Wow, am I glad to have found all of you here. I have been reading here for a few weeks but only recently joined.
My scoliosis was originally diagnosed when I was 11 years old back in 1966. I wore a Milwaukee brace for the about 4 years. I was miserable. Supposedly, my "S" curve was stablized at roughly 30 degrees. I don't think I had it checked in over 35 years.
Jumping ahead, now I am 54 years old and I can't even describe the amount of pain I am in. I have lead a fairly active life most of my life, and to find myself so "debilitated" is very depressing. Up until about 4 weeks ago, I was still working out at the gym regularly at least 3 times a week (the work outs seemed to hold off the pain a bit even though I found myself taking it easier and easier). Now none. I can barely walk from 1 end of my house to the other without total exhaustion. My deterioration has come on so strongly and so quickly, that I am totally freaked out.
This latest chapter started roughly a year ago when I felt I "tweaked" something in the middle of a work-out. With no relief after the first week of pain, I went to my see my doctor (internist). After much arguing with him (whom I never want to see again), he finally gave me a referral to the rhuematologist, who gave me a referral to pain management, and then to the neurosurgeon, who finally passed me off to where I wanted to go in the first place, the orthopedic surgeon. He confirmed my lumbar curve is 53 degrees and my thorasic is 38 degree. He used terms like "collapsed" on itself and "deformities" and I thought I was going to vomit right then and there. He also said that based upon my "flexibility" (bending x-rays) that he would consider only doing a partial fusion of the lumbar curve. Then he gave me a couple of names of doctors, outside of my insurance, to get 2nd opinions from. I jumped on that and within 2 weeks, I had another opinion from Cedar Sinai in Los Angeles. (I am insured through Kaiser in Southern California).
This is where my immediate problem comes from. The Cedar Sinai doctor assured me that if I don't do the surgery now, I will definitely need to have it done at some point in my life. I'm in agreement with him in that it's better to do it now rather than later. He also recommended the fusion go from T10 - S1. Ok, not thrilled, but that would straighten/stabilize the large curve and treat the areas where most of my pain is. When I discussed this with my surgeon at Kaiser, he feels he'd rather fuse from T4 or 5 - S1.
I am having a hard time accepting the T4 location versus starting a little lower and doing less by starting at T10. The worst part of it is, the Kaiser surgeon says it's up to me. He'll go to T10 if that's what I want.
Please help me...I don't know what to want. Why does he have to leave it up to me? I just want my life back. I just want to be normal! I just want to be able to walk through the market, stand to cook dinner for the family, and regain my independence. I am so afraid of loss of motion, but I sure don't want to make a mistake and end up back in the operating room next year.
I know I must sound like a baby, and I apologize for that. I'm just so scared. Any advice, information, or prayers are greatly appreciated.
Thank you for being here!
valleygirl
My scoliosis was originally diagnosed when I was 11 years old back in 1966. I wore a Milwaukee brace for the about 4 years. I was miserable. Supposedly, my "S" curve was stablized at roughly 30 degrees. I don't think I had it checked in over 35 years.
Jumping ahead, now I am 54 years old and I can't even describe the amount of pain I am in. I have lead a fairly active life most of my life, and to find myself so "debilitated" is very depressing. Up until about 4 weeks ago, I was still working out at the gym regularly at least 3 times a week (the work outs seemed to hold off the pain a bit even though I found myself taking it easier and easier). Now none. I can barely walk from 1 end of my house to the other without total exhaustion. My deterioration has come on so strongly and so quickly, that I am totally freaked out.
This latest chapter started roughly a year ago when I felt I "tweaked" something in the middle of a work-out. With no relief after the first week of pain, I went to my see my doctor (internist). After much arguing with him (whom I never want to see again), he finally gave me a referral to the rhuematologist, who gave me a referral to pain management, and then to the neurosurgeon, who finally passed me off to where I wanted to go in the first place, the orthopedic surgeon. He confirmed my lumbar curve is 53 degrees and my thorasic is 38 degree. He used terms like "collapsed" on itself and "deformities" and I thought I was going to vomit right then and there. He also said that based upon my "flexibility" (bending x-rays) that he would consider only doing a partial fusion of the lumbar curve. Then he gave me a couple of names of doctors, outside of my insurance, to get 2nd opinions from. I jumped on that and within 2 weeks, I had another opinion from Cedar Sinai in Los Angeles. (I am insured through Kaiser in Southern California).
This is where my immediate problem comes from. The Cedar Sinai doctor assured me that if I don't do the surgery now, I will definitely need to have it done at some point in my life. I'm in agreement with him in that it's better to do it now rather than later. He also recommended the fusion go from T10 - S1. Ok, not thrilled, but that would straighten/stabilize the large curve and treat the areas where most of my pain is. When I discussed this with my surgeon at Kaiser, he feels he'd rather fuse from T4 or 5 - S1.
I am having a hard time accepting the T4 location versus starting a little lower and doing less by starting at T10. The worst part of it is, the Kaiser surgeon says it's up to me. He'll go to T10 if that's what I want.
Please help me...I don't know what to want. Why does he have to leave it up to me? I just want my life back. I just want to be normal! I just want to be able to walk through the market, stand to cook dinner for the family, and regain my independence. I am so afraid of loss of motion, but I sure don't want to make a mistake and end up back in the operating room next year.
I know I must sound like a baby, and I apologize for that. I'm just so scared. Any advice, information, or prayers are greatly appreciated.
Thank you for being here!
valleygirl
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