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ABOUT RED RED stands for Rigid External Distraction and is a procedure designed to correct (in part) a number of craniofacial syndromes including Apert's, Pfieffer's, and Crouzon's. Before RED, "craniofacial kids" always had a traditional midface advancement, the La Forte III procedure, where the entire midface was isolated and advanced in surgery. While this procedure did often provide satisfactory results, the length and complexity of the surgery, along with the long recovery time required of the patient, made this procedure seem less than ideal. The RED, as everyone who's been through it knows, is hardly a fun or easy process. However, the concept of moving the midface bone forward gradually and allowing new bone to form between the gaps is widely considered to be a safer method with more stable results than the traditional LaFort III procedure. Because I have not had a traditional midface advancement, I don't know how the patient experience of the "old" way compares with RED. However, most people that I have talked to agree that RED is more effective in maintaining long term results. |
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ABOUT THE PROCEDURE The RED device is attached while in surgery. Screws attach the halo-like device to the head, and pins and/or wires under the skin attached the vertical crossbar that runs in front of the center of the face to the skull. It is rather complicated to describe accurately with words, so I suggest that anyone considering this have a good conversation with their surgeon. How the device is attached to the skull often depends on the individual's case. After the surgery, the screws are then turned a little bit each day (or several times a day) with a special wrench, gradually advancing the midface forward. The screw-turning continues for however long the surgeon "prescribes" to attain the goal. This is usually a few weeks. Once the turning is stopped, the patient must (patiently) continue to wear bulky device for another month as a retention device. Obviously, this doesn't sound fun, and to be honest, it's not. However, several people, including myself, have been through this procedure and can tell you that all of this was worth it. This site is to help you as much as possible to be comfortable during this procedure. PLEASE talk to your surgeon about any questions you have about RED, and never be afraid to get a second, third, or fourth opinion. This is YOUR health, so you are entitled to any and all information you want. |
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A WARNING ABOUT BIO-MEDICAL MARKETING Nearly all of us have probably read a brochure or article telling us how RED is just so great and wonderfully patient-friendly. In reality, however, the RED is far from patient-friendly and is not something to be taken lightly. I don't say this to scare or shock anyone, but only to offer accurate information. Contrary to what these articles would have you believe, you cannot simply get back to "normal life" right after surgery. You should definitely consider taking a 2 month break from "normal life" and simply focus on recovering. Taking time off from middle school (way back when) was the obvious thing to do. The process is hardly "simple" or "pain free." You also need to be aware that results are not completely predictable, especially since most of us with craniofacial syndromes are not perfectly symmetrical. Notice that all of the before-and-after pictures in RED-related publications tend to be from patients without a syndrome who already looked normal before surgery. While you are most certainly beautiful inside and out both before and after RED, don't expect to come out of the procedure looking completely "normal." You'll probably look "more normal" and staring in public places might decrease, but people will probably still be able to tell that you're different (aka "special"... I know, you hate that word too...). I definitely stinks that we have to go through all of this and STILL get stared at while other people are simply born and never have to deal with it! But that's life. And who ever said life was fair? |
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