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Has anyone had the troubles I'm having?

I am 19(yes very young) and had a back stimulator put in my back in August due to a life changing softball injury to my knee that caused complex regional pain syndrome(the kind you can see on a bone scan). Everything went good but in order to play softball I had to have the box moved to the right side of my back because of the possibility of a softball hitting it and damaging it. I had revision surgery December 2, 2016 and that is when everything started going downhill. After surgery I noticed the middle incision opened up(all 3 incisions were closed with invisible stitches under the skin), it wouldn't stop bleeding which meant I needed to go to the ER where all they did was put steri strips on due to they couldn't close it for some reason. When I went to my doctor he said it looked fine and that it would heal so I definitely believed him. Around the beginning of January it still had not closed and that is when I got an infection which needed emergency surgery to clean it out and closed with real stitches and come to find out it was staph infection but luckily did not go deeper to where the leads were. Everything was going alright but then the incision got infected again with staph again and I had 2 emergency surgeries last week that involved going into the middle incision as well as where the box was because that became infected too and was let out of the hospital Tuesday. I have been seeing a disease specialist who put me on only oral antibiotics. Now don't get me wrong I love my surgeon he is one of the best where I am that deals with these things and he is trying his hardest to let me keep it in because he told me that if any other surgeon would of gotten the lab report back saying it was staph they would of taken it out right then and there because staph is SO hard to get rid of. So I thank him so much for everything he has done, but I know he is ready to take it out but I'm not being im so young and without this device I have no life. I cannot take drugs that help because I am allergic to most of them and the things they do give me that are pill form really do not help. Since Tuesday I've felt fine but yesterday I started sweating a lot but had the chills and spiked a fever which came down today but the sweating and chills are still there and both my incisions are very tender so I am worried I have staph again and I don't think my surgeon will be willing to try and clean it out again just take it out. I am not sure what to do and I don't want to take it out because I am so young and I have my life to live and I know staph can kill you but I do not have a life if i do not have this device because the pain in my knee and unbearable.(I had a meniscus tear and permanent nerve damage in my knee)
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Comments

  • SavageSavage United StatesPosts: 7,241
    hello atilson132200 !
    i am curious about your fear of having it removed.
    if doctors were to remove it now and allow you to heal from infections, ....
    ...would they be able to redo procedure once you are healthier again and without infection...?

    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • Hi Savage! There is an option to have it taken it and let everything reheal for about a year and then try again but would involve going from a different angle in order to not touch any of the scar tissue because the risk of staph coming back is so high for me. The only bad thing is that my surgeon has done it I wanna to say on two other people who both said that it doesn't cover the pain like it did before. He said its a 95% chance that it won't be like it was before he takes it out so that's why it worries me. I also have one other option where I can take out where the box is and leave it out for 3-6 months and let that spot heal and make sure all the infection is gone but then again it's another surgery and I'm tired of surgeries 
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  • SavageSavage United StatesPosts: 7,241
    I understand you are feeling you have some life back with having the device, as you stated in your initial comment...and being young, I do realize how important that is to you.
    And I sure do hear you about you being tired of surgeries. No one looks forward to them.

    Curious if you are on long term, or indefinitely on antibiotics for the infection?
    I would think that to be a consideration in your decision making process.
    Did doctor say any risk/benefits cost to your body with that?

    Curious if doctor explained if infection to stay within site as presently is?....or possible to spread ?
    Can the infection cause any damage to tissue and or surrounding tissue?.....which would then to limit options open to you down the road?

    I don't understand doctor saying 95% device will not be as effective if removed and when healed and reinserted....
    I may have missed it, but did doctor say why?
    Not sure what brand of device you have. Are there other options of other very good stimulator?
    Maybe other members to understand that better.

    From your initial,comment, you mentioned that ....I know that staph infection can kill you, but I don't have a life without this device.
    That seems to cut off the options offered to you.

    Because you are so young, one never knows what new product is around the corner.
    Taking a few months to heal from infection may add more quality to life....esp in the long run.

    I may have missed it, but did you get another doctor's opinion on all of these issues?
    You may be amazed at what someone else may offer.....and or agree with your current doctor....?
    Another opinion, esp re such so serious is always good idea.....in my opinion.

    None of us here are medical professionals....and so I do not know the answer to any questions I ask....as I ask this also....Has your doctor been seeking consult with an infectious control doctor ?

    When my son had variety of surgeries after and not directly related to his kidney transplant, I believe it was an infectious disease doctor who worked along with the surgeon and guided treatment to prevent and or care for his infections.

    Worth to,check into, I think.

    I understand this is a huge transition in your life. 
    When I had my big change in my life with my chronic pain ....I had anger and fear of the unknown, I referred myself to psychiatrist and did some talk therapy.
    When it seemed my body was taking over my life, I learned I'm still in control....for me that meant mainly in my attitude with this change in my life.
    How I was  going to to move forward and make the best choices possible for my present and for my future.

    Initially, I only saw health...being pain free, or way less pain....or I saw chronic pain taking away all my joy in life.
    I was way to one extreme or the other.

    I have learned it takes a lot of patience for the roller coaster of pain management.
    The try and try again to have very best for healing for the now...and for my future.

    I wish you the very best with your decision!
    Please keep us posted!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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