our story

[Betsy]

Hello. My name is Betsy. I have a 12 week old daughter who was diagnosed with left coronal craniosynostis this week. We came upon our diagnoses in a very odd way. Our daughter had an MRI and CT scan to investigate a supposed mass behind her right eye. The mass turned out to be nothing, but they did confirm craniosynostosis with the CT. We are in shock and devistated.

We met with the plastic surgeon this week. They told us all about the procedure to fix it. My husband and I sat there with our mouths wide open. I can't imagine putting my baby through such a procedure.

After the news settled in, I came home and started researching. The surgeons here perform the traditional method of correction. I have to say the endoscopic method sounds much less invasive and equally successfull. Does anyone here have experience with this method? Our daugher has some asymetry to the orbit of her left eye as a result of the craniosynostosis, I am not sure if the endoscopic method would correct that or not. Any information on this would be helpful.

I am also wondering if it is worth my time to talk to multiple surgeons? There are two in our area that perform this operation, should I see both?

We are obviously freaked out beyond belief and I just want to do whats best for my daughter.

Your stories are all so inspirational and have already made me feel better. I can't tell you how much we want to be on the other end of this.

[craniomommynbaby]

Welcome!
Both my son and I had the traditional surgeries for correction. I am not exactly sure how they did my surgery, but they put in a permanent soft spot to compensate for my right coronal suture being closed when I was 2 months old. My son had the CVR with orbital advancement at 6 months old because he had both coronal sutures fused. He was not a candidate for the endoscopic procedure due to the amount of reconstruction needed. I have heard of coronal cases having the endoscopic procedure to open the suture and then following with a helmet to mold the head shape. It seems that those surgeries have to be done early on, and I am not sure of the success rates of the helmet therapy. I really do not know a whole lot about it, but it sounds like an easier way to go if your child is a candidate for it. There is less blood loss and less surgery time. It does have its risks just like the CVR, but again I have not really researched it. I sent you a private message with some ideas of where to find information about the endo procedure.

[mikaylasmommy]

Welcome! This is such a wonderful board. The ladies here are great and I don't know what I would have done without them during my daughter's surgery. They kept me sane. There are a lot of moms on here with uni coronal cranio like your daughter has. My daughter has bicoronal and had it at 2 years of age. I do know that your daughter is young enough to get the endo surgery. From my research a sencond surgery is usually needed later on in life. Although even with a full cranio vault reconstruction you could still need further surgery for various reasons. I would think the only reason to talk to two different doctors would be to put your mind at ease. You need to be comfortable with what you are doing for your daughter. These little ones are so strong and are able to over come so much you will be surprised. You will have the hardest time dealing with this! Oh and the hardest part is waiting for the surgery day to get here and then waiting during surgery. Good luck!

[Katie]

Welcome Betsy, I'm so glad you found our wonderful family!
It certainly couldn't hurt to talk to multiple surgeons and ask questions regarding their experience with the traditional surgery (ie..how often do you perform this surgery, is there a neurosurgeon present, how long have you been perfoming this) for peace of mind. The diagnosis is scary and shocking, and the waiting can be very agrivating, but we have an awesome bunch of cranio parents here to support you :hugg
As far as the endoscopic procedure, there are pros and cons to it. Dillon was not a candidate for it because he had multiple suture cranio and needed too much reconstruction. Like Cindy said, the endoscopic procedure is usually followed up with 6 months to a year of helmet therapy and is typically performed on children under six months of age. I've heard of some parents who were extremely happy with the results for their children, and others who had to have further reconstruction a few years later (which can also happen with the traditional route). Here is a link to a thread in the resources forum that has very detailed information on the procedure. Hop this helps!
http://www.craniokids.org/support/showthread.php?t=240

[Jennifer]

Welcome. I'm sorry you have to go through this journey- it is so scary and emotionaly hard. I am so glad you found this site-- it was a life saver to me..... Being able to go somewhere where you know the person you are 'talking' to has really been there/done that or is going through it really helped me.....My daughter's right coronal suture was fused. She had surgery at 4 1/2 months (and unfortunatly a second one at 21 months) She is doing amazing now!!!! I would recommend a second opinion-- just to meet w/ another team, see how they would handle it and to get a good feel that you are comfortable w/ one of them (We met with the first, were a bit put off by her straight-forwardness, met w/ a second and upon getting in the elevator to leave both agreed that the first was the best choice and were sorry we ever doubted anything---it made us feel better about the whole thing).

I'm rambling--- please look around, post all the questions you want, vent your fears- whatever you need- we're here!

[mom2mykidos3]

Welcome. My daughter was diagnosed with left coronal CS in May and is due to have surgery in October. I hope you find the support that you need here. My daughter is having the traditional way of surgery too. I don't know a whole lot because we are just going through all of this too, but know that if you need anything we are here.