How Are Bone Scans Used in the Diagnosis and Treatment of CRPS?

Written by Angela Mailis-Gagnon MD, MSc, FRCPC (PhysMed)

The three-phase bone scan has been used since the mid-1970s to diagnose CRPS. An intravenous(IV) injection of a particular radiolabelled substance that has a special tendency to concentrate in the bones is administered and a technician takes images of the body part in question, looking for the initial phase of “blood flow.” Immediately, he will look again for the second phase of “blood pool.” Finally, approximately 2 hours later, images will show the concentration of the radiolabelled material in the actual bones; this is the “delayed phase.”

There has been a characteristic pattern of activity in the involved limb, which in the early 1980s was described as “pathognomonic” -a sign or symptom upon which a diagnosis can be made- of CRPS. However, these were retrospective studies, which looked at patients who first had the bone scan for suspected CRPS and then the data were analyzed. These studies could not tell how many of these patients who had a limb trauma, but no CRPS symptoms, had an abnormal bone scan as well.

CRPS has been reported fairly frequently after a fracture; however, in one study mentioned in the recent volume of Progress in Pain Research and Management (1), only 16 percent of the patients diagnosed with CRPS 8 weeks after trauma had the characteristic bone scan pattern.

A meta-analysis of 19 published papers related to CRPS combined the data from all these studies and used special calculations to give an overall idea how well abnormalities in the scan correspond to those who have clinical evidence of CRPS. In only half the cases, the bone scan pattern was pathognomonic of CRPS. (1) Furthermore, as the disease progresses, the changes in the bone scan go away.

Interestingly, about 12 years ago, a patient of mine who had all the symptoms and signs of CRPS I had a surgical sympathectomy (considered an appropriate type of surgery for the syndrome at that time). Her three-phase bone scan before the surgery was absolutely normal; after the procedure, the radiologist told me that, according to the bone scan pattern, she had “florid CRPS.” Intrigued by this, we followed a number of patients before and after sympathectomy. (2) and proved that sympathectomy itself produces a pathognomonic CRPS bone scan.

In my line of work, CRPS I is a common diagnosis, representing 14 percent of all patients with neuropathic pain referred to my clinic (unpublished data from a very recent analysis of 784 consecutive patients who attended my program). Frequently patients are referred to me because of a “CRPS bone scan.” Many of these people don’t have symptoms any more, but the bone scan is still active. Other patients are sent to me because of an abnormal bone scan (done in the process of regular follow-up), but they have no other symptoms. “CRPS bone scan” can occur also in the healthy leg, not the one with the CRPS! Obviously this is due to the abnormal and excessive weight bearing demands on the good limb when the patient favors the leg with symptoms. In other cases, I have seen a few patients with factitious disorder imitating CRPS (these emotionally-disturbed individuals may ligate the arm or the leg creating the picture of CRPS), and some have a “CRPS bone scan,” which becomes normal when they stop ligating the limb. Finally, I have a significant number of patients with florid symptoms and signs of CRPS and a negative or unclear three-phase bone scan.

On the other hand, several studies have shown that typical CRPS bone scans can be seen in patients with diabetes and diabetic neuropathy. (3)
In my view, the value of a three-phase bone scan in the diagnosis of CRPS is very limited. A three-phase bone scan neither makes nor excludes the diagnosis of CRPS by itself. I always teach my students: “Never treat a test result, treat the patient.” In other words, a pathognomonic “CRPS bone scan” can confirm a diagnosis of CRPS only when my patient has the clinical signs and symptoms of CRPS.

1. Progress in Pain Research and Management , CRPS/RSD: Current diagnosis and management, pg 152-154) published by the International Association for the Study of Pain, 2005,
2. Mailis A et al. Alterations of the three phase bone scan after sympathectomy. Clin J Pain, 10:146-155, 1994.
3. Mailis A. Is Diabetic Autonomic Neuropathy protective again Reflex Sympathetic Dystrophy? Clin J Pain, 1995;11:76-84).

Angela Mailis-Gagnon MD, MSc, FRCPC (PhysMed) is the Medical Director, Comprehensive Pain Program, Toronto Western Hospital, Canada.

