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Is this it?

Christina69CChristina69 Posts: 534
edited 06/11/2012 - 8:36 AM in Depression and Coping
I've been posting on here on and off for a yead and a half. I've had two fusions, a PLIF and a cervical which all started two years ago and I'm still in constant pain. Only one side of my lumber fusion actually fused and now I'm looking at yet another surgery. I go to pain management and am on morphine and percocet for the breakthrough pain and even with those I'm still having unbearable pain. I dont know what to do anymore or where to turn, Im just tired of hurting and crying and being useless around my house cause doing even just a lil bit, makes me soooo sore I'm totally useless for another week.
My husbands a sweetheart, he does everything around the house and works all week and I just feel like I'm weighing him down. He doesnt deserve this.
I just want the pain to stop and I dont know how to deal with this anymore. Is this what I have to look forward too for the rest of my life?


  • I know that the words "hang in there" seem to be overused and watered down these days, but they do ring sincere in my book still. When someone tells me that, I know they mean it and I "hold on" to it for dear life.

    Reading your post the thing that stands out the most to me is that you want the pain to go away. I used to think that way and it wasn't until I realized that it was always going to be here in one form or one level or another, that I could achieve some sort of calm within myself.

    Once our spines have been messed with, even though it is done with the best of intentions and necessary, we are never the same. It doesn't have to be life ending and it doesn't have to drag on for years, but it does demand to be acknowledged.

    So I acknowledged it and continued to pursue some sort of resolution. Basically I refused to give up or completely give in. What's nice about pain (if you can say that with a straight face) is that it can be very focusing in it's distraction. By distracting us from the very thing we desire, it tends to intensify the focus or drive to find a solution.

    Don't let up in your pursuit of a better quality of life. It can and does tend to take time for many of us, especially those who have issues with more than one area of their spine.

    So my answer to you is. No. This is not what you have to look forward to for the rest of your life. You will find a way if you are willing to be persistent and allow the pain to give you focus.

    I hope this makes sense.

  • you must be worth it to your family or your husband wouldnt be so helpful. i'm sure he's just giving back some of the love youve already given to him....for the sake of you and your family dont ever give up. there is always hope for new procedures and techniques in the future. i've been fighting this stuff for over 40 years and will never give in...i will fight as long as i'm breathing......pete
  • I see you have a scs in place. How has that worked for you? I've been thinking about asking my surgeon about it. They don't do those here in the area where I live at the hospital where my pain clinic is at but I'm wondering if they do them where my surgeon is.
    How much difference has it made it your recovery?

    I know I'll never be pain free again, but just to at least get to a place where I can handle it better...

    I dont know if I could go through another surgery.
  • My husband says he understands and doesnt mind cause he knows I cant do it right now but I know he gets tired too.
    I wont give up, but sometimes it all just feels like too much and that it's never gonna end.
    There's just so much to it, the pain, the feelings of being judged by everyone. Everything that goes along with it.
    Thanks for your kind words, really. Sometimes we just need to be reminded were not alone, ya know?
  • My SCS has been the best gift I've ever received. Without it I would not be able to function. The pain in my shoulders was so intense I couldn't walk more than a few feet without the feeling of someone standing on my shoulders in ice skates. My hand hurt so bad I wanted to tear it off. Without the SCS the cervical dystonia twists my head around regardless of high levels of anti-spasmotic medication.

    Now I can cook, clean, work out, walk for hours, drive, garden, scuba dive, basically do most things I want to. So I went from being unable to function to what I would consider to be fully functional with the help of my SCS.

    I had to travel 7667 miles one way to the hospital where I had the trial and the permanent implant. It was worth every penny and then some!

  • plenty of people here including myself are here for your support. i just looked up web site of co. that makes the scs. if you follow this link they have a place to insert zip code and find clinics in your area...

    i'm hurtin real bad today too but we all stick together...pete
  • Ty Pete, I sent away for more information on the scs. I go to see my syrgeon tomorrow so I'll see what he says. Keep your fingers crossed for me. I need all the luck I can get.
  • I can relate - it feels like "Ground Hog Day". No matter what you do, the next day is the same, and no matter what you do, it gets into a rut, one day after the other. After many days/months with limited sleep all of us start to wonder?

