Melanie had her follow up appointment at the neurologist today to go over all the consultations and test results we have had since the last time we've seen her. I haven't blogged much about it all because it is all so complicated and "grey" that it's hard to explain what is really going on, but I think today we finally may have gotten answers that make sense and can be simplified to explain.
Melanie's spinal cord is "tight." There isn't a lot of room for her cord to move around and it might have some connections to the vertebrae, but it is too difficult to be certain based on the MRI. However, even if it is attached, she is not really a surgical candidate at this time. Her bowel and bladder symptoms are still an issue and we have an appointment with a gastroenterologist in August to hopefully get some relief in that area. The neurologist would like to have her receive a follow up MRI in a year from the last one (so in about 9 more months) to see if it still looks like it is in the same position.
Also she reviewed her symptomotolgy for the static congenital encephalopathy diagnosis (mild CP) and feels even though her ankle cords are tight with limited dorsiflexion, she seems to not be as symptomatic as she used to be and may be growing out of the original issues she was having. She does feel she has mild incoordination along with the ankle limitations and mild balance issues. Add to that her fear/confidence levels surrounding certain movement activities such as riding a bike and walking down hills and it results in heightened anxiety. I had the doctor explain to Melanie that there are no significant physical reasons why she cannot ride a bike or why she would be more susceptible to falling so that she would maybe start to believe she can do those things without getting hurt. If she starts to believe in herself, she should be able to accomplish those tasks (with extra work of course - she has always had to work harder on all physical activities).
So there you have it. I think we are satisfied with the answers and ready to move on. We'll check back in 9 months!