Lessons from the Front

Questions for Lt. Col Chester C. Buckenmaier, III

In the February, 2005 issue of Wired, Lt. Col Chester C. Buckenmaier, III talks about casualties in Iraq. He believes “the future of wartime pain control is a new form of anesthesia called a continuous peripheral nerve block, which takes a more targeted approach by switching off only the pain signals coming from the injured limb, leaving patients’ vital signs and cortical functions unimpaired.” Further in the article, it says, “Pioneered in experimental programs at Duke University and St. Luke’s-Roosevelt Hospital in New York City, continuous peripheral nerve blocks could transform civilian medicine in the next few years by reducing the incidence of chronic pain…” Further, this technique “will enable patients to take control of their own pain relief at home, with less dependence on addictive pharmaceuticals.” [1]

We were intrigued by this, and asked Lt. Col Buckenmaier, an acute pain specialist at Walter Reed Army Medical Center (WRAMC), about this technique and its potential use for people with CRPS.

Q: Could physicians use regional anesthesia, continuous peripheral nerve blocks, for peoples who have complex regional pain syndrome? 
Yes. It is a technique we use at WRAMC to provide patients with a ‘pain free interval.’ We believe this temporary adjustment in the afferent pain input from the affected CRPS area allows the brain to ‘reset,’ often resulting in improvement in symptoms when the block is resolved. Currently, this treatment is purely investigational and has not been formally studies to my knowledge. Again, it is a treatment option we employ at WRAMC.

Q: What about using it for other neuropathic pain syndromes? 
Regional anesthesia blocks for a variety of chronic pain syndromes are common in chronic pain practice. Though I practice chronic pain medicine, my specialty is acute pain and perioperative medicine. Chronic pain is a clinical, outpatient activity while acute pain is an inpatient hospital activity. We have a close working relationship with chronic pain but our focus is different.

Q: Could this be used as a preventative measure, to keep acute pain from becoming chronic pain? 
We know that uncontrolled pain has a number of ill effects on the body- depressed immune function, increased stress response to surgery, up-regulation of inflammatory mediators, to name just a few. We believe that true preemptive pain control (pain management before, after, and long after the surgical insult) has a positive impact on patient recovery and possibly limits the development of chronic pain. You have essentially hit on the fundamental question for regional anesthesia and advanced pain control. Do we impact on morbidity and chronic pain states? We are hoping our Regional Anesthesia Combat Casualty database will help us begin to answer this question. We have the largest cohort of wounded soldiers, many with amputation, who have been exposed to regional anesthesia during their care. We plan to compare these soldiers to other databases with soldiers who did not receive this intervention. This is a fundamental question that the Army Regional Anesthesia & Pain Management Initiative is trying to answer.

Q: Is it appropriate for chronic pain patients? With any modifications? 
It is appropriate for a variety of chronic pain patients as one of a variety of therapies. Because it is an invasive technique, it is usually reserved for the most difficult cases.

Q: Have any studies have been conducted on this procedure for long-term pain relief? Studies are available that have tried to define an impact of regional anesthesia on phantom limb pain following amputation. Results have been mildly encouraging. The biggest problem with these studies in the ‘n’ number (sample size) of participants is usually very small. Considerable work remains to be done in this field of study. I am hopeful our database will help clarify some of these issues.

Q: Are you seeing many soldiers returning from the war with symptoms of CRPS? 
No, CRPS is a rare condition that strikes patients with a variety of injuries. Some people with CRPS have the condition begin with something as simple as an ankle strain. The use of regional anesthesia for the management of CRPS is an interesting footnote; it is not the focus of our organization. We are specifically interested in how pain adversely affects recovery from major surgery (an improvised explosive device that blows off a soldier’s leg for example) and how we can improve on pain management in general after surgery. While regional anesthesia is a focus of our organization because it is so effective, it is just a slice of the whole pain management pie.

We are the Army Regional Anesthesia & Pain Management Initiative, we are also interested in innovative uses of narcotics, ketamine (and other NMDA receptor antagonists), new nanotechnology pain medications on the horizon, NSAIDS, drug combinations, and true multimodal pain therapy. We are working very hard to improve the experience of our soldiers in the current war to ease the strain of the very successful but difficult evacuation realities facing them after wounding.

Biofeedback for CRPS: Why Haven’t I Tried That?

