Re: CT scan results not good

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Thanks for this info. I have been in contact with another doctor in Dallas as well. He seems to think 9 months would be a good time to correct this. I am in the process of trying to get copies of 's CT scan so that he can review it. I also have an offer from a doc in NYC to review her CT as well. Our local doctor here still can't work us in any sooner. I am trying to see if I can get my insurance company to waive the out of network fees. Wish me luck on that one! and hardysmom <stephanie_bonebrake@...> wrote: I haven't posted in a long time. My daughter had scaphy at birth. By 3 mo, her pediatricians thought it was cranio.I know it is stressful, but your attitude is great. At the plastic/neuro surgeons office,

after seeing all of the kids with serious facial syndromes I was grateful that we were just dealing with an easily corrected problem. I am sure you know this by now, but the only reason to "rush" into the surgeon (from a medical standpoint) is if is pushing 6 mo. They don't worry about brain development until the child is over 1, so as long as the surgery is done before then, there isn't a rush. The less invasive surgery is only done on the youngest kids. After 6 mo, they do the "big" surgery. While the first is less of an ordeal in the OR, the effort in recovery can be greater (you wear a helmet with bi-weekly checks) The more serious surgery LOOKS awful, but when you are done, you are usually done, which has benefits. I think there are pros and cons both ways, but whichever route, in 6 mo it will just be a memory and will be great. One thing- if you don't live in a MAJOR city, you might find that

your local surgeon doesn't do the orthoscopic procedure EVEN THOUGH your child qualifies for the protocal by age. This was our experience in Oklahoma City. In that case, get a second opinion. Blythe was 3.5 mo and the OKC doctor was in no rush to see us whereas we felt like time was running out if we wanted to do the orthoscopic procedure. It was frustrating. We went to Dallas (Dr Craig Hobar at Childrens) for the second opinion and, in the end, would have opted for the less-invasive surgery, even though the post-op care would have required a lot of travelling. It is important that craniosynostosis is a BIG part of the surgeons practice, not that something they see as a interesting side-bar to a plastic surgery/neuro practice. I thing the surgeon in Dallas did more cranio surgeries a month than the surgeon on Oklahoma did a year. This isn't to bash the doctor in OKC who I think was a committed surgeon. It is just a rare

condition and a small state.Take care. >> I just wanted to let you all know that 's CT scan results came back positive for craniosynostosis. It looks like we'll be gearing up for surgery instead of just a band. We have an appt with the neurosurgeon on March 9.> > & >

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