Saturday, July 11, 2009

The Cranio-coaster

When I first joined up on the CranioKids message board, I heard a lot of moms referring to their journey with craniosynostosis as the "Cranio coaster." Honestly, I thought it was cheesy and a little over-dramatic. I figured that Max would have his surgery, and then it would be over. His head would be perfect, and aside from yearly follow-ups for a few years with his surgeon, everything would be fine. Right?

Wrong.

Turns out that my worries post-op are just as pronounced as worries pre-op. Turns out that I obsess about Max's head at least twenty-five times a day. Turns out that there hasn't been a day when I haven't worried about him having another surgery.

And it turns out that once again, things never go quite as I expect them to.

Ever since Max's swelling decreased enough for me to see the finished product, I haven't been thrilled with the results of the surgery. I was prepared for this- I had read stories of lots of moms who freaked out over every little bump and I swore I wasn't going to be one of those moms. But I started taking weekly pictures, some of which I've posted here. About four weeks post-op, I noticed that his ridge between his eyes had returned. In the eight week post-op pictures, I thought that his head still looked a little triangular, and spent about an hour comparing pre-op and post-op pictures and scrutinizing them for differences.

In the past two weeks, Max's head shape has changed even more, to the point where it is looking almost as it did before surgery. Although the ridge down the middle of the forehead is less pronounced, its still there. His head is tending more and more towards that triangular shape every day. And he once again has significant narrowing above his eyebrows- we refer to that as pinching. Finally, I couldn't handle worrying about it anymore, and emailed some pictures to his surgeon. Wanting to cover my bases, I also emailed some pictures to a renowned cranio-facial surgeon, Dr Jeffrey Fearon, in Dallas TX. Quite a few women on the Cranio board have been patients of his, and he is more than willing to give opinions over email. (Yeah, I know. I sent pictures off to an "Internet doc." But he's THE expert on craniosynostosis surgery. Rather than being a plastic surgeon who does boob jobs and tummy tucks, and an occasional cranio surgery on the side, Dr Fearon does exclusively children's cranio work. People travel from all over the world to work with him. I've seen him not recommend surgery, I've seen him tell parents to watch and wait, and I've seen him recommend surgery. So I felt pretty comfortable asking for his opinion.) Less than 48 hours later, I got this reply:

Thanks for your e-mail. I looked at the pictures that you sent me of Max, and I do have to agree with you that he doesn't really look all that different, aside from the scar across the top of his head. I agree with half of the advice you have gotten, which is to wait. As for the watch part, I do not expect it to get better. We recently published a study that showed that after surgery, children with single sutural synostosis (like metopic) do not grow normally after surgery, with a tendency to grow back slightly toward the way
they were before surgery, over the course of many years. We recommended
slightly over-correcting at the time of surgery to help avoid the need for a
second operation. It is my impression that Max did not get an adequate
correction, and I would not expect it to get better. I am sorry to say
that based on what I can see in the pictures that you sent, I would recommend repeating the operation, but I would suggest waiting at least 9 months from the last operation to let him heal in completely. I would be happy to either take care of your son, or just offer advice (by e-mail,phone consultation, or office visit), whatevr you prefer. Although you didn't tell me who did the initial surgery, I would recommend considering going to a different surgeon for his next procedure.



I was stunned. I felt like I had been sucker-punched to the gut. Although for weeks, my mother instinct had been telling me something wasn't right, I kept expecting that I would be told "Its normal, and you have nothing to worry about. And here I was being told the exact opposite.

We resolved not to do anything until we heard back from our surgeon. He told me exactly what I thought he would- "Its normal, things are progressing the way they should." The problem is, I know they're not. I've been following the pictures of other boys who are Max's age and had surgery about the same time, and the differences are dramatic. Max's head is triangular again! So I pushed the issue, explained to him that things had changed significantly, even in the past two weeks, and he asked for another round of photos. Problem is, he's going out of town for a week, so won't even look at the photos until then. Sigh.

So yesterday, I say Max down for another round of pictures.

Can you see the peak in his forehead? The triangular shape, referred to as "trigonocephaly" is what the surgery was supposed to repair.
This is the picture that really shows it. You can see his forehead coming to a point, and you can see the pinching right above his eyebrows, as well as the narrowness/hollowness of his temples. All of this the original surgery was supposed to fix.
I knew that things weren't right with Max, but when I saw these pictures, I had a good long cry. Because I knew that if I were looking at these pictures for the first time, I would think that kid had metopic synostosis and was going to require surgery. And then I realized that no matter what my surgeon says, we are likely going to have to repeat this entire process.
A few hours later, I got an email back from my surgeon's nurse saying she could see exactly what I was talking about and she would show these to the Doctor right away. I hate the waiting part.
So I sent these pictures off to Dr Fearon in Texas, and set up a consultation for a second (or is it third?) opinion with another cranio-facial surgeon at Primary's. We've actually kicked around the idea of traveling to Dallas to make sure the surgery gets done right the second time...
So it turns out my friends at CranioKids were right. It is a roller coaster. One I thought I would be exiting a long time ago, but it turns out the roller coaster is just gearing up for another go-round.

9 comments:

  1. Stacy, I'm SO sorry!! I am sure that it will all eventually be OK, but it must be so heartbreaking for you to be going through this now. (((hugs)))

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  2. That is rough, mama. I'm so sorry you are on that rollercoaster. I can't say I understand, since I don't. But know I'm thinking of you and your sweet Max.

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  3. This is one of my fears also that surgery will need to be repeated! I have heard of Dr.Fearon and wanted to use him but the military said we needed to use a local doctor. I have only heard wonderful things about Dr.Fearon and I would say that if you have the means to see him you should definetly consider it! Also I would say Pray about the doctor! Good Luck with everything.

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  4. Hey Stacy! I've been following your story ever since I came across it. I feel so bad that you are going through this. I feel for Max and no kid should ever go through this and to have to repeat a surgury. My Nathan is having a second surgery on his ear, and I just feel so bad. Which doctor are you seeing at Primary's? Nathan is seeing Dr. Siddiqi. He is such an awesome doctor. And very amazing, and talented! If he's not the one you are seeing then I highly recommend you getting into him asap. He does it all! I hope everything goes well for your little Max, he is such a cute kid. Keep up the strength and all will work out! Love ya and miss you guys! Megan

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  5. I am glad you have trusted your mommy instincts. This must be infuriating and heartbreaking, especially when it involves such a small child. I hope the second time around works out better, and I hope you find the strength you need to get through this over the next year.

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  6. I'm so sorry this is such a roller coaster! You have to trust your mommy instincts--any professional who disregards a mother's instincts is not worthwhile in my opinion. That's what I've learned with my youngest.

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  7. Stacy, Sorry to hear he will need surgery again. It's hard because you want your kids to have the surgery to help them, but you don't want to see them in any pain! Just remember to listen to your instincts, because they are always right! Trust me I know from experience! Let me know if I can do anything for you! You will be in our prayers!!!

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  8. Oh geez Stacy I don't even know what to say, this is so crappy!!

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