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Feels like everybody's giving up on me

So after four low-back surgeries since 2008, including two fusions and a revision operation, my pain is worse than ever and it seems like everyone's just giving up on me.
My surgeon said the x-rays for my latest surgery, a revision one year ago of an L3-L4 XLIF that resulted in non-union, showed solid fusion and no CT scan was necessary. He said any attempt to surgically correct new pathology (such as adjacent segment disease seen on MRI in April) would simply result in more pain because I'm basically now hyper-sensitive to any pain stimuli in my lower back due to the many surgeries. I also have nerve damage from my third surgery.
The surgeon said I should "keep fit" and stay active and stop taking opiates. Then in six months I would be as good as I'm ever going to get.
Last week, my pain management doctor reviewed my surgeon's notes and basically agreed. Exercise, he said in an hour-long lecture-type session, was the answer. No more surgeries. No more injections (for now), he said. Hit the gym! Be a jock!
Then this week my wife chimed in again with her reprise that my pain had become "the other woman" in our marriage and that I might as well be having an affair as my pain had taken over my life. She has complained bitterly for years now about how my pain has made her life miserable and that our children would be scarred for life because their father cannot take them camping or go to Disneyland etc.
I actually did "hit the gym" on Saturday, despite severe pain, and had a pretty good time although the pain quickly returned. (I had been going to the gym every day during two pain-free periods of three months each following my two most recent surgeries, so I am no stranger to fitness). I know, of course, that it will take months and probably years of physical fitness to get a body that is more resilient and less pain-ridden.
So what do I do now? As I write this I have severe pain, almost a 7 on the 1-10 scale, with pain radiating from around L2-L3 to my upper thighs on both sides. I've taken about 20 mg of hydromorphone today and that's it for now, plus about 1,200 mg of Neurontin. No relief from the meds.
I feel like going to the emergency room -- that's how bad the pain is. But I know they will just repeat what my doctors have said: there's no easy solution.
It should be noted that I had an epidural steroid injection in July at L2-L3, including the facet joints, and got one day of relief. But I should think that's diagnostic -- at least we know the pain generator is at L2-L3.
So what would you recommend? I should note that both my surgeon and my pain management doctor are very conservative about surgery. I myself don't ever want to go through another surgery. I really feel I need another MRI (my last one was in April, so fairly recently) because I'm desperate to see what's going on in my spine. Or am I just crazy to be worrying about my spine? Should I just ignore what's going on in my spine, as my doctors recommend, or should I keep pushing to get answers?



  • Time for some fresh opinions if you ask me. If your still in pain and they have stopped looking for the generator you need to move on to another Dr. that takes your issues seriously and starts looking for the cause.

    Can't help you with the wifey as that is a whole other issue that I'm glad I don't have to deal with.

    How much PT have you had and was it given to you by a spine specialt PT person? Are you still working on the core? The core can take a long, long time to get back and keep strong.
  • Sadly often there is not much that can be done once surgery caused damage and scar tissue and such, I been living with failed back surgery from 2004 and nobody has the answer, Mri and all can look good but in no way shows them everything going on in the spinal nerves and even if emg tells them what level still often nothing they can do,

    There is no cure for nerve damage to date so its like barking up the wrong tree no mater what dr you go to as i have,
    You bounce from 1 dr to another often like a ping pong ball looking for answers thinking there has to be 1 that can help more then the other, But i found its not always the case as lot of them go by the same book and simply cant fix what another dr might already screwed up with 1 st surgery,

    Its a living hell by any standards for many of us who had multiple surgery and had bad results,
    March of this year i finaly decided to go with the scs = spinal cord stimulater but even having it put in i have nothing good to say about it, Its not always that simple and you simply cant kill off nerve pain for everyone as we might have diferent degree of nerve damage and symptoms,

    Some swear by the scs as others will say it dont work for there pain, If it worked for everyone dr,s would not be removing them almost as fast as they are being implanted, Or you might have 50% people decide to keep it in even if its very slight releif once in a while, What else can you do when there is no other option other then pills or scs or pain pump implant and every implant can have its own set of complications,

    I know i had 3 scs trials before leting them implant it and 1 pain pump trial that caused spinal leak that i will never forget and i will avoid at all cost,
    Its like you know you are suffering when you are actualy considering having a pain pump implanted and have morphine drip going in your spinal fluid for life, Everyone has to realise spine condition is often very serious and is not as some think oh its just a bad back i had that once, I moved a matress and boy my back hurt but i got over it often people might say as often they are idiots,

    Your wife not understanding this spine condition if it was me i would say for beter or for worse was mentioned during the wedding so either you lied during the wedding or whazzzzzup , Life is not perfect by any means and she needs to come to terms with reality, As long as you are doing your best to stay active as you said gym is 1 way, As i myself have to sighn back up to our local ymca with pool and there gym i use every winter myself, I say winter as yard work takes up all my summer months with this severe back issue and no time for gym when you barely get anything done around the house as it is,

    We suffer as it is knowing full well our ability has been affected by this injury and not being able to do the activity we want is already bad emotionaly and we dont like to be reminded of it from others as its insult to injury,

    I have some family and friends i put aside as they have nothing positive to bring to the table i dont need negativity brought my way, I can do bad all by myself dont need any help with that thank you! Otherwise if they try to bring any negative my way my right foot still works and i wont hesitate to put my boot up there ass up to there l4l5 to keep them in check,

    Woman often can be selfish and put more pressure on the husband then 1 can handle, Yes i know say it aint so lol,
    And just to please the woman members , yes it can work the other way around also,!

