View Full Version : Mild Craniosynostosis - Surgery? Sticky sutures?
I'm new here.
My son is 11 months old, and we noticed a ridge on the top of his head when he was 6-9 months old.
A CT scan was done and the neurosurgeon said that his coronal suture was partially closed. He called it sticky sutures. However, the plastic surgeon says that his sutures are fully open. But, I'm thinking to myself, if his sutures are fully open, then what else would cause the ridge on the top of his head!
So, I don't know what to think.
I'm thinking that he has a mild case? Are there any parents out there that opted not to do the surgery because of a mild case?
I just called another doctor for a 2nd opinion....I don't like all this waiting!
06-04-2010, 05:21 PM
Welcome Glo :hugg Do you have a copy of the radiology report? What was the radiologists opinion? Don't hesitate to get more opinions, you'll find many parent's on here got several opinions until they felt all their questions were answered and they were comfortable :hugg I'm glad you found us and I hope we're able to help you through this :hugg
06-04-2010, 08:37 PM
Welcome to cranio kids, but sorry you may be on this journey. It sounds like you got some conflicting and confusing information. It's really weird that the Neuro said one thing and the CFS said another... :dunno I am glad you are getting a second opinion. If the suture is partially closed I wonder if it's possible that the suture is in the process of closing and is so far only closed on one end?? From what I understand that suture is not supposed to close until you are in your twenties so if it is closing this early there is cause for concern.
It would help if you post pics and some of our coronal mom's can take a look. Also if you tell us where you are from folks in your area can recommend doctors they have used.
If your precious little guy does need surgery just know the kids get through it really well. The watching and waiting and worrying is hardest on us parents.
Just an FYI- you may want to re-post in the welcome mat to introduce yourself- that area gets more traffic so you will probably get more responses there... good luck and keep us posted as you find out more...
06-04-2010, 08:49 PM
I would keep a close eye and get a second opinion if the coronal sutures really are involved. Please post pictures or email me some email@example.com and I will gladly give you my observations. I agree also it would be great to know where you are at so members can give you some ideas of who to turn to for a second opinion.
Just an FYI the only suture that should be closed or closing at 11 months old is the metatopic suture. The coronal sutures never fuse fully. (If you look at a picture of a human adult skull you'll notice zig-zag lines appear on them. Those Zig Zag lines are the sutures and they remain open for growth spurts.
Thanks for posting to us I hope that you find out that your little one truely is fine and just a watch and grow case. Take care glad you found Cranio Kids
06-04-2010, 09:07 PM
I just wanted to welcome you. I am sorry you are having these concerns and getting conflicting and confusing information from your drs.
I am also a mom of a child with coronal craniosynostosis. I would go after that second opinion because if the suture is really closed it is likely your little one will need surgery to correct it.
Good luck and keep us posted.
06-05-2010, 08:13 PM
I think getting antoher opinion is where you should focus. Do you notice any skull shape changes at all? One of my sons, who is 6, has a very prominent coronal ridge across the top of his head. It totally FREAKED me out to feel it, especially after Ian's surgery for metopic, but he has no abnormal head shaping at all. I have NO idea when it started to close????? Gosh, now I wonder if it's something I should still be worried about???? I'll definately ask the Dr. at his well check up in July. Keep us posted...I'm curious to hear what another opinion will be for you. Interesting! Hope you get good news...
06-05-2010, 10:37 PM
My second baby was born with ridges and a small, odd shaped head. The first surgeon we saw said "mild" cranio and to call him when his head looked really funny. That wasn't good enough for us, and so our second opinion ordered a CT after an eval that looked like cranio. The CT showed that his sutures were extremely close together, but clearly not fused. I know what fused looks like from my older cranio son. So these are "stuck", I guess. We have been taking him to a traditional osteopath. Somedays I think his head looks better, but it's not obvious. keep us posted.
Thank you so much for all your advice and kind words and support. I'm so glad I found this site!
We are getting the 2nd opinion tomorrow at UCLA. Anyone here from the LA area?
I will ask the doctor tomorrow to see if he things the coronal ridge is on it's way to close. His metopic suture has already closed, and the scans were done when he was 10 months old. The doctor also said that his anterior fontanelle has already closed.
His head size was 50th at his 2 month, 4 month, 6 month check up....then at the 9 month check up, it was 20th-25th....his head shape to me does not look funny....maybe I'm biased.
All the above has me concerned...
Nancy -- what are osteopathic treatments?
I will keep everyone posted!!!
06-09-2010, 08:31 AM
A traditional osteopath can manipulate the cranial bones and help release the underlying dura to help the cranial bones function and expand the way they should. Kids with true craniosynostosis should NOT be treated unless the surgeon OKs it. It is NOT a treatment for craniosynostosis. We came across this treatment b/c Navid's head is a cranio shape, but no fusion on the CT scan. It is a very gentle treatment, and can cause no harm, but it cannot in any way take the place of surgery. Osteopathy greatly helped my three year old almost two years after his surgery. We saw an elevation in his occipital area. Kepp us updated!
06-09-2010, 02:15 PM
I'm in LA... UCLA has good Dr.'s. Keep us posted on your appnt.
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