I have my third appointment Friday with an AMAZING neurosurgeon to talk about my revision surgery. After years of looking for answers as to why I was getting worse and worse after my decompression in 2001. I finally fired my neurologist that wouldn't order the Cine MRI I was asking for for 5 years and found an expert in Chiari who was a Neurosurgeon. My first visit with her was a revelation! She was the first person I had ever spoke to that knew more about my condition than I did. She rattled off 5 things that could be causing my continued symptoms and ordered a full set of MRIs and the Cine MRI. It came back that I had a full block of cerebral spinal fluid where I had my original surgery because spinal fluid built up, my patch had become loose and I have an egg shaped pocket of fluid built on top of the patch.
She recomended surgery and I told her I wanted to find a new doctor to help me with meds and I needed to get a full physical because I hadn't had one in years. I asked her to recomend a nuerologist and she said she would. It took me a few more months to get appointments and get tests and I thought that when I was ready I could get the surgery. I went to the doctor she recomended and he was awful. He told me I didn't have Chiari anymore because I had decompression surgery and treated me like a hypercondriac and a liar (this has happened dozens of times to me) He also kept telling me that the infomation the NS gave me was wrong. So I walked out on the appointment. I told him he was rude and I wasn't going to sit there and listen to him talk down to me.
It took me a few more months to get all my tests done and I found a great primary but gave up on finding a nuerologist. Finally I was ready and I called the NS office and her assistant told me that the Nuerologist had said that I wasn't a candidate for surgery and that the NS agreed!! What? I cried and told the assistant what happened and begged to have another appointment to talk to the NS. She agreed but it's been cancelled twice and barring another cancellation I go Friday.
I am so nervous and worried. I don't know what to say to her. She really gave me hope that my life might change even a little bit for the better. I told my kids they got excited. My poor husband was hopeful as was my whole family. And now it all depends on what she says on Friday. I don't know if that other doctor told my insurence company I wasn't a candidate. I'm rambling but I have gone through h*ll to get here and I just need it to go well. I needed to vent and my husband doesn't need to hear all my worries..