Third NS tomorrow and more scheduled

[MLShelly]

My five-year-old was diagnosed with CM1 (27mm) and platybasia over the summer. He's had a history of developmental delays as an infant and toddler and continues to have balance, coordination, fine motor and minor speech issues.  The first NS recommended decompression and laminectomy with full physical restrictions. Sleep study and swallow study are being scheduled next month. Second NS said The complete opposite, no surgery and no physical restrictions at all. Only watch and wait since he's mostly asymptomatic. So far I'm not comfortable with either NS that we've met.  Tomorrow we are going to a third NS and fourth next week.  Guessing that I should brace myself for four completely different opinions right? Sadly, the last two NS's were chosen by our insurance company as they denied three different request for us to see someone outside of NJ.  I have to wait until January 1 to switch insurances before we can see any type of Chiari expert out of state.

[linnielou232]

I am so sorry to hear about your DS having Chairi, and I'm happy to hear your seeking the best for him.  Just wanted to tell you I'm wishing the best for you and the answers for your son.
Linda :)

[Viva001]

I would want several opinions too (but the majority might not be the correct opinion).
were these both pediatric NSs?
Why arent you comfortable with the one who seemed to take it more seriously?

I was told that while the cine mri is helpful, & new, it's not necessarily definitive.  It's still just a 2D picture of a brief moment in time.

[MLShelly]

We've done a brain MRI without contrast and full spine MRI with and without contrast.  No syrinx thankfully.  No scoliosis either. First NS said that my son's case seems so severe that CINE MRI isn't even needed because surgery is absolutely necessary but did order the sleep and swallow studies.  Ironically I didn't bring up the upcoming sleep or swallow studies to the second NS who is advocating watch and he didn't even think to recommend either one until I asked about them.  We have several more NS's to go so I'm sure we will end up with a CINE MRI in there somewhere.

[selmaS]

  I know Jan seems a long way off...but I would rather wait for a chiari specialist then deal with a Dr that really does not have the experience I prefer....unless there is a medical emergency, u can take ur time getting the right Dr....I know when it is ur child it is hard to wait and allow time to pass...but sometimes it is the better route to take.....

U just never know what u will hear....be prepared to hear more of the same and open to hear some new things...u never know when u may find a Dr that knows something helpful.

[Rylanesmom]

Has a cine flow study been done?  What about full spine MRI looking for syrinx?  It sounds like he is symptomatic and that is a large herniage.  I would absolutely restrict activities (see list of things not to do with chiari on this site).  Good luck with new NS but it does sound like you need a chiari specialist...hugs hang in there