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Thread: PLEASE! I NEED HELP! [Removing the hardware or not?]

  1. #1
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    Exclamation PLEASE! I NEED HELP! [Removing the hardware or not?]

    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.
    Last edited by lavenderdeer; 09-22-2016 at 10:28 AM.

  2. #2
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    Quote Originally Posted by lavenderdeer View Post
    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.
    Hi Lavenderdeer...

    Sorry that you've got through that experience.

    I haven't had my implants removed, but have known some folks who have. It's relatively rare that someone who has their implants removed has their curves return. At 3-1/2 yrs postop, your risk is probably really low. But, as you say, there's no guarantee.

    I typically tell people to find a surgeon that they like, and then trust that the surgeon is going to choose the best procedure for you. Unfortunately, it sounds like you have no trust in your surgeon. Is it possible for you to go to another surgeon?

    If you can't go to a different surgeon, I'm thinking the best thing you can do is to talk to your current surgeon, and try to get him to tell you why he thinks removing all of the implants is a better option than partial removal. Try to go in with an open mind. It's important to know and remember that surgeons have big egos. You don't want to piss off the person who has to take care of you!

    Good luck.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
    Join Date
    Dec 2008
    Location
    illinois
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    758
    I do agree that spine surgeons have big egos. I do wish at times they could tune it down a notch, it would make it much easier to deal with them,
    I did have part of my hardware removed.But the surgeon left as much as he could. It was in my thoracic and on a nerve. It was only one side.He told me it was extremely difficult to remove the hardware that had been in place for awhile.
    The partial removal was the concert thing for me because it enabled me to get off pain meds and gabapentin.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    I would find another scoliosis surgeon for a 2nd opinion...... One that does scoliosis revision surgeries on an active basis.

    My surgeon fits in the category and our talks were not necessarily smooth at times..... it ran back and forth until we had a mutual understanding, (or until I had the understanding) which was ok, but deep down I knew that he really did have the expertise to get the job done right. Much of this had to do with the uncertainty of spine surgery and that many decisions were to be made only after they got in there. We spent 2-1/2 years talking, so it wasnít a quick sort of thing.....I just wasnít ready..... He had plenty of time to think about my case.

    I would rather have a good surgeon think about my case for a good period of time....in other words, I wouldnít pressure for an immediate answer. They think about our cases deeply and it takes time.

    As Scolis, we do diagnostics such as x-rays and MRIís. Always get your own personal copies burned to disc from the radiology dept after the radiologist has done his reports. This always comes in handy for the future as any diagnostics are helpful should something arise in the future. These diagnostics are your property. I have had diagnostics lost upon surgeons retiring, this is why I say this.

    I like to believe that there is always an answer. I do have my neck issues with herniationís, and have been in extreme pain with my left arm ready to fall off, and was a bit upset with having to re-visit major pain levels once again. After successful scoliosis surgery this was or is a natural emotional reaction, but it did turn out ok in the end. Scoliosis is a teacher of patience, and hope. We all need to be strong individuals.

    I am so sorry that this has happened....and just wanted to welcome you to the forum and let you know that we do understand how you feel...

    If you let us know where you are located, that would be helpful in locating a good surgeon.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #5
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    Aug 2016
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    First of all, I just want to thank everyone for your answers. It has made me a bit more calm about this whole situation. I greatly appreciate it, so thank you so much for your kindness and support.

    The surgeon I got for this revision surgery was supposed to be a scoliosis specialist. He is quite old so he has done it a lot of times. I live in Sweden and I think we have a rule about not every doctor can do scoliosis surgeries here and that you have to be a specialist to deal with this kinds of patients. Which is good. I do not question my surgeons skills, but however, the way he treated me made me feel very scared and he left me with trust issues instead.

    The thing I wanted at first was just removing partial of the hardware. Which he recommended me when we first met. To remove the screw that is wrongly placed, and shorten the rods since they are sticking out a lot which gives me a huge discomfort besides the pain. But on that day when I was supposed to get the surgery he told me that's a very BAD OPTION. I do not understand why he would recommend it in the first place then? He told me that I will probably get an infection, and I will be very unsatisfied with the result. I would get a scar just as long as I would If I removed all. And he also said that he could remove this screw only, but that I would probably return in a couple of years and wanting to remove even more hardware so he thought it's better to remove everything.

