chiari, hydromyelia

[nicky_s]

my 6yr old daughter has just been diagnosed with chiari malformation.  they also said she has hydomyelia or a "spinal cord cyst".   we had our MRI a little over a week ago and just went in today to review the results with her neurologist.  our doctor is referring us to a pediatric neurosurgeon.  we are at the beginning phase of our research and appreciate any and all info that everyone can share.   as a baby she was slow to reach her milestones and even now she progresses with her gross & fine motor skills at a slower pace than her peers.  she also complains of frequent headaches and struggles in school.   if I am researching correctly, I think hydromyelia is that same thing as a syrinx.  if they have the hydromyelia / syrinx, does this mean that she will have to have surgery?  

[selmaS]

  Hi and welcome to the Chiari forum.

I can not add to what frankie posted in explaning hydromyelia and syrignomyelia....

The only thing I might add is make sure the Dr u see is a true Chiari specialist and not just a pediatric NS....it is very important for a child to be tested for sleep apnea too....and all the related conditions.

I know there is a Dr Frim in Chicago...he specializes in Chiari and children so this may be someone to consult with. Or at least one Dr to compare with another. Please see our list of Chiari Drs and know the list is not a referral or endorsement.

[nicky_s]

thank you

[frankie_rush]

I am sorry your daughter has to go through this.  My prayers are with you.  Answer to yiour question is the best one i found and easy to uderstand.

yes, but it's a technical one. A syrinx is simply a fluid filled cyst and not location specific. a syringomyelia is a syrinx that has dissected the spinal cord while hydromyelia is dilation of the central canal where cerebral spinal fluid may accumulate.

I can not answer the one about surgery cause I am not a doctor.  Sorry I couldn't be more help, but I am new to all this also.