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Suddenly life has changed

I'm feeling so low and although I'm surrounded by family, feel so alone. I had a revision discectomy nearly 3 weeks ago and it hasn't left me in a good way. I've been told that both this and the previous discectomy failed. I've lived every day for 3 and a half years in pain. Now I can't walk properly due to foot drop & can barely move my foot in any direction or feel much of my leg. The sciatic pain is kind of being held at bay due to the amount of medication I am on, but the doctors want me to come off it. I've been left in pain so many times by doctors & whilst some tolerable level of pain is manageable, I don't want to live in agony again. At the moment, I've tried to reduce the dose I'm on, but when I miss a dose, the pain is too much to be able to get out of bed and exercise. My surgeon has ruled out fusion due to increasingly poorer outcomes from surgery and damage and severe inflammation to sciatic nerve. I've been told that little disc left & what is, is fragments which will continue to come out and irritate the nerve but my only option now is to live on pain relief.

I have another long term health condition which is causing further scarring to my sciatic nerve and is making my back problem worse. Treatment for one condition makes the other health problem worse and vice versa. I've decided to give up my job when ive recovered more because my boss does not understand my health problems & makes rude comments to me being a mess & keeps blaming my poor health for failures in our project so I'm now starting to look incompetent in front of colleagues. The job also involves sitting most of the time which causes me awful instability in my spine and horrendous pain - and this was before more of my disc being removed. I've never had children and before reherniating my disc, was trying with my fiancée - the longer I leave it, the worse my other problems are getting. I can't imagine now how I could ever become pregnant with back instability & pain, but the longer I leave it, the worse my back is inadvertently becoming due to this health problem getting worse (it's complicated!). So 3 months ago, I was working towards one life path and now my life has suddenly and completely changed and it's really upset me.

I'm completely lost and really only have my mum to talk to a bit. The more she knows, the more she worries and the more guilt I feel etc. My fiancee is too upset to talk or listen and has blocked off from me completely. Since this most recent surgery, I've cut myself off from nearly everyone. I've seen two very close friends & have explained a bit about the drop foot (because this is visible) but haven't said anything about prognosis for this, my back, other worries etc. I'm normally an emotional person, but I haven't been able to cry. I know I'm anxious because I can't stand to be alone, and I fall asleep every night to the TV so I don't have to lie in a dark room with my thoughts. Writing this now is the first time I've said (written) all of the concerns I have and admitted that this surgery hasn't gone well. I feel like I'm letting people down because I don't feel like the carefree person I used to be. I'm scared that my friends and colleagues will see me differently now I have a visible and very obvious limp or just not understand everything I'm going through/will go through and the pain I have. I'm so sorry to ramble, I'm lying here again watching hours of rubbish TV and thought just maybe, writing it all down would help me to sleep and less worried about everything.


  • dilaurodilauro ConnecticutPosts: 9,865
    I am sorry that right now things are not where you want them to be. Dealing with spinal problems, chronic pain, spinal surgeries is very difficult.
    I think we all understand the physical impact it has on us. The day to day pain, hard to get up, hard to get around, the things we have to give up.

    But its always the emotional impact that I believe is much greater. Just as many others can not see spinal patients as being sick . After all, we look ok. Seeing the toll that it takes on us as a person is even harder to see.

    Many others dont understand or dont even want to understand. We try to explain our situations to others. At first they show signs of interest and caring, but after a while that starts to fade. Then as that snowballs, we feel more alone, start to drawn in, and almost shut out the outside world.

    So, yes, our lives to change. But it never has to stay that way. Acceptance of our current situation is key. From there we establish a foot hold on what we can move on to. Its the common phrase... Is the glass half full or half empty. Its in our power to make that decision.

    I know from my own experiences that if you look at the dark side of things, it only gets darker. Finding ways to come above that and look towards the future as being bright and exciting. That is the only path that any person dealing with chronic pain needs to travel.

    Its not easy, you may say, sure its easy to say, but not so easy to live. True.

