View Full Version : Hey Post op Momma's.....
02-18-2010, 01:39 PM
What did your PS or NS say was a normal time for soft spots to fill in, if your baby had any after the surgery?
Fiona will be 2-1/2 years post op next month and nothing is really happening with her soft spots, especially the one near her temple, and the one on the top of her head still pulsates.....she will be wearing a helmet for outside play and gym when she starts school this September, her PS wrote a letter for her school.
02-18-2010, 01:54 PM
Andrew has two on top of his head, one each side of center.
We were told that they could take years to fill in and won't be looked at to be filled in surgically until he is about 5. They both pulsate and they are pretty big. They are almost a "V" shape. One is starting to feel like it might be filling in, but I am not sure.
02-18-2010, 04:26 PM
Ian's Dr. said that the bone starts to fill in in as little as 10 days post op, and in Ian's case he was right. They felt "cruncy" very quickly, then hard. But Dr. F did split skull bone graphs in all the open spots because of Ian's age. He has no open spots now, a year and a half post op.
02-18-2010, 04:32 PM
Janet, IDK the answer :( because Alex had the split bone grafts too and I never had concerns about "soft spots".
I don't remember Alex's head ever feeling "crunchy" as Larkin put it, lol, but I didn't feel on his head to much in the weeks after surgery (he was squishy and I hated to "push" enough to feel the bone).
However I do feel his head often now and Alex doesn't have any "soft spots" (that I can feel) at 9mos post-op.
02-18-2010, 04:43 PM
Same DR as above with no soft spots--??? Hope someone will be able to help soon-
02-19-2010, 02:13 PM
Thanks Ladies......I just wish those darn soft spots would fill in....2-1/2 years seems like a long time. :sigh
02-19-2010, 02:45 PM
I does Janet!! But I think that they really do give it up to the age of five for a reason. Some kids, like your cutie pie, just like to take their time building bone... How's the helmet hunt going?
02-19-2010, 02:50 PM
I think that we just may end up with a bike helmet....some of the ones I saw on line were so expensive. So I think that I'm going to take her to a sports store where they can properly fit her with one.....bike helmets drive me crazy trying to get them done up correctly.
02-19-2010, 03:00 PM
I have no concerns with soft spots...but, it is possible that they are hiding under desolving plates?
As for the helmet, also look into skate boarding helmets/roller blade helmets...they are more low profile and would prob work good on a playing kiddo!
02-19-2010, 03:44 PM
Janet, I found this one too... Lighter than a bycicle helmet, for sure, and kinda cute...
02-19-2010, 03:54 PM
Thanks larkin....I just requested a catalogue.
02-20-2010, 02:08 AM
Hi Janet, Josh is nearly 2 1/2 yrs post op and he still has a big soft spot which is is approx 3 inchs by 2 inchs about 3-4 inches above his right ear. We also see it pulsating. When they made a mold of his skull it showed all the soft spots on it and this soft spot looked really big. They just said they will fill it if its still there when he is 5 yrs old. Its made me think now, they have always mentioned it but ive not taken much notice as im always wittling in there about his forehead shape. im going to email the s/n and see what he says, need to ask him to send me all joshuas photos anyway. ill let u know what he says. how big is little Fi bugs? xx
02-20-2010, 09:04 PM
Simon's surgeons always said that we would see if the spots were still there when it was time for him to start kindergarten at 5 years old. Until his spots suddenly got bigger and his brain was compressed, they were not too worried about it.
The fill-in surgery is much less invasive and is supposed to be a faster surgery and recovery time. If she does end up needing it, the instant relief you will feel about her solid noggin will be so worth it. Of course, I hope that everything goes together on its own; but I know that Fiona will do great no matter what.
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