View Full Version : Too many questions - just found out
10-11-2007, 10:24 AM
Hi my name is Megan and my son Jack has just this week been diagnosed with coronal craniosynostosis so forgive my lack of knowledge or medical terms. We just went in on Tuesday for a neurosurgeon consult and then were told this and went immediately to see a plastic pediatric surgeon and scheduled surgery for next year. Jack is only 2.5 months old and they said he had to be between 8-10 months to have the surgery done. In the mean time in my shock I have been checking out information on the internet and have found several mentions of endoscopic surgery for craniosynostosis but it has to be done when children are very young (3-6 months). Does anyone know the difference - why you would elect to get the traditional surgery with all of the risks when endoscopic surgery is out there and has been for at least 6 years (as far as I can tell)? I feel in a rush since Jack is probably at the right age now to have this endoscopic surgery done. I wasn't even given a choice or told about endoscopic so I'm confused (though honestly, I didn't think to ask about alternatives besides not having the surgery at all). If anyone has any information I would be grateful - I can't get my mind off of it or my fingers off the computer.
Thank you in advance
Mom of 3 boys (Jack - 2.5 mos. with Coronal Craniosynostosis)
10-11-2007, 11:34 AM
Megan- Welcome, I'm glad you've found us. I'm sorry you will have to go through this- but please remember- these babies do so well and it is fixable!
Being that Jack is so young, does give you some options. The Endo procedure was not given to me as an option by either NS that we saw. It is a less invasive procedure and does need to be done earlier. I think it's still not done on single suture coronal too much as there is more involved than opening the suture. THINK is the key word---I didn't research as I didn't really know anything about it. With Coronal cases, alot of the time there is restructuring needed in the forehead and the eye area. All of that being said- look to see if there is another doctor in your area- call and see if they do the endo procedure. Or even if they don't and you want to get a second opinion- just to see what their procedure would be- do so. We did and ended up realizing how great our first NS was- made us completely more comfortable.
Please continue to ask questions as you have them. We are here to help!
10-11-2007, 11:36 AM
Hi Megan....I'm so sorry for what's going on with Jack. I wish that I could answer your questions, but I'm sure someone on here can help you out.
I just wanted to welcome you to cranio kids.
10-11-2007, 01:32 PM
Welcome Megan, I'm glad you found us :hugg
It certainly couldn't hurt to call and ask if Jack may be a candidate for the endoscopic procedure. Not all Dr's perform it, and it usually performed on cases that involve very little asymmetry or mishaping of the head to my understanding. The traditional surgery allows for more reconstruction on cases that may be a little more complex. Like Jennifer, I *think* I have that right. Dillon had a moderate case so endoscopic was not offered to us.
Hope you find some of the answers and support you need here :hugg
10-11-2007, 03:44 PM
Hi Megan, I just wanted to welcome you to the boards. I hope you are able to find the answers you need for little Jack.
10-11-2007, 04:23 PM
My daughter is only 6 weeks old and we already know that she has bicoronal sysnostosis.
We also thought about the minimal invasive procedure and asked about it quite a few doctors.
If reconstructioning is required, which usually it is, I think the endoscopic procedure is not possible.
Also we have heard from very experienced doctors that it has other risks involved.
We don't know yet when we will be having the surgery but probably at the age of 4 months. We will be having the traditional surgery.
Do you have bicoronal or uni?
If you have any questions I will be happy to try and help you, send me a message.
Good luck Maya
10-11-2007, 06:05 PM
Hi Megan, just wanted to welcome you to cranio kids. Sorry i cant offer advice on endo as my son Charlie had traditional CVR/FOA 5 weeks ago but im sure someone will be able to help. x
10-11-2007, 09:04 PM
I can't tell you how much better I feel by just getting your responses. This is so new and reading about it on the internet is so impersonal and you just don't know what to go by. I have called my NS and am awaiting a call back to find out more about the endoscopic surgery, if Jack is a candidate, etc... He only has one suture closed on the right hand side and so I guess that is uni coronal. The right hand side definately has a flat appearance and his eye socket seems recessed and his eye slightly bulging which is what led me to pursue this with my pediatrician. Everyone I've met said they didn't notice (until I pointed it out) and that it would probably fade with age - I'm so glad that I went the next step to get the xrays. His surgery is scheduled at CHOP for April next year - it seems so long away and by then he will be 6 months older - a different person almost, since babies grow so much in their first year! It's comforting to know that so many of you have had great experiences - and that I can come to this board for answers and support!
