Well, we finally had our last appointment with the microneurosurgeon today. I was hoping to come away with more answers, but ended up with more questions. She asked more extensive explanations of details that I couldn't even remember. Everything's become a blur when you answer questions over and over. Many questions I can't even answer because I don't know the family history of diseases.
She tested his reflexes, in which he's always shown a weakness. He has a pidgeon-toed walk and can't bend down to touch his toes bending from the waist. She showed me his x-ray and where the Spina Bifida was. Also during the exam, she noticed a slight bend in his spine. Can you believe it? She thinks he has sciolosis on top of all this! We were sent down to diagnostics and he had another x-ray done standing to view his spine. And he also had a CT scan to check for anything that might have been missed up til this point.
I asked her what would happen if we didn't do the surgery. She said his bowel problems would continue and we could just treat it with Miralax and some fiber. There is not a 100% test to diagnose tethered cord. Only through surgery will she know if the tightness of his spinal cord is a problem. There isn't even a guarantee that having the surgery would clear up the problem if it turns out to be tethered cord. She said he has so many of the symptoms of tethered cord (spina bifida; possible scoliosis; pidgeon toe walk; little or no reflexes; can't bend down; back pain; bowel/urination problems) that it's hard not to think that's what is causing all his problems.
So for now we are waiting to see what she finds out from the x-ray and CT we had done today.