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great expectations????

backache99backache99 Posts: 1,338
edited 06/11/2012 - 9:02 AM in Chronic Pain
its been nearly 4 months now ..and i am NO better as far as i have the same back ache .i still cant sleep and washing myself is now even harder ! .i still need buckets of pain killers .still can't walk/drive far and i am feeling pissed off.after all i have been through.
is this is ? dose it get any better ? or was that the last turn of the card ? if so why did i put myself through it .i must be one of the unlucky ones {the third that get worse of no better } maybe its because i am not young and i was in poor health before the operation and i have been operated on previously ...i don't know ....i just wish i was 20 years younger !!! well don't we all !
1997 laminectomy
2007 repeat laminectomy and discectomy L4/L5
2011 ALIF {L4/L5/S1}
2012 ? bowel problems .still under investigation
2014 bladder operation may 19th 2014


  • Tony,

    I think you need to give it more time. As Someone whom has many operations behind them, I honestly feel it takes at least a year to feel better. Of course one the procedure is over, so much of the work is put on us, with the no BLT, therapy, eating right and so on. But at the end of the day I still think you need to do the work and see what you feel like at the year mark. It sounds like a long time, but when you hit it, you will think wow a year has really gone by? So hang in there and keep working at getting better, I know hard, but that is all we have somedays.
  • I agree, you have to give time, time. I know it sucks and our minds are our worst enemies. What I found helped me, was to focus the anger and use it to motivate myself to get in better shape, which in the long run made me feel like a new person. I figured that I was going to hurt if I was careful and sedentary and I was going to hurt if I work each day to get a little healthier by walking further and further and making a concerted effort to get into better physical condition. The anger really kept me going and looking back I can say it was the greatest asset to me. Once I tapped its power, there was no stopping me.

  • Tony:

    For a second when I saw your post I thought you were going to tell us that you just finished reading an interesting novel written by one of your countrymen - "Great Expectations" by Charles Dickens. And I was going to ask you to tell me about it because I never did read it in school when I was supposed to!

    So let me briefly mention patience, and I share this hoping that you will accept my comments openly. One of the benefits of this Forum is the fact that the members are pain sufferers and their comments are grounded in REALITY. Their comments are not some "pie in the sky," utopian, dreamworld, fantasy statements. They are real people sharing real advice - unlike Dear Abby, etc.

    That having been said, I encourage you to read, save, reread the comments on this forum - including your own. As time passes you will be able to detect the change in your state of health as it is reflected in the dialogue on this forum. As a means of mental health our minds will block out the painful/horrible events in our lives (to some extent) and this allows us to continue this journey of life. Otherwise we would be overcome with such mental negativity that proceeding would appear physically impossible. The painful events did happen, but our minds are wired to store that memory in such a way that we don't continue feeling the pain.

    OK, bla, bla, bla and so what. Here's my point. You are a survivor. You are stronger than the debilitating pain. You have more perseverance than the persisting pain. AND, you have more patience than the impetuous pain. It's a fight my friend, and you are winning.

    Now go read "Great Expectations" and tell me what it was all about.
  • that you will end up with no improvement, but I think the others are right in that it's probably too early to say. I remember (although I realize it was through a very drug-induced haze) that I kept asking myself why I went through all that. I had horrible scars, major stiffness added to the pain, and a right leg with numbness on the outside of the calf and half my right foot that was numb. What in the heck did I go through all that agony for? True, I could walk (if you called shuffling around with a cane walking) better than I could before the surgery, but not much else had improved. Just when I'd think hey - maybe I'm beginning to feel just a little better, maybe I could walk one block more today, I'd get a severe set-back and end up on a medrol pack and Lyrica again to calm my inflamed nerves. Remember Tony, you've got pieces of metal in there that your muscles are still trying to adjust to. Your bones have bolts in them. I think I mentioned before that it was a full 18 months before I realized that I could almost walk like me again. It IS frustrating as all hell. We know that. Hopefully, you will be one of the lucky ones, Tony. Here's hoping that in a few months, you begin to realize that some things are in fact getting just ever so slightly better. Some day I pray you can say you are happy you had the surgery.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I was just getting ready to send Ron a PM and ask if you were still around - as I had not seen posts from you in quite awhile. Then I click on my buddies posts link and found you :)

    To say how sorry I am that you are still feeling this way is a understatement :(

    Are you Drs telling you pretty much what the other members here are saying - more time - more patiences?

