This post is my attempt to document the process we went through in diagnosing craniosyntosis and getting surgery scheduled. Note: Your process will vary. You have a different pediatrician. You have a different insurance company. You have a different hospital. You have a different surgeon. This is just what we went through. See this page for all of the posts related to that journey.
At Phinehas’ 6 month check-up (October 2012), his pediatrician (Dr. A) noticed that his soft spot was gone already and had concerns about the shape of his head. He sent us to the hospital to have a skull x-ray done.
The x-ray results came back normal, but the pediatrician still had concerns. We made an appointment at the Helmet Clinic, but that was still 2 months away.
In the meantime, Dr. A sent us back to the hospital for a CAT Scan in November 2012, which I was worried about, but turned out to be not a very big deal. The radiologist diagnosed craniosyntosis and the hospital gave us a CD copy of the scan. (It’s actually really cool to look at.)
Because the radiologist had a diagnosis, we canceled our appointment at the Helmet Clinic (still not sure if that’s the right move to make). Instead, we made an appointment directly with a neurosurgeon.
Confirming the Diagnosis
In January 2013, the neurosurgeon examined Phinehas, read the radiologist’s report and looked at the CD himself and confirmed the diagnosis. In addition, that’s when we learned that surgery had to happen. A helmet wouldn’t unfuse the bones and cause the head to grow in the right direction. Actually, we didn’t have to have surgery as this isn’t a fatal condition, but he could (no one knows) start to have brain growth restriction and his head shape will only continue to grow in a triangle-like shape from his forehead out. He operates with a plastic surgeon who has a specialty in craniofacial surgeries, so we made an appointment with him as well.
We met with the plastic surgery, who confirmed what everyone else had said. His office is connected to Children’s Hospital, so they were the schedulers. The scheduling part was very frustrating! Either I didn’t ask good questions about the process or I didn’t understand the answers because I thought we’d be having surgery in 6-8 weeks. In reality, it takes 6-8 weeks for them to start processing his case (because they’re just so backlogged) and THEN they’d assign a date. That was frustrating. At one point, the insurance company told us the date was March 28th. Later the surgeon’s office told us it was May 2nd. Sheesh.
Getting a Second Opinion
The good thing about having a Children’s Hospital in your town is that you have people here that do the surgery. The bad thing about having a Children’s Hospital in your town is that every other hospital in town refers you to the same person – the same person we’ve already heard from! We tried to get a second (third? fourth?) opinion from a hospital in Kansas City, but they lost the CD we sent them. Eventually, I got a neurosurgeon from the Medical Center here in Omaha to see us, view the CD and confirm the diagnosis. He confirmed it, and so we were comfortable that surgery was needed.
The surgeon’s office took care of all of this for us. Eventually, we got a letter from the insurance company stating that it was approved and that’s all we needed. We have a High Deductible Health Plan, so we knew we’d be paying plenty out of pocket, but that’s where our HSA was going to come in handy.
Before surgery, Phinehas had to do a pre-op appointment with his peditrician. Since surgery was just after his first birthday, his 1-year check up doubled as a pre-op appointment. They just had to send a letter to the surgeon’s office with brief medical history and stating that he was in good health.
In May 2013, we finally had surgery!