Five weeks ago my symptoms got so bad I ended up in urgent care. The urgent care doctor and radiologist said I had Chiari 1 and referred me to a neurosurgeon. After calling the neurosurgeon for three weeks they finally told me they did NOT want to see me because I needed to see a neurologist first. They referred me back to my PCP. She has been trying for the past two weeks to find a neurologist who will see me. Today they called and told me the latest neurologist lost my paperwork, but got it again today. They're not willing to see me because I need to see a neurosurgeon.
I am glad no one is home right now because I had a nice long scream.
My PCP is going to try and get the neurologist to at least see me instead of rejecting me out of hand, since the neurosurgeon already rejected me.
It's been FIVE WEEKS. I'm so frustrated and tired and sick. Our savings is gone. My relationship with my husband has suffered because he feels like he can't do anything to fix this. I haven't been out of the house more than half a dozen times in the past five weeks. My symptoms are getting worse.
I would see if there is another NS you could see besides the one who wants the NL work-up first. Sadly it seems that most NL are a waste of time and money anyhow. I would call around and see if there was another NS you could see. Some chiari specialists allow you to self-refer you just have to send them your scans and stuff first!
That's the problem - I don't think there are any Chiari specialists in my area. I don't know if anyone is even familiar with the term. I am going to see if the NL calls me today and if not I'll start all over again... I just hate that I've been waiting for five weeks for someone, ANYONE, to see me! I have emailed, scoured the web, and tried to find someone in Spokane who knows about Chiari but if they do, they don't mention it. I thought the doctors would have a clue as to who I should see but apparently not... I am coming to realize I'm going to have to advocate for myself, even through this pain and exhaustion. It's not making me feel any better.
Anglyn said:
I would see if there is another NS you could see besides the one who wants the NL work-up first. Sadly it seems that most NL are a waste of time and money anyhow. I would call around and see if there was another NS you could see. Some chiari specialists allow you to self-refer you just have to send them your scans and stuff first!
Well, I just got off the phone with the neurologist's office... My doctor was able to browbeat them into seeing me for a "full neurological work-up." But they can't get me in until August 31st. Another month! Another month of being trapped in my house, another month of no work, another month of headaches/dizziness/nausea/anxiety/pain, pain, pain. I'm on a list for cancellations but I've never gotten in any earlier from those lists.