Treatment / Surgery Options

How is craniosynostosis treated?

(Please note that this is merely my understanding of the treatments at this time. I will likely learn much more as I go along.)

There are two types of surgery available to treat this condition. The traditional "open" method involves making an incision from ear to ear across the top of the head and peeling back the scalp in order to access the fused bones. A piece of the bone is removed to reopen the suture, and the bones are repositioned to achieve a more normal shape. Customized helmets are used after surgery to further guide the bones to grow in the correct shape (in most cases, I believe).

A newer method includes the use of an endoscope in order to provide a less invasive treatment. With this approach, two small incisions (and inch or two in length) are made, and an endoscope is used to guide the separation of the bones beneath the scalp. Helmet therapy must be used after surgery to guide the growth of the bones. This surgery, however, is only available to children under 5 months of age. (Some facilities only accept patients under 3 months.) Older children require the more extensive surgery described above.

What are the pros and cons of the different surgeries?

This is the million dollar question at this point. :-) Here is what I have been able to determine so far. All of this is to the best of my knowledge, but I could very well find that I am mistaken once I learn more.

For endoscopic surgery --

Pros:

* Less blood loss -- About 10% of cases require a blood transfusion, whereas blood transfusions are very common with the traditional open surgery.

* Shorter surgery length -- These surgeries typically take about an hour, whereas the open surgery can take up to 6-8 hours (though I assume this is probably for more series cases).

* Shorter hospital stay -- Children generally are held for observation for about 1 day, versus a typical 3-7 days for the other method.

* Less scarring -- Since the incisions are much smaller, obviously the scarring will be less. Either way, though, doctors try to give a result that will not be obvious once the hair grows out.

Cons:

* Limited availability-- The endoscopic version of the surgery is only available at a handful of facilities around the country, including New York, Florida, Missouri, Texas, and California. I have found a total of 9 facilities to date that offer it according to their websites.

* Time constraint -- As mentioned above, this surgery is only available for children under 5 months, and is ideally done by 3 months. Since Addy is already just over 3 months old, she is pushing the age limit if we are not able to get this done asap.

* Longer helmet therapy -- It is my impression, though I have not heard this directly, that the helmets would have to be worn longer than with open surgery (probably until she is a year old, as opposed to maybe for 4-5 months).

* Possibility of further surgery -- I have been told that it is possible (perhaps even most likely?) that Addy's type of craniosynostosis (coronal) will still require the open surgery to be performed when Addy is older, perhaps around 2 years old. I am not sure whether this is because the suture will most likely close again and cause more problems, or whether there will simply need to be a few adjustments made in order to achieve a more symmetrical, aesthetically pleasing head and face shape.

At this point, we are trying to determine which type of surgery will be the best for Addy. More details in the next post about how we are planning to work on this determination.