Hello everyone!
Has anyone of you removed your hardware and what was the outcome? I have been experiencing a lot of pain because of my hardware and my surgeon wants it all gone. I am freaking out about the downsides: that if my spine isn't fully fused it will start curve again. (3,5 year post-op.)
I was scheduled for surgery in June 2016 because my new doc found out in March that a screw is wrongly placed and my rods were poking me (he saw it on the x-rays.) I said I was okay with removing it and shorten the rods. It felt like a great idea. Finally someone who found something ''wrong'' so they could fix it. When I got hospitalized the day before the surgery, I was very nervous for removing the screw but I stayed calm because I kinda looked forward to it. 2 hours before surgery, my doctor changed in last minute that he was gonna remove everything instead of just shorten the rods and removing that screw. I panicked and refused to be put to sleep until I had further information. I wanted a real consultation about the pros/cons and information etc. The doctor didn't have time so the surgery got canceled.
On the afternoon that day he came and told me that my spine was healed. It looked completely fused. I didn't need to worry about anything because he said it wouldn't move. He asked me quite rude if I had read about people re-curving on the internet, like it was something negative and he didn't understand why I was sad or worried. He told be to stop sobbing and just make a decision. He told me that I had 3 options:
1. Remove the screw and shorten the rods, but he didn't like that alternative (so why did he even recommend that in the first place?) because of the risk for infections and he believed I would return in 2 years and want more hardware removed because of discomfort.
2. Remove everything (this is what he wanted.)
3. Think about this during summer and do option 1, 2 or nothing in autumn.
I felt so betrayed and angry for him not telling me at least a week before I got hospitalized. So I left the hospital. I couldn't make that decision in a couple of hours. I felt like he didn't tell me the truth. Because some people I have talked about told me that their doctors told them that this kind of surgery is not risk-free. While my doctor told me that there is no risks whatsoever, which I feel is bullshit. I completely understand that only I can make this choice. But it's very difficult, which is why I am asking other people as well.
Today, I got a letter in the mailbox telling me that I have an appointment with this doctor in October. But I don't know what to do.
For now I am in daily dull pain, with some burning/stabbing/pinching moments when it get's really bad. Some days are definitely better than others. But on the worst days I take morphine pain killers. I cannot have a full-time job and some days even house chores becomes challenging. I feel the hardware really well when I'm sitting, laying or leaning against things which causes me discomfort as well and makes it difficult for me to get a good nights rest. Besides from the physical pain, this makes me very depressed aswell. Not knowing how the future will be. There is not an easy decision to make, because it feels like a gamble since there is no 100% insurance that it will be fine and I don't know if I could cope with another curve and another spinal fusion surgery.
I am considering waiting maybe one or two years. Just wait until the pain gets unbearable, but I feel like I am just pushing the problem further away because I know I will not be able to live like this forever. What would you do in my situation? I really need your advice!
Edit: I am fused from T8 - L4 if that does matter. I had a 70 degree curve post-op and I am below 20 degrees now. I am 20 years old btw.
Has anyone of you removed your hardware and what was the outcome? I have been experiencing a lot of pain because of my hardware and my surgeon wants it all gone. I am freaking out about the downsides: that if my spine isn't fully fused it will start curve again. (3,5 year post-op.)
I was scheduled for surgery in June 2016 because my new doc found out in March that a screw is wrongly placed and my rods were poking me (he saw it on the x-rays.) I said I was okay with removing it and shorten the rods. It felt like a great idea. Finally someone who found something ''wrong'' so they could fix it. When I got hospitalized the day before the surgery, I was very nervous for removing the screw but I stayed calm because I kinda looked forward to it. 2 hours before surgery, my doctor changed in last minute that he was gonna remove everything instead of just shorten the rods and removing that screw. I panicked and refused to be put to sleep until I had further information. I wanted a real consultation about the pros/cons and information etc. The doctor didn't have time so the surgery got canceled.
On the afternoon that day he came and told me that my spine was healed. It looked completely fused. I didn't need to worry about anything because he said it wouldn't move. He asked me quite rude if I had read about people re-curving on the internet, like it was something negative and he didn't understand why I was sad or worried. He told be to stop sobbing and just make a decision. He told me that I had 3 options:
1. Remove the screw and shorten the rods, but he didn't like that alternative (so why did he even recommend that in the first place?) because of the risk for infections and he believed I would return in 2 years and want more hardware removed because of discomfort.
2. Remove everything (this is what he wanted.)
3. Think about this during summer and do option 1, 2 or nothing in autumn.
I felt so betrayed and angry for him not telling me at least a week before I got hospitalized. So I left the hospital. I couldn't make that decision in a couple of hours. I felt like he didn't tell me the truth. Because some people I have talked about told me that their doctors told them that this kind of surgery is not risk-free. While my doctor told me that there is no risks whatsoever, which I feel is bullshit. I completely understand that only I can make this choice. But it's very difficult, which is why I am asking other people as well.
Today, I got a letter in the mailbox telling me that I have an appointment with this doctor in October. But I don't know what to do.
For now I am in daily dull pain, with some burning/stabbing/pinching moments when it get's really bad. Some days are definitely better than others. But on the worst days I take morphine pain killers. I cannot have a full-time job and some days even house chores becomes challenging. I feel the hardware really well when I'm sitting, laying or leaning against things which causes me discomfort as well and makes it difficult for me to get a good nights rest. Besides from the physical pain, this makes me very depressed aswell. Not knowing how the future will be. There is not an easy decision to make, because it feels like a gamble since there is no 100% insurance that it will be fine and I don't know if I could cope with another curve and another spinal fusion surgery.
I am considering waiting maybe one or two years. Just wait until the pain gets unbearable, but I feel like I am just pushing the problem further away because I know I will not be able to live like this forever. What would you do in my situation? I really need your advice!
Edit: I am fused from T8 - L4 if that does matter. I had a 70 degree curve post-op and I am below 20 degrees now. I am 20 years old btw.
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