    Men also can be selfish and neglect there partner during there time of need after an injury as you will read about too often as both have to become 1 to over come this kind of injury and work together to get best results out of a bad situation,

    You cant hit a criple with a stick and make him walk if he cant walk ! World has become selfish and everyone needs life to be the way they feel it should be and often overlook whats realy important in life!

    Love and understanding with some compassion needs to be brought back in the world !
    Ok now everyone bring out your lighters and sing All we need is love ! All we need is love !

    I should of been born earlier so i would of been an adult in the 60's !

    Good luck just do your best is all you can do, And you cant please everyone, so you got to please yourself ! Wait i feel another song coming on !

    Git -er-done
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I won't go into detail on my back history other than the fact I had 4 surgeries from 2002 to 2007, the last being a 5 level fusion. Six months after the fusion I was deemed a successful outcome by the surgeons even though I was in constant pain, couldn't stand for more than a minute or two, and couldn't walk because of leg weakness and back spasms. For 15 months after the surgery I was a shut-in, losing my wife and family and friends if things didn't change. I started walking. I figured I couldn't make things worse. Long story short, I have been walking 4 miles, 5 times a week these last four years and the terrible pain has become managible. I take some Tramadol, a spasm med, and a NASID, but no heavy duty narcotics.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • LovetrotravelLLovetrotravel Posts: 296
    edited 10/04/2012 - 10:14 AM
    Sorry you are in so much pain but I agree with others....there is only so much surgery that one can have. And I am not sure how going to the ER is going to do much as you don't have a life/death situation here and you are already on pain medications so they aren't likely to do anything that your own Dr. isn't doing for you. Maybe others disagree, but I just don't feel the ER should be used for chronic pain management as that is where you are right now.

    With those of us "lucky" enough to have terrible spines and multiple surgeries...it's pretty much a given that we are going to have some nerve damage, nerve pain, muscle spasms, and scar tissue pain.

    But, just like with anything in life, this is the hand we are dealt and we have to find ways to continue living the best life possible with our pain.

    I'm not saying how your wife handled things was good by any means...but I do know that until we become 100% used to the idea that this is our "new normal"...then sometimes we forget about others and only focus on ourselves and our pain. Sometimes our relatives/spouses just don't know what to do anymore and they hurt for us...but they also want us to find a way to get through this.

    If you haven't been exercising much in the past, you need to gradually build back up into again and certainly don't do things like dead lift heavy weights..or things that will actually injure you...but things like walking, swimming, gentle yoga/stretching should be part of our every day routine..Focusing on your core muscles safely is crucial to helping our spine.

    I actually get more pain and stiffness when I don't go on my nightly walk and that only happens when it's a true downpour.

    And with medications...it sounds like you may need to switch to a different nerve pain med although you are on a low dose of the Neurontin...so you may try working with your Dr. to up the dosage first to see if that works..It goes up to 3600mg a day.

    And then I don't see you mention a muscle relaxer. There is Flexeril, Robaxin, Skelaxin, Baclofen, or Zanaflex. These are very helpful for muscle spasms as an opiate does not target that type of pain.

    There is also acupuncture, massage...regular and ultrasound, physical therapy again to learn some new tricks/moves, aqua therapy, ice, heat, biofeedback, TENS unit.

    And as someone mentioned...there is the SCS unit. It does help a lot of people but we get a skewed view on this board or anywhere online as people who had success are not on a CP board...Now...it's not like it's a magic answer to everything...but it's an option to look at just like anything else. Pros/cons and seeking out a Dr. who does these all the time and speaking with actual patients of theirs who have had success.

    Also, it may be very helpful for you to seek out a therapist/Psychologist to go and talk about the emotional side of living with chronic pain. This way you can have someone instead of your wife to go and cry, mourn, talk honestly about all your feelings and learn better coping skills to use when things get rough and the pain gets high.

    You may even need to go on an antidepressant for some time. This is nothing to be ashamed of...many of us have dealt with the depression that comes with chronic pain. This, along with counseling can help with both the physical and the emotional pain.

    Another thing is making sure that you don't smoke as this has now been proven to cause disc dehydration as well as those who smoke are more sensitive to their pain and have a higher tolerance to pain meds. As well as all the obvious deadly issues with it.

    And then making sure you eat well and maintain a healthy weight. I switched to all organic a few years ago and it's helped my energy levels as well as my digestion.

    I've already had 3 fusions and I still have many herniations, bone spurs, stenosis, etc...all the same issues but I refuse as well as working with my Neuro and PM to avoid any further surgery as my others were only done based on emergent symptoms...Spine surgery is NOT for pain....it's only to fix mechanical issues...

