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Originally Posted by kellysf
When I started this 8 years ago, doctors talked about 1/3 improving, 1/3 staying the same and 1/3 getting worse following surgery.
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So in essence that sounds like a 66% failure rate if you count no change in symptoms "no success." That sounds a little more credible and realistic based on what personal accounts are online.
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Then about 5 years ago I started hearing success rates of 85% quoted by doctors. I haven't seen research to substantiate that change.
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It seems that some seem to quote that high, but I have sincere doubts. Where are all the success stories? I have a difficult time believing those with "successful" surgeries are 100% symptom free. My guess they have flare ups even still and you'd think they'd visit a forum like this from time to time. Even if the odds were 90% failure, you'd think that 1 out of 10 'miracle' someone, somewhere would know of.
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I had surgery on my left side, which is my worst side. I am much worse than I was when I had surgery.
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I realize every case is different, but you seem to be a NTOS surgery person with actual experience, whereas most are VTOS or ATOS. Do you know WHY your surgery fared poorly? Scar tissue? Surgeon's fault? Complications? Did you have rib removal and scalenectomy? Was there ever any relief? Did your lung collapse or did you do permanent phrenic nerve damage?
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I certainly understand you are trying your best and dancing as fast as you can. I wish you had more options.
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How do you remain positive? Taking opioids every day - chronic pain? God knows there are crazy side affects with all of those pills. I fear getting to a very dark place and questioning wanting to live like that once I got to a certain point. Are you totally out of options? Could they even do a revision surgery if you wanted?