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Thread: How many SCIs have pain?

  1. #1

    How many SCIs have pain?

    I've come across a couple of different sources that cite how many different SCI patients experience chronic pain.

    A report at Harvard says that 7.5% to 40% of SCIs wind up with central pain.

    A webpage at University of Utah says that 69% of SCIs reports pain and that 33% said that the pain was severe.

    These two sources provide very different numbers, but I think the main difference may be that one is talking about people with neuropathic pain and one is talking about any type of chronic pain.

    Does anyone know of other sources that talk about what percentage of SCIs wind up with pain, and in particular central pain?

    David Berg

  2. #2
    Senior Member KLD's Avatar
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    Jul 2001

    Pain prevelence

    From the book Spinal Cord Injury: Clinical Outcomes from the Model Systems (pg 154-156) it is interesting to note that "the only data collected in the National SCI Database relative to pain refer to surgical procedures for pain relief".

    This certainly would not be acceptable currently in any healthcare setting as the JCAHO now requires regular assessment of pain and development of a written pain plan for people who report unacceptable pain. It may be that this question will get added to the regular data collected by the Model Systems in the future. It was added to the required follow-up data in the VA healthcare system 2 years ago (prior to the JCAHO mandate).

    The book does report other studies showing prevelence (again not differentiating between musculoskeletal and neuropathic pain) in SCI of between 18-63% in one study (Mariano) and 80% (Nepomuceno). They further state that while "most investigators have suggested a relatively low prevalence of sever and disabling neurogenic pain in the SCI population, this problem has been cited as the single most important factor responsible for lowered ratings of quality of life when it occurs."

    Personally I would estimate from my own practice that roughly 30-40% of my patients have neuropathic pain, although thankfully it is not severe disabling pain for most. The rate of this goes up with aging as does the rate of musculskeletal pain, either alone or combined with neuropathic pain.

  3. #3
    Senior Member Jeff's Avatar
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    Jul 2001
    Argao, Cebu, Philippines

    How about ...

    the pain in the ass [literally] from sitting on an emaciated butt 16hrs/day? I think FES to keep muscle bulk in the butt should be required therapy. It'll prevent sores saving $millions and make us all a little more comfortable. My ass hurts all the time!

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  4. #4
    Thanks KLD. It would be interesting to do a study on the increase of pain with time, both in relation to age and to time since the injury. It's common, of course, for a delay of anywhere from days to months before neuropathic pain sets in.

    I'm just starting to dig into the responses from the pain survey I posted on PainOnline during October, and it's fair to say that the largest group is SCI patients. That doesn't necessarily mean much, since it could have more to do with where notice of the survey was advertised than what percentage of people have central pain as a result of SCI.

    Regarding the reference to surgery for pain management, I might also mention that I have a handful of people that responded to the survey that have central pain as a result of surgery, including surgery that was meant to help reduce pain. I don't claim to be qualified to offer medical advice, but from what I've read and heard from visitors to my site, I would only recommend ablative surgery for pain relief in cases where the patient is terminal, such as a cancer patient with 2 years or less to live. Too often I hear of cases where the pain went away for a time and then returned worse than before the surgery. I specifically know of one well-known (and now retired) neurosurgeon in Canada who performed well over 100 cordotomies for pain relief, only to decide that they weren't reliably effective and that he would not perform any more.

    David Berg

  5. #5

    I have to smile just a little at your post, but I assure you, I'm not laughing. After being stuck in bed for just a week when I was in the hospital in September my butt was plenty sore, and I have more padding there than I care for.

