View Full Version : Another new concern and worried
05-20-2010, 10:07 PM
My little sweetie has right coronal synostosis. She has been slowly losing her baby hair so most of the top of her head is now bald. I was looking at her head and noticed not only does she have the ridge on the right front part but also has a ridge going down the middle of her head and it looks like its pulling in from the back right side as well. I'm not even sure what this is called as I'm new to all of this. Does anyone know what this is called or any insight on the whole side of the head being fused?
We are supposed to go see Dr. Fearon in Aug but this was before I noticed this. I emailed him to ask what he suggested. For the right coronal Dr. Fearon wanted to wait until 11 months to do surgery. My biggest concern of course is room for her brain to grow.
Thanks so much for any help! I already don't know what I would do without this site. I have learned so much from all of the wonderful people here :)
I´m sorry you´ve got an extra worry now. I wouldn´t know either as I´m also new to all of this but have a feeling you´re right in thinking there´s more closed than you suspected.
If you are having these concerns, follow your mommy gut. If you can't get into Dr. F until August, I would get a couple of appointments in your area, there are some awesome CFS's in North Carolina and Virginia. To put your mind at ease at least. If there is a multiple suture fusion, you don't want to wait another three months. A good CFS would be able to see pressure with a 3-D CT scan. I would be happy to get you our surgeons information if you would like to make an appointment or call or email her.
05-21-2010, 07:03 AM
HI Lisa and :welcome to craniokids, your daughter is absolutely beautiful. my little girl also was born with right coronal cranio, and I think what you are describing is the is like what Zara had/has too. if you look at her head is it like her head also can't grow properly along the back at teh right? i have been told that it is "positional" although, my gut also told me that it wasn't growing properly. Zara's scan showed slight fusion of her lambdoid suture and some wormian bones -which they didn't address either during surgery. I agree to go with your gut and try to get her scan done before august for peace of mind. i am goign to add you as a friend so you can see some of my photos of zara pre op, i'm sure you will see some similaraties xxx
try this link http://www.craniokids.org/support/album.php?albumid=88
05-21-2010, 07:12 AM
Just wanted to say welcome to CK, Violet is so beautiful.
Im a Metopic mummy myself so cant help with Coronal issues but you have had some great advice already x
05-21-2010, 08:25 AM
Craniosynostosis is a scary condition - especially when we watch our baby's head get worse and worse. Unless you are looking into endoscopic surgery, most doctors will wait from 9 to 11 months to treat coronal.
The skull is compensating for her brain growth....this is why her skull continues to worsen. The doctors say there are no long term effects during the first year regarding the brain pushing on to the skull......I don't agree 100% HOWEVER I see that most of these kiddos come away from these surgeries with no delays.
If you are concerned about ICP, you can go see a ped Opthomologist for an eye check and there is always the internal ICP monitor.
Hang in there!
05-21-2010, 08:48 AM
Go ahead and send Dr. F some new photos. He'll get you in sooner if he thinks it's prudent.
05-21-2010, 09:20 PM
Hi, my daughter Skye had both coronals fused as well as her metopic fused and she had surgery at 6 months old and she did fine. But of coarse every child is different.
05-21-2010, 10:09 PM
hi. I'm also a metopic mommy and can't really help regarding coronal. I just wanted to say I'm sorry you're having more worries and hope that Dr. Fearon (or a local surgeon) can give you some answers before August.
I agree that an email to Dr. F is a good idea :)
05-21-2010, 10:22 PM
I'm a coronal mom and I agree with what the others have said. If you are worried I'd get a ct done locally - you can always send the results to dr F and see what he thinks after looking at them.
05-22-2010, 12:16 PM
Thanks so much for all your replies :)
I did send Dr. F a email addressing my concerns. I will update this thread as soon as he replies.
Zara's mom I looked at your photos and Violet's head does look alot like your daughters. Thanks so much for posting that link. BTW she is adorable!
05-22-2010, 04:39 PM
Glad you emailed Dr F- he won't take any chances if she needs to be seen sooner he'll make it happen! Your daughter is adorable by the way!! Keep us posted when you hear back...
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