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I really understand your frustration Tony. It is very difficult to be told you need to give it more time, especially when you've been through so much and want to start doing some of the things you did before surgery, but can't yet as you feel you haven't progressed at all and still experience the same level of pain.

    I know you are looking after yourself well, being protective of your back and being pro-active in your recovery by going swimming as often as you can and perhaps walking the dog etc. - these are things you could NOT have done more than a couple of months ago - so you have improved alot since then.

    Please don't get disheartened. You're doing everything right and have been reassured by your surgeon, which is very positive. I think the worse thing is all the waiting and the patience that is required, especially when we're feeling vulnerable and frustrated. We naturally want things to improve more quickly so we can start living our life and do all the things we have put off for so many months/years.

    I'm sure, if you look at your first posts straight after surgery, you will see that you have indeed improved since then. Is there anything you can do at home as a hobby that might help to take your mind off things for a little while?

    I'm getting a bit of stick at home these days for returning to work too early AND for doing (very) small jobs in the garden etc., but my logic goes like this:

    My back hurts even if I sit/lay down doing absolutely NOTHING, so I might as well do SOMETHING in the same amount of time. Does that make sense?

    I'm not saying that our situations are the same by any means, I'm just explaining how I'm trying to look at things personally as a means of trying to deal with stuff psychologically, because at the moment it doesn't look as if the pain issues I have are being resolved just yet.

    By the way, as a result of the onset of depression I have experienced since the last surgery and the subsequent pain issues, I have also very recently been referred to see a Psychological Wellbeing Practitioner. I have only had one session, so don't really know how effective it will be, but if I can be equipped with a different coping strategy to deal with the pain, then I'm open to try anything!

    This was organised through my local GP's practice and perhaps there might be something similar for you to tap into, should you feel the need? It's just a thought.

    I really hope you continue to improve, even though I know it might be only very tiny steps, but at least they are in the right direction.

    Take good care xx

    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!

  • So sorry to hear that you are still struggling with pain, but I believe that there is still hope. I don't want to sound like a broken record (doesn't that sound old fashioned!), but 4 months after a spinal fusion is still very early days. Like lstellar, I also hope one day that you will be able to say that you are glad that you did have surgery.

    I remember that your surgeon did warn you that this was going to be a long haul recovery. I know that the timing you were given was longer than most are told. I suspect that your surgeon could see that your problems were going to need longer than most to heal, so he warned you to prepare you that this was a long journey. Was it 2 or 3 years that he talked about? Well, you still have a long way to go. I know that it is hard to find the patience to do this, especially when each day seems the same, without noticeable improvement. As Sue suggested, try to find and read your very early posts after surgery. Hopefully that will make you realise that you have come a long way, even though you are still very limited in what you can do.

    For me, at a year out, I felt that I was ever so much better and was very glad that I had surgery. Then at 18 months, I was aware that I had continued to improve. If it wasn't for all the other issues in my spine at other levels, I would probably be feeling 20 years younger! It would be great to look 20 years younger too!!

    I personally find walking to be really helpful. Even when I start out in pain and don't feel like it, by the time I get back home (after 2 miles) I definantely do feel better and am so glad that I persevered on the walk and didn't give up. It is also emotionally uplifting to get out in the world and fresh air and feel part of life.

    You are not alone Tony. There are many others who are living a life of chronic pain. I know that doesn't change things, but hopefully it helps you to feel stronger to cope. Don't give up hope of reaching a point where you feel that the fusion surgery was worth all of this yuk!

