Incorrect Diagnosis

[Scotwr]

Has anyone ever heard of a CT scan showing that all sutures are open and then there turning out to be another problem? I am wondering because my son's x-ray showed a closure, then his Ct showed none, but there is still this flat spot that is there regardless. What else could it be? The doctor at Duke is going to review the scan, but I wonder if maybe the local doc here doesn't know enough about ped neuro or if the x-ray was just wrong. Pr if there is something else going on. I am rather confused now. Should I still be worried?

[snickers9246]

Was it a pedi Neuro that viewed the scan? Was is a 3D scan? They could see Holly's closure in both her X-Ray and Scan even though it was a regular scan, I'm posting it for you. With another Dr viewing it I'm sure you'll have a correct diagnoses. Would the flat spot be positional?? It could still beopen and possibly starting to fuse?? Hopefully you'll get the answers you need soon so your roller coaster ride will be over and you can enjoy your little Fella without so much worry!!! These are of course pics I took of our scan sheet myself, so the quality isn't good!! :giggle

http://i3.photobucket.com/albums/y89/snickers9246/HollysHead007.jpg

[Scotwr]

No, it was just a regular neurologist that looked at the scan. And I don't think it was a 3-D scan either, just a regular scan. The flat spot on his head can't be from laying on it, cuz he never sleeps on his belly. He sleeps on his back only and his head almost always falls to his right, so you would think he would have a flat spot on that side, but its on the other.

[Jennifer]

It could be so many things. The X-ray could be wrong (or actually the person that read the X-ray). I've heard of many misdiagnosis based off of an X-ray. OR it could be that the Nuerologist read the CT wrong? Or the CT could be right (though I'd have it read by a NS to be sure) and it could be something totally different. I believe the NS will be able to give you more answers on that.....maybe it's just how his cute little skull grows?

[Mom2William]

Pam- As hard as it is to wait...let the Pediatric Neuro at Duke read the CT scan and as this is his specialty, he should be able to tell you exactly. He could tell by our xray due to other signs (scalloping on the skull) and the 3-d Ct confirmed. Will you also be taking Luke with you for consult, so the PN can feel/see his flat spot?
It is even harder not to worry- but can you hold out until the Duke visit? I know, impossible right?! We moms are great at worrying!!

[Scotwr]

Well, I know I have no choice but to wait so I will do that. I guess I was just wondering if it is actually possible to be wrong. Should I even feel relived that the CT showed no closures or is that just wishful thinking? Is it useless until I have the Duke docs see him?

[snickers9246]

Does he still have his soft spot? I think at about 3 months it is supposed to be about the size of a thumbprint or close to it, can you feel it ata ll? Holly was my third and my hubby's first, so I tried to show him her soft spot cause he knew nothing of babies, I couldn't find it! LOL!! Sure made me look like a smart Mommy!! :)

[Scotwr]

His soft spot in the front is still there. It is fairly easily detected.

[jessie2005]

Ok...when you guys mention pediatric NS...I have seen a craniofacial plastic surgeon. Should I see a NS too? They said a NS would be in on the surgery but a craniofacial surgeon is who I have been dealing with. Please advise.

[Katie]

I've heard of cases that were diagnosed as positional plagiocephaly end up being cranio, but that diagnosis was usually before a CT scan. X-rays unfortunately are very difficult to make a true diagnosis with, as they just aren't as clear as CT scans. I am glad that the scan is being sent over to Duke, and I hope that a second opinion helps to ease your mind. The waiting is so incredibly hard :hugg

[Katie]

Ok...when you guys mention pediatric NS...I have seen a craniofacial plastic surgeon. Should I see a NS too? They said a NS would be in on the surgery but a craniofacial surgeon is who I have been dealing with. Please advise.

We saw the NS first who sent us to the craniofacial surgeon. I think it really depends on the individual case, and your Dr's personal preferance. It would certainly be a good idea to ask the craniofacial surgeon if he/she works with a neurosurgeon, and weather or not you all should go see one. Maybe give them a call?

[snickers9246]

My Dr (The one that diagnosed Holly) was a craniofacial PS. We also ahd a NS for the surgery, but the cranio Dr was the one who gave the official diagnoses. I wouldn't be worried. The NS will look as well, but our diagnoses came from the PS.

[Jennifer]

Ok...when you guys mention pediatric NS...I have seen a craniofacial plastic surgeon. Should I see a NS too? They said a NS would be in on the surgery but a craniofacial surgeon is who I have been dealing with. Please advise.
Good question! I think different teams work differently. Some say the NS is there just to moniter the brain and head while the PS is doing the work. In our case, the NS made all the calls, helped with reshaping etc....I see our NS more than the PS. In some, the NS doesn't see the child after 6 months post op.
Personally, I would meet with the NS also-- they are pretty important in the whole thing (if the skull is being cut and stuff) Also, I believe they would be the ones to see if they can tell if there is any pressure on the brain (by looking at the CT).......

[snickers9246]

Our PS told us that he opens, the NS removed the skull, hands it to him, he does all the reshaping etc, and re-atttachs it while the NS watches. They're all different eh??

[Lauren]

We only had a NS. Our pedi was the one initially concerned and sent us to a friend of his that he got to know during his residency (actually taking care of kids following surgery with our NS). We never knew we should talk to a PS, but it all worked out okay.

[plukids]

We had a cranial facial plastic surgeon and a neurosurgeon. We actually met the NS first and he ordered the CT and diagnosed and then we met the CFS. We had a preop visit with each and they worked together in the OR. We are doing followups with both as well.

I am guessing that your NS at Duke will enlighten you more. I "think" if all sutures are open then plagiocephaly may be the diagnosis. It is my understanding the positional plagiocephaly can be from intrauterine positioning as well as extrauterine. Just drawing from previous readings but I believe that to be true. Here's a link to an article on plagio:
http://www.cappskids.org/PlagioFAQ.htm
Keep us posted!! I'll pray for time to pass QUICK!! and that you get the results you are hoping for. ((HUGS))