I had my appointment with my scoli doc today. He totally did an about face on me and told me that NONE of my pain fit with scoliosis. The last two times I saw him was just the opposite. Last month he told me that he was surprised that my neck didn't hurt worse because of where my curve is and I am using so much energy just to hold my head up. He told me if it gets worse to come back and see him and that pain was definitely an indication for surgery. He just wanted to make sure that I would get at least an 80% improvement in pain when we were done. He said that I would most likely need hardware removal surgery after the fusion. So my pain is bad enough to send me to the ER, unable to barely move. I was having muscle spasms so bad I could barely breathe. I get severe cramping in my scapular area, pain in my bones of upper spine and neck. He says it's completely UNRELATED to my scoliosis and won't do the surgery. He said if I had a 60* curve he would do it. Mine is 46* which, he told me last month, was in the surgical gray area, but doable depending on how much pain I am in.
I am on heavy narcotics and can't even sleep through the night because of pain. I had to get a new bed, so I have to sleep separate from my dear hubby to get any comfort. I just don't see how he can say that this is unrelated to my scoliosis. Until now, he was the only scoli doctor that believed me. I don't know where to go or what to do. I started crying right there in his office. He didn't have any advice on where to turn. I'm totally at a loss. I don't have the money to travel around the country looking for a doctor that believes me. He thinks I just have some sort of pain syndrome or something. He said he didn't want to label me, which made me think that he thought it was all in my head. I made it CLEAR to him that I did NOT want to be on all the meds I'm on and that I was desperate to try anything, even going through surgery to get some help. He just said he was sorry he couldn't help me and left me in the room crying. I am SO devastated!
I am on heavy narcotics and can't even sleep through the night because of pain. I had to get a new bed, so I have to sleep separate from my dear hubby to get any comfort. I just don't see how he can say that this is unrelated to my scoliosis. Until now, he was the only scoli doctor that believed me. I don't know where to go or what to do. I started crying right there in his office. He didn't have any advice on where to turn. I'm totally at a loss. I don't have the money to travel around the country looking for a doctor that believes me. He thinks I just have some sort of pain syndrome or something. He said he didn't want to label me, which made me think that he thought it was all in my head. I made it CLEAR to him that I did NOT want to be on all the meds I'm on and that I was desperate to try anything, even going through surgery to get some help. He just said he was sorry he couldn't help me and left me in the room crying. I am SO devastated!
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