Newly diagnosed - sagittal

[mpfeiffer]

Hi everyone! I'm hoping I'm doing this correctly. Found CranioKids via my father and have been all over the site looking for people like me. Anyways, here's our story:

I took my son to the pediatrician for something different when he was 3 months old and the doctor recommended an x-ray because he thought the soft spot "felt wierd" and suspected craniosynostosis. After my husband and I freaked out for a while, we got the x-ray. The radiologist told us there was "no evidence of bony craniosynostosis" and we calmed down until his 4 month well baby visit. I brought up the head shape and only then did our pediatrician recommend we see a pediatric neurosurgeon (can you tell that I'm bitter?).

We went to Shands in Gainesville, FL where the neurosurgeon said we didn't need the x-ray, he wasn't going to require a CAT scan and could tell just by looking that my son has sagittal craniosynostosis and we need to have surgery before he turns 6 months old to correct it and then we'll do helmet therapy.

I'm scared to death here and have lots of questions. I'm working on 2 second opinions and going online where I'm finding conflicting information. The surgery is scheduled for 3 weeks from now and I'm torn between cancelling it and calling to see if it can be done sooner. At the same time, I'm researching other facilities just in case we're at the wrong place.

I just want to do the best thing for my son.

[AllyCat]

Sorry for your diagnosis, but glad you are here.

Those blasted x-rays!! So many here have had the same false positive/false negative/inconclusive results as you. The only way to tell for sure is a CT scan or an experienced neurosurgeon and/or plastic surgeon who can tell just by looking. If they can save your son a CT scan (radiation is very high, but often necessary). Just make sure you don't need a CT scan for your insurance, medicaid, or whatever to cover it. Insurance companies are notorious for refusing to pay for stupid stuff. Can you tell I have no love for them?

The surgeon at Shands is correct that if they are going to do the endoscopic procedure, it has to be done before about 6 months of age. Then the child goes into a helmet. From what I've heard, sagittal does pretty well with the endoscopic procedure whereas some of the others tend not to do as well. Just depends on the child and the surgeons.

However, it can be corrected at any time with the traditional cranial vault reconstruction (CVR).

I'd get a second opinion or even a third. There is a link here somewhere (I think in Testing and Surgery) about how to get a better idea of how good your surgeon is and what kind of a match you are comfortable with.

It is scary, but you are doing the best thing for your little guy by asking questions and staying on top of all of this stuff. It's a lot to go through for the parents and the babies, but they do well and we are here for you!

Feel free to post some photos of your little one. We love to see everyone's cute cranio kids!

[three.little.boys]

Hi an welcome! Sorry you have started your cranio journey, but we are here to help you and reassure you every step of the way!

There are several mom's on here who's sagital kiddos had the endoscopic surgery/helmet therapy and have excellent results. Their kids look fantastic.

There is some research that implies that the endo surgery is not as safe as it seems (although. there does seem to be pretty good results here on CranioKids from what I have seen). I think as a parent you just have to dig in and do LOTS of research and decide what sounds like the best option for your child.

That is what is great about CranioKids..we have many different experiences and can share with you the pros and cons of each!

Good luck and welcome!

[EmmaLacey]

I too had a similar experience where my duaghter (also with sagittal) had an xray that showed no cranio. However - almost 5 months later she was finally diagnosed with it. She had surgery at 7 months old. You can read about her story at the bottom of my signature. Good luck and you've come to right place for answers and supportl.

[spoongirl10]

My son's head shape was odd shape and had a ridge at a month old. I took him to a ped neurosurgeon they could tell by looking at him that he had sagittal and ordered NO xrays or ct scans. I kept second guessing but, as I looked at other children's heads he looked exactly like them. I figured who am I to second guess, they do this every single day. Within 3 weeks my son had endoscopic surgery (3months) He is now 5 months and is in a helmet and my husband and I couldn't be happier that we trusted our surgeon. If you have any questions please don't hesitate to ask. Hope all goes well!

[mimi]

Hi there, I'm new to all of this as well with an 11-week-old who has sagittal. Even finding out early, we're still waiting for our NS appt. We are leaning toward the CVR surgery which is typically done when they are 4-6 months. I know how rushed you must feel and am glad you found this site so you can read all the amazing stories and learn that you do indeed have options. Good luck--keep us posted!

[dannlark]

Welcome to CK! Sorry you had to join the club, but you've come to the right place for information and support. My Ian is metopic so I can't help you with the Sagittal stuff but just know that the kids do SO well with the surgery's, either one, and once you make it to the other side, you'll be so happy to have made the decision to go ahead with it. Don't be afraid to ask away...someone here is sure to have an answer. Keep us posted on your progress...((HUGS))

[mpfeiffer]

Thanks to you all for your support! It's all so unbelievable - I feel like I'm watching a movie of someone else's life where this is happening. Just moving forward and trying to prepare myself for what lies ahead. I spoke with a mom who had the same surgeon we'll be using who said the best thing is to review all the before/after images and I have to say I agree. Hopefully, I'll be numb to it by the time surgery day arrives on 7/21/08 - very long 3 weeks I'm thinking.

[spoongirl10]

It's going to feel like forever between now and 7/21 and you will be going everything over and over in your head. We are all here and we've all been through it, so don't hesitate to lean on us!

[Annie]

Hi and welcome to CranioKids... the CT is the best test to determine if your baby has Cranio...not an X-ray......but ask a lot of questions, search the net, and i agree get more than one opinion.....good luck and keep us posted