    Life has changed, but from here on, lets see if that change can all be positive.

    My best to you
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Sheri76Sheri76 Michigan Posts: 497
    I'm so sorry you're having to go through all that you are. I'm sure the disappointment is overwhelming at times, praying for strength for you.

    From reading your post, I was wondering why they didn't do a fusion first, instead of the discectomy. Does that have to do with your other condition? I was wondering about that too. You said there is inflammation causing sciatic pain, I was hoping you could share a bit more on that , when you're up to it.

    I have found that true friends will stay with you, the ones that don't, I have to let go of the hurt to make way for new friends.

    I good cry does help....if I'm ever feeling I can't let go, I'll listen to In the Arms of an Angel, by Sara McLachlan....has a a way of tapping the flow of tears, and comforting me at the same time.
  • Thank you Ron and Sheri, for the first time, I feel I'm being understood by the words you've written. Ron, you mention acceptance. For me, this has always been so important and takes away the depressive thinking. I worked and worked on myself to reach this acceptance about living with chronic pain and I would say it did take me a good few years to reach some level of acceptance that I would live in pain for a long time/forever. Perhaps I had never fully accepted that this would be how my life would be, but I would say, that 3 months ago, I was happy despite my pain and had learnt how to manage this in my daily life.

    What I am now finding so incredibly hard is that I feel I have another whole lot of stuff to deal with and accept. Yes I will still live in pain - that has not changed. But now physically I am really struggling. I had, after 3 and a half years, finally managed to rejoin my gym. My disc reherniating within 4 weeks of me getting back in a gym. Now I'm unable to walk for more than 15 mins and the docs are unsure if my foot drop will improve to the point of being able to walk without a stick. For me, I know I will be able to come to terms with this at some point. What worries me is the LT prognosis for my disc if it will continue to fragment, but other surgeries are out of the question. I have no idea when this will happen, how I will cope when this does happen or what impact this will have on my functioning. It's living with the unknown that causes so much anxiety.

    Sheri, when my disc first herniated 3.5 years ago, the MRI showed it was a very small contained herniation. When I had the surgery, the disc had sequestered and lots of fragments were entangled and dislodged the nerve so it was more major than expected. It seems the same thing has happened again and now I've been told what is left is just "jelly mush" so will cause more instability & continue to herniate. I have a hormonal condition (it doesn't sound like it should be related and the doctors are still trying to work out why the two problems are affecting each other) which I've suffered from quite badly for 15 years and had 3 surgeries for it. The cells have been growing on my sciatic nerve and of course, this causes more nerve pain. Each month, my monthly cycle worsens my sciatic pain and creates more spinal instability. Unfortunately, I've exhausted most treatments for this and pregnancy/hysterectomy are only real long lasting treatments. Clearly both polar opposites and now it seems pregnancy is out. My surgeon believes this might be too much for me to handle, but I'd like a second opinion. Either way, this creates far more complexity to the situation. If I could remove my monthly cycle, my back/ nerve pain would improve. Dealing with these 2 chronic problems has been so difficult and I've really had little help from my doctors, who don't understand and don't seen to want to.

    I keep thinking that where I want to be isn't the old me, it's just a happy version of the current me. I find making decisions and having uncertainty is what is so hard. Once this is done/has changed, you can begin the road to acceptance. Ron, I really admire your outlook and I don't know what you've been through, but it seems, you've found a happy and accepting place. How did you get there? I read a few books about chronic pain and learning to feel positive, but I'd really like some help. I want to have these thoughts and I know I am the only one who can control this. I'm not sure how to do this. I don't want pity from my friends, I want understanding and I want to be resilient enough to push through the negativity about my condition and to just feel happy again. Thank you for all your comments, it is so nice to feel that I'm not completely alone.
  • dilaurodilauro ConnecticutPosts: 9,865
    edited 12/02/2015 - 2:19 AM
    The best way I can explain this is by having you read a blog I wrote and a Veritas technical writer published.
    Chronic Pain beyond Physical Impact
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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