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Possibly permanent nerve damage one year after fusion

Hodge2120HHodge2120 Posts: 5
edited 06/11/2012 - 8:59 AM in Chronic Pain
Hello, this is my first post after visiting and reading several times. I'm 25 and have already had a successful spinal fusion surgery (hardware wise). I dealt with severe nerve compression for about a year and a half prior to the surgery. I was expecting immediate relief after the surgery. My mother and sister have both had this surgery that's what they got. Instead, it's now over a year after the surgery and I'm bouncing between my family doc here in Indiana and a specialist in Nashville. I'm currently taking Oxycontin 30 mgs twice daily, along with Percocet 10 mg twice daily, and Cymbalta. I'm not much better now then I was prior to that very painful surgery. I've been told I'm basically stuck taking pain meds for the rest of my life or possibly a pain pump. I'm scheduled for a myleogram this Friday to see if the doc from Vandy can find anything different than expected that's causing the pain. It sucks to be in pain everyday and my family doc won't change my medication because he's worried about what I'm going to be like in 10 to 15 years I'd he does. I understand the logic in that, but like I told him I want relieve now I'm not worried about 10 years from now. I guess I'm just curious if anyone else has experienced these things. It is very hard to explain my family and friends why I'm pretty much a completely different person than I was 3 years ago. Pretty depressing hence the Cymbalta. If anyone has experienced anything like this please let me know if there is anything you that helped you or you recommend trying. At this point, I'm willing to try anything. Thank you


  • Hodge,
    Pain every day is never easy for anyone, I set constant goals not that same for my fitter days and rest a lot, take medication before the pain arrives, am kind to myself and others. You have some control of the future however limited that may seem at the moment. In managing your pain the key perhaps is pacing and staying under any increased pain through over activity, initially this is very difficult to achieve, compressing your existing activity into an unknown and diminishing competence.

    It is difficult seeing others improve while we decline over time, focus on what you can change, if nerve damage is what you have do all that you can do, not what you cannot, do something positive every day however small, and be proud and vocal of your achievements.

    We all pay a high price for taking medication and need to use additional aspects to manage our behaviour; it is the accumulative aspect of ideas that manage pain most effectively.

    Get some PM help and build a support network that enables what you are capable of doing rather than your desires or expectations. The old you may now have gone, some elements may return or may not your future is in front of you, not unfortunately any achievements of the past. I was told do everything that makes it better and nothing that makes it worse, it sounds easy it is not.

    I was medically retired at 35 after a failed fusion, my professor said, I will have to adapt to declining function and so it has proved, I have taken inordinate amounts of necessary medication, and made the best of a difficult life changing event. Many people here have had pain 20years plus have a wealth of experience and support to give. I have no memory of what not having pain feels like now; it has been emotional and eventful.

    Take care. John

  • I just had my fifth surgery, an emergency discetomy below my fusion. I am only taking cymbalta and have a neurostimlator. I am so concerned about the long term impact of the drugs that I would rather suffer than take them. I have radicupathy, so my pain is pretty much always there unless I am unconscious. I am constantly working on a life integrative pain management plan which includes for me, feldenkeis, pilates, turmeric, cymbalta, chiro, deep tissue massage, and absolutlely listening to the every day limits of what I can and cannot do. I also found a new supportive boyfriend, and use the support of others.

    What I have learned in the 5 years I have gone through this is that not one thing works for anyone, and what works can stop working, I was on tramadol which worked for a few years, then nothing.

    I encourage to use all different modalities to deal with your chronic pain, and find out what works for YOU.

    All the vest,

  • I've been in constant pain for the last 5.6 years, i've had nerve root blocks, epidurals, and a micro discectomy, nothing seems to work, as i'm getting older,(54) i'm having to increase my medication.
    people who don't suffer with back problems, fail to realise what a lifechangeing experience it is.
    I attended a medical assessment recently, performed by a physiotherapist, who thinks i'd be able to work, what a joke, i'd do anything to be able to return to work, and get my life back, unfortunately i don't think this is going to happen in the near future, i think i have to resign myself to the things i can't do instead of dwelling on the things i used to be able to do.
  • Oldcroc,
    What you can do is accepting reality, which is never easy with the imposition of restricted change. Acknowledging that things have changed is good, it enable us to deal with what needs to be done to move on. Living in the past is wasted energy that could be better placed going forward.

    I spent many years getting back into work and possibility of returning to work, if that is your aim what do you need to do. However positive we are, we cannot change the reality of our situation, only wait until perhaps things ease. I work with pain every day it is not easy, it can take equal effort to be miserable, and that is the road to depression and more medication to combat the symptoms. If we can cope with pain everyday then working in some form is possible, at 39 with three young children I too thought my working life was over, I have used my situation to my advantage, and working in an unimaginable job that would never have happened in my healthy existence.

    Ask the physiotherapist to help you; they can see your potential, even as a longer term objective.
    Associate and find those who can help you have done well so far in adapting to dramatic change and should be proud of those achievements, at the start it always seem overwhelming we want answers that are not possible and security.

    I can feel your passion for working, do not let time and life pass by, if what you are doing now is not working, change it, and only you can do this.
    Where did you work, is this type of work still possible ?

    Take care. John.
  • I had an ACDF C5-C7 10/09- 6/11- EMG/NVC diag "Chronic C7 Radiculpathy with out chronic denervation"-Neurologist stated it is permanent nerve damage on my right arm. My ortho will not address issues of pain or nerve damage, since the MRI showed the fusion and hardware to be intact. Has anyone else had this particular problem. Would like to hear from anyone.
  • i agree with John on this matter. one must accept what is going on and move on. I have had chronic pain issues for 10 years, 4 surgeries and taking meds, opiated for 1o years. i work teaching full time and have had issues with principal recognizing my accommodations. i put up a fuss with HR and now i believe all know what i can and can not do. it takes a while to accept your pain and what to do with it but it is part of my life. it is in the background and i do not talk about it to family or work unless i am asked. it is what it is and it is there and nothing can change it. the main thing is for you to accept it then talk to family and if need be work. i refuse to go on disability because i think work helps. keeps me focused on reality not pain. if you can work and do the best you can with your life. go on vacations, travel, visit friends etc
    good luck
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • your story sounds alot like mine. i waited and wish i hadn't but that was in '06 and what's done is done. i had 2 levels done and no disc left at all in L5-S1

    the biggest help for me have been a spinal cord stimulator and a low dose duragesic patch & percocet as needed.

    feel free to pm if u like. take care i slumped in a deep depression as i could not accept the new "me" i am learning slowly. i am glad you have addressed that already!

    also there is a "letter to normals" on the boards here, i sent it to my family and friends. if u can't find it you might ask a moderator. it helps because they can't see anything like a broken arm so the letter tells them whats going on....it's great!!!


  • Where can I find the Letter to Normals that someone mentioned in on the forum?
  • Ellen625EEllen625 New Jersey, USPosts: 630
    Did you put it in the search bar?
  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • LizLiz Posts: 7,832
    This is an old discussion the original poster hasn't been on the forum since posting, so I am closing it.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
This discussion has been closed.
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