    So...even if you have another MRI and find you have more herniations...again...you can't keep having surgery after surgery as it's not going to ultimately lead to a lot less pain...in fact it could make it worse.

    It's all about acceptance...and starting to add in every possible modality to help your pain each day. It's about learning to find joy again in the life that you have right this moment. Learning to be thankful for the things that you do have and not always thinking about what you don't have or can't do ...

    Again...as I said, I've been there....I live now with a 5-7 on the pain scale which is the norm for those of us in chronic pain...Anything better is a bonus! There is a time to mourn our past, but then time to pick our selves up, dust ourselves off, and find that wonderful life in spite of the pain..

    Sending you hugs (( ))
  • Ok so what about my song and lighters damn it ?

    I have tramadol which is same as ultram and i use to take that for pain before my surgery for years, Other day i decided to not take the norco which is same as vicodine i believe and took the tramadol instead 3 times for that day and i swear it worked beter then the norco i been on for some reason,

    I was shocked as maybe i been taking the norco for too long and thats why wont help much at all, they like tic tacs like on Dr house ! If anyone watched dr house i swear i feel like the character he plays with the nerve pain shooting down the left leg and limping around in pain,
    Hey i know how you can get wife to understand, Get a Dr house cane and tap her on the head see if anyone is home,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • backache99backache99 Posts: 1,338
    edited 10/04/2012 - 10:07 AM
    84574RD ! i would get a second opinion .it a typical reaction from someone that's not go a clue about pain .if you were well enough to go to the gym .i am sure that you would .you can't just stop narcotics if you were at the stage were you no longer required pain killers you would have to go on a phased reduction on said narcotics .my guess if you still require pain relief and you are still in pain and you quality of life has not changed am i right?? if so then get another opinion .and good luck .i once came across a similar situation with another so called professional
    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
  • Casey BrownCCasey Brown Posts: 8
    edited 10/04/2012 - 5:30 PM
    By far the worst part of our problems is the lack of sympathy and understanding from others. They think it's something we can just "will" ourselves out of, like going to party when you're kind of tired or have a slight cold, but once you get there, you magically start to feel better. I have most touch with many friends. It's awful. Nobody understands. The little things like worrying about money, or someone taped over your favorite TV show (lol) just get put into perspective so much after an injury like this. I am 24 and feel like I've basically lost a year of my life - I might as well be in prison - I'm cut off from society whilst trying to recover. I have no idea what to say about your back pain - maybe go to Amazon.com and buy some books with good reviews and try those techniques, I dunno. And I am sorry about how your wife is taking it, but I know the feeling. Nobody gets it man, that is the worst part of this all.
  • I know that I have been guilty of saying in response to the question, how are you? Or how was your day - my response? I hurt....which is usually followed by a half hearted I'm sorry.....what else is there to say? I have found myself making the effort to avoid saying I hurt when asked how I am ,or how my day is/was. I think that sometimes we get can get ourselves so used to feeling pain that we don't even think when someone asks us how we are of offering an I'm okay or how are you in response....and we often don't listen to what others are saying because our own brains are so caught up in dealing with our flare ups, or our normal pain levels or what we can't do that we loose sight of what we can.
    We are not going to be what we were before our back surgeries or injuries, otherwise, we wouldn't have had to have them or been injured so we do have to relearn how to relate back to "normals" without the focus being on our pain or conditions all of the time. I know that I found that eventually I was able to enjoy going places with my family, despite the increased pain levels it sometimes caused, because I wasn't sitting around, or excusing myself from activities anymore because of the pain involved but rather was able to focus on the happiness it brought to my husband or kids because I was there.....and that made doing or trying to do those things with them more enjoyable for all of us.
    I am not advocating pushing ourselves to the point of further injury but I think that on occassion, we can all be a bit guilty of begging off an activity that we may not "feel" like doing by using our pain as an excuse and we can all be guilty at times of focusing too much on our "conditions' and not enough on the effects that our conditions have not only on ourselves but on those we love and who love us.
  • It's hard to stop the pain focus when you hurt. What I am trying to master is not letting my pain focus run my life. As sooon as the pain runs my life, I am left feeling guilty and inadequate which just compunds thepain and depression. I really think putting an anti-depressant on board has made a world of difference for me and my family. I am able to fend off the panic attacks a little quicker and keep my head up just a little more on the rough days. I highly recomment talking with your doctor about that! What I find on these boards is people who have walked the path before me. I try and weed through oppinions and get what I need to survive ach day. Sounds a bit selfish, huh? I am selfish in my recovery, because my life and my families kind of rides in the outcome of all of this. Of course I try and give back a little of my own experience which makes me feel better because it gets me out of my own head. Starting to sound a bit 12step, lol...but hey you know what it's all recovery, right? Thank you Sandi, I read your posts often...and survivor resonates through all of them. Again, I choose to latch on to those posts that have a message i can learn from...so again, thank you for coming in and resposding to a lot of pretty sad, desperate folks. It makes a difference. Peace to all Ellen
    3 level fusion L3-S1 July 23, 2012
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