One night, we decided to Google "trigonocephaly treatments" and we came across the CranioFacial Center in Dallas, TX. Instantly, we knew it was a long-shot, because there is no way our insurance will approve us to go all the way to Dallas for treatment when it's available here in Buffalo. We decided to investigate anyway.
As we read about the center, we discovered that the surgeon is dedicated to only treat craniofacial conditions. Unlike the Plastic Surgeon up here who would've been partnered w/ the Pediatric Neurosurgeon, and she does several boob jobs a year, Dr. Jeffrey Fearon only performs craniofacial surgeries. Dr. Fearon does around 100 surgeries a year, compared to 5 a year here in Buffalo.
The following is from Dr. Fearon's website: www.thecraniofacialcenter.org, and is a detailed description of the surgery to correct Joey's condition. Caution: the contents may sound graphic to some
The Dallas Remodeling Procedure.
In my practice, the surgery to correct a single suture craniosynostosis is always performed with both a craniofacial surgeon and a pediatric neurosurgeon, both of whom are present for the entire operation. I believe that having two experienced surgeons always with the child, improves the speed and safety of the operation. In addition, only pediatric anesthesiologist’s with extensive craniofacial surgical experience are typically selected. During the operation, the family is given hourly updates as to their child’s condition. The average correction takes just under four hours from start to finish, although the actual surgical time is much shorter, averaging about an hour and 45 minutes (about half of the total time in the operating room is spent preparing the child for surgery, and then slowly waking the child up). We do not shave any hair for surgery, although many centers still prefer to do so. The surgery is performed though an incision that is made from ear to ear across the very top of the head. Many years ago, I developed a wavy, “zigzag” incision to replace the standard straight-line incision, so that when children get their hair wet it won’t part on a straight-line scar and make the scar obvious (see Publications #10). Recently, I have shortened the length of this incision (starting it well above the ears) so that the scar will be even less noticeable.
The goal of the operation is to remove the areas of skull that were affected by the fused suture and rebuild the skull into a normal shape (which is slightly over-corrected to compensate for the abnormal growth that that will occur). In order to rebuild the skull, it is necessary to somehow hold the bones together, so that they can heal. Most surgeons use plates and screws to set the bones, however, I prefer to use dissolving stitches for a number of reasons. To begin with, after operating on children who had initially undergone surgery at other centers, we discovered that when other surgeons used metal plates and screws to hold the skull bones together, with the subsequent growth of the skull these plates will end up on the inside of the skull with the screws poking into the brain (see Publications #12). Studies elsewhere have noted the same thing happens with some of the dissolving plates and screws: they can also end up inside the skull against the brain before they dissolve. While I am not aware of any cases in which this has caused a problem I have decided to use dissolving stitches to avoid any potential problems (see Publications #20). I have also found that when plates and screws do dissolve, they can end up leaving a weak space inside of the skull bones that can make additional operations (if needed) much more technically difficult. For this reason, I feel fairly strongly that they should be avoided in children with syndromes (who are most likely to need additional operations) such as Apert, Crouzon and Pfeiffer, etc. Finally, in a small percentage of cases, dissolving plates and screws will melt into a liquid that collects in a pocket under the skin, before it opens a hole on the face or scalp and drains out. Given all these potential problems, I am convinced that while it is technically more difficult to use dissolving sutures to rebuild a skull instead of using plates and screws, it is what I would want for my own child.
At the end of the operation, we close the scalp with dissolving stitches. We never use metal staples or non-dissolving sutures, as these can hurt when they are removed. We also do not put any bandages on the child, and do not use any drainage tubes (I believe that these tubes make the recovery actually slightly more complicated). Instead, the child is given a shampoo before we leave the room and the hair is combed over the incision. Many surgeons do like to use head wrap bandages; this is not “wrong” in my opinion, but these head wraps are unnecessary.
The child usually will spend one night in the pediatric intensive care unit and are transferred to the floor the following day. While most of my patients might be ready to leave the hospital in about 24 hours, I recommend all stay for at least two nights total in the hospital. The risks of the surgery are very small at the most experienced centers. In a published report (see Publications #15) looking at a combined experience with our center and one other center, we found that no infections occurred in infants undergoing operations for craniosynostosis (although this is certainly possible).
Nevertheless, we have a policy of playing soft music in the child’s room after surgery because a study showed that soft music relaxes children, and reduces the amount of pain that a child will report feeling after the operation (it also reduces the amount of pain medicine needed).
At our center, I routinely give infants a drug called erythropoietin before surgery (see Procrit Information), which typically raises a child’s blood levels to help prevent the need for blood transfusions, hopefully improving the overall safety of the operation (see Publications #19 and #25). I also use a “cell-saver” that sucks up most all of the blood lost during the operation, filters it, and lets us give the baby back it’s own blood. These two different techniques (and many other smaller things that are also done) when combined together make blood transfusions fairly uncommon in my practice. Some research suggests that patients who get blood transfusions are more likely to get infections after surgery.
Could this be? Could he be the answer to our prayers? We sent him an email detailing our journey thus far, along w/ pictures of Joey's head at different angles so that he could see what we were dealing with. And we waited for a phone call back.
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