From the last post until now, I have probably made 70 phone calls related to problems with our insurance company. After hearing we were denied coverage at Johns Hopkins, our surgeon referred us to a surgeon at Barnes Children's Hospital in St. Louis. I called to once again, make sure we would have insurance coverage at this appointment and was confirmed that our insurance was accepted at Barnes Children's. We made our appointment and I prepared to miss school to go. I had all of Ben's paperwork transferred from the surgeon and pediatrician's office.
Within hours of finishing that, we were called saying we would not receive HMO coverage at that appointment either. We could receive out of network benefits and would have to pay the first $1000 out of pocket, in addition to a large percentage of Ben's care after that. I cancelled that appointment, then asked the insurance company where could we go to get a second opinion about Ben's head.
Blue Cross Anthem said we could go either to Cardinal Glennon in St. Louis or the Cleveland Clinic Neurological Institute. I hadn't heard of Cardinal Glennon prior to this, but we were given the name of a specific surgeon we were told by the insurance company to see, so we made an appointment with his office earlier this week.
This morning we had our appointment at Cardinal Glennon. From first impressions alone, the facilities at Cox South in Springfield are so much nicer. When we checked in, we had to fill out paperwork and time-stamp it, then put it in a basket. After that, we were called up to one counter where we were told we had no appointment on record and they didn't know who we were. I explained our situation and they asked who I talked to. I didn't write down the appointment desk lady who I called several days ago, and I became worried about this experience.
Quite a bit later, we were told there was a note they found somewhere about our visit, but they had us down as a cleft palate case. Quite a bit later, we were escorted to another desk where we turned in insurance paperwork and while moving from station to station, the staff seemed generally surprised we would drive all that way to go to Cardinal Glennon. We silently concurred.
Ben was weighed and measured (16 lbs and 25 1/2 inches) and then we were escorted to another room. After about a half an hour later, a nurse peaked in, then walked off saying "Oh, I forgot about..." Over two hours after we arrived, we saw the surgeon and another medical staff person that was not introduced.
Dr. Carstens is a pediatric plastic surgeon who agreed that Ben needed surgery, but proposed a major cranial vault remodeling with the front of Ben's skull. This included removing, sculpting, and repositioning his forehead. We are incredibly uncomfortable with people rearranging Ben's face. The back of our head and opening the skull for adequate brain development are our major concerns. I brought this up with the surgeon, but this was dismissed because in his opinion, the appearance of the face is the most important. He also said Ben had a "toaster-shaped" head, which annoyed me.
After this overall negative experience, I called the insurance company with our list of reasons why Cardinal Glennon is not a good fit for our situation. I called the surgeon and he agreed.
He and our pediatrician are now going to write referral letters for us to see Dr. Sami Khoshyomn at St. Johns. He is the only pediatric neurosurgeon in Southwest Missouri. Dr. Mace (our first surgeon) is a neurosurgeon with pediatric experience, but not strictly a pediatric specialist. Dr. Sami's children attend the school where I teach, and we will have a consultation with him on Monday.
St. Johns is not within our network, but we are going to try desperately to appeal to the insurance company to get HMO coverage with this surgeon to avoid the incredible travel expenses associated with traveling to Cleveland. We should find out tomorrow if our appeal is approved or denied. Based on that decision, we will either start this process again in an effort to go to Barnes Children's Hospital in St. Louis, or we may be flying to Cleveland as soon as this coming Wednesday.