I haven't shared for awhile. It took time to get an appointment with a NS who knows about Chiari. After my initial appointment with a NL, I was less than satisfied. Perhaps, a better explanation is that I felt belittled and perhaps leaving the office on Friday afternoon to do other things was more important. It was my follow up with the MRI of my brain and he drew a cartoon explaining the issue and said 7mm wasn't that bad and he wanted to see me in 2 months and do another MRI in 6 months. He also thought my symptoms weren't enough to warrant further studies. Then he went on about how a patients want to have surgery the moment they find out. I said wait a minute - I just found out and I want to know options - additional tests etc. that could clarify the extent of the issue. Again, I was dismissed as wait and see.
After this appointment I investigated my options with my HMO. I was told I could get a 2nd opinion. I went through the online lists and chose a doctor after a week of investigating that actually listed Chiari in his profile and he seemed very good. I went to my primary care physician (PCP) and they put the request in.
It was denied because the NS was not in my network. I asked how to get to him and was told I had to change my PCP. I then tried to do that and was denied because Loma Linda (the hospital the NS works from) is a closed network and I had to wait 18 months until open enrollment. I contacted our insurance advocate and she said it was not true because our insurance was Southern California. I then tried again and was denied again because my NS belonged to a specality group! I said why the ... do you have these list of names available to choose from, if they are not really available.
I found out our insurance rep was visiting to see how we were doing with our insurance coverage (we had just changed groups July 2011) and the meeting was open for questions. I couldn't wait. I compiled a list and took in my denial letters. Luckily, the head of HR and the President of the College I work at was present in the meeting.
I asked the rep why they said we had 100's of doctor's to choose from, when it really wasn't the case. I explained the basics of Chiari Malformation and told him when I google it - I only find three neurosurgeons in California and one was pediatric. I then said if you had a rare birth defect that caused you to feel like your head wants to explode everyday all day long and that if it did many people would get hurt from the mess of bones hurling through the air at warp speed and that this rare birth defect only happens in 1 of 7000 people and is often misdiagnosed and the best shot at relief is decompression surgery where someone cuts you skull and neck open and makes major changes - would you want just anyone playing with your skull and brain?
Well he was very responsive and very nice. He took my name and the name of the NS I wanted to see at Loma Linda and said he would get in touch with me. Within 2 weeks I had a "Special Approval for Second Opinion with an Out of Network Specialist" letter in the mail. I was so happy!!! The letter was very specific, but it allowed me a chance to see someone who had a clue about Chiari.
My PCP agreed to have a MRI of my cervical spine before my appointment because of my back pain. I took referral letters from dentists who think I have trigiminal neuralgia, my MRI's, and my cancer background to the appointment. The cervical MRI said the Chiari was only 6mm. He asked me about my symptoms and then asked me about other symptoms to see my response. He did some neurological tests and said I definitely had abnormal reflex responses and something about clonus.
He said he would write a letter to my PCP to insist on a CFS Flow study and he wanted it performed at Loma Linda because he was sure of the procedure there. He then pulled up my cervical MRI on the screen (not just a report) and told me I had arthritis and bulging disks and spoke to me about my spine and what I could do. I was so estatic (happy - really happy!) because he listened and asked questions and offered advice.
He also said it sounded like many of my symptoms were Chiari related and that surgery is no walk in the park. He said it was invasive and had a 75-85% success rate and there was no guaranty and the recovery was long. He was honest, approachable, understanding, and listened. I really appreciated the appointment.
Now I have to wait for the letter and will let everyone know the next steps in HMO land.
The pain pisses me off, but makes me work harder to keep the momentum going on this quest. I will listen to homeopathic ideas, natural ideas, and conventional ideas. I will investigate and if I feel I want to try a method, I will and I will let the group know what I think.
Thank you all for being here. The sharing and caring is much needed.