Back and Forth... Back and Forth

What a roller coaster.

To make this post simpler I am going to refer to our doctors so far as such: Dr. Mesa is the first surgeon we saw, who thought surgery was very likely; Dr. Dallas is the "expert" I have referred to that we will be seeing later in April; Dr. Phoenix is a doctor I have wanted to see who has been recommended to us by a few sources.

So here is a recap of the last few days. Tuesday I called Dr. Mesa's office, left a message, but did not hear back. Wednesday I called Dr. Mesa's office and left another message. His assistant called back and said she had talked to him but he had not been able to tell her anything because he was on his way to the OR and she didn't know when I would hear. In the meantime I called our insurance to see if I could get a second opinion. They said I could as long as it was a doctor in network. So I called Dr. Phoenix's office and lo and behold they could see us today (Thursday).

Later on Wednesday Dr. Mesa himself called. He said that he had consulted with the neurosurgeon he works with and they both agreed that Claire does not need surgery. He said they felt there was enough room in her skull so that we did not have to worry about her brain. BUT, he said that he wants to see her at the end of April with the neurosurgeon so they can get another look at her and be sure. They would also want to see her every 6 months until she is 3, and then every year until she is 5.

So far, every single step has turned out exactly the opposite of what we expected. The first time we saw Dr. Mesa we expected him to say she was a very mild case and didn't need anything. Then he said probably surgery. Then we sent the letter and tests to Dr. Dallas and fully expected him to agree and say she needed surgery. He said she probably didn't need surgery. Then we expected to hear back from Dr. Mesa to say he wanted to schedule surgery but he had changed his mind.

For our appointment today we expected to hear another vote for no surgery. Can you guess how it went? Two doctors came in, Dr. Phoenix and a woman. I don't know if she was resident or what. They started looking at her head and noting the abnormalities associated with her fused suture. He said she does not fall on either end of the spectrum; she is neither mild nor severe. He said that if there was a line for doing surgery that she is right on it, possibly just over it toward surgery. He kept kind of shaking his head and saying how borderline she is. I brought my list of a million questions and he patiently answered all of them. This post will drag on so I'll post them another time. He seemed knowledgeable, he answered our questions very well, and we definitely liked him. We certainly felt much better about Dr. Phoenix than we did about Dr. Mesa.

Dr. Phoenix said that because the case was so borderline we would have to make a decision about what we would like to do. He said that we could wait as long as we want to make the decision. I have usually heard that the surgery is best done before 10 months of age but he felt otherwise. He said that her head is unlikely to change much. He said that they like to see the forehead come out a little farther on the side so that there is not an indent above the brow bone. Hers is just a bit short due to the narrowing of her forehead. It's a bit hard for me to explain without showing.

Ultimately, according to Dr. Phoenix, we are in the dreaded gray area. He did not tell us what to do. It is our decision. We talked about the cons of not doing surgery. He said that her frontal lobe is being pinched by this condition. If there is a problem in a part of the brain that controls motor function, the effects would be obvious. It is not as straightforward with this part of the brain, which controls things like personality, decision making, self control, social behaviors, etc. There aren't as good of measures for this, especially in infancy. We discussed some medical journal articles I have found recently which talk about incidence of learning disabilities, developmental delays especially in speech, and behavioral disorders in children with metopic synostosis. These children experience these issues with greater frequency than "normal" children. And that scares us, obviously. These issues all "make sense" as the frontal lobe is involved in all of those functions.

We also brought up the opinion from Dr. Mesa that there is enough space. Dr. Phoenix said that "enough space" is not the issue. The way he explained it is that the fact that her forehead is as narrow as it is means that her brain is being restricted in that area and is growing in other areas, explaining the wideness at the back of her head.

So what do you do when a decision like this is left up to you? It's borderline, what do you do?

What if we see Dr. Dallas and he still thinks she does not need surgery? Honestly that is a major fear right now. Then what?

If Dr. Dallas says she is borderline or does need surgery then we will do it. If not, we can't answer that question right now. We really trusted Dr. Phoenix and he made us much more confident with the idea of having surgery locally if needed. But we certainly have not made that decision either.

The last thing I asked the doctors today is what they would do if Claire was their child. They both answered without hesitation that they would have the operation.