A few weeks ago I received a call from a case manager at my insurance company, asking if I had any medical concerns I would like to discuss. I did have a few concerns and she seemed really engaged. She offered to talk to their medical director and try to find a doctor that could help. She promised to call back in 2 weeks.

I talked to her tonight. She said she was unable to find anything for me. She asked me the standard questions, like if I had a flu shot this year, then told me she would not need to call me back. Just when I thought someone might help….completely frustrating.

I am so sorry to hear this. That moment when you feel a loss of hope is the worst. Hang in there, though. I am facing a big struggle with my primary care physician and insurance company. Sometimes, I feel so small facing all of this and them on top of it. But, we are not alone.

There are those out there who can help us and will. We just have to be persistent to find them. I'm sure I don't know all that you're up against but I know what it feels to me when I get squashed. Just want to say don't give up.

Karla, I have the same question as Mandy. I can’t remember if we’ve been this already, but are you able to travel to a Chiari specialist?

I do have to stay in Ohio but I am looking into paying out of network charges to see Dr. Henderson.

Mayfield Clinic, Cincinnati, OH

Mayfield Chiari, Cincinnati, OH


Dr. Tew speaking


I should have been clearer. I was not looking for a NS for decompression. I had the decompression done last year. I was looking for someone to evaluate my continuing symptoms. Really my post was about the insurance CM calling to help but only sticking to the script.

Karla, you and I are in the same boat. Mandy found a surgeon in AZ, dr theodore, who did some training under Henderson, he appears to be down with the instability struggles. If you are interested in an alternative to henderson message her.

I’m sorry that rep got your hopes up, a roller coaster indeed. This is not for the weak, or faint of heart. I know you are in pain and waiting for an answer. I can’t remember, have you tried wearing a cervical collar?