Written by Kenneth R. Lofland, PhD

CRPS is a painful disorder that continues to challenge the medical community. The cause, course, treatment, and outcomes are highly variable and remain a source of vigorous debate among the brightest professionals specializing in chronic pain.

Biofeedback is a non-drug intervention that is used to treat patients with a variety of medical conditions. Taken simply, biofeedback can be defined by breaking down the word as “bio,” referring to the body, and “feedback,” receiving information about the body, that one would ordinarily not be aware of. A simple example of how biofeedback can work is the case of a patient with poor circulation to the extremities, often referred to as Raynaud’s disease. When this disorder is severe, coldness, pain, and poor healing results in the extremities due to decreased blood flow. It can increase the risk of frostbite and minor cuts to fingers or toes becoming infected, not healing properly, and even requiring amputation. Improving blood flow to the extremities through thermal biofeedback is one of the most effective treatments for this condition.

How does biofeedback work?
Although it sounds amazing that anyone can learn to alter blood flow, it is actually quite easy to learn. We all have a “flight or flight response.” If I am to give a presentation in front of 500 people, I will notice my hands get cold and clammy. When physical or psychological stress occurs, our bodies instantly secrete adrenaline, our breathing rate changes, our blood pressure increases, our heart rate increases, and our blood flows away from the periphery toward the core of our body, thus the cold, clammy hands. When the stressor is over, our bodies relax and these physiological responses reverse. Learning deep relaxation techniques, in combination with receiving feedback from machines measuring small changes in temperature, can advance this process and allow the blood vessels to dilate (open up) even more, allowing more blood to flow out to the periphery. So in the case of the Raynaud’s sufferer, learning deep relaxation techniques and biofeedback allows for increased blood flow to his or her hands. This improved circulation increases hand temperature to normal levels, decreases pain, and improves the body’s ability to heal any cuts or injuries naturally.

How can biofeedback help my CRPS?

Changes in blood flow often accompany CRPS. Learning deep relaxation techniques can be paired with a biofeedback device which measures skin temperature in order to help a CRPS sufferer learn to relax deeply, increase blood flow to a part of the body with a restriction in blood flow, increase the temperature of that part of the body, and decrease the pain.

What does the science say?
Biofeedback has not been subjected to the same level of scientific scrutiny as many medications. More, larger scale, and better controlled research studies are needed in this area, as is funding to support this type of research. Several studies have been done evaluating biofeedback for pain and found positive effects. For example, Grunert et al (1990), found that 20 patients with documented CRPS for 18 to 60 months and who failed to respond to a variety of treatments underwent thermal biofeedback with relaxation training as a part of counseling treatment. The results found that patients were able to significantly increase their blood flow and significantly decrease their pain levels (p<.0001). This pain reduction was maintained at 1-year follow-up assessment and 14 of the 20 patients had returned to work. The conclusion was that this intervention was effective to reduce pain in CRPS/RSD for the long term, even in patients who had failed prior treatments. Multiple other case studies exist but I reiterate that additional well-controlled treatment outcome studies are needed with larger sample sizes.

As a clinician I am very enthusiastic about the use of thermal biofeedback for the treatment of CRPS. Specific sources for this enthusiasm include:

1. The number of case reports indicating successful outcomes, even in cases where other treatments have not helped the CRPS patient (see above)

2. The common sense aspect that at least one hallmark symptom of CRPS, namely decreased blood flow and temperature in the affected area of the body, can be reversed with thermal biofeedback

3. My own clinical experiences, which have demonstrated positive results using thermal biofeedback with CRPS sufferers

4. It is one of the few treatments in medicine that has essentially no known negative side effects. There are very few other treatments available to chronic pain sufferers with no negative side effects.

How do I find a biofeedback provider?

First, some caution must be taken when identifying a biofeedback provider. While being a licensed clinical psychologist requires a specific doctoral degree and a license, and being a licensed physician requires a specific medical degree and a license, being a biofeedback therapist does not require a specific degree or license. Therefore, practitioners at much different levels of training and experience may be presenting themselves as biofeedback therapists. It is always best to ask a prospective provider to tell you about his or her training in general, specific training in biofeedback, and what conditions he or she specializes in when treating with biofeedback. Knowing the individual’s level of training, specialization, office practices, etc., can make you a more informed client.