    As hard as it is to believe, there are changes going on, even minute ones. Sometimes better, sometimes worse. To me - I keep a positive slant on things most all of the time. I have had a neg view at times, because that is how I felt and rahter than deny it, I allowed myself to wallow in it, to let it get through my system and on out the other side. On the other side, I found the sunshine back and things felt much better. I was able to go back and look for new research on my problems and relate it to me and come up with a plan of action. As Ron[PapaRon] has said - "the Blend" is part of the answer and with that blend comes the realization that we have to accept things as the are and keep faith that they can improve.
  • It is like groundhog day, the waking up in pain and having the 'here we go again' feeling.
    I use to be a clean freak, I kept my house Immaculate and now I look around and I can hardly stand it. Sure I can do it, well...a lil but I pay for it greatly afterwards.
    I've researched different methods of treatment and surgeries and everything that goes with it and I KNOW I'm getting to the point that another surgery is the only next step. The surgery was so bad as you know yourself. I know everyone is different but I can remember how right after the surgery I was clinging to the wall in the hospital wishing I would die and I have a very high pain tolerance. Ppl tell me to have positive thoughts but it's hard to at times you know.
    My husband comes home telling me about a friend of his who had a five level fusion and at 77 is still hiking and stuff and he thinks it suppose to make me feel better? I'm 40 and can hardly do anything...knowing that a 77 year old man is in better shape than I am really doesnt make my day =)
    Anyway, I'm gonna talk to the doctor tomorrow about maybe trying a scs. I'll let you guys know what happens.
  • I wasn't going to post, because I couldn't say anything better than Haglund C in her first reply. But then, I read about your husband telling you about his friend, and how it makes you feel worse. Don't think of it as not being in as good of shape as that 77 year old man. Yes, he had a multi-level fusion, but you've had two, and one unsuccessful. Plus, two more surgeries on top of that!! It's not comparable, well, even to another person who would be in the exact situation that you are, as we are all different. Think of your hubby telling you about his friend, as a way of telling you that no, this isn't it. You do have hope. So you may never be able to go hiking on uneven ground, but you will one day, be able to walk, if even only around the block a couple of times, but that's better than where you're at now, no? Don't compare your recovery to anyone else's, just think of how much you've accomplished, if even the smallest of tasks, like wiping down the kitchen counter, or walking around the block once, or doing some light dusting in one room. If you keep that up, and thinking positively, then next time, you might be able to do light dusting in two rooms, walk a little further, do a little more each time. Know your limitations, and don't over do anything, but don't let your limitations keep you from living. Have hope, think positivley, don't let set-backs get you down, we all have them. Write down your "accomplishments", and in time, you'll see that you'll be able to do more, if even only a little bit at a time, and that what it is today, isn't "it". Keep working hard at your recovery, and as "C" said, Hang in there!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Spent two hours in his office discussing what options I had left. Three in all I guess, at this point. I spent the afternoon crying, even cried like a baby in front of the surgeon. I just want all this to be over with and I want some sort of a resemblance of a normal life back....

    1. I could just wait it out for a couple more months and continue to go to the pain clinic for pain management which up to this point isnt doing very much for me at all. The pain doctor wouldnt raise my dosage the last time I seen him as he wanted me to talk to my surgeon to see what he wanted me to do.

    2.Let him (surgeon) go back in and do an exploratory surgery to see exactly what is going on in there and see how much actually did fuse and how much didnt and check how hard the bone grew. Apparently they cut through the muscles again and check to see how strong the bone is by picking me up off the table by the rods and seeing if the bone holds and doesnt break, if it breaks they have to redo the fusion with bigger screws etc. If it doesnt break, they'll take the hardware out and see if that helps the pain I'm in. They wont know what they have to do though until I'm on the OR table.

    3. Go see another doctor about having a spinal cord stimulator put in place. The surgeon says if it doesnt work, they can always go back in afterwards and do the explorative surgery. He says the downfall to the scs is that you cant have any MRI's while its in place.

    The surgeon says that if he has to redo the fusion, the chances of it not fusing on the second operation is double. For example the first op. I had a 8 percent chance of it now fusing, the next op, I'll have a 16 percent chance of it not fusing...

    I dont know what to do. I'm suppose to think about it, get more info on the different things and get back to him.

    Does anyone have more info on this sort of thing?

  • i can only say what i would do if in your exact situation. i can tell you that i actually decided what to do just recently with the sct in a somewhat similar situation.i'm having it inserted. my surgeon told me removing it is not a big deal if necessary.
    if i was you i would have the scs trial to see what pain relief you obtain. lets face it you need a break from the pain. with not as much risk as the refusion you may get a break. if that doesnt work then you still have option of refusion.
    this route gives hope for pain relief with the least risk....of course thats just me and i am having one ofmy worst days yet so i may be swayed slightly by that discomfort....pete
  • One thing to keep in mind, is that once a person has a Spinal Cord Stimulator implanted, most surgeons want nothing to do with you. Since it is considered a last resort, it's like a mechanic closing the hood of your car and telling you to buy a new one because there's nothing more that can be done.

    On the flipside to what Pete said he would do ... if I had a surgeon willing to go in and see if things could be fixed and or are as fixed as they can be ... then I would take that opportunity before settling for an SCS.

