Question
Hi,  I have a 5 year old son with Down Syndrome who was diagnosed with atlantoaxial instability of the C1 and C2 bones.  They (Duke) did an MRI and CT scan in October and found he also has an hour glass spinal cord injury directly behind the C1 and C2 bones.  We had NO IDEA that any of this was going on with him.  This was just a routine xray that a child with DS should have by the time they are 5.  The doctor says he does not know when he got this spinal cord injury.  Birth or after.  He is suggesting surgery to fuse the bones RIGHT NOW.  It has been said it would be better to fuse the C1, C2 bones directly to his skull and would have to wear a halo for 3-7 months.  I am totally terrified by this whole thing.  My son functions normally, but does extend his head back more than he should.  He is not wheelchair bound, use a walker or anything.  He functions like any typical 5 year old boy.  I am scheduled to take a trip in April to Shriner's hospital in Philadelphia for a second opinion.  I just want to know more than one doctor thinks this is the best for my son.  IF I do decide on this procedure for my son, what should I expect the next 6 months++++ to be like for him?  Can this procedure really work?  ANY advice is so appreciated.  I just need some comforting words right now.

Answer
I applaud your decision to get a second opinion on your son's case.  The fusion surgery is a major undertaking and it is well worth the time and effort to get another doctor's view on the case.

Having said that, I would like to point out that an injury at C1-C2 is the same level that Christopher Reeve injured his spinal cord.  The fusion surgery does work and in Reeve's case, it saved his life.  I think that you are very fortunate that your son had not had any problems from the injury so far considering that he is an active 5 year-old.  

You should also understand that any surgery involving the spinal cord is risky but it may well be more risky to leave your son's condition untreated.  The doctors that are reviewing your son's case have all the background information as well as the MRI and CT data and are in the best possible position to inform you on your son's particular case.

If you do decide to have the surgery done, the next 6 months with the halo will not be much different than your normal life.  There might be some balance issues while your son adjusts to the halo.  There will also be a little extra hygiene necessary around the halo pin points to prevent any infections.  It's just cleaning the area with a Q-tip and cleansing solution twice a day.  Having had a halo for six months myself, I can say that it's not a lot of extra trouble.  Making sure that your son is medically safe from a spinal cord injury is much more important.

Thank you for your question, Sharon.  I hope that my answer has given you some help.