Several states have biofeedback societies with web sites, such as the one in Illinois www.biofeedbacksocietyil.org. These sites generally have a list of practitioners that are members of the state biofeedback society. Membership in these organizations does not indicate any level of training or expertise. However, health care professionals with an interest in biofeedback can be found there.

Also, a national organization exists, the Biofeedback Certification Institute of America (BCIA) that certifies some individuals who chose to learn biofeedback through this particular organization. Being a member of this organization does indicate a certain basic level of biofeedback training, but it does not guarantee the degree to which a provider has specialized or the amount of experience a provider has had. Further, not being certified by this organization does not indicate a lack of training or experience of those who may have gotten trained via other routes, such as in graduate school.

1. Grunert, BK, Devine, CA, Sanger, JR, Matloub, HS, Green, D. (1990). Thermal self-regulation for pain control in reflex sympathetic dystrophy syndrome. Journal of Hand Surgery. 1990; July 15(4): 615-618.

Dr. Lofland is the Director of Pain Studies and the Director of Psychological Services at the Pain and Rehabilitation Clinic of Chicago. He is past President of the Biofeedback Society of Illinois and the current President of the Midwest Pain Society. He is both a dedicated clinician, treating individuals with pain syndromes such as CRPS, and an active scientist, researching the most effective treatments for many chronic pain syndromes. He can be reached for follow-up questions at [email protected].

The Handicap’s Appetite

Written by Nancy Meagher for the RSDSA blog.

Sometimes I still crave running and walking. It was a rare wedding celebration that I had not been moved by the music to dance. A few years ago our niece married a fine fellow from the south of France. As I had taken a few years of High School French, and as language is a hobby of mine—- I was placed at the reception table with: Sylvan’s Lovely Aunts. Moved by American songs in a language that did not come easily, a friendship ensued. We danced our international hearts out. The French in their stylish slim heels – I in a sassy pair of patent leather flats that my friend Elisa insisted I buy. Tiger striped, black grosgrain ribbons at each Peak -a -Boo toe, they were subtle Diva shoes. Several days before the wedding, we leaned back into stuffed faux leather vibrating chairs and enjoyed Pedicures. I left the Salon with Hot Orange Toes. Two years ago, a sure -footed and overly-scheduled Elementary Art teacher, I stumbled and sprained my ankle badly, while crossing the school’s expansive athletic fields. It was the first full week of school, a brilliant September morning when students and teachers are refreshed and anything seems possible. I had just finished Art -Time with two consecutive groups of ernest Pre-Schoolers. An introduction and friendly banter with the new school Vice- Principal interrupted the tail end of our session. Taking it all in stride –which I am good at, I packed up both of my heavy Art Bags, tucked a large rolled poster under my arm and headed out on foot across the fields to meet the Fifth grade. It would be my third class of seven. On that vast grassland spread out before me which separated the two elderly school buildings, my appetite changed. My sprained ankle injury blossomed into a Nerve Disorder called RSD;  Reflex Sympathetic Dystrophy. The newer name is Complex Regional Pain Syndrome: CRPS. A Rose by any name. A cure as elusive as the Monarch Butterfly I spotted in the field that day. It’s brilliant red-orange scales and black stripes – having caught my artist eye. Today, shoes hurt. My feet are as hot as that long ago nail polish – A Sympathetic Nervous System on overdrive. What I DO crave now, is swimming, and lots of it. Seven days a week for fifty minutes ––I stretch and glide through blue-green water with all the grace of that luminous butterfly, my wild red hair and black swimsuit skimming the surface of a field of turquoise green.  Over and over and over and I never get tired of the slow, gentle and wonderful feeling of moving fast through space.

How to Obtain the Best Medical Care for CRPS

Written by Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA and Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA for the RSDSA blog.

If you are reading this, it means you, a friend, or a loved one has been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis.

There are many good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong treatment can actually lead to a worsening of this condition. Third, from a practical standpoint, your insurance coverage may be limited and thus getting the right treatment first which is covered is very important.