    I know that most of the people do not get their curves back from removing everything. But I don't know If I am ready to take that small risk? I have heard that these things happens. So I know it's not impossible.

    Apparently my doctor is going to retire soon (this year), so maybe this visit is the last time I will have to see him. Maybe it's worth just waiting until another doctor takes his place and see what he has to say. But since this scoliosis specialist I have now is supposed to be one of the best in this country, I can't decide if that's wise. Maybe it's better to let him do whatever he want, I just don't feel safe or trust him yet.

    My main problem, I guess, is that I don't really know if I should wait, remove everything or just remove partial of the hardware. I know no one but me can decide this for me, but I guess that's why I am reaching out to you. To hear your opinions.

  6. #6
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    illinois
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    you may wait. You are not happy with this doctor and you really need complete trust, You are in pain but not at big risk for injury. You have waited and a new person may have another idea. This is just my opinion.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  7. #7
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    Mar 2016
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    153
    you may want to ask your doctor about the effect of the implants on the bone marrow http://www.medicalnewstoday.com/articles/285666.php
    Most people think that there is nothing inside bones which is not true.

  8. #8
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    Thank you so much Jackie for your input. I think I might have to wait, too. I just don't feel very tempted to let a person I don't trust perform surgery on my back..

    richardis, I don't understand.. Do you mean that the implants can be dangerous for me, or do you think that the removing of the hardware could be dangerous?

    Thanks everyone.

  9. #9
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    How do implants affect bone marrow? I have never heard anyone ever mention that.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #10
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    There are always dilemmas involving surgery!

    I have just joined the Forum, and this is my first post. I agree that you should get a second opinion, and even a third. The decision for you is not to be made lightly - you need to have complete confidence in the surgeon who will perform the procedure, but equally importantly, you must have a clear understanding of what the operation entails, and why. You need to ask a lot of questions before proceeding. Good luck - you seem to be on the right track by following your instincts!

  11. #11
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    Thank you so much, seriously wow. <3 I appreciate it so much...

    Do you have any suggestions how I can talk to the doctor that treated me this way without, like, insulting him? I have an appointment with him in the end of October... But he is going to retire in the beginning of 2017. So maybe it's good to meet him regardless. But I don't know what to tell him. I just burst into tears when I think of it because I don't know how to handle it.

  12. #12
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    Quote Originally Posted by lavenderdeer View Post
    Thank you so much Jackie for your input. I think I might have to wait, too. I just don't feel very tempted to let a person I don't trust perform surgery on my back..

    richardis, I don't understand.. Do you mean that the implants can be dangerous for me, or do you think that the removing of the hardware could be dangerous?

    Thanks everyone.
    No, I don't mean that. In the near future, I will have to face the same situation, that is, I'll have to decide if I let the surgeon to remove the hardware or not.

    To my knowledge, your surgeon are forcing you to speed up on your final decision because if you delay it too much it may be harder to remove the hardware as bone grows stronger and mesh with the implants. This is why it is a "now or never" decision.

    There are pros and cons on removing hardware. I didn't ask my surgeon directly about removing the rods but in my previous appts he addressed the issue and I understood that removing the rods may be a safer option as their task has been done and they are not needed anymore. Once you are fused implants may be uninvited guests to your body. Despite this, I am not planning on removing them.

  13. #13
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    Quote Originally Posted by Pooka1 View Post
    How do implants affect bone marrow? I have never heard anyone ever mention that.
    I don't know. Additional research is needed. What seems clear to me is that they are cohabiting together.

  14. #14
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    Quote Originally Posted by richardis View Post
    I don't know. Additional research is needed. What seems clear to me is that they are cohabiting together.
    But as far as anybody knows and after all these years, there is nothing to study. There is no sign of any problem just because the screws contact the marrow. There is no smoking gun. Not all artificially created situations are problems. This one does not appear to present problems or we would have heard about it.

    There are plenty of things that do need more research because problems have been noted. This isn't one of them.
    Last edited by Pooka1; 09-27-2016 at 08:01 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    I will grab this thread to ask some questions:

    1.Do rods prevent kyphosis in the fused area?
    If they do not prevent kyphosis in the fused area removing rods may be a good choice for those left with flat-back after surgery.

    2. Do rods prevent proximal junctional kyphosis (PJK) or distal junctional kyphosis (DJK)?

    Sorry for the dumb question.

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