Frustrated

[Tharris85]

So I just got done with my appt with the neurosurgeon and I basically drove 4 hours to here " your chiari is mild and I don't think that would be causing your symptoms", however he is doing a cine MRI but he asked if I wanted it. I just feel like I am not getting anywhere. He was not a chiari specialist but he was referred to me from someone that had chiari and she said he was amazing. He was extremely nice I just wanted more answers. If the cine MRi comes back and shows that the fluid is obstructed then will they finally take me seriously?!?

[Tharris85]

Thank you ladies. It's nice to know I am not alone in my journey, but I'm sorry you guys are having to go through this as well. I emailed Dr. Frim. He is on the list of chiari specialist and I got a good feeling when reading his profile so I am hoping he emails me back. Good luck everyone!

[linnielou232]

Just wanted to say hello and tell you I feel your flustration and you are not alone. I've been on that same journey.  Just keep being persistant.  You know your body and you know something is going on.  Wish you the best for answers.
Linda :)

[DechenDolkar]

So sorry to hear you are going through this. I have no advice as I am on the ride right along with you. Just want you to know you are not alone. Here's to our journey with hopes of health and wellness.

[selmaS]

  It can be chiari related, but some Drs that r not experienced with chiari do not know how to dx and treat or even where to look. U may have EDS, and if u do, so of ur pain could be from that...u may also have tethered cord, or some related issue, but if they only look at flow and how long the herniation is, they may miss some other issues like over crowding (retroflexed odontoid)

There is so much to be considered and that is connected,...so, u really need a Dr that understands all of it,

U r not crazy, I went to Drs most of my life trying to get answers, they did not do MRI's when I started to see them...so, they guessed and some still do even when it shows chiari as they have no education on what to do or what it is  and how it affects us....it is them, not u.

[Tharris85]

I think so too. I am going to do the cine MRI and then go from there. I guess what I am wanting to know is if the flow is not obstructed then is it not the chiari causing everything? I think these doctors are starting to make me feel like I am CRAZY!!

[selmaS]

  Hi...it all depends on the experience this Dr has with chiari if he recognizes what is going on...the fact he is using the term mild drives me crazy...there is no way for them to know what mild is, I really feel our symptoms dictate the use of terms like that, not some old preconceived criteria which is no longer found to be correct  in dxing chiari.ugh...sorry....that cause me to rant...lol...

Could be u need to get an opinion of another NS....