There is both good and bad news. We will start with the bad news. Many of you will not have adequate insurance coverage to provide the absolute best care for CRPS. Problematic as well is that even with good insurance coverage, treatment available in your local community may not be ideal or even available. With that said, the good news is that if you will take time to educate yourself about your CRPS condition, you have a much greater chance of getting what you need to get better and to manage this condition.

While some treating physicians may focus on medications and interventional procedures (i.e., injections, device implantation, etc.), and these can certainly be an important part of treatment, the best treatment is approached from a biopsychosocial perspective by an interdisciplinary team of treaters. This means treating you as a whole person and paying attention to both the physical and psychological aspects of chronic pain. This approach involves coordinated medical care with a treatment team, other than yourself and significant others, including a physician pain specialist, a physical and/or occupational therapist and a psychologist.

In this type of biopsychosocial approach, it is critical that the person with CRPS, become educated about the condition and be the “captain of the ship” when it comes to managing medical care. Being passive and leaving it all up to the doctors and therapists just won’t work. The person with CRPS needs to understand his or her condition and how to treat it. That means becoming informed and educated. Whatever therapy is provided, it will not be enough if the CRPS patient doesn’t “practice” what they are taught 24/7 both at home and away from the doctor and the therapy center.

The ideal setting for treatment is where the physician is a rehabilitation-oriented pain specialist and not just a doctor focused on prescribing pills and doing procedures (i.e., nerve blocks, implanted devices, etc.). This means ideally, that the physician works closely with a physical and/or occupational therapist and a psychologist with expertise in treating CRPS. It is always best if they work out of the same facility as a team (this is called interdisciplinary) but even if they are in separate offices, it is important that they communicate and work together as a team (this is called multidisciplinary).

Getting back to the issue of education, while some physicians and therapists feel threatened by an educated patient who is knowledgeable and asks questions – and you need to be careful not to make the treater feel uncomfortable – it is perfectly okay to be educated about your problem and ask questions. High-quality treaters enjoy questions and are not threatened by knowledgeable patients. Questions you can ask include “Have you read up about CRPS?” and “Have you made yourself familiar with the usual medications and treatments prescribed for this condition?”

Here are some other things to consider when you are evaluating obtaining the best treatment for CRPS.

  1. Identify other individuals with this condition in your community to find how they have done with their treatment and who they have treated with. Does their physician, physical therapist and psychologist listen to them and provide effective treatment? Are they being provided education about the condition and a good home program to expand and work on what they are learning when they’re in therapy?
  2. Tell your primary care family physician that you are familiar with the diagnosis and want to make sure you are being referred to a pain physician who is rehabilitation oriented and not someone who focuses on prescribing medications and injections and other invasive treatments.
  3. Interview the doctor and therapist to see if they are truly familiar with and experienced in treating CRPS. Is the medical care provided truly coordinated between the various disciplines?
  4. Ask the physical therapist how commonly they treat people with CRPS and if they are familiar with some of the more recent graded motor imagery approaches such as mirror box therapy.
  5. If there is no physical therapist in your community that consistently treats people with CRPS, ask to treat with the therapist that sees the most people with chronic pain. Many of the same pain management skills can be applied to managing CRPS.
  6. As you speak with the physical therapist, see how willing they are to provide full answers to your questions. Quality CRPS treatment requires a lot of education and your therapist should be eager to provide you with the answers to your questions.
  7. Many psychologists deal with symptoms like depression and anxiety, but ideally, the psychologist needs to be trained in pain management. It is very important that they use cognitive behavioral therapy (CBT) as part of their therapy as CBT has been found to be highly effective for managing pain. Cognitive behavioral therapy is a form of psychological treatment that focuses on examining and changing the relationships between maladaptive or faulty thoughts, feelings, and behaviors.

The RSDSA website is a great source of information. Other sources of information are The American Chronic Pain Association and The ACPA Resource Guide to Chronic Pain Medications & Treatment.

Please consider making a donation to RSDSA today!

Multidisciplinary Treatment – Three Weeks in Utah

Written by Aubrey Haley for the RSDSA blog.

In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat the disease that was ruining our lives.

