Neuro surgeon appt.

[ElishaConway]

I took my daughter Elizabeth to her first neuro surgeon appointment with Dr. Einhaus. She was very nice and informative. She said Elizabeth has an unusual case of a Chiari malformation. She said she would call her a Chiari one and a half malformation. She said her brain stem is even malformed. Her Chiari malformation is pretty extensive. She has scheduled a sleep study and is Elizabeth has sleep apnea she will schedule a decompression surgery right away.

[linnielou232]

Happy to hear that at least you are getting answer's for your DD.  I also agree with Selma.  I suggest also that you get a 2nd oppion, so you conpare who you are more comfortable with.  Wish you the best on the journey.  We know how hard it can be.

[selmaS]

  Hi...have u had any other Chiari specialists give u a  a 2nd opinion...I encourage everyone to get more then one opinion so u can compare.

A NS that specializes in Chiari does their own research on the condition as well as related condition.

I am glad to hear ur DD is being checked for sleep apnea, but also rule out tethered cord, ICP, ehlers-danlos, as they can affect how she feels and heals.

    Please keep us posted
       "selma"