    Take care
  • Although we all differ it is hard to tell someone this is going to be a long recovery even if things go well, that is not what they want to hear, setting higher expectations that are unachievable is a recipe for disappointment, depression and that guilty feeling, that in some way we should be more able already.

    Even if you double the time and add some more then that is a reasonable objective, I see people who come here with unreasonable expectation of recovery either in themselves or medical opinion I have yet to see any patient be fully functional even near this time, so some element of communication is going wrong somewhere.

    If they told you 15 months and it was less you feel some sense of achievement, rather than failure of unrealistic objectives from the start, it was never going to happen in that timescale and that is nothing you have done or not done.

    We never see those tiny changes of improvement and expect bigger things to happen more quickly, it take as long as it takes, that seems an uncaring estimation, who would not want to get back to normal and pick up where we left off.

    Tony you have come a huge distance, from where you started your progress has been fantastic, you have had a difficult time and already acknowledged your view of new pain now differs, I have watched you grow and come to accept those difficult challenges, we need people like you to show others it can be done, many look to you for knowledge and encouragement, having been in chronic pain for 22 years now, I know how hard you try and good on you. I would not say to you it is easy when it is not, you just need more support at this time, and will share that gift with someone else when they need it from you.

    Take care, you are moving forward Tony.

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I think that both you and I have too high of expectations. I got my surgery 1 mo. before you. People tell me that I can't compare, and point out why.We were a lot younger and in much better physical shape. I know for me, that for 1 1/2 years. I didn't do (couldn't do) anything physical at all. So I was really in lousy physical shape. There are so many things that I've been told. That I just shouldn't try to figure out any kind of expectations. And did I mention poor mental shape? I think that's where I worry about both you and I the most. We want it so bad. And have expectations of how things should be going. This is a hole new animal. That I guess we've never seen before.We though we had. But ...no... we've never been here before. And it's scary, 'cause we've been to so many places and seen so many different animals that surely we've seen these and been to those too. But we haven't.
    I think we need to take this one day at a time. And measure our progress in months. Not days,weeks, or a month.
    I say all of this to you 'cause I worry about you! And surely I need to apply to myself to!
    I've had a couple of really bad days. And this may just help me out too!
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • i sometime think and then get worried that ;;time is running out ;;; .i say this because there i am lay on my recliner .the sun is out and the dog is wanting walking .i have to ignore the dog shut the curtains and lay on my recliner ans try to get comfy and try to sleep .THEN as the hours roll on i am annoyed with myself as another day has been wasted .on the odd occasion when i will drag myself to the park {in the car with the dog] and let him have a run around whilst i plod around {not enjoying myself at all due to pain }when i get home i am sweating like mad feeling ill and in more pain and think .why?? did i do that ?? same thing if i go for a swim .i get home feel ill and wonder again ..why??.its not bloody fair ..even simple things like walking the dog swimming even food shopping are extremely hard work and no pleasure at all.kath dose the food shopping and normally takes the dog for a walk as and when she can .but things were so different a few years ago.i walked my other dog for miles i swam 4 times a week .yes i was in pain ,BUT nothing like what i am today ..and the thing is i don't see it getting much better ..ever since the operation 29 dec 2011 i spent the fist 6 weeks lay on my recliner with the curtains shut unable to move kath brought small amounts of food to me and she helped me shower .{i felt very frail and old}but now my mind want to do stuff but my body can't do it .try as i may any exercise i do almost kills me .i can't find pleasure in anything as PAIN will always ruin anything i do .the best result i can hope for is a warm room a nice hot meal a comfy recliner and then a few hours sleep .and for me that's a good day ..how sad is that!! .i am nearly 46 and that's still young for today's adults .i have never been lazy and i have always worked hard up until my first operation .i can't imagine ever working again now as pain and constant fatigue are always 2 problems that will never go away .day after day its the same old shxx,and i hate it ..i thought that this operation would be hard work but i did not expect things to be so much harder than they were before the operation .even simple things like showering are so much like hard work ..trying to clean oneself from the waist down {WAIST ..i wish !!]
    IS IMPOSSIBLE.i was never told that simple thing like personal hygiene would be a problems post op sex is impossible as i have permanent nerve damage and i have said many times on here i don't even feel like it and my body is so knackered now sex is the last thing on my mind .i did not think that at my age i would have to live as i do .its a bloody shame .and to make things worse i have just found out my ex wife{who i am still very close to has liver problems potentially serious}and still the clock ticks on and on and on !!! another day is gone
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • The one thing that is for certain, is you won't ever gain more energy or get into any semblance of decent health as long as you are stuck in your recliner.