After a lot of research, we were certain The Bridge was the right place for me. The concept of multidisciplinary treatment is to incorporate physical, mental and emotional therapies to tackle chronic illness from every possible direction. The way The Bridge program accomplishes this is what sets it apart from other multidisciplinary treatment centers. The day after my arrival in Utah, I had a doctor’s appointment for an exam, blood work and medication review. Each morning, we went on a walk at 7 a.m. Our short walks gradually turned into several mile hikes by the time the session ended a few weeks later. This was important to me because reconnecting with nature was an essential aspect for my recovery and the part I was afraid of due to my mobility issues. Our daily routine included individual Talk Therapy, Physical Therapy, Personal Training, Chiropractic Care, Reiki and Cranial Sacral Therapies.  We had several group sessions with professionals discussing topics like goal setting, relationship management and self perseverance. The program included presentations by a survivalist, a life coach and a personal chef, along with volunteering, drum circles, wild mustangs and art and music therapies.

On Sundays, we were encouraged to journal, do laundry or attend a church service of our choosing. Gradually, I realized I had been harboring a lot of underlying anger and bitterness towards my CRPS because my disease was caused by an accident that was someone else’s fault. Furthermore, as a wife and mother, I had been careful not to express my emotions out loud for fear they would show my weakness or impact my family, although they were manifesting in other areas. The Bridge program allowed me to dive into emotional areas I’d been hiding for years. Being able to explore my feelings and address my weaknesses freed me from the negativity that was feeding my disease. At the end of the three weeks, we each made a list of things to eliminate from our lives and threw them into a bonfire, representing the negativity we were letting go.

The Bridge program only works if a guest is open to the process. I arrived with a lot of faith and hope, though, I had no idea how the program would work for me. By the end of the session, I learned I had the ability to tap into the mental aspect of a disease many insist is not “in the head”. I had to let go of the emotions that were holding me back from a healthy future. Finally, I understood fear, anger and bitterness were fueling the feedback loop that was triggering my disease. Once I was able to put the mental, physical, emotional and spiritual pieces together, I managed to gain control of my “incurable CRPS”, changing my life for the better.

Follow Aubrey’s blog, “Fighting With Flarefightingwithflare.blogspot.com to read more about her adventures with CRPS, healthy lifestyle and life as a wife and mother of four daughters.

Please consider making a donation to RSDSA today!

Workers Compensation 101: An Overview of WC for Employees With Work-related CRPS

Written by R. Steven Shisler, Esq. for the RSDSA blog

Workers’ compensation (WC) laws generally vary from state to state. As I am admitted to practice law in Pennsylvania, this article only will address WC issues in accordance with Pennsylvania law. Explanations of the law and recommended strategies are not applicable to those whose claims fall outside of the Pennsylvania Workers’ Compensation Act (PWCA). Also, because strategy and professional judgment are fact specific and may vary among claims, this article is written for your general knowledge only.

Lastly, if you are seriously injured at work, and especially if this results in CRPS, I strongly suggest that you retain an attorney as soon as possible after the injury. It is simply too dangerous to pursue your claim without counsel. Regardless of your relationship with your supervisor and the company, remember that your employer’s insurance carrier controls the WC benefits and is most concerned about paying as little as possible. The attorney you retain must represent claimants (employees) in WC matters and also should have some knowledge of CRPS.

Justice

In my first year of law school, my contracts professor “set up” a fellow student. Proper application of the law in accordance with the facts of the case resulted in a horrendous and unjust ruling. When the professor asked how the student felt about the Court’s conclusion, she said she understood that this was a proper application of the law; but the result was unfair. The professor nearly went berserk. He shouted, “Fair? Young lady, the law is the law and justice is justice; and if you want justice, go across the street!” and he pointed toward the divinity school where future priests were taught.

I usually tell this story to new clients, and I advise them that I cannot obtain justice for them; my job is to maximize their recovery (benefits) within the boundaries established by the law. It is nothing more than a high-stakes chess game.

Benefits

In order to establish a right to compensation under the PWCA, you must be employed and have been injured at work in a work-related accident. You do not have to prove your employer negligent, only that you sustained a work-related injury.

Benefits consist of earnings loss benefits for total or partial disability, medical benefits, specific loss benefits, death benefits, and illegally employed minors’ benefits, and may include an award of interest, costs, and attorneys fees to be assessed against the employer for unreasonable contest of the claim.