Mother of 3 boys - Jack 2.5 mos with coronal cranio
Evan - 6 yrs
Maxwell - 3.5 yrs
10-11-2007, 10:02 PM
Reading your first message makes me have knots in my stomach as it brings back all those feelings I had when we first found out our daughter had cranio. Unfortunately I cannot help with the coronal cranio, as my daughter had sagittal and had a CVR done 10 weeks ago. I do however know that Jack is in great hands. I have heard many wonderful things about CHOP and it sounds like you are really getting educated and informed so that you will be able to make the best decision for Jack. Know that you are in our thoughts and prayers. :)
10-11-2007, 10:04 PM
I'm glad we could help. Usually with the flattening of the forehead/wide eye there will be some reconstruction needed, which I believe takes endo out of the picture. I've heard great stories about CHOP- I believe there are a few moms on the board who went there too!
Way to go on following your instincts!
10-11-2007, 10:37 PM
Welcome to the boards!
The endoscopic option is for certain candidates. In our case, Simon had too much correction needed to be a candidate. (Our ns does the traditional surgery and also trains other surgeons in the use of the endoscopic equipment, and he was quick to tell us that it was not an option.) The surgery is shorter with less blood loss, but it has risks and drawbacks as well. The biggest risk is that the surgeons have a limited view of some major artery (don't know the name) and can possibly nick it. A drawback is that the patient has to wear a helmet for a few months after the surgery to help with the shape of the skull. Also, another risk is that the surgery may not work as well, and then a traditional CVR might have to be done to follow up. I have seen some parents on the CAPPS board who have been down that road and have been happy, and I have read other posts where the parents are having a difficult time. Each patient is different.
Now, besides the endoscopic and the traditional remodeling surgeries, there is a spring-mediated cranioplasty option. At first, it was mostly used in sagittal cases, but apparently they have expanded to using it on metopic and some coronal cases. A Dr. David at Wake Forest is a big name in this area.
I hope this info helps with your research. As far as support, you have landed at a great site. The parents here are all warm and caring, and we welcome your vents and joys and concerns and ramblings.
10-11-2007, 11:01 PM
Welcome to CranioKids Megan. I can't answer your question about endo. My little guy is almost a year, has saggital and is scheduled for CVR (traditional) in a couple of weeks. I just wanted to welcome you here - it is a great place - it feels good knowing that you are not alone. Best of luck and please keep us updated on little Jack.
10-13-2007, 03:45 AM
Welcome Megan! I'm a sagittal mom so I can't give much advice on your surgical options. I hope you find the answers you are looking for and support here. This place is awesome. Welcome again! :hugg
10-16-2007, 11:10 PM
Welcome, Megan! I am glad you found this site...it has been a great support to me already.
Unfortunately, my little guy's case is far too complicated to consider anything other than traditional treatments...but I would DEFINITELY look into any option I could if I were you!
Also keep in mind that, according to our ns, surgeries for different sutures are done at slightly different ages. Isaac will have his first surgery in January at 5 1/2 months (unless something changes), his second somewhere around April, and his 3rd somewhere around July. Thankfully for you, it sounds like you are in for a much shorter road!! I think our boys are about the same age, though...Isaac's birthday is July 27th.
I will keep you in my prayers...I pray daily for everyone on here! Love and prayers to you all!
HI I wanted to say Welcome but I like the others can't help mine was a severe case and they didnt have endoscopic then but I hope you find your answers
10-16-2007, 11:58 PM
Welcome to Craniokids! I can't help much as my daughter had the traditional CVR/FOA 1 week ago today (hers was metopic). I do wish you well though! Keep researching. I have heard the same things that have been said already.
Also not to hijack but I love the new avatar Isaac's Mama (http://www.craniokids.org/support/member.php?u=776)! He is lookin' cuter and cuter!
10-17-2007, 12:01 AM
Hi Megan and welcome! I dont have to many answers for my baby has metopic. If it makes you feel better a second opinion is always comforting. My 3mnth baby boy will be having his surgery when he is 6mnths, they told me for the reasons of blood loss during the surgery. Right now he has about 6 cups and needs to build up more even though during the surgery they said to expect a transfusion. Every case and every situation is so different though, keep us posted!
10-17-2007, 01:29 PM
<TABLE id=HB_Mail_Container height="100%" cellSpacing=0 cellPadding=0 width="100%" border=0 UNSELECTABLE="on"><TBODY><TR height="100%" UNSELECTABLE="on" width="100%"><TD id=HB_Focus_Element vAlign=top width="100%" background="" height=250 UNSELECTABLE="off">Hi meagan and welcome? what hospital are you using in penn? Keep us updated on surgery and all your decisions this place is so comforting </TD></TR><TR UNSELECTABLE="on" hb_tag="1"><TD style="FONT-SIZE: 1pt" height=1 UNSELECTABLE="on">
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