    I had to get angry and decide that if I am going to hurt all the time, then at least I will be in better shape. So I pushed myself to walk more and more every day, multiple times a day until the distance and time and pace I could walk started to increase and my level of pain become a bit more tolerable. I HAD to do it. I didn't want to rot away being a couch potato in pain.

    I knew that no one else could do it for me. No magic pill could make me feel good enough to get up off my butt. I had to dig down deep and find the intestinal fortitude to drag myself off the couch and onto my feet.

    Cleaning oneself comes as we slowly get the muscles moving and working once again. Flexibility and movement will come slowly, but it will come. The key is to just not quit. I keep a daily record of how long I walk and the times. It gives me a progress chart with which even though I may feel like dirt, I can see the progress.

    So for what it's worth, drag yourself out of that recliner and get that painful achy body moving!

    Kindest Regards,

  • For whatever its worth, Many of us have to plan every litle thing and strugle to get dressed and find the motivation to do every litle thing around the house or to walk and any activity is very frustrating for sure,

    As i stumble around every morning with stifness and legs and hip hurting whiile puting my socks on and pants with feet always geting cought in the pant leg because legs feel like they weigh a ton triping over my own legs like a drunken fool,

    As frustrating as it is i just have to laugh at myself thinking aint this a mother trucker!
    If i dont laugh about it and let it get to me i will kick a hole in the wall or kill someone,

    I push on and go down by the river with my fishing pole cast the line with my jig and catch a few bass as my legs are ready to giive out pushing through the pain untill i can barely walk back to the truck and barely can drive myself home,

    Crash on the recliner for few hours again before trying the next task at hand,

    This has become a way of life after multiple surgery! Now you stretch and stretch untill you cant stretch no more breaking up the stiffness and jump on the tractor to cut the grass and clean the yard while you are all stretched out and after back on the recliner,

    The hardest thing is to accept this way of life but not accepting it and not doing any activity is way worse mentaly,

    Tony. Things will get beter in time after total healing but many of us will still be dealing with the aftermath of such surgery for lifetime,

    Expecting too much from ourself many times can be our worse enemy as others have said,

    I look at all the work needed around the house and realise the rate i am working on it probably will never get done, At times it pisses me off and other times i just look at it as oh well it gives me something to do when i am able and keeps me bussy so screw it,

    All you can do is pace yourself each day and do what you can, Nobody likes to accept the fact of being somewhat cripled and not being able to do what we did before this injury,

    But the sooner we learn to accept it and keep pushing foreward on what we can do the sooner we heal mentaly and only then we see any positive,

    Many times we would rather just kill the pain with meds but often thats just not the answer either, The lower dose of meds the beter to just simply cope with more activity is the only way i learned to function,

    Once the meds were at such high dose and still did not help me because it even made me less productive,

    Its very hard to find the perfect combo of how much meds and how much activity is best, But its safe i think to say the least amount of meds posible and most amount of activity as posible is the only way to go,

