5-9-14 Interesting update on spine surgery quest

Just wanted to share an interesting update on Ally’s spine surgery quest — We saw her regular neurologist and pulmonologist yesterday at Lurie Childrens so that they can give an accurate update on how Ally is doing.  They were both supportive of Ally being stable and needing surgery so that things do not become more complicated.  The neuro said we need to take the approach to help other doctors learn that SMA IS VERY serious, that Ally herself is severe and anything can happen any day, but overall SMA plateaus in symptoms and kids are living longer with proactive care (which is more and more including spine surgery to avoid pain and even more complications with breathing).  We also agreed to do another pamidronate bone infusion in the next few weeks while figuring out what will happen with Ally’s spine. THEN, this morning, I got a call from Dr. Sturm’s office in CINCINNATI.  I had Ally’s spine records sent there and he and his colleagues look at them and he said HE CAN DO SURGERY on Ally.  Now we would just need to get IL medicaid to approve it, but the process is started!  I haven’t completely ruled out the surgeon in IL, but if we can get this covered in Cincinnati, where they have done surgery on about a dozen SMA kids and have GREAT care at their hospital, we will go there.  There is lots of paperwork and requesting of more records, but I am hopeful!  If approved, we would most likely do consultation and pre-surgery stuff in one visit and then would come back another time for surgery.  Not sure which type of spine surgery they are most considering, but excited about their experience.