They know she has chiari 5mm herination o n right tonsil yet they say her passing out headaches etc arent from it but cant say what they are from yet she is decreasing? Some say 5mm cant even be classified a chiari so then how is it some say it is… I am so confused can others give me their stories and if it was a struggle and how help came to ease them…
I’m so sorry you and your daughter are going through that:( Sadly, there are a lot of doctors out there that lack sufficient knowledge about Chiari. The NS that diagnosed me back in 2010 said that my 4mm herniation and syrinx were too small to cause any problems. He said to come back in two years and if it started to cause problems, he would do a shunt. I got significantly worse over the next year and started doing my own research. It became blatently clear how little he knew about Chiari. I found a great NS within driving distance, but both my PCP and NS refused to give me the referral I needed to see the new NS. My PCP said that my case was not surgical and it was not that bad. I had to get the referral from my Chiropractor, because he was the only one that listened and took me seriously. I saw my new NS on April 30th and he was wonderful! He is a brilliant doctor and a kind and compassionate human being. He said that my case is pretty urgent and that I’m at risk for paralysis. I am scheduled for Decompression surgery on June 28th. I am so glad that I fought for myself! The point of this is…We have to educate ourselves and then advocate for ourselves or our loved ones. Your daughter is very lucky to have you:) If you need help finding an experienced NS, there are lists of patient recommended doctors…You can find links on our resources and doctors page. I hope this helps!