ct scan or meet nuerosurgeon first?

[EtMom]

Hey, Just wanted to do a poll of sorts.
Did you have ct scans done and then meet with nuerosurgeon team or did you meet with them and then they ordered the tests?

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In talking to Childrens Medical Center in Hartford they said they meet first then do tests based on that (which seems weird to me, so that is why I ask. I hate to go in there, they say oh nothing is wrong and then have this in the back of my head we should have had a test)
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In reading a lot of forum messages, it seems they would want ot check for ICP so they would want to do a ct scan no matter what - ie no matter what the NS thought by observing in person...ya think that is correct?
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I have read in the forums some prefer no cat scan prior to metting because of radiation. Fair enough. Anyone heard of a nuerosurgeon incorrcetly diagnosing?..I have seen posts of pedtaricans and lab tech reports read wrong..but someone who deals with this every day like a NS?
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Tks

[Nicholas' Mom]

We were pretty sure Nicholas had metopic cranio (his forehead was very triangular), but our pediatrician said we needed tests to verify it before we got a referral to a NS. We had simple X-rays which showed the suture closed which allowed us to get the referral. The NS then scheduled us for an MRI within a few days to rule out ICP (we did this before seeing him). Soon after the MRI, we saw both the NS and PS. We never had a CT scan. Our NS said he likes to avoid them because of the radiation and only orders them when absolutely necessary. Best of luck to you.

[Janet]

At Sick Kids in Toronto, the very first appointment we had was with the NS, then we met the PS then we had the scan.

[xl1200c]

Our pediatrician scheduled us for a CT scan with a consultation with the neuro 3 days later. I have often heard of neuros diagnosing without a CT. I think in a case where cranio is obvious and surgery is soon, it might make sense to skip the CT, but otherwise it might make sense to have one just to be sure of what is happening in there. (sorry I'm not more decisive...)

I have not heard of a neurosurgeon misdiagnosing (saying there's no cranio when there is). I have heard of them being surprised that more sutures were closed than they thought. We were misdiagnosed by our pediatrician due to an incorrect radiologist report so initially our neurosurgeon's office thought there was no issue. When we pushed them to view the images we were diagnosed.

[melsch]

Logan went to see the NS first, then they ordered the CT. He was really young so we had to wait another month before the CT, but his situation was painfully obvious that it was metopic. Our doctor took one look and knew why we were there without asking us a question.

[EmmaLacey]

In our case (which I think will be what happens to you) we had our meeting with the team (which consists of about 6 doctors). They all come into the room at once with their clipboards and white coats. Its kind of intimidating at first but they were all very nice, very matter of fact like since they do this every day. A Plastic Surgeon (named Dr. Castiglione), the NS who is Dr. Kanev and others. Dr. Kanev wasn't there when we had our first appointment but I think that is rare, normally he is there. The PS (Dr. Castigilone) did most of the talking to us and its funny because he didn't end up being involved in Emma's surgery at all. We had to wait to meet the NS until 2 days before surgery, but I think that is rare also.
Here is a link to CCMC hospital that shows all the doctors involved in the craniofacial team. Because there are other craniofacial disorders (besides craniosynostosis - like cleft palate for example) there is a dentist, a development specialist, a hearing specialist (I think) and an eye doctor.
http://www.ccmckids.org/doctor/SpecialtyView.asp?selSpecialtyID=6

If the above link doesn't work - just go to ccmckids.org and use the navigation to "find a doctor" and then go down to "find a doctor by specialty" and you'll see craniofacial in the list. For some reason Dr. Kanev isn't in the list but you can find him by typing his name in the "find the Dr. link". He looks like Santa Claus!

Anyways, once you meet with the team they will determine if any tests are necessary. They will probably be scheduled on a different day. At least that's what they told me on the phone, but I suppose you could ask since you are there if there is any chance to do the tests (CT scan or whatever they decide) that day. It never hurts to ask. In our case, I guess it was obvious that she had sagittal and so they didn't need to expose her to the radiation. I even said "don't you need to do a scan or something to be sure?" and they said "No, its clear to us and Dr. Kanev doesn't require it." It is possible with Evie that they may be able to determine without the test since they are experts and see this all the time. If they can't determine just by looking at her (and feeling her head) they will probably order a test. Like I said before you might have to go back for the test on a different day. Hopefully, since she is older, they will make an exception and have the test done that day. It would suck to have to then wait another long time for the test. That is how I think it will go. I fully expected to have them say we needed to reschedule a test and that we wouldn't have any answers that day. But, we knew as soon as they saw her that she had it and that surgery was needed. You will also meet Kerri that day (hopefully). She is an RN and is the craniofacial program director. She is really really nice. You can tell her you kind of "know" me and mention Emma.

Hopefully, that answers your questions. Good luck and we will all be here for you in the meantime.

[jenniferann75]

In our situation, our pediatrician called the neurosurgeon about our case and she (the NS) requested that we get the CT scan and send it to her. Of course she is 2 1/2 hours away. I guess she wanted to see the scan before making us drive there. Anyway, as soon as she received it, she had us come in. He had surgery one week later.

[EmmaLacey]

Wow Jennifer - 1 week later. Didn't give you much time to prepare - you must have been freaking out!! I assume you weren't on craniokids until after surgery?

[JudySH]

We are seeing the team tomorrow :nervous(an NS and PS at Children's Hospital Boston) without having a CT, xray, etc. first. After that, I guess they will order any tests that are needed.