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chronic back pain - keep hitting dead ends!

katejs90kkatejs90 Posts: 15
edited 06/11/2012 - 8:52 AM in Chronic Pain
Hi there, i need some advice;

here is my story (very brief!)
I was diagnosed with kyphosis and scoliosis at 12. I was braced for a year when I was 14/15 which fixed the scoliosis and slightly improved the kyphosis but really just made it more stable. I was then told that the kyphosis had cause a disk to split and herniate and had emergency fusion surgery in March 2007.

After surgery the pain was improved for about 6 months and then I started getting more problems.
Four years on, I am in constant pain, I get horrendous flare ups in my lower back, I get shooting pains and numbness in my legs. I'm surviving in painkillers.

The doctors can't find what's wrong, everything looks normal on the scans (I am seen at the Royal Orthopedic Hospital in London).
But I am deteriorating by the day, it's getting worse so rapidly and it's scary.

Does anyone have a similar story or idea's of what it could be?

I spoke to my surgeon today who said that if the pain was unchanging and stable he would put it down to nerve damage and scar tissue. But it's not and I think it worries him almost as much as it worries me!

I'm going to see him in a few months to see if he can figure out the next steps.

I'm really not coping well. I'm at university away from home, I'm struggling to get into lectures because of the pain. I'm just so frustrated because we're just going round in circles, they come up with an idea of what it could be, they run tests and it comes back without answers. Meanwhile I'm getting worse, it worries me, I mean realistically how long can it keep getting worse for until I cant do anything? The painkillers exhaust me, and I really don't want to be on them forever - I haven't been free from pain medication since I was eleven!

sorry to ramble on and moan.

I would really appreciate your prayers and advice.



  • It could be internal disc disruption. CT 's and MRI's often will miss tears and the bad condition of the disc. A discogram at the level of pain would determine if you have tears. The outer 1/3 of the disc has nerves so discs can cause pain.

    The best all inclusive website I ever saw was chiro geek. It covers all possible conditions including internal disc disruption. Again, MRI and CT often miss it.


    Have you tried the antidepressants and anticonvulsants instead of narcotic type meds for your pain? Those types can reduce nerve and mechanical pain. Lyrica and cymbolta seem to be the best based on what ive read. Read the reviews for these at drugs.com and there is a pain section. Alot of spineyes there who swear by these meds.

    When one doctor runs out of options, go to another. Not all docs are the same. I believe that in most cases of treatment resistant back pain, finding the right doctor will eventually happen and they'll figure it out.
  • thanks for your help, I'll take a look at those websites. I'm taking oxycodone hydrochloride and amitriptyline at the moment.

    as for different doctors - this is the 5th I've seen and as its at the Royal National Orthopedic in London they're some of the best drs in the UK.
    however my dr did say he was going to talk to his colleagues and seniors for ideas.

    Thanks again for the advice :)

  • Kate -
    I am sorry to hear you are having such a rough stretch. It can't possibly be comfortable to live in a place as damp as the UK with some kind of spondylarthropathy.

    I, too, got told I had pain disproportionate to my symptoms and film readings until I met my current PM doc who said films don't show everything and was willing to try everything for low back, hip, and thigh nerve pain that sizzles and burns.

    Has anyone suggested you have a spinal cord stimulator trial? I had one in November of 2009 and got the permanent implant in January of 2010. I will wrestle to the death anyone who tries to take this gem from me. Check out the spinal cord stim forum for more info and good luck to you.

    We really do feel your pain-
  • I can really hear and feel the pain in your words, and it breaks my heart for you. I am so sorry you have to go through the chronic pain that we suffer. You are so young and I will definately pray for you, and hope that the doctors can find a resolution for your problems. As far as the painkillers go, that in itself is a whole other beast to deal with. For me, the painkillers help some, but they bring on their own set of problems that everyone here knows about that has had to take them for a long period of time. We have to take them though if we want to be able to move. I agree with Steve, Chiro-Geek is a good site also to detail the types of disc problems. They have stimulators that can be put into the spinal column and it sends out pain medicine exactly where the pain originates from inside the spine. I know for some people that has worked for them, I haven't had experience with it myself. I wish you the best, and I am glad you found spine-health. The people here care so much about everyone that comes to this site seeking help. I will pray so hard for you, and hope that you get the relief that you deserve. Good luck and take care.

  • Mack - the Spinal chord stimulator looks great, but my doctors won't consider anything like that at the moment because they still think there is something more complicated going on that we need to figure out before it's written off as just chronic pain that has no real reason or cure. Thank you for your information though, it'll be good to keep the SCS in mind for the future. Thank you for your help

    Keith - thank you so much for your words of encouragement - it's great to know that people are praying for me. It's also great to be able to talk to people who really understand. Because I'm young I get a lot of 'oh it can't be that bad' or 'it'll settle down' and at the other extreme I get people humoring me and looking at me with that horrible sympathetic look. But talking to people who really understand and aren't just humoring me is great!
  • Kate,
    Have you told the learning establishment the physical difficulties you are having and they will have student support services, chronic pain, its diagnosis and satisfactory outcome are never easy and evidence here suggests increased time scale that will be longer than we initially imagined. It is a slow process for many here and each test omits that as a possible cause, so although it may seem you are going round in circles, they will get smaller and more defined.

    Do you have a flare up strategy, that differs from what you may normally do, perhaps rest more when you can and pace well.

    Good luck, I have experience of learning and chronic pain simultaneously and it is not easy.

    Take care and well done you.

  • John, thanks for your reply. The uni know about my problems and are really helpful, but at the end of the day there is only so much they can do and if I want to get the degree I need to put the work in. They are trying really hard though, they're much better than others!

    I don't have a flare up strategy, I don't really have any pain management strategy, because i've always been told that its temporary, I was first told that 4 years ago!

    My latest doctor is talking about getting me to a specialist pain management team, but is trying to hold off until they have a proper diagnoses because obviously things could change so much. Which of course is difficult because it leaves me in a kind of limbo until I know exactly what is going on!

    thank you for your support, hopefully I'll get some better pain management soon!
  • Currently many people that are living with chronic pain get treated as if they are just pretending to hurt. This is very unfortunate in that all pain is very real. One of the problems with chronic pain is that standard medical testing cannot always diagnose it so many treat it as a non-issue.

    No matter what effect chronic pain is having on your life, all aspects of it should be examined and treated. Some of the most effective methods to date are ones that include a comprehensive treatment plan. These plans also are not dependent on one sole form of treatment but instead cover a wide variety of appropriate techniques. Methods such as Osteopathic care, Dorn Spinal Therapy, Acupuncture or Massage therapy can prove a great deal more effective. You might want to visit EDITED for more information about Chronic pain and eventually find ways on how to get rid of it. Hope this helps.=)
  • You're not supposed to be here peddling your product and website - backcare01 ... Reported to admins.
  • thank you backcare02 for your reply. It is very difficult as the doctors are sure that this is not just chronic pain, they are sure something else is going on as I am deteriorating quickly. I will look into some of the pain management ideas you suggest. But for the time being my doctors are more focused on trying to find an answer. I appreciate that a lot of cases may not have an answer to why the pain is there, I have spoken to my doctors about this and they have said that in my case the symptoms don't add up to being pain without a diagnoses, they are sure there is a more complicated problem going on.

    Thank you again for your reply, I appreciate it.
  • Can anyone offer any help with Insurance appeal with Aetna for a 3 level Lumbar?
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