asked the hospital chaplain to come visit you in the ICU after your surgery."


This site is moderated by a team of Moderators who serve the interests of all the members and will seek adherence to our code of conduct. The following is non-exhaustive general indication of how Moderators will go about their responsibilities. Moderators have reasonable discretion in such matters and will take into account length and contribution of membership and any mitigating factors. Moderation will be fair and firm and will err toward an understanding approach. Flaming a Moderator will generally be regarded as quite serious.

Minor transgressions will dealt with by the Moderator replying to the members post, indicating how they have stepped out of line and if necessary asking the member to edit their post. The Moderator also has the option to deal privately with the transgression through the PM system.

More serious transgressions may involve a public warning which stays on the member’s profile for a period of six months. The Moderator may choose to lock the thread concerned or insist that the member edits their offending post. A Moderator may decide to edit the members post but only after having asked the member to do so.

Members having two current (on profile) warnings or who have been suspended in the last six months who make a further transgression can expect to be suspended for a period of time. The reason for the suspension will publicly explained on the forum. If that suspension is longer than one month then it must be agreed by a minimum of two Moderators who will jointly and publicly explain the reason for their decision, the length of such a suspension being at the discretion of the Moderators.

If a member refuses to obey the reasonable instructions of a Moderator wishing to leave transgressing post(s) in place and showing no indication of a desire to comply with this code of conduct a Moderator may form a Quorum of three Moderators (such a Quorum being subject to change as the number of Moderators vary) in order to invoke an indefinite suspension until the member agrees to comply with this code.

Members who have been suspended twice can generally expect to be banned (permanent loss of membership) if they transgress again within twelve months of a second suspension. The Moderators taking the banning decision will explain their decision openly on the forum.

Any Moderator can ban a member with less than six months membership and/or thirty bona fide posts without recourse to other Moderators. Thereafter a Moderator is required to raise a Quorum of three Moderators in order to ban a member.

Spammers getting through the forum’s spam protection will be immediately banned.

For gross or vexatious transgressions the option of an immediate ban (permanent loss of membership) is open to Moderators. Examples of gross or vexatious transgressions include posts designed to maliciously inflict suffering or harm, containing gross indecency, for personal financial gain, with highly insulting personal content, hate posts, and posts against vulnerable members or minority groups designed to create conflict or bullying of vulnerable members.

Reporting Transgressions

If you believe that this code of conduct has been broken please report the post to the moderation team using the exclamation mark in the bottom RH corner of the post. If you believe a transgression has taken place on the PM system please send a copy of the PM to a Moderator.

Route of Appeal

No route of appeal is available for informal public or private warnings by a Moderator where no warning is placed on the members’ profile.

A member may appeal a formal profile warning by approaching another Moderator in writing with the grounds for their appeal. This Moderator will then agree to a response with at least one other Moderator as well as the original warning Moderator.

Members who wish to appeal during suspension may do so by writing to and noting the Moderator they wish their appeal to be heard by.

Members will under normal circumstances be given a written reply to their appeal from the Moderator they chose to conduct this within fourteen days.

Bans or indefinite suspensions will already have been agreed by a Quorum of Moderators as noted above and are therefore not subject to appeal. This appeal process will be emailed to any suspended member at the beginning of their suspension.

[Updated 27-07-15]


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