Finally, An Email

I finally heard from the surgeon in Dallas today. He is the one that is widely recognized as the world's expert in craniosynostosis. Here is what his email said:

Dear Kyle and Jill:

I reviewed the pictures and CT you sent of Claire. Although looking at pictures is not the same as performing a physical examination, I am happy to share with you my impressions. I can see that your daughter has a fairly prominent metopic ridge, however, I do not see any obvious trigonocephaly. The metopic suture normally begins closing in the first year of life and can sometimes form a very prominent ridge.  These ridges go away completely on their own, although it can take many years to do so. Looks like you have a pretty normal child to me. Once again, I hope you will understand that looking at pictures and a CT scan is not as good as performing a physical examination, and it is really the examination upon which I base the decision to operate (kids need to have more than very mild trigonocephaly for me to consider surgery). Please let me know if you have any other questions.

I wish we could say that we feel a deep sense of relief but it is not that easy. When we went to the first appointment with our local surgeon we fully expected him to tell us that Claire did not need surgery. We were both shocked and dismayed when he told us she probably did need surgery. After he explained what could happen if she did not have surgery we knew we wanted to do it, if it was necessary. And now we are faced with hearing an opinion that was not what we expected.

You might think that we were hoping to hear from the surgeon in Dallas exactly what we heard. But again, it is not that easy. I trust his opinion above all others but those little words in his email still worry us; the pictures and scan is "not the same as" and "not as good as" an examination. I know to an extent he is saying that because he has to, to cover himself. But it leaves room for that fear to be there.

So where do we go from here?

I called her local surgeon today to find out when we could expect to hear from him. The phone call did not inspire confidence, if I had any to begin with. The surgeon's assistant told me that she found Claire's file on his desk. He has the scan and the report. She said he had started to write some notes on it. The she said, "Honestly, I can't really read it. Something about her head and something about another doctor." Gee, that was helpful. Then came my favorite part when she said since her scan was on the 9th it seems her file "slipped through the cracks" so she put it on top of the pile. I know this is often how it goes with doctors and you always have to be vigilant and follow up, but still... She called back later to say that he is waiting to consult with the neurosurgeon who would be involved in the surgery but the neurosurgeon is out of the office since last week and they don't know when he gets back. So I will hear from them. Some day.

Our plan is to meet with the local surgeon and hear what he has to say. If he recommends surgery and goes to the insurance company to get approval I am hoping they will ask for a second opinion so we can see the other local surgeon, the one we have references for. This other local surgeon did a fellowship with the doctor in Dallas so that makes me feel a little better about his opinion, even if I have doubts about his techniques.

We are also seriously considering a trip to Dallas to have an actual examination there. Then if the doctor still thinks she does not need surgery, we can relax about it once and for all. That may sound crazy but we are feeling a bit uneasy about having conflicting opinions about our child's skull. As I said, I trust the Dallas surgeon's opinion above all others' but I agree with him that an in-person evaluation is important for him to give his best opinion. I also plan to email him back with some questions we have and to see if he even thinks it makes sense for us to come.

As always, we will let you know when we find out more.