4 years post surgery

[Faith]

I wanted to update everyone on our son's results four years after his endoscopic surgery for metopic craniosynostosis. This site was so helpful for us back in 2002 when we traveled to Missouri for Matt's surgery. He is doing great, and looks great. I would be happy to answer any questions for others looking for a parent's perspective. Thank you for this website.

[Katie]

Hi Faith, Welccome to Cranio Kids! It's good to hear that your son is doing so well. We'd love to see some pictures of him :hugg

[verdon2]

:icon_mrgr My daughter MAggie also had the metopics surgery. We would love to see pics if you would share!!! Talk to you soon!!!:howdy

[Jennifer]

Welcome to the site! We would love to here a brief story of Matt's 'journey' and how he's doing now!
Again- welcome to the site!

[Faith]

17

Here's a picture of Matt, four years after his endoscopic surgery for metopic craniosynostosis. We will send a series of pictures soon to show his progress over the years.

Faith

:wink

[Katie]

What a handsome little man he is!!!!!

[plukids]

Welcome! Happy 4 years post op! Thanks for sharing your photo. Matt is very handsome. I cannot wait to hear your story!

[KALEMSMOM]

Welcome Faith, he's gorgeous. I love his curly hair!!!

[verdon2]

Wow, what a cute guy!!!(whose his buddy in the background?!- Couldn't help but notice!!!) Can't wait to see more pics of him... I am so happy everything is good for him, and I love the hair!!!

[Jennifer]

I don't think he could be any cuter!!!! Thanks for sharing!

[Faith]

Hi, everybody, some people have asked more questions about how we came to decide to have the endoscopic surgery for Matt's metopic CS.

We diagnosed Matt's metopic at 2 months, when we saw a ridge formong on his forehead and took him to the doctor. He referred us to a pediatric neurosurgeon, who told us about the CVR surgery. In ther meantime, we did some internet research and came across Drs. Jimenez and Barone, who had pioneered the endoscopic surgery in Missouri and were beginning to teach other doctors.

We saw several neurosurgeons who perform the CVR. We felt like we were going to a car dealership; each doctor stated that they were the best with the best results, and doscounted the endo surgery as well as other neurosurgeons. The only neurosurgeon who reacted favorably was a relatively new doctor who had heard of the surgery,m but responded that they did not do that at his hospital.


Also, just around that time, Drs Jimenez and Barone were featured in a TV show called Super Surgery on the Discovery Health Channel, and we got a copy and saw the technique and results for sagittal surgery.

In weighing the invasiveness of the CVR and least invasive of the endoscopic, we decided to go down and meet with the doctirs, schedule the surgery at that time, and if we had any bad feelings, we would just cancel and come back home. We were fortunate enough to stay at the Ronald McDonald house and met several children and their nparents who had had the surgery and were doing great. That was our deciding factor.

Not to say that we weren't terrified, but the family support network both on the internbet and at the RMD bouse really helped.

Matt had his surgery at 3 months old to the day. The surgery itself lasted 45 minutes, with less than a spoonful of blood loss. matt stayed in the hospital overnight, and was released the next day. After the swelling went down 3 days leter, he was fitted with a helmet and we went home. Matt wore the helmet for one year; we had to go back to Missouri 3 times as he grew out of his helmets, and was fitted with new ones, and the docs took a look at him each time. We did not go back the 4th time, as he was done with the helmets and it was wintertime, and driving may have been hazardous.

Matt did not have any complications with the surgery, tolerated the helmet well. We did have some red pressure spots on his forehead, Matt was a big sweater. However, nothing serious. The helmet took some getting used to in putting it on, but then it was like putting a shoe on. We will send some pictures of Matt in his helmet soon.

We had sent our blood down in advance through the Red Cross, but it turned out not to be necessary. If we were ever to have another child with CS, we would have no hesitation whatsoever to go back to doctors Jimenez and Barone. They are also lovely people and parents.

We had also seen pictures of kids who had the CVR, and they seem to be doing great. It's a tough call, but we feel we made the right one for us.