***ginleigh***

orthomom

L2 is not a bad level. It is hard to know the functional level until they are older..that is true. Adult spinal cords stop above that level and are nerve roots only but the fetal spine is a little different. Regardless of his functional level I have seen spina bifida patients do amazing things. When I was a chief resident we did scoliosis surgery on an L1 functional level young man who had a scholarship to college to play wheelchair basketball!! Until I meet him I didn't even know they had college-sanctioned wheelchair basketball.He was such a wonderful and inspiring young man!

I hope the same for your Charlie.

Good Luck. 

ginleigh

Thanks!  I hope those things for Charlie too - my husband has been looking at sled hockey .  L2 is not bad at all, and we are very hopeful there will be lots of great things for him...there are no visible nerves in the cyst covering his lesion, which would lead us to believe very good things...except we know his feet are clubbed so there is some nerve damage.  We can handle these things though.  Of course we wish it were sacral.  Or, actually - we wish not at all.

My worst fears are the things we can't anticipate, like issues from the Chiari II malformation or shunt problems if (when) he needs one. 

orthomom

Well in Tampa you will have excellent medical care for him. I am hopeful that he will do very well. Shunt problems do occur but usually if they occur after he is a certain age (after infancy) you will be able to tell by behavior that there is a problem. There will always be scary times and concerns with surgeries that he will go through but there will be so many wonderful times, too! I wish you the best. Be thankful that you are near a major tertiary care center with an excellent reputation from orthopedic and neurosurgery standpoints. At least you won't have to travel far if problems occur.

Best wishes to you and your family.