    Best of luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Tony, I think both "C" and Alex have some real good points. And I think the easiest thing for you to do is lay in that recliner and take life the safe way. Where you can't fail or hurt yourself.
    But that's not in your mental make up. Your a scraper. If you were on a construction site and some big old dude was doing things wrong and you called him on it. And he got smart with you, so you read him his rights. And he didn't like you for standing up for what you believed in. And poked you in the eye and knocked you down. You'd get right back up and take a swing at him. And if he took the punch and swung at you again, and knocked you down for the count. Well, I'm sure in the morning, you'd be right back there in his face and try to knock him down for the count.
    That may not be a good comparison today. Your older and hurt. And wouldn't do that in the first place.(or would I for that matter)
    But it is a good comparison of who you are and what your made of!
    So don't let this pain beast beat you. It hasn't seen the best of Tony!
    Tony, your not going to be able to do something big. But if you set your goal very small, something you know you can do. Get out of that chair and do it. Then reward yourself with a well deserved nap in that recliner.
    And tomorrow make another small goal and do the same.
    And soon this beast will know who he's dealing with!
    A scraper that ain't giving up! image:)" alt=">:)" height="20" />
    Jim :>
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Tony is fighting a big construction dude? Hell count me in! Let me get my 1 iron golf club out of my car so i can take the big boys knee cap out, Then you guys can finish him off,

    But if you guys kill him i was never here got it?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • one wrecked marriage /well payed job finished /7 years of narcotics/3 operations .too many to count painful procedures.loss of so called friends /no social life /no sex life/unable to even wear normal clothing/now add to that unable to wash ones self as i once could {this i find very distressing}.i am unable to go anywhere as i can't sit on anything other than my recliner can't walk far .i could go on but i think you get the picture .and i have no money
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Tony:

    Your current life sucks. Ain't no doubt.

    However, the encouraging words from fellow spineys is a positive. It lets you know that you are not alone in your misery. We can all hold hands as we struggle to walk thru this pain hell.

    Sometimes those encouraging responses from other victims of debilitating spine health are the best remedy and only remedy available. Similar to the consoling remarks one makes at a funeral. What can you say other than "I am here and I care."

    Just like the movie "What About Bob," my philosophy for spine surgery recovery is "baby steps." This consists of a limited number of steps, which are not very long. Gradually you increase the stride and the duration of walking. Ultimately you will improve, but the rate of improvement varies with us all, and the mental challenge becomes the most difficult obstacle. Substitute the physical concept of baby steps with any activity (mental, physical, emotional, spiritual) and it still applies.

    Don't get me wrong. I am not trying to be "Pollyannish" about this. It sucks. But, sometimes we have little that we can do (walk for 5 minutes) and little that can encourage us (posts on Spine Health forum). Regardless, take it all in and continue to push ahead.
  • Airborne72 - Jim has made some interesting comments and he has helped me personally before, so I do appreciate all his contributions. I think he makes some valid points.

    I hope that you will be able to look back and indeed know that you have made inroads on your recovery. I know how frustrating it is when you want things to be right and when your psychological health is at the stage where you feel you should be moving on - but your body does not.

    That's why I have returned to work. I may fail in the end, but at least I will have tried first.

    I have been at work now for 4 weeks and only last week I managed to complete my 4 days (as they are allowing me to take Thursdays off as a reasonable adjustment). My employers have been so supportive, they have amazed me, to be honest.

    Last week, the 4 days nearly killed me!!!! I had to leave early on Wednesday as I had taken extra meds at lunchtime and by 2.30pm I was just about finished. I was trying very hard to remain 'upright' so as not to frighten the kids at the school I work, but it was so hard. I was nearly in tears with the pain! I left early and emailed my boss to tell her so. I suggested that perhaps I should work more hours on Mondays (when my stamina was slightly higher after resting the weekend) and thereby leave that bit earlier on Wednesdays - and she accepted this. Amazing.

    The way I see it, I could sit at home and still be in pain, or pull myself out of bed, get ready and go to work - yes, I am still in pain, but I have something else to focus on.

