The 3D CT Scan
Well, I've seen the CT scan. The doctor has received the radiologist's report by now but he has not seen the scans (he picks them up tomorrow when he comes to Fredericksburg).
Peter has absolutely no sagittal suture. His skull looks like a shiny, smooth, round cue ball. He has the coronal suture and the lambdoid (the one on the lower back of the skull) but that's it. I can find little evidence of the temporal sutures as well. On one side, you can kind of see where it was but the other side looks as if the suture was never there. Peter also, very, very clearly, has trigonenephaly. You can't quite tell looking at him but his forehead is small and triangular shaped and his skull is strangely out of proportion with his face. Looking at him with his skin covering the skull, you can't tell this but the scans tell a completely different story.
The question for us now is whether the neurosurgeon will want an ICP test done and, if so, when. We expect that we will be meeting with the surgical team in February as the neurosurgeon suggested. I wonder now just how extensive this surgery will have to be and will Peter need additional surgeries to follow-up later.
I'm also wondering if this could be related to a chromosomal abnormality. Most multiple suture synostosis cases are related to a chromosomal syndrome but Peter doesn't display any of the other conditions related to these syndromes.
After our next meeting with the neurosurgeon, I will likely e-mail Dr. Bodurtha who is the head of genetics at MCV. She tested the boys a year ago this past summer and wanted to see them again this summer for more testing. She may have insight into what could be going on.
I'm worried that this may represent a larger, more serious issue.
I apologize that this post is a bit depressing. I try to be more upbeat but this has me worried (and rightly so) but I promise I'll try to write of some of the funny things the boys have been doing.
Peter has absolutely no sagittal suture. His skull looks like a shiny, smooth, round cue ball. He has the coronal suture and the lambdoid (the one on the lower back of the skull) but that's it. I can find little evidence of the temporal sutures as well. On one side, you can kind of see where it was but the other side looks as if the suture was never there. Peter also, very, very clearly, has trigonenephaly. You can't quite tell looking at him but his forehead is small and triangular shaped and his skull is strangely out of proportion with his face. Looking at him with his skin covering the skull, you can't tell this but the scans tell a completely different story.
The question for us now is whether the neurosurgeon will want an ICP test done and, if so, when. We expect that we will be meeting with the surgical team in February as the neurosurgeon suggested. I wonder now just how extensive this surgery will have to be and will Peter need additional surgeries to follow-up later.
I'm also wondering if this could be related to a chromosomal abnormality. Most multiple suture synostosis cases are related to a chromosomal syndrome but Peter doesn't display any of the other conditions related to these syndromes.
After our next meeting with the neurosurgeon, I will likely e-mail Dr. Bodurtha who is the head of genetics at MCV. She tested the boys a year ago this past summer and wanted to see them again this summer for more testing. She may have insight into what could be going on.
I'm worried that this may represent a larger, more serious issue.
I apologize that this post is a bit depressing. I try to be more upbeat but this has me worried (and rightly so) but I promise I'll try to write of some of the funny things the boys have been doing.
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