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Medical Management |
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Patients are referred to the PPRC following multidisciplinary evaluation in the Chronic Pain Clinic, which includes medical diagnostic evaluation as one component. Prior to consideration for the PPRC, most patients will have already undergone a variety of types of outpatient treatment, including outpatient physical therapy, cognitive-behavioral therapy and trials of medications and other medical interventions.
The main emphasis of the PPRC is not on prescribing medications, but rather on using physical therapy and cognitive-behavioral interventions to help relieve pain and improve functioning.
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The emphasis of the PPRC is on treating CRPS/RSD primarily with physical therapy, cognitive-behavioral interventions and a therapeutic setting that emphasizes self-management. This emphasis is based on two considerations:
- There are a number of studies of pediatric CRPS/RSD indicating that this type of treatment is highly effective for improving functioning and reducing pain.
- Available evidence does not suggest that any other type of treatment (including medications, nerve blocks, stimulators and implanted pumps) is equally effective. Those other types of treatment also carry a number of potential side-effects and risks (see below).
There is a physician on-site at the PPRC throughout each day, and there is a brief daily reassessment of medical issues for each patient. The physician is available to assess concurrent medical problems, to evaluate patients for injuries and to monitor responses to treatment.
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It is useful to distinguish between two major types of pain. Nociceptive pain that arises due to tissue injury or inflammation. Neuropathic pain persists after injury or inflammation resolves, due to abnormal signaling in nerves.
There are many different types of neuropathic pain. Neuropathic pain can be caused by direct injury to major nerves. It can be caused by infections in the nerves, as can occur with the chicken pox virus (shingles). It can also be caused by toxins or metabolic diseases, including diabetes.
The abnormal nerve signaling in neuropathic pain conditions can arise from changes in the nerves in the arms and legs, but it can also be maintained by abnormal information processing in the spinal cord and even in the brain. Abnormal pain signaling in the brain does not mean that someone's brain is injured. Their brain may look normal on an MRI scan, and they may think and feel and see and hear normally, but they can have pain that persists because of something like an abnormal habit pattern in how the brain processes information about the pain.
CRPS/RSD is considered by most experts to be a specific type of neuropathic pain. We believe that it involves changes in the activity of nerves, but not just in the affected limb, but also in the spinal cord and in the brain. We believe that it is a useful to regard CRPS/RSD as involving a "misprogramming of pain processing" and possibly a "distorted body map" in the brain. We think that physical therapy and cognitive-behavioral treatment help people with "reprogramming" or "normalizing" the processing of pain information in the brain.
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Pain medications (analgesics) have a crucial role for many types of pain, including pain that occurs with surgery, immediately after major injuries, in patients with sickle cell disease having acute episodes and in patients with cancer. For patients having short term pain after surgery or major injuries, or for patients with cancer or sickle cell disease, it is widely agreed that opioid (narcotic) medications such as morphine, hydromorphone, oxycodone and methadone are very useful, and should be prescribed in most cases with an aim to reduce pain intensity to tolerable levels. These patients also commonly receive nonsteroidal anti-inflammatory drugs or NSAIDs. Ibuprofen (Motrin, Advil) and naproxen (Aleve) are examples of NSAIDs.
Studies of medications for neuropathic pain are extremely difficult to perform in a rigorous manner, even for adults. Studies of medications for neuropathic pain in children are extremely limited. Methods for prescribing these medications to children are based largely on preliminary conclusions drawn from two types of second-hand information:
- studies of the effectiveness of these medications for adults with neuropathic pain
- studies of safety and side-effects of these medications when used for other purposes (e.g. treatment of seizures, depression, bed-wetting, etc.) in children
For patients with chronic neuropathic pain, the roles of opioid pain medications and NSAIDs are much less clear. Most patients with neuropathic pain do not get much relief from NSAIDs. While some adults patients with neuropathic pain get some pain relief from opioids, many others do not, and many of the patients who get some pain relief with opioids do so only at doses that are high enough to make them sleepy, dizzy, nauseated or unable to participate in normal activities. In addition, even for those patients with neuropathic pain who get some benefit at first, the benefits may diminish over time.
