Chiari

[Carrie1978]

My 7 year old daughter has recently been diagnosed with Chiari Type 1 Malformation. We are currently interviewing neurosurgeons from all over the USA. We live in MD. Does anyone have any helpful information? Are they any doctors you can recommend or doctors we should stay away from?

[chiarian05]

It sounds like your CSF is being blocked some where along your spine.  You need to see a chiari specialist.  A lot of neurosurgeons dont concider it chiari until there is a 6mm herniation.  Its crazy!  A chiari specialist knows better than that...and with your symptoms, I would say you need a cine flow study and a MRI with contrast of the entire spine and brain.  Im not a doctor, not even close...I just live with this stuff everyday and have studied the heck outa it.  Good luck and I hope you get some relief!  

[chiarian05]

The chiari institute...they are the best of the best.  Its in New York.  I am sorry to hear your baby has chiari...Im here if you ever need to talk.  

[sickofdoctors83]

Hopefully, someone can give me some advice. The drs I've seen have given me several diagnosis (up to 5 so far) and one of them was Chiari. I live in Nebraska where my choices are very limited. I just went today to the neuro and he said no, not Chiari, but the other doc was CERTAIN that I have it. I have constant headaches, numbness and tingling in my hands, pain and pressure in my eyes and neck, as well as pain and weakness in my arms and legs. I'm constantly tired as well. I get ringing and air "rushing" sounds in my ears. Does this sound like Chiari? It's been a 13 year battle for me. These headaches are constant and severe, sometimes making me nauseous. Please, any input would be AMAZING!!!!

[tasheba76]

HI! My 7 year old son had  Chiari, last Nov ,Dr.Edwards from Stanford Lucile Packard Childrens Hospital in Palo Alto,Ca.,performed my sons surgery. Everything went great,he has improved so much since his surgery.He's allowed to be in sports now and play just like any other little boy.Turns out he's a really good snowboarder! It was the scariest thing in the world to go through but the outcome is worth it.LPCH is the best hospital in the country.The other moms there were just as helpfull. The support in ICU was amazing for us. Dr.Edwards saved my son,we love him!