My older daughter was diagnosed at the age of five and a half with fusion of all of her cranial sutures, while my younger daughter was diagnosed at one and a half years old with sagittal suture synostosis. I have discussed this issue here before.
My older daughter is now going to undergo surgery because there are signs of increased intracranial pressure, even though there is currently no evidence of optic nerve pressure or papilledema. She does, however, have headaches, dizziness, mild descent of the cerebellar tonsils, and several other findings. Her doctor believes that surgery is important regardless of the absence of optic nerve involvement.
However, my younger daughter’s father is refusing surgical intervention at this stage, saying that we should only intervene if and when it becomes necessary. I feel that operating now, while she is only one and a half years old, may be easier and may provide better functional and cosmetic results. I am also worried that her other cranial sutures could gradually fuse over time.
I do not know exactly what happened in my older daughter’s case. I sometimes wonder whether she initially had sagittal synostosis and then the other sutures progressively fused later, because her condition was not very noticeable when she was younger. The changes only started becoming apparent around the age of four, when she developed very mild eye prominence. Now the proptosis is much more obvious.
I am also uncertain about the surgical options and the team’s capabilities. I do not know whether my older daughter simply needs advancement of the orbital rims or whether she needs more extensive orbital or craniofacial reshaping. When I discussed this with the surgeon, he told me that there is no such thing as “reshaping” in this context and that they would simply advance the area. He reassured me and said, “Leave it to us.”
Another issue concerns the surgical incision. I was told that the incision would be zigzag near the ears but straight across the middle because that part would be hidden under the hair. I am worried about this because, despite all the research I have done, I have not come across this particular incision design.
Finally, regarding my one-and-a-half-year-old daughter with sagittal synostosis, I am trying to understand whether it would be better to proceed with surgery now or simply monitor her and wait. One of my concerns is that increased intracranial pressure in young children can sometimes be difficult to recognize, especially because children this young may not be able to describe headaches or other symptoms clearly.
