I took Linken down to Primary Children's this last Thursday to meet with Dr. Douglas Brockmeyer, a neurologist there. I wasn't sure what to expect. I didn't know if they would do a CT scan while we were there or what. I was a bit nervous because John was already in Utah for some training for work and I was left with all three children to take to the appointment alone. Thankfully Grandma and Grandpa Walker met me at the hospital to watch the girls while Linken had his appointment. I'm grateful they volunteered to come, it definately made the visit easier.
Anyway, the doc said he is 99% sure that Linken does have craniosynostosis. This wasn't really a surprise since we've had two pediatricians tell us the same thing. The good news that day, was that the doc didn't think he needed a CT scan to verify. He was sure enough without a scan and said it would just cause unneeded exposure to radiation. So I didn't have to go thru that with Linken like I did with Kynadi.
The doctor then told me we would have two options to fix his skull. Both surgeries and either one would be performed when Linken is only 3 months old. The first option is an endoscopic surgery, where they would give Linken two smaller incisions; one at the front of his head and the other at the back. This option would be done with a plastic surgeon as well as the neurologist. After this surgery Linken would have to wear a helmet for 9-12months and we would have to make regular visits to the doc during that time. The second option is a more invasive surgery where there would be one large incision from almost ear to ear. This is a more intense surgery, but after it is done, Linken wouldn't have to wear a helmet. My first thought was to do the less invasive surgery to lessen risks and then just deal with a helmet for awhile. But I go back and forth. Either way scares me.
So we will meet with the doc again at the beginning of Feb. so that he can double check Linken's skull and verify the problem. This way John can meet the doc as well, and ask more questions about each option. We will also be able to meet with the plastic surgeon that would assist in the endoscopic surgery.
Anyway, nothing exciting to look forward to, but hopefully we can get this taken care of and we won't have anything else to worry about.
The picture shows how Linken's skull is elongated and there is a bulge at the back.
3 comments:
SWEET I like it and will take it. Good job.
Oh man, you guys and your hospital visits...hang in there! We'll remember little Linken in our prayers.
I'm sorry Shannon, that sucks.
I'm sure this doesn't make you excited in the least, and it's kinda weird- but I'm sort of excited we both have kids with something "craniofacial".
My unsolicited advice- Sometime join an internet group for craniosynostosis (like yahoo health groups). The TCS one is great. No pitty party crap, just lots of people and parents talking about their fave doctors, procedures, etc. That's where I get tons of great advice.
There's a conference with sessions on craniosynostosis and Treacher Collins next weekend in Phoenix, want to bring Linken and go together?!
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