    David Berg

  6. #6
    I thought all people with SCI get sort of phantom pain in the bits with no normal sensation but it varies from person to person and some can learn to ignore it. And some get (or eventually get) it in the bits they can use from over use

  7. #7
    Senior Member Jeff's Avatar
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    Jul 2001
    Argao, Cebu, Philippines

    I have a burning sensation in my feet

    It began a couple years after injury. It goes away sometimes for a month but always comes back and is worse some days than others. I can ignore it pretty well, although I didn't wear shoes at work for almost a year. Got a lot of funny looks but I figured it was just part of the package that is SCI.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  8. #8

    There have been many studies of the incidence of neuropathic pain after spinal cord injury. The surveys have been mostly inadequate because there has not been a good definition of neuropathic pain until recently. As you can see from some of the reports below, pain is a frequent complaint. In addition, there is a problem with the incompleteness of the surveys. If we assume that the people who do not answer the surveys do not have pain, the number of people who do have pain will be smaller. As you can see from the Finnerup, et al. (2001) study, 77% of respondents report having pain or unpleasant sesnations. About half of them show evidence of allodynia and other characteristics of neuropathic pain. Wise.

    Finnerup, N. B., I. L. Johannesen, et al. (2001). "Pain and dysesthesia in patients with spinal cord injury: A postal survey." Spinal Cord 39(5): 256-62.
    STUDY DESIGN: A postal survey. OBJECTIVES: To assess the prevalence and characteristics of pain and dysesthesia in a community based sample of patients with spinal cord injury (SCI) with special focus on neuropathic pain. SETTING: Community. Western half of Denmark. METHODS: We mailed a questionnaire to all outpatients (n = 436) of the Viborg rehabilitation centre for spinal cord injury. The questionnaire contained questions regarding cause and level of spinal injury and amount of sensory and motor function below this level. The words pain and unpleasant sensations were used to describe pain (P) and dysesthesia (D) respectively. Questions included location and intensity of chronic pain or dysesthesia, degree of interference with daily activity and sleep, presence of paroxysms and evoked pain or dysesthesia, temporal aspects, alleviating and aggravating factors, McGill Pain Questionnaire (MPQ) and treatment. RESULTS: Seventy-six per cent of the patients returned the questionnaire, (230 males and 100 females). The ages ranged from 19 to 80 years (median 42.6 years) and time since spinal injury ranged from 0.5 to 39 years (median 9.3 years). The majority (> 75%) of patients had traumatic spinal cord injury. Of the respondents, 77% reported having pain or unpleasant sensations, and 67% had chronic pain or unpleasant sensations at or below lesion. Forty-eight per cent reported that P/D could be evoked by non-noxious stimulation of the skin indicating that allodynia is present in almost half of the patients. Forty-three per cent of respondents took analgesics, 7% received antidepressants or anticonvulsants. CONCLUSION: This survey suggests that pain and dysesthesia are common and serious complaints in SCI patients. Unexpectedly, only 7% of the patients were treated with drugs considered to be most effective in neuropathic pain. This emphasizes the need for a continued research and education on P/D in SCI.

    Siddall, P. J., D. A. Taylor, et al. (1999). "Pain report and the relationship of pain to physical factors in the first 6 months following spinal cord injury." Pain 81(1-2): 187-97.
    A prospective, longitudinal study of 100 people with traumatic spinal cord injury (SCI) was performed to determine the time of onset. prevalence and severity of different types of pain (musculoskeletal, visceral, neuropathic at level, neuropathic below level) at 2, 4, 8, 13 and 26 weeks following SCI. In addition, we sought to determine the relationship between physical factors such as level of lesion, completeness and clinical SCI syndrome and the presence of pain. At 6 months following SCI, 40% of people had musculoskeletal pain, none had visceral pain, 36% had neuropathic at level pain and 19% had neuropathic below level pain. When all types of pain were included, at 6 months following injury, 64% of people in the study had pain, and 21% of people had pain that was rated as severe. Those with neuropathic below level pain were most likely to report their pain as severe or excruciating. There was no relationship between the presence of pain overall and level or completeness of lesion, or type of injury. Significant differences were found, however, when specific types of pain were examined. Musculoskeletal pain was more common in people with thoracic level injuries. Neuropathic pain associated with allodynia was more common in people who had incomplete spinal cord lesions, cervical rather than thoracic spinal cord lesions, and central cord syndrome. Therefore, this study suggests that most people continue to experience pain 6 months following spinal cord injury and 21% of people continue to experience severe pain. While the presence or absence of pain overall does not appear to be related to physical factors following SCI, there does appear to be a relationship between physical factors and pain when the pain is classified into specific types.

