How to be sure I'm getting the right medical advice?

I've very new here, I just found out I had this a week ago! When the neurologist told me he said that it just being 8 mm it probably should not be causing symptoms. I reminded him that I am actually having symptoms so he did a nerve conduction test and checked my reflexes and said they were stronger than he'd like to see so he ordered an MRI of my c-spine and said we'd see where to go from there, I may need a referral. That is scheduled on the 14th and I follow up for that on the 22nd.

Yesterday I saw my regular doctor and she kept saying she hoped the neurologist found another explaination for my symptoms because she hates to think of me dealing with this. She also said that in her opinion most people with this should not have surgery unless it's life or death. Just deal with the symptoms and be careful if I'm sent to a surgeon because they may pressure me and convince me I need surgery when I don't.

So in the meantime I've been reading and I feel like this really explains numerous issues I've been struggling with for years and many of which have progressively worsened. So my fear is that if the C-spine doesn't show anything more than the 8mm herniation that I won't get a referral.

I'm just overwhelmed and don't know what to think. I do know that it will be hard for me to maintain my job with my current level of symptoms as everyday is a struggle. So I thought I'd seek opinions from people who really know what is going on, other patients!

Do you guys think I should press for a referral to a surgeon? Hopefully one who is experienced with Chiari?

As a side note are there any good Chiari doctors at UVA or John Hopkins? I'm in WV but those are the two closest decent hospitals!

Hey Anglyn,

I'm in a similar boat as you and I wanted to sympathize! It's my understanding that neurosurgeons are the go-to for Chiari's as neurologists don't always understand. Also - it's not about the size of the herniation but the amount of spinal fluid that is blocked so fight for a referral. Perhaps your doctor can send you for a CINE MRI? It shows the flow.

Good luck, advocate for yourself and don't back down. I hear ya - my symptoms are bad enough that daily living is becoming difficult too, so I'm hoping that I can get properly diagnosed and off to NS without much of struggle. I have no thoughts on surgery since I don't even have a diagnosis yet, but as for doctors in your area, there is a list under discussions of Chiari docs. Hopefully you can find one nearby!