Dear Kristen -
Your son's story broke my heart. On so many levels.
I too grew up in Rochester, many years ago and lived a few blocks from St. Mary's, close to Folwell School; and in those days, the Clinic could do no wrong. And I mean it. Flash forward 40 years and I was diagnosed with a fresh case of CRPS in Los Angeles, and after a few agonizing months in which I got very good treatment out here, wanted to be seen "back home." Big mistake. Little did I know that the institution on whose staff my grandfather had proudly served for over 30 years had morphed into something he would never of recognized, into a conglomerate that still offered first-rate care if whatever you had was going to kill you, but otherwise now made its bed with the workers' comp carriers of the world, with a dedication to keeping down the cost of care of chronic illnesses. First, last and always.
So after thinking that I had pulled some strings, got an appointment with the Clinic's leading peripheral neurologist specializing in CRPS who promptly told me I didn't have it; only later did I learn that at the same time she was putting the finishing touches on a long-term review of patients records that would later be debunked*
for having grossly underestimated the incidence of CRPS in the population by using the most restrictive possible criteria for the disease: something that would primarily benefit workers comp or disability insurance carriers who could then apply those criteria to deny meaningful treatment to patients with fresh - acute - cases of the disease, when those treatments stood the best chance of making a difference. In fact, the only "treatment" I was offered was a three-week program run by the Department of Psychiatry that used a largely one-size-fits-all combination of occupational and cognitive behavioral therapy that would first convince patients that there was no medical hope for a cure and the best and only thing they could do was learn how to valiantly soldier on. (At the same time, I learned through a friend that another one of their "CRPS specialists" was tone of the leading expert witnesses in the state, testifying for all manner of carriers that the injured party did not in fact have CRPS.)
That said, when I was over the next few years for for (1) an evaluation of a precursor to multiple myeloma, (2) a potentially nasty amaloid (which turned out to be pulmonary sarcoidosis that went into remission on its own) and (3) a work-up following what could have been a very serious heart attack, they were great. But for treatment of chronic non-life-threatening conditions that will only increase its average per patient cost of care - such as a good friend's all but debilitating psoriasis - dream on.
That said, I was encouraged to find online the Pain Management Center of the University of Minnesota's Amplatz Children's Hospital
, with the following description of its services:
The Pain Management Center at University of Minnesota Amplatz Children’s Hospital is dedicated to improving lives through state-of-the-art expertise in pain assessment and management. We use a patientcentered, biopsychosocial approach that incorporates interventional, medical, physical and psychological therapies. Each is tailored to the patient’s needs and is in collaboration with their primary-care providers.
University of Minnesota Amplatz Children’s Hospital takes a multidisciplinary approach to the prevention, evaluation, diagnosis, treatment and rehabilitation of painful disorders. Our team of specialists includes pain experts from neurology, physical medicine, rehabilitation and psychology. Such specialists offer advanced therapies, including drug treatment, pain rehabilitation and management, injection therapies, and implants to address complex and multidimensional pain. [Emphasis added.]
Sounds like a dream, doesn't it? (Or at least in comparison to what you have seen so fa
r.) Please note that it lists the same address as that of the Fairview Pain Management Center
, with whom its physicians are also affiliated:
606 24th Ave. S.
Minneapolis MN 55454
Among the physicians listed, two stand out in particular, its director, Miles Belgrade, MD
, a pain management physician trained in neurology, and Orlando Charry, MD
, who lists his area of interest as follows:
I take interest in pain problems related to cancer, complex regional pain syndrome and musculoskeletal pain with specific expertise in implantable modalities and injections.
And note that Dr. Charry is listed as a "diplomat" of the American Board of Pain Medicine
, the most selective of such groups in the country, which requires that every physician seeking its certification both complete a one-year clinical fellowship, over and above a basic residency, and thereafter pass an 8-hour written exam.
To me, it sounds like a plan. Good luck!
* How common is complex regional pain syndrome Type I?
Bruehl S, Chung OY, Pain
Giving the matter more thought, please
be sure to have considered a comprehensive "multi-modality" program on the order of the program to which SandyS refers, the [no relation: this guy's a hedge fund manager] Mayo Family Pediatric Pain Rehabilitation Center (PPRC)
at the Boston Children's Hospital in Waltham, MA, a teaching unit of the Harvard Medical School, specializing in the treatment of pediatric patients with CRPS
. And for a Commentary discussing the program in some detail, see, Development of an intensive pain rehabilitation program for children and adolescents with Complex Regional Pain Syndrome
, Logan DE, Chiang G, Condon M, et al, Pediatric Pain Letter
2010;12(1):1-6. And I would urge you to review the Commentary carefully.
Now, it may well be that the program at the University of Minnesota's Amplatz Children's Hospital comes very close to this: I note that the program at the Boston Children's Hospital appears to be an intensive out-patient program, which may be at first blush quite comparable to the one in Minneapolis. Please note, however, that the Boston program appears to be specifically focused on the treatment of CRPS and its professionals may well have more expertise in that area. And I note from my experience with one such program in Los Angeles that it is the quality and experience of the individual professionals, right down to the physical therapists, that makes all the difference, for good or bad. (And in that regard, I would urge you to find a program where many of the physical therapists hold the 4-year post-graduate degree of Doctor of Physical Therapy, DPT: from my personal experience their knowledge of neuro-anatomy is unparalleled and bore no resemblance to the 9 years of PT I had received beforehand.)
But wherever you and your son are fortunate enough to go, PLEASE EXHAUST THE RESOURCES OF SUCH A PROGRAM BEFORE CONSIDERING SURGICAL ALTERNATIVES
: and I say this notwithstanding at least one respected study out of the Karolinska Institute in Stockholm, showing that a group of largely early teens - with severe CRPS and resistant to other forms of treatment - went into apparently permanent remission through the use of spinal cord stimulation, at a level higher than would be otherwise be predicted in such children, AND INDEPENDENT OF DISEASE DURATION AT THE TIME OF TREATMENT INITIATION. Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I)
, Olsson GL, Meyerson BA, Linderoth B, Euro J Pain
2008;12:53-59. An unimaginable result for an adult with a "disease onset" of more than a year, where the best evidence suggests that there is little or no palliative relief of CRPS from SCS after three years. See, e.g., Spinal cord stimulation for chronic reflex sympathetic dystrophy--five-year follow-up
, Kemler MA, de Vet HC, Barendse GA, van den Wildenberg FA, van Kleef M, N Engl J Med
. 2006 Jun 1;354(22):2394-6.
, for what may well be the best and most comprehensive article on the treatment of CRPS in children to-date, check out Plasticity of Complex Regional Pain Syndrome (CRPS) in Children
, Stanton-Hicks M, Pain Med.