Sagittal Surgery ??

[brant]

I'm new to this site so please excuse me if I touch on topics that have already been approached.

My two month old son is needing sagittal surgery. In my opinion, his condition is still very mild but I assume it will become more severe as he ages. The toughest part so far has been deciding where to take him. It seems that every surgeon does things differently and the procedures vary quite a bit.

I have concerns based on things that I read on the Craniofacial Center's (Dr. Fearon) website. He talks about the need for overcorrection. He also talks down about Endo and dissolving plates/screws. It seems that I was feeling pretty good about our doctors here in San Antonio until I came across Dr. Fearon's information. It seems that he is doing things different than everywhere else. I'd like to take our son to Dallas but I don't believe BCBS of Texas is networked with Dr. Fearon and the CF Center. Our out of network deductibles are crazy.

Also, my wife and I are obviously concerned about whether an additional surgery will be needed when he gets older. I don't want to go through this ordeal more than once.

What are people's experiences with sagittal surgery? What is the best type of surgery for it? Endo or CVR? Should there be a craniofacial surgeon along with the neurosurgeon when performing the operation?

Is sagittal something that is "normally" permanently fixed for life with just one surgery?

Too many questions... its overwhelming.

Thanks for any input you can give based on your experiences.

[Sophia's_mom]

It gets to be a very touchy topic when we start trying to say what the “best method” is or who the “best surgeon” is. Everyone likes to think their team is the best and the team’s method is the best.

To be honest, there are lots of ways to correct sagittal synostosis and just from being here for 3+ years I can say I've seen every method work wonderfully. What is important is that you ask lots of questions to your surgeons and select a team you feel comfortable with.

Most kids only need one surgery to correct their fusion. Unfortunately, no one is able to predict how a skull is going to grow post op or what types of complications may arise in the future.

Personally, we chose the Endo option for our daughter. There were reasons it appealed to us that may or may not appeal to your family as well. No matter what you choose, asking lots of questions and feeling comfortable with the team you use is one of the most important steps.

If you have specific questions about Endo I would be happy to help.

[fitmomof2ae]

Hi! Welcome to CK! It is overwhelming to hear that your child needs surgery...and then to find out that you have to make so many decisions. My son wasn't diagnosed with cranio until he was 9 months old. As a result, we didn't have a choice of endo or cvr. It was both a blessing and a curse. To answer your question, sagittal surgery is normally once...however, there are many reasons why a second surgery could be needed.

As Tessa mentioned, we have seen successful endo surgeries and successful cvrs on this site. We have also seen many saggital children require a second surgery. In endo cases, second surgeries can occur because the skull tends to revert back to the original shape. This can occur because the surgery is done when the child is young and they still have a lot of growth ahead of them. Another issue I have seen on this site is where the same suture refuses or a new suture closes early after a surgery has been performed. This is rare and not the norm. In most instances, the child's head heals perfectly and they only need one surgery. Unfortunately, you just can't predict how your child's head will heal.

My son had a modified cvr. He may or may not need a second surgery. If he needs surgery, it will be to remove a bump that developed after surgery and to fill in holes that did not fill in on their own after surgery. There are pros, cons and risks to each surgery. The best advise I can give is to find a Dr who makes you feel comfortable (experience, bedside manner, knowledge) and answers all your questions. Take time to review pics of our children, search the site for other parent experiences and ask a lot of questions. Good luck on your journey. You are not alone.

[brant]

My son had a modified cvr. He may or may not need a second surgery. If he needs surgery, it will be to remove a bump that developed after surgery and to fill in holes that did not fill in on their own after surgery.

Have they explained how they would fill in the holes that didn't heal completely? This is one of my concerns with Endo because I've been told that anytime they remove a section of skull that one of the most common risks is that the skull will not completely fill back in. I'm also concerned about how strong the replacement skull is that grows back. Is it the same thickness as it would normally be, or does it come back thinner?

Thanks for your advice and support! If your child has a second surgery, I hope all goes smoothly.

[brant]

Also, is it normal to always have a craniofacial surgeon along with the neurosurgeon when performing the operation for sagittal surgery?

[fitmomof2ae]

Hi Brant - I sent you a pm, but I'll answer a few questions here too. There are several ways to fill in holes. Here is what I have been told, "There are many choices about filling the defects: autograft from his own skull, artificial bone cement/paste, autograft from somewhere else (his rib), titanium mesh without grafting, etc." From what I've found, all Dr's have a different method that they prefer. Typically, as bones heal, they become thicker. In the past, many NS's operated alone. However, most hospitals use a team based approach these days with both a NS and a CFS.

[rhys' mum]

My son has had two surgeries for sagittal and if anything his bone grew back much quicker than we expected, although he had neither endo nor cvr. I just wanted to mention that babies especially can be very good at growing bone.