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Diagnosing Pain Generators

outofcontrolooutofcontrol Posts: 264
What is the most accurate method of diagnosing pain generators? Is there a test that can pinpoint what is causing the pain? Does everyone here have the exact cause of your pain pin-pointed, or is it more of "it could be caused by your X or your O"? If they can't pin-point the pain generator, how can they decide whether or not it can be fixed??
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Comments

  • No, this is the most challenging issue in spine medicine! In many cases, the pain generators can't be pinpointed, or there are many pain generators.

    Some of the tests they use, such as discograms, are not even supported by a consensus of all doctors. Some doctors think discograms' risks outweigh their benefits.

    And they are finding that people aren't as alike as they once thought in terms of which area on the spine contains nerves that serve a particular area.

    This is why no single test result, a discogram, an MRI, an X-ray, etc can diagnose a person. Doctors have to use the results of all of those tests along with the physical exam to try to deduce what is causing the pain.

    Sometimes, there just isn't enough information to justify surgery- you can't open someone up because you think it *might* help them. Sometimes the information adds up, and the doctor decides there is adequate evidence that a particular issue is causing pain, and surgery is warranted.

    And more often than you'd like to think, multiple doctors would look at the same information and reach different conclusions!

    Imagine opening your eyes after surgery, with your recovery still ahead of you, and finding that the original pain hasn't changed a bit? This is why it pays to learn as much as you can and be your own advocate. Many people go into back surgery assuming that diagnosis of back problems and surgical repairs are just like (to steal someone else's analogy) breaking and setting a leg- you look on the x-ray, diagnose the break, and fix it. It actually is much more than that, and the difference in outcomes between the best surgeons (who of course choose their patients carefully) and the poorest can be extreme.

    And for those of us who are in that position, a back injury requiring a major surgery is likely to be a lifelong issue rather than an issue the surgeon "fixes" forever.
  • HB is right in that finding pain generators can be like putting together a puzzle for spine doctors, and there are many members here that fight that battle.

    But, on the flip side, for me it was all very clear cut with x-rays and an MRI (both cervical and lumbar) and most recently with a cervical MRI and CT scan due to continued pain in my cervical area.

    I think that finding a great spine specialist is important, but that doesn't mean that it will be easy to find the problem. It just means that the chances are a bit higher because of their specialty.

    Another issue can be that they'll find the problem (as it was with my lumbar issues) and then once they got in there it was worse than they expected. My surgeon said that my lumbar was more unstable than he had originally thought from the imaging and was glad he did the surgery when he did.

    So it can go either way, depending on several factors. I think that those of us that have proper clear-cut diagnoses are very lucky because there are many who go through test after test and still can't find the problem. It's been said here before that spineys are probably the only people who are happy when they're told they need surgery - that's because the problem has been found and there's a course of action to try and make it better.

    Cath
  • Yes, surgery is at least a light at the end of the tunnel :) I totally get that.

    That always has to be balanced, though, by the understanding that if you search long enough, you might find a doctor who tells you "I know what's wrong, and how to fix it." But unless he truly is the one surgeon who "got" it and figured it out, it could be a road to more pain instead of less.

    Sometimes the best surgeons are the ones who say "surgery isn't the best option." And sometimes the best surgeon WILL find an answer. Only an educated, savvy patient is going to be able to make that distinction.
  • I think my pain is from stenosis at L4/L5. The PM doc thinks it is from the hardware at L5/S1.
    None of the ESI injections in either area have ever relieved the pain.
    Being a RN, I just want everything cut and dried--IT IS THIS, WE CAN/CANNOT FIX IT.
    If it can't be permanently fixed, then I will consider SCS or other long term treatment.
    I don't want to stay where I am right now.
  • So are ESI done as a treatment or a diagnostic tool?
    Are discograms only done if it is likely you will require surgery?
    If a MRI shows several non-serious/non specific issues, but a person has had severe chronic pain, what would the patient request to hopefully discover the problem.
    Thanks all! I am going to take control of my treatment--no longer outofcontrol
  • That's the problem- you can try to pinpoint it, but it's not always possible. If ESI at both locations do not help, then is there not a possibility also that it's mechanical in nature? Sometimes they are all contributing.

    One of the tools they use is the dermatome map, which gives the approximate sensory area for each nerve group.

    Trying to take control of your medical care can be frustrating, because many decisions are still in the hands of physicians. Better to make it a partnership :)
  • I know, I know.
    But it is so frustrating!!!!
  • I hear ya! Keep trying. Have you tried a neurosurgeon?
  • You say that you think your problem is stenosis at L4/5. Why?

    As for diagnostic treatments, a discogram may help diagnose a disc problem, but it won't do any good for stenosis or facet joint problems. ESI's can work for a disc problem, but a FJI would be needed for facet joints. As for stenosis, I think they do a diagnostic nerve block to see if a rhizotomy, or nerve burn, will help (not sure on that one, though).

    I had a bulging disk, stenosis and facet joint problems at L4/5. My symptoms were severe back and hip pain and shooting pain down the back of my legs to my calves. Bending backwards hurt like the dickens and bending forward (or sitting) gave me some relief.

