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Hopeless Case

CoyoteCCoyote Posts: 120
edited 06/11/2012 - 8:43 AM in Chronic Pain
Hi - just writing to complain, maybe get a little sympathy. I am 45, hurt my back 3 years ago on a roller coaster. Today I saw my 4th surgeon, to get another opinion - I have chronic, debilitating low back pain - can't work, can't do much at all. However, the MRI shows only minimal damage at l4-l5 (a little bulge, a little tear, loss of height) - and the discogram was negative. Have had all sorts of medication/injections/therapies over the past 3 years.

Really - I have tried everything and nothing helps, and apparently, neither will surgery.

So - my future - the next 10 - 20 - 30 years - is pills and pain. My current meds are Lyrica and Oxycodeine. All the NSAID's - as much as I love them - make my hair fall out (I've lost about half).

I guess I'll feel better (in my head/spirit - certainly not in my back) tomorrow, but today - Today is very dark.


  • Welcome to Spine-Health. I'm sorry to hear about your lower back problems and understand your frustration.

    What are your symptoms exactly?

    I'm going to tell you what happened with me and see if it might give you some hope. I'm not a doctor and this may not be happening to you, but it might be something to think about.

    I had lower back pain, pain that radiated into my hips, and pain down the back of both of my legs to my knees. After much investigation and injections, my surgeon figured out that I had severe facet hypertrophy (swelling), and stenosis. It also turned out that I had spondylolisthesis. My surgeon knew these were the problems, but didn't know truly how bad it was and how unstable my spine was until he did surgery. The only way to fix this problem was to go in and fuse the facet joints and open up some space to give more room for the nerves to get through, then put in some rods and screws to stabilize everything.

    By the way, I also had a minor disc bulge at the L4/5 level that wasn't causing any of my problems.

    Investigate around the site - there's a ton of information and I hope there's something here to help you.

    I've known members here that have had seen up to 10 surgeons before they found someone who finally understood how to help. I'm hoping that your doctor search has included a fellowship-trained spine specialist, either ortho or neuro, but a surgeon who only works on spines.

    Take care and please keep us posted.

  • I just wanted to say I hear you. I think a lot of chronic pain is all about finding the *right* doctor to help you. Have you ever been evaluated by a physiatrist? If not, I would highly recommend it. It has been my experience that they are usually excellent diagnostician and are often able to diagnose pain sources that are overlooked by spine surgeons (both orthopedic and neuro). I think it is very possible that the disc pathology on your MRI is incidental, and your pain source is something else entirely.

    I also want to offer you encouragement that there is an answer out there for you. So many of us on the boards have been bounced from doctor to doctor being told that either they could find nothing wrong, or that there was nothing that could be done to help. It's hard not to be discouraged, but just because one doctor (or a few doctors) can't figure it out doesn't mean that the search for answers has to end. Also, I think as you move forward in the chronic pain journey you'll find that even if pain cannot be "cured" there are lots of ways to manage it. Chronic pain may be something to accept, but there are ways to manage it (and not just pills, either). I really think that if you haven't done so, a board certified physiatrist would be an excellent next step because they can work with you both diagnostically and from a pain management perspective.

    Finally, I leave you with some of my very favorite quotes that I cling to on those inevitable dark days:

    "To heal does not necessarily imply to cure. It can simply mean helping people to achieve a way of life compatible with their individual aspirations - to restore their freedom to make choices - even in the presence of continuing disease." --Dubos, 1978

    "Hope is the thing with feathers
    That perches in the soul,
    And sings the tune--without the words,
    And never stops at all" -Emily Dickinson
  • sent you a longish PM
  • Sorry for taking so long to reply - I couldn't bear to even look back here on the Forum until this evening - I was thinking I was going to pretend there was nothing wrong with my back, have nothing to do with "spineys" anymore, ha-ha.

    Thanks to you all for your suggestions - I really was despairing - but each of you have given me other roads to follow; other ways to look at things; other goals to aim for. Just got to keep going, even if things don't happen as quickly as I would like. Thanks for helping me to keep inspired.

  • Just wanted to let u know u r not alone in this back mess. How does the Lyrica work- side effects and do you think it does anything? Something new is brewing once again in my chronic 4 surgery back. Let me know and wish for relief forBOTH of us.
  • Coyote,
    Time and perhaps experience does diminish the emphasis of hope itself and as a person who has had pain for 20 years I would not have wanted to know the outcome from the start.

    Hope is an emotive expectation based on our experience; it does vary and is enhanced when those positive and realistic expectations become our reality. Hopeless has an air of finality, it is only natural to become frustrated and disillusion for all the potential improvement given from others with good intention and minimal results.

    Most wish for successful surgery and when we are told surgery is not an option it is upsetting and you are justified in complaining in a measured way.

    It sounds as if others have given you some ideas of alternative options, evidence here suggest that spines and pain itself is less manageable than we initially imagined and if anyone wishes to go down the multiple surgery route to find a solution that is a right they have, where possible. We have no statistics here that relate to pain levels even after having surgery and those we have to live with, good or bad.

    The professor caring for my spine said, surgery this time would not be an option, that took some guts to tell someone they would have to live a lifetime of this pain, hope has to be realistic and words are easy to say.

    Take care and good luck.

  • Hi Stefany...I am sorry to hear of your pain. Most of us hear completely understand the toll it takes on mental well-being. We won't call you a spiney, we'll just call you a fellow human being looking for information.

    I hope folks here helped you with some options. I guess some folks here would say I'm lucky because my diagnosis was clear and evident. I know with backs it's frustrating when there isn't one obvious reason for your pain. But trust me, I believe you when you say you are in pain.

    Things will get better....we'll be here for you.
  • It helps me in so many ways. Everyone is so different, and has something different to offer. Vicky - I just wrote a pretty lengthy response to "gagy" about my experience with Lyrica (she is the author of "Lyrica side effects"). I think the one thing I really did right with that drug is just slowly increase the dose - not just jump into taking it all at once - so I could keep it manageable, and I knew what I was getting into.

    John - you're like our resident philosopher! You put an interesting twist/perspective on hope/hopelessness - something to really reflect on. I also love your quote - "Pain is inevitable; misery is optional".

    DNice - you've got the right name, I think. Thank you for your kindness - coming here was the first time I ever posted on a forum or got writing on the internet. As I said, I am grateful to be here, and honestly I just hope I can be as strong, courageous and generous as the people I find here - the Spineys.
  • An important thing about Lyrica with regards to my use of it, is - I don't work and don't have kids. I think I'd be a basket case if I did. I was working part time for a little while, but between the pain, problems with transportation, etc. I would get so stressed and get into arguments with people at work, which I believe was a side effect of Lyrica as I was not like this before.
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