New here

[heymom07]

Hi Everyone - My 6 year old daughter was just diagnosed with syringomyelia and cm 1.  We have an appointment to go to Mayos.  Has anyone else been there for this?

[heymom07]

Thanks Selma for that information - especially about the slow progress and being patient.  That's something I'm always working on. lol

[selmaS]

  Yes, several of the Chiari specialist will accept MRI's and medical records for review b4 they see u  to decide if u need to be seen, most do it this way...some will charge a nominal fee, while others do this free with the understanding that if u do need to be seen u will go to them.

  This is a slow process, so be prepared.

     "selma"

[heymom07]

Thank you Selma - that has been my thought too.  Mayos is the closest for us (8 hours) but then I realized that there are other clinics out there. Since I'm so new to this - is it possible to send your records to a chiari doctor and ask them to take a look and see if they would like to meet with you for an appointment or is that something that isn't really kosher?

[selmaS]

  Hi and welcome to the Chiari and Syringomyelia forum.

  I am so sorry to hear ur DD is having to deal with this.....

We have had a few go to Mayo for chiari...but, I can not remember if they were happy with the Drs there....what u have to keep in mind, NS's that r tops in their field or even big clinics and hospitals does not mean they are the beat for chiari. Unless they do their own research and have a clinic just for chiari  then it may not be the place to go.

  We do have a list of chiari drs , this list is compiled by the members of their drs names ...the list is not meant as a referral, but a means to help u with ur research. I would suggest going to Mayo and then compare to another Dr u know to be a chiari dr...educate urself so u know what to look for....

  The list of Drs is in a thread and in our Health Pages located at the bottom of this forum page.

    "selma"