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Ive Been Given No Hope...

BeenGivenNoHopeBBeenGivenNoHope Posts: 1
edited 06/11/2012 - 8:52 AM in Chronic Pain
Ive had lumbar backpain for 7 yrs now and its worsening. My discs are gone at lumbar level and the pain is at an all time high. It does not respond to narcotics, injections, oblations, therapy, Ive tried everything. I cant work. I cant sit in a chair or the pain is immediate. I cant stand or walk or the pain is immediate. Ive had at least six neuro's including some from the NYC area tell me my nerves have become acclimated to the pain so any further surgery would not help. In other words, Im screwed. My life is over,as Im in soooo much pain all the time. I am 43 and still have some life to live. I cant imagine another 10, 20 or more yrs with this much pain and have even contemplated TAKING MY LIFE. Tens units dont help, they will not replace my discs. Ive had 2 fusions at L5 S1. The pain gets steadily worse. Im in depression therapy which is useless. Im having migraines now. I am only comfortable laying down or sitting where Im leaning on one hipbone, so my spine has no pressure. Im feeling finished...and all these Drs are saying the same thing: Youve been in pain too long, the nerves will not know any other way....any ideas??....BeenGivenNoHope


  • with a chronic pain psychologist might be helpful in learning new ways to cope with the pain.
    You aren't alone in being told that the pain that you are in isn't going away. It may be that you have developed a centralized pain syndrome, and if that is the case, it can be treated but you need to see a pain management doctor familiar with treating it and you need to be patient in the process of finding and building up to the proper levels of medication that will help you to manage the pain better.
    There are also other modalities to managing pain, ice, heat , tens, biofeedback, accupuncture to name a few.....
    I understand and hear your frustration, there are many of us living with the same situation every day. You aren't alone.
  • when you give up. Keep looking for someone to help you. I had a surgeon here in town who decided that I couldn't have surgery because I had too many damaged levels (only 3). I tried other surgeons in town, they told me the same thing. I went north to a major research university and found someone who would help me. I didn't have disc replacement, but I did have cages inserted and filled with cadaver bone and BMP. They straightened the curve in my spine and fixed it all together. Two rods and seven screws, fused L3 through S1. I have my life back. Sure I get stiff every now and then, but I can walk, I can stand, and I can even sit (although it is not my favorite thing to do). Another member on here just had about 10 levels fused with his hip bones added into the mix. There has to be someone who will help you. Try a research medical institution. At 43, you're way too young to be out of commission for the rest of your life.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Have you been seen in a Pain Clinic yet by a Pain Management doc? There are multiple ways to help manage pain that neurosurgeons and neurologists are not normally involved in.

  • When you are told that your nerves have become acclimated to the pain, that does sound like a life sentence. I have the same problem and have been in pain for over 25 yrs, but you are not finished unless you allow your mind to believe that. I mean no disrespect as I do not know the specifics, but your Dr should not have said it like that, leaving you feeling no hope.

    It was many yrs ago that I had this issue, but did not "know" until a couple yrs ago, and even then I wasn't sure and it didn't sink in until I had a new Dr explain it to me in a different way just last year. I'm not unintelligent, I just refused to look at it the way they wanted me to before. Sometimes whenever I get tired I wish that I did not know any Dx's, and I do believe sometimes that ignorance can be bliss in some respects - where our mind is in control of critical thinking we can often get too tired to play the games that we need to learn if we want to learn how to block some of our pain from overwhelming the rest of us.

    There are times when I can't read posts like this one, or even think about answering pain related comments because it can make my own come back. I'm certain you know what I mean if you were Dx with this and I won't be offending you. But most days, it is what it is, so reading about others can actually help me focus on someone other than myself-make sense?

    I get most of my relief from a hot shower and meditation, but even watching a good movie in bed can take my mind off of things, and I value all the good things that I can still enjoy. There is always hope so anyone telling you this is negative and not a person you need in your life, not when hope is the one gift we were all given, but only have to reach out for or want. Welcome to spine-health. I wish you some pain free moments and hope in your future.
  • im sorry you are dealing with this situation. as the others have stated , you really need to find a pain management specialist who will treat you. maybe consider getting a spinal cord stimulator or pain pump? just a thought. we know what its like on a day to day basis but you have to take it day by day or hour by hour if need be. dont give up. big hugs.
  • That is the last thing you want to do.....give up!!