    New, P. W., T. C. Lim, et al. (1997). "A survey of pain during rehabilitation after acute spinal cord injury." Spinal Cord 35(10): 658-63.
    There has been little research on pain in the acute phase of spinal cord injury (SCI) rehabilitation. This study surveyed the pain experience and management strategies in such patients. The subjects consisted of inpatients who were undergoing rehabilitation following their acute injury, and were assessed regarding the presence and type of any pain upon admission to the rehabilitation ward, and reviewed weekly during their stay. They were reassessed on reporting any new pain. Pain intensity was recorded on a Visual Analogue Scale. The maximum intensity of pain during admission was compared to that at discharge. All interventions directed at pain management were documented. Patients were reviewed one year after discharge regarding current pain experience. Almost all of the patients (n = 23; 96%) experienced pain at some stage during their inpatient rehabilitation. Overall pain intensity for those patients with pain during inpatient admission decreased by the time of discharge. At the one year review however, pain intensity tended towards that seen on admission. The reasons for pain tending to increase after discharge were not apparent. Neuropathic and Myofascial Pain Syndrome (MPS) were the most common types of pain experienced. A combination of pharmacological, interventional, physical and psychological approaches were used in pain management. At one year review, neuropathic pain remained common while MPS and orthopaedic pain had decreased. Pain is a common and significant problem for many SCI patients and is a challenge for the treating team to manage.

    Siddall, P. J., D. A. Taylor, et al. (1997). "Classification of pain following spinal cord injury." Spinal Cord 35(2): 69-75.
    Pain continues to be a significant management problem in people with spinal cord injuries. Despite this there is little consensus regarding the nature, terminology and definitions of the various types of pain that occur following spinal cord injury. This has led to large variations in the reported incidence and prevalence of pain following spinal cord injury. Treatment studies have been hampered by inconsistent and inaccurate identification of pain types. We believe that both research and management would benefit from an agreed upon classification system which accurately and reliably identifies the types of pain that occur following spinal cord injury. We have reviewed the literature on the classification of pain following spinal cord injury and have developed a classification system which adopts the strengths of previous systems and attempts to avoid the weakness inherent in others. Our proposed classification system of pain following spinal cord injury includes four major divisions: musculoskeletal, visceral, neuropathic and other types of pain. We have divided neuropathic pain on the basis of region into two subdivisions: neuropathic at level and neuropathic below level pain. We have further divided neuropathic at level pain into two categories: radicular and central, to indicate the presumed site of the lesion responsible for pain generation. We believe that our proposed classification system is comprehensive, simple and readily applicable in the clinical and research situation. It is our hope that this proposed classification will contribute to the eventual development of a universal system for the classification of pain following spinal cord injury.

  9. #9
    Senior Member TD's Avatar
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    Aug 2001
    Phoenix, AZ, USA

    The pain gets worse....

    with age?!? No wonder this half-century-old body has been screaming at me! And I thought it was just the bones that were crushed.

    I am on Neurontin and the max of Ultram and it barely touches my pain. Now my T12 daughter calls to complain about her pain too. We both resist taking narcotics 'cause we know they don't help much anyway. I suppose we could take those antidepressants and sleep out lives away.

    Seriously, though, you might take a peek at that Painonline site. It has a lot of good info on what causes the pain.

    "And so it begins."

  10. #10
    Thanks yet again, Wise. You've given me some great sources for SCI pain. Now I just need to track down similar information for central pain in other conditions such as stroke and MS.

    And TD, if you were recommending me to the PainOnline site, I'm the webmaster of that site. I wrote or edited everything that's posted there, but I still have much to learn!

    The survey I recently ran on PainOnline turned up people with central pain from a variety of conditions, including others such as cancer, arachnoiditis, syringomyelia, epilepsy , etc. Central pain can strike a number of different people.

    David Berg

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