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Two groups of medications have been shown to provide some pain relief for specific types of neuropathic pain in adults: anti-convulsant (anti-seizure) medications and some specific types of anti-depressant medications.
Examples of anti-convulsant medications used for neuropathic pain include: gabapentin (Neurontin), pregabalin (Lyrica), oxcarbazepine (Trileptal) and topiramate (Topamax). Examples of antidepressant medications used for neuropathic pain include: amitriptyline (Elavil), nortriptyline, and duloxetine (Cymbalta). There are a large number of studies showing that many of these medications reduce pain in many patients with the common types of neuropathic pain seen in adults, such as pain after shingles (postherpetic neuralgia) and pain from advanced diabetes (diabetic neuropathy).
Anticonvulsant and antidepressant medications can be prescribed dafely and effectively for some patients for long periods of time, although they do have some side-effects and potential risks. Different people respond to them in different ways, so that they require careful adjustment on a case-by-case basis.
Adults with CRPS/RSD are commonly prescribed anticonvulsant and antidepressant medications, as well a large number of other types of medications, including anti-inflammatory steroid medications (e.g. prednisone), vasodilator medications (e.g. verapamil, clonidine, prazocin) and medications that affect bone formation (e.g. calcitonin) and many others.
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Despite a number of studies, the current evidence does not give a clear picture regarding which medications are effective for CRPS/RSD, even in adults.
Therefore, although we do prescribe anticonvulsant and antidepressant medications for some children and adolescents with CRPS/RSD, we do so without strong evidence supporting their use. Some individual children and adolescents find them helpful, others do not, and side-effects are relatively common. Other children find them helpful for related symptoms (e.g. difficulty with sleeping).
Some centers that treat CRPS/RSD in children and adolescents (e.g. the programs at the children's hospitals in Philadelphia and Seattle) make very little use of these medications, and they still report very good outcomes using a rehabilitative treatment approach similar to that of the PPRC.
In summary, while oral medications may be continued during the program for some patients, the overall emphasis of the PPRC is on rehabilitative interventions, not on analgesic medications.
The PPRC has no facilities for intravenous medications. Patients who are receiving intravenous medications will need to be transitioned to oral medications prior to consideration for the PPRC.
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Patients at pain clinics that treat adults commonly receive nerve block injections for CRPS/RSD. The available information from studies of nerve block injections even in adults with CRPS/RSD is difficult to interpret. These data are even more limited for children and adolescents.
At Children's Hospital Boston (main campus at 300 Longwood Ave.), we make limited use of specific types of nerve blocks for a small subgroup of patients. These types of blocks are commonly performed via indwelling tubes (catheters) and may include epidural infusions, brachial plexus blocks or infusions, and peripheral nerve block infusions in the leg (either popliteal fossa sciatic blocks or femoral blocks). These infusions help some patients, but not others.
We should emphasize that the great majority of children and adolescents with CRPS/RSD do not need nerve block infusions, and overall these interventions are much less important and much less evidence-based than an intensive rehabilitation program such as the program offered at the PPRC.
No nerve block infusions or catheters will be offered at the PPRC.
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Adult pain clinics also treat some patients with CRPS/RSD using more invasive approaches, including spinal cord stimulators, sympathectomies, implanted spinal pumps and intravenous ketamine infusions. Expert panels have reviewed the available studies on these interventions for adults, and their impression (and ours) is that the available data suggest that, even for adults, these interventions have a very uncertain risk-benefit ratio. There are no published controlled clinical trials of these interventions for children and adolescents with CRPS/RSD. In view of the significant risks and unknown benefits of these interventions, and in view of the high success rate of rehabilitative treatment for pediatric CRPS/RSD, we do not, in general, recommend these more invasive interventions for pediatric CRPS/RSD.
No stimulators or pumps will be implanted or adjusted in the PPRC, and no ketamine infusions are performed for CRPS/RSD at Children's Hospital Boston, either at Waltham or at the Longwood Ave. campus.
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