re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)

I have worked with notaries I before and she is great but go to Texas children's. It's just better. I think notariAni might say the same
It's your kid. You take the kid to the pro's from Dover

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I'm probably being unreasonable in thinking this is fricking ridiculous incompetence...but this is pretty fricking irritating

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Your irritation is justified. I'm very familiar with and sympathetic to the demands vs time constraints in the world of health care, but I would be pissed, too.

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I've done enough research at this point to know that lambdoid synostosis can be corrected with endoscopic surgery

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I would seriously caution you against basing your choice of surgeon primarily upon whether or not he/she will be using an endoscopic approach.

In fact, if my surgeon recommended an endoscopic approach, I would DEFINITELY obtain a 2nd opinion. The endoscopic approach is reasonable in certain scenarios, but it has its disadvantages. For one, the repair you get may not last, as the endoscopic method limits the amount (width, really) of bone that can be removed. So the risk is that only a small strip can be removed, then the bones grow back together and fuse, and ya'll are back to square one.

Secondly, the limited incisions "handcuff" the surgeons ability to maneuver, which can lead to a longer operation. This is particularly true when trying to perform endoscopic procedures of any kind around a curved surface, such as the back of the skull.

Finally, the visibility is inherently limited by the scope. This creates a higher risk for bleeding.

Long story short, endoscopic suture release has a narrow application. The traditional method is tried and true, so don't let the thought of "more invasive" (as compared to endoscopic) deceive you into doubting its efficacy and safety.

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they want to wait until the fricking appointment on the 17th to discuss it. /quote]

As frustrating as this has to be for you, thats actually an encouraging implication. If your child's condition was severe/emergent, I guarantee they would have had you come in that day. Neurosurgeons take elevated intracranial pressure very, very, very seriously, and they will operate any hour of the day/night/weekend/holiday to fix it.

They probably want to meet face to face to make sure that everything is discussed thoroughly, all questions/concerns are addressed, and everyone is on the same page.

[quote]I feel like this shite is going to be pushed back way too late in his life.

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So all that being said, I know the wait feels like an eternity. But, if your son even needs an operation, there is still PLENTY of time.

It wouldn't hurt to go ahead and set up your 2nd opinion, though.

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G.E. Ghalli

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OMFS doc... This dude is a freaking artist... repairs cleft palettes and other similar procedures on babies still in the womb.

I have seen his work before and after on people that blew their faces off with shotguns.

Dr. Nanda (neurosurgeon) is another world renowned surgeon at University Health (LSUHSC)in Shreveport

Although Notarianni has taken over most of the Peds stuff. Any of these docs would be excellent choices and not far far away.

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I would seriously caution you against basing your choice of surgeon primarily upon whether or not he/she will be using an endoscopic approach.

In fact, if my surgeon recommended an endoscopic approach, I would DEFINITELY obtain a 2nd opinion. The endoscopic approach is reasonable in certain scenarios, but it has its disadvantages. For one, the repair you get may not last, as the endoscopic method limits the amount (width, really) of bone that can be removed. So the risk is that only a small strip can be removed, then the bones grow back together and fuse, and ya'll are back to square one.

Secondly, the limited incisions "handcuff" the surgeons ability to maneuver, which can lead to a longer operation. This is particularly true when trying to perform endoscopic procedures of any kind around a curved surface, such as the back of the skull.

Finally, the visibility is inherently limited by the scope. This creates a higher risk for bleeding.

Long story short, endoscopic suture release has a narrow application. The traditional method is tried and true, so don't let the thought of "more invasive" (as compared to endoscopic) deceive you into doubting its efficacy and safety.

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Thanks for that tip. That's the kind of info you can't really find online amongst the marketing for alternative methods. It's just been difficult for us to see the upside of the "tried and true" method, when it appears to involve a blood transfusion and 7 extra nights in a hospital. At the end of the day, though, I just want whatever has the lowest risk of complications and the highest chance of success. Not sure if I can have both.

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As frustrating as this has to be for you, thats actually an encouraging implication. If your child's condition was severe/emergent, I guarantee they would have had you come in that day. Neurosurgeons take elevated intracranial pressure very, very, very seriously, and they will operate any hour of the day/night/weekend/holiday to fix it.

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I hope that is the case, but I haven't even received confirmation that the images have been looked at by a trained eye at this point, only that the files are finally at the correct location.

I'm sure these Surgeons are great, but I would go with somebody who is is trained in craniosynistosis specific surgery, and most of them are plastic surgeons (the pedi neurosurgeons are there to make the cuts and let the craniomaillofacial guys do the shaping.

Well, today was the appointment, where, according to the nurse on the phone a few weeks ago, the doctor was to go over the CT scan results -- the ones he had in his possession for 3 weeks -- and discuss our options going forward, and possibly schedule a surgery date.

Nope, none of that happened. Instead, he said that this is an extremely rare form of craniosynostosis that he knows little about. The appointment consisted of him telling us he will be calling us back with a referral to the Children's Hospital in New Orleans to see Dr. Lori McBride. If we don't hear from him "within a week or so," we should call him to follow up for the referral and appointment date. Still need to find out for myself if they are even in my fricking network.

We waited 3 weeks for something he could've told us over the phone in 30 seconds. Instead, it was another $60 copay out of pocket for us, another insurance check for him, and nearly a month of time thrown away. My wife is a teacher, had the summer off, and had he just looked at the CT scan and did a referral, we might've actually had a surgery date by now that could coincide with my wife's summer time off. Pretty certain that another week to schedule the appointment, plus god knows how far out the appointment will be scheduled, with no actual surgery date in sight, that it'll be well into fall before anything happens.

Beyond livid.

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Beyond livid.

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And you have every right to be. Hopefully, you get to Lori soon and you can move forward.

Dr. McBride is a she, but she's great! She's the neurosurgeon, and they'll also involve plastics. Endoscopic versus traditional will be determined from which of the sutures are fused. If it's simply sagittal, endoscopic is better, if it's 2 or more fused sutures, traditional May be better.