    I don't know about anyone else, but I am my own worst enemy when it comes to back pain. It totally consumes me and affects every little thing I do. So, I figure I have nothing to lose but to try going back to work.

    I know how some people may think that by returning to work I am actually setting myself up to fail, because by its very nature, my job involves quite a bit of bending anyway and I am struggling if I'm honest, but I need to test myself for my own peace of mind. I will give it my best and know that, if it doesn't work out in the end, at least I've followed my own instincts to find that out for myself.

    I'm just trying to illustrate that we all have a choice in how we tackle pain. We may choose to do something that may make us feel worse, the same or better, but try we must - just to test ourselves and see if we can push it just a tiny bit further.

    Don't get me wrong Tony, I'm not saying you should go out to work, or anything like that, because I know you are not able to. I'm not even saying that you should go out and walk 5 miles, no no no!!!! But perhaps walk just a little bit further this week than you did the week before. Or swim one more length this week than you did 2 weeks ago. If we try and fail, that's fair enough, but if we manage to succeed, then it's an achievement and a very positive step forward.

    If you are in constant pain then whatever you do will require a huge amount of effort and willpower, I do understand that, but if you set yourself a tiny goal that is realistic for you and you actually achieve it, then it's one-up to you and one-down to your pain. You are then controlling it and have the power to push through it just a tiny bit. After a month, maybe you could reach a level where you are pushing through a little bit more, and so on.

    It is a very long struggle. I never for one minute thought that getting over the 'revision' operation would actually take as long as it has, but I suppose it's because I am older now, am not so fit and psychologically am definitely NOT as strong as I used to be and this all has a bearing on our recovery.

    Have you spoken to your GP about how you are feeling and what the constant pain is doing to you psychologically, let alone to your body? Do they have any support groups or people who specialise in this area that you can talk to?

    As I've said before, I have seen a "Psychological Wellbeing Practitioner' (what funny names they give people who basically try and help your mind). I have seen her 3 times now and she thinks I should be referred to someone else who is more qualified than her to deal with my issues! But at least she is trying and not just letting it go. I will wait to find out what the next step is and will go along with it, no matter what, because it might just be that something positive is said that will help me come to terms with how I am feeling right now. Perhaps they can give me to mental tools to help me deal with pain in a better way, who knows.

    I've got an SI joint injection next Thursday - so I do hope that deals with one of the pain issues I have, but I won't give in and I won't give up!!! and neither should you!!!

    In many ways I feel the same as you do. I do not believe having the 2-level fusion has helped me at all. In fact, having the revision surgery doesn't seem to have done much either. All I know is, I'm on more pain meds than before the fusion and it's that very surgery (I'm told) that has caused the sacro-iliac joint pain I now experience. So, for me, I don't think I should have had the surgery either, but who is to know that, by now, I may have been so much worse without it? Hindsight IS a wonderful thing and I'm beginning to dislike that phrase alot, because there's nothing I can do about it now but deal with what I experience NOW.

    And as for work, I will know on 20 June whether my manager will accept the 'reasonable adjustments' as a more long term measure, but if she doesn't then I'll be facing some really tough times ahead that I know will pull me down more than I am now. I don't want to think about losing my job, but I know it's a real possibility in the end. All I can do, for now, is take each day as it comes and give it my best shot. I go to work with back pain, I come back home feeling even worse, but the alternative is to not go at all, and I'm not prepared to accept that for the moment. I have to try first.

    I know it's very difficult, but please try and stay positive. Don't give up, but do give yourself more time. Try and get the professional help you may need to help support you through this. At leat you know that the hardware is all ok and that Mr S seems to be pleased with your progress so far, even if you are struggling with it. That is positive.

    I have probably not said all this in the right way - it's difficult to put down in words and explain myself properly. But ultimately, what I'm trying to say is you ARE doing well, you ARE improving and you WILL progress further as time goes by - just give it your best shot and don't ever stop trying!!!!

    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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