We had our appointment with Dr Rutka today.
We talked about the loss of feeling in his feet, but also about how well he is doing with his crutches. His shunt is doing well, but he has complained of quick headaches, which is new. They don't actually last very long, a couple of minutes.
But I also see that he is turning his foot in more, and his left foot is slower (but it always is). But he makes up for this with his walker and crutches.
But in the end he said we had a couple of options. Including surgery to drain the cyst, the fluid that is pushing against the spinal cord, and/or surgery to untether the cord. We decided on surgery to drain the cyst. This should start bringing back the feeling.
I forgot to ask (again) if what we are talking about is a syrinx, which is a collection of spinal fluid in a cyst that collects inside the spinal cord and can injury to cord from the inside out. This is what I am pretty sure he is describing, but he never actually used that term.
We went into a different room to talk with the booking nurse and ask questions.
Nick and Papa found some things for distracting themselves.
I think he is a bad influence
But Nick thinks that he is the funniest!
We are looking at surgery in 1-3 months. He will be in the hospital for 3-4 days. Looking at healing, infection and pain control. It will be on the neurosurgery floor we have been to before, and I can stay with him the whole time.
It was afterwards that I had other questions about what will they do with surgery. Will they do a shunt (which he mentioned in March). Will the shunt be permanent, how will it effect his head shunt? What about a decompression? What about tethered cord?
At the time, when we were meeting with the doctor it seemed like the surgery wasn't really a big deal. Except of course that it is neurosurgery, and of course that a 3-4 day hospital stay (which is a long time nowadays).
I went onto a couple of spina bifida groups on facebook and asked for any experiences and worried myself. Some asked about tethered cord and why not do tethered cord surgery. Why do surgery at all, and that the surgery was often used as a last resort. This is not what I was thinking.
So I emailed the nurse who went through the pre-op information and asked some of the questions.
I am freaking out just a little. A little bit of me is still calm because we have a plan.