    Like Michelle said....Have you considered a SCS or a pain pump?

    One of those implants should help you with your pain.

    Cheers :H
    Patsy W
  • like others said, you can chose to believe what you've heard or know that there is someone out there that wants to help you improve and has the means to help you.

    Keep looking. Of course, it's extra tough to motivate on the search for answers when you are in so much pain so I do think seeing a pain management doctor is key to help you reduce the pain.

    I have been told that my nerves are likely permanently damaged but luckily my surgeon won't test because he feels the tests are just an indicator and not a definitive sentence. He's seen people that show permanent nerve damage on tests, recover after time.

    That being said...just because you saw people in NY, doesn't mean you've exhausted all options. There are people in Cleveleand (cleveland clinic) and several other expert neuro surgeons that would be interested in helping.

    The other positive thing is technology is constantly changing so even if there is no answer today, there may be one tomorrow.

    I know how hard it is. I'm 42 and I spent at least a year in your situation that was in bed, painful to walk very far, really couldn't sit or stand, hip was showing signs of bursitis. I do think learning how to manage your pain both with pills and mentally is key. It won't wash the pain away but it will help.

    It is so hard being in chronic pain because people can't see pain like they can see a scar or a cast for a broken arm....and as such, sometimes chronic pain seems very isolating to those of us that have it.

    I am glad you are here. I hope you can find some encouragement and hope in what some of us are saying.

    Gentle hugs to you!
  • Sorry to hear you're in so much pain. Keep looking for a Dr. to help you. Even a Pain Management Dr. who specializes in Spinal Cord Stimulator or a Pain Pump could help if surgery isn't an option. Do you have hardware from your fusions? Some people get an injection nerve block where the hardware is to see if the hardware is causing pain and it can be removed.

    Also aqua-therapy in a heated pool may be able to help also. Maybe your Physiotherapist can introduce you to that? Or find one who does that therapy. Where abouts do you live? Maybe Mayo clinic or Cleveland or other Specialty hospitals can help you.

    Are you taking a nerve pain med? Cymbalta is now certified to not just be an anti-depressant but it's effective for nerve pain and chronic back pain. Also please get your medications reassessed so you can get more pain relief.

    Medical breakthroughs are happening and there may be help just round the corner. We'll be here to support you when you need it. I've found this a great site for support since injuring my back and leg and find when I'm not around people who understand chronic pain I get really down. Please keep in contact and we're here to support you. One day at a time. Take care. Charry


    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Dont give up. I am on my 5th or 6th Dr for my back and pain. I am basically starting over for cervical with a new physiatrist. He started last week with trigger point injections, the interesting thing is that I've had other trigger point and the were not done the same as these. He said it may take a while to get to the root cause and he will go methodically step by step. My pain management and basically told me my nerves had short circuited and I had to live with it.
    Have had 3 surgeons tell me no surgery for now and another physiatrist tell me I need surgery.
    I understand your frustration, I'm 49 and not done living so don't give up. There is help out there.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • I've been reading alot about chronic pain & one thing the experts seem to agree on is that CP does alter the brain's chemistry & it can get "stuck" in pain mode. For me, the best example would be phantom limb pain.

    That said, I totally believe there is relief out there for you. I couldn't agree more about finding a good PM doctor.

    There is a right combination of drugs & the right exercise plan for you. It may be a combo of an anti depressant (the older tri cyclics like elavil are proving to be useful for pain), something for nerve pain & an opiate in high enough of a dose to be effective. This is where the PM doctor becomes so important. They can manage med combos more confidently than other docs.

    The right meds are out there. It's just a matter of finding the right doctor.

    Your situation sounds similar to mine, I totally know that sit bone thing to get the pressure of your spine & hips.

    My PM doc just told me the other day that I have too danged many pain generators, it's not possible to treat one thing & think I'll be pain free.

    I hope you can find the right PM doc. I fully believe the right PM program, meds, PT, etc is out there for you.
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