Dystonia with CRPS – Intrathecal Baclofen Training Needed


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People with Complex Regional Pain Syndrome (CRPS) may develop dystonia, which is a twisting, perhaps crushing, movement of the hands and feet, spine, muscles. That is called dystonia and there is a specific treatment: Baclofen given into the spinal fluid.

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All too often, people with CRPS encounter pain specialists who have little or no experience with CRPS, but they have been trained to do procedures: blocks, pumps, spinal cord stimulators. Doctors need to be trained how to diagnose dystonia and when to use a different type of pump.

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CRPS is different, and I suspect many doctors must not see enough cases to become familiar. I would plead for special education to train physicians — especially surgeons because trauma or surgery may trigger onset of this poorly understood syndrome. But we must train all PA’s, NP’s, PT’s, RN’s, pharmacists, all healthcare providers about CRPS.  For some, CRPS may be a life ending pain, and deserves early diagnosis and better treatment.

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There should be special centers for treatment of CRPS where patients are more likely to get best care and where research can be done.

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Treatment must be better than what I saw yesterday in a new patient who has been needlessly disabled for five years with crippling dystonia.

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Dystonia is treatable but was not diagnosed, despite many interventions, pumps, stims, blocks, repeated blocks, by teams of pain specialists and rehabilitation centers in Southern California and Georgia. Crippling dystonia was not recognized.

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Without centers for treatment of CRPS,

too many will not get the care needed to return to life.

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DYSTONIA EDUCATION NEEDED

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INTRATHECAL PUMPS

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Dystonia may occur in those with CRPS.

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I don’t follow the literature on pumps, but I have not seen anesthesia pain specialists or neurosurgeons doing intrathecal (IT) pumps since I left MD Anderson Cancer Center in 1994.

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Training to diagnose and treat dystonia should be in medical education programs, especially the interdisciplinary field of pain – a field that should not be left to the interventionists.

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The only treatment for the crippling, twisting movement disorder called dystonia is intrathecal baclofen, not oral. Baclofen must be pumped into the spinal fluid.

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I told my patient the diagnosis on the telephone before I saw him. Next, there is the fight to get insurance to allow referral to the neurosurgeon to co-manage that part of his care. We cannot say if he could have been back to work five years ago, only that twisting and crushing hands and feet can cause an agony on top of the pervasive burning.

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The gift of human life from better research and training in treatment of CRPS would be the best thing for productivity, health, and well being.

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Support better health care in this country so people don’t have to be disabled for decades with treatable conditions.

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And vote for your congressperson to support compounding pharmacies that are invaluable.

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It is an beyond belief that pain management is taught in only 3% of medical schools in 2016. We don’t need training in opioids. We need training in this vast field in every medical school. I’ll bet returning veterans have more CRPS than any other group. How many go unrecognized? How many doctors know what allodynia is?

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided

by a qualified health care provider.

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2 Responses to “Dystonia with CRPS – Intrathecal Baclofen Training Needed”

  1. Jeisea Says:

    I’m in remission from whole body CRPS. The initial thing that helped me with dystopia and gave me some control over my symptoms was mirror therapy. A little and often worked best for me. Much less time for each session than recommended. I only did for about 30 seconds at first but repeatedly. Over a long period gradually I noticed less pain, less dystopia. There is so much more to learn about this.

    • Nancy Sajben MD Says:

      Dystonia is the medical name, but yes, it is a dystopia.

      Thank you for telling others this worked to help you! So often people give up if they don’t see instant results.


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