    I had an ESI and medrol pack and voila, the shooting pains were gone, apparently it helped the bulging disc. Sadly, the leg pains were replaced with a wider, steady pain down the back of both legs to my knees. They tried FJIs, no help, and a diagnostic nerve burn, no help either. So I ended up with a fusion at L4/5 to open up space for the stenosis and to fuse together the facet joints.

    What are your symptoms?
  • Anyway....I have stenosis at L4/L5.
    Before I had the L5/S1 fusion, the second opinion neurosurgeon said I needed decompression at L4/L5 along with the fusion. My neurosurgeon did not agree, and (I trusted my neurosurgeon) we proceeded with the fusion alone. He said if I continued to have problems post op, then we would do the decompression at L4/L5.
    Immediately following the L5/S1 fusion, I had complete left foot drop. The back and left leg pain is worse than it was before the fusion surgery.
    My neurosurgeon told me that he did not know what caused the foot drop or continued pain. He said that the did not think that any additional surgery would help. After 6 months of PT, he sent me to pain management.
    The post op MRI still showed stenosis at L4/L5. I am not sure how the fusion should appear on exray, but, to me, they look "crooked" or at odd angles.
    My PM doc has done several series of ESI at L4/L5 and L5/S1. They really have not helped. Several months ago he did two caudal ESI.
    I have not had a FJI or rhizotomy. I don't know why he continues to do ESI at the same level, when there is no relief. I feel that this is a waste of time and money. I am not sure if these were done as a treatment or for diagnostic purposes, but I think we need to move to the next step.
    I have asked my WC case manager for a second opinion on whether or not surgery would help. I do want to return to the doc that did the surgery. I still have not had a reply from WC.
    I hate to verbalize my concerns to my PM doc. I don't want to make him think I don't trust his plan of care, but quite honestly, I have a hard time trusting any doc now.
  • By all means ask WC for a second opinion! If you're not getting anywhere with the doctors you're seeing, try different doctors!

    What grade is the stenosis (mild/moderate/severe?).

    I do think there's a balance between diplomacy and advocacy. You don't want to offend a doctor you are stuck with. But asking questions is a good way to toe that line- things like "do you think my facet joints are generating pain? Is there something you can do for that?"

    But can you ask for another PM doctor altogether?
  • I am going to try to go through my stuff today and get all those reports together. (we are in the process of trying to sell the house, and some stuff is packed, etc.) I want to put it in a post bound folder to have with me when I go back to the doc.

    I sent another email to WC today. Yes, you are correct, I need to find a diplomatic way to approach the subject with my pm do. As I have stated several times on this forum, I love my PM doc, and it is so hard to get a doc that you feel that you have a bond with.

    I do have a certain level of mistrust for any docs anymore. This from the problems and conflicting opinions regarding my fusion surgery, and from a huge, horrible misdiagnosis several years ago for an unrelated problem.

    We live in a small town, and we have to drive an hour and a half to see the PM doc or a neurosurgeon. Hopefully, this will change when we sell the house and move.

    Thank you to everyone for their help and encouragement on this issue. It has taken me a long time to return to the land of the living, and I have so much to learn and understand. I am glad to be making an effort to be back-in-control, instead of continuing to live outofcontrol!!


  • As I found out earlier this year, not all doctors are equal in terms of skill. A doctor you get along with is good, but they need to be GOOD at what they do or else you suffer.

    That means keeping up on the latest research, knowing all of the options, etc.

    I ended up dropping a PCP practice I'd been seeing for 10 years because they dropped the ball so badly when my blood pressure started going up. I totally hear ya on that one. But I ended up with a doctor who is GOOD, and I trust her very much.

    I found that doctors have a different level of ability. I dropped a doctor who didn't quite seem to know how to treat my issues and got a doctor who is totally on the ball. Pain management, same thing- I left a practice that was all about limiting my pain treatment as much as possible and went to one that was all about treating my pain as well as they could. Why stay with someone who is not doing the job?

    And surgeons, don't even get me started. I am coming up on a nasty surgery, and managed to find a surgeon who does similar surgeries very frequently- the difference between his level of confidence and a surgeon who has done the surgery only a few times is just amazing.

    So finding those GOOD doctors is possible. I live in a major metro area and still drive an hour, though, to get to the surgeon and pain care I want rather than the one that's nearby. I'll be having my surgery in a hospital that's 30 miles away rather than the one 3 miles away, because it's the best.
  • I probably just feel the bond and want to trust the PM doc. I do want to sit down with him and discuss his plan of care.
    I do not trust the NS, and there is nothing that will get me to ever see him again.

    I looked through some of the reports and have my last MRI--it is from 4/09

    Disc space narrowing at L4/L5 with central bulging of the intervertebral disc, ligamentous hypertrophy and moderate spinal stenosis.

    The last thing I had done was a flexion/extension xray last April, but I don't think anything had changed.

  • Have you read the spine health articles on spinal stenosis?
  • You would think as a nurse that I would be able to figure some of this stuff out!!
    Cardiac and Neuro are the worst for me. I can look up a picture of a functional spine unit, read and locate all the little parts, then go to read an article and can't remember what part is where, and can't understand it at all.
    I am going to have to print adrawing or make a drawing--and right now my husband is moving the desktop and printer from the basement to the den. Unfortunatelt, the new cable outlet is not working, so we have to wait for Monday for a tech to come out!
    I appreciate your suggestion and guidance. You have been such a great help to me!
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