  • Now I am as confused as ever. I dont know what to do. I'm just terrified to wake up in the same pain as I was the last time I had the fusion and have the same thing happen. The surgeon's 'apprentice' for lack of a better term, told me that if after getting the scs implanted and it didnt work then there would be no use in doing a surgery. He stated that if the scs didnt work, nothing would. However the surgeon himself said if it didnt work we could always have it removed and go back in and take a look to see what could be done if anything.
    I'm wondering what kind of pain you have after the implant surgery. Is it anything like it would be after a fusion. I'm just tired of this much pain.

    I've heard ppl talking about pain pumps, what are these and how do they work?
  • Is this normal to feel like this? I feel like Im losing my mind. I cant stop crying, and feeling like I just wanna give up and fall asleep and never wake up. Does everyone have these feelings when dealing with pain like this?

    I dont even care what they do to me anymore.
    Am I going crazy?
  • from what i hear the pain you get from the scs surgery isnt anywhere near as bad as fusion surgery pain. i'm having the scs implant in a week and they arent even going to put me under for it. your surgeon said if the scs doesnt work for you then if necessary he'd go back in to check on the fusion. at least he's giving you an option. i get concerned about going in on the fusion so many times because of the danger or risk of scar tissue. also drs have told me the more times you go in the more risk of infection. i finally had bad infection on L3 because they went in so many times. and the pain actually got worse. i'm optimistic and dont expect too much pain from scs surgery.
    the trial would be a good choice to see if it even will work. the trial isnt that invasive.
    i dont know anything about the pain pump so youll have to get that info from another person or your dr.
    regarding crying and feeling depression....its terrible and i understand what you are going thru as i too experience it 3 years ago. and yes you do feel like youre going crazy even though youre not. the stress, pain and meds bring it on. to me its worse than pain. you need to talk with your dr about it in order to bring it under control. and yes it can be controlled whether it be by drugs and therapy or by just reaching out to the rest of us here who have been through it...
    feel free to pm me anytime you want to talk further...pete
  • An SCS is not a diagnostic tool and should not be used as one.

    Yes there is always increased risk of complications with repetitive surgery, no matter what type it is. However, that should not be used as a reason for making a foolish or rash decision. For the "apprentice" to say that if the SCS didn't work then there's no use in doing surgery, is garbage and I hope the surgeon he works for knows the kind of information he is giving patients.

    With the cost, the risk of complications and time given in order to make certain things are at the furthest point of any given hope of healing ... using an SCS to control pain for an undetermined time is adding a bunch more risk. Also given the fact that MRI's cannot be done after getting an implant, is seriously tying the surgeons hands in finding out what is wrong or is not wrong.

    I'm very sorry that you are at the point that you are pain/emotion wise right now. I think we all get to that point at different times during our journey through pain. It is important to stay in communication with your doc about this and be upfront. Let him answer your questions and set your mind at ease.

    Please remember that we are only patients ourselves and although we can share our experiences and opinions, the medical professional that you trust your care with should be the one ultimately answering your questions and giving you guidance.

  • Today has been a better day dealing with everything I guess. Actually it's probably the not dealing that made the day better. I slept most of it. The pain in my legs has been keeping me up alot at nights but even before the leg pain I never use to sleep that well either.
    I spent most of yesterday crying which got me nowhere. I guess I was just having one of those feeling sorry for myself days.
    The more I think about it the more I've kinda decided to go with the exploratory surgery first. If I need to redo the fusion, I guess it's best to get it over with now. If not, I can always have the scs implant but in later. At least then I'll know whats going on inside me.
    Part of me wants the implant right away cause Im so tired of the pain, you know but I guess its just not a wise choice to think that way.
    I've only had two spinal surgeries, maybe if I was looking at surgery number 6 or 7 it would be different.
    I've also been holding off another surgery because were waiting to decide what to do about my back. Were holding off on it because to do it would require the doctor to cut through my stomach muscles and my back surgeon doesnt want that. He says I need at least one good set of muscles to hold me.
    I dont wanna rush into anything so Im still trying to decide for sure. Who knows how I may feel tomorrow.
  • In your first post, you talked about your wonderful husband and he doesn't deserve this. I made a similar comment to my brand spankin' new pain psychologist (see excerpts below) and he told me that when I talked that way, I was insulting my husband. I was suggesting that the love he had for me was not a mature love....that he didn't take his wedding vows (for better or for worse etc.) seriously. That was certainly a different way of looking at the situation. I thought I was coming from a loving place when I said he doesn't deserve this, not a place where I am insulting him. I've learned some interesting stuff from this guy, this pain psychologist. I will be posting the highlights of my twice monthly meeting regularly. Susan
  • I meant it the same way you did as well, he's so good to me and he treats me like a queen. I just feel bad because I cant be the wife I use to be for him.


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