A compensable injury under the PWCA must leave you disabled (an inability or limited ability to work) leading to a loss of earning power, which is determined by your average weekly wage at the time of injury. You are entitled to 66.6% of your lost earning power, with a specific top and bottom compensation rate.Most WC claimants who suffer work-related CRPS have difficulty understanding the limitations of WC benefits. They have heard of large settlements in other types of cases and believe that their extreme pain and suffering should account for a high settlement. However, the PWCA does not provide for, nor are you entitled to, compensation for pain and suffering. It doesn’t matter whether you had a great future and you can no longer do your former job. If you can work at any job, even one not available at your former workplace, and if you can earn the same weekly wage, you are no longer entitled to WC earnings loss benefits. This means that if you have CRPS in all four limbs but can do any job within your usual employment area (generally within 30 miles from your home) such as testing chewing gum or mattresses in your home, you are not totally disabled. If these other jobs pay the same as your pre-injury wage, you can lose your benefits.

Pain and suffering is recoverable in negligence cases, but not in WC matters. Moreover, the PWCA is the sole remedy you have. This means that even if your employer or a co-worker caused your injury through negligence, the company, its workers, and even the company’s WC insurance carrier are immune from a negligence lawsuit. However, if your employer or its insurance carrier violates the PWCA, your attorney should file a Penalties Petition. The employer may be assessed penalties in addition to any unpaid compensation (up to 50% of unpaid, overdue, or illegally suspended compensation; statutory interest and/or attorneys’ fees for unreasonable contest).

You are entitled to be paid for reasonable and necessary diagnosis and treatment. The question is: “What is reasonable and necessary?” If you seek medical treatment far away, and the same type of physician, e.g. neurologist, pain management physician, is practicing within a reasonable distance from home, the insurance carrier is not required to pay for the longer-distance treatment. Moreover, if you have CRPS and you can travel a distance for treatment, it will likely harm your case. The argument can be made that if you can sit for the length of time required to travel, then you can do work that is sedentary and has limited use of your hands, such as answering telephones using a headset.

The insurance carrier will likely deny payment for any treatment that may be even slightly unusual, such as a ketamine drip or acupuncture. In some cases, such as surgery for the implantation of a morphine pump or spinal cord simulator, the hospital may require pre-certification approval by the WC insurance carrier. The carriers often deny pre-certification. Additionally, if your CRPS has spread, the insurance carrier may deny the claim as being unrelated to the original work injury. Finally; because of the bad press on OxyContin®, I have noticed that insurance carriers are often refusing to pay for the drug. In the meantime, as medication and payment for treatments are denied, the patient’s CRPS and pain become aggravated and often spreads and the injured employee becomes frustrated and lost. The insurance carrier may take advantage of this denial to influence your settlement decision.

Finally, you may be entitled to benefits for the specific loss of the use of a limb. This can mean actual amputation, or simply the inability to use that limb. For example, if you had four fingers amputated by a snow thrower and those fingers have been reattached but are unusable, you may be entitled to benefits for specific loss of those fingers or even the hand. The benefit amount and payment for an appropriate healing are set forth in the PWCA.

The Petitions

WC issues are not decided by a jury but by a WC judge employed by the Commonwealth of Pennsylvania Department of Labor and Industry. The claim may never reach a judge. The employer files a Report of Occupational Injury with the Department of Labor and Industry, Bureau of Workers’ Compensation after being notified of the injury. It is imperative to report your work-related injury to your employer immediately following the injury. Failure to do so may result in your claim beingpermanently barred. No compensation is paid the first seven days, but if disability lasts at least 14 days you are entitled to WC earnings loss benefits, retroactive to the date disability began. Your employer then has 21 days after receiving notice of the disability to pay WC earnings loss benefits. If the employer hasn’t paid, file a Claim Petition for compensation benefits and a Penalties Petition seeking penalties, interest, cost, and attorney’s fees, with the Bureau of Workers Compensation.

Many CRPS sufferers continue to work despite their pain and the detriment to their health and their claim because of financial concerns. If you cannot work without pain, you and your physician should strongly consider whether you arc able to work.

After a Petition is filed, there will be a number of court appearances, some of which will involve only the attorneys. The burden of proof is on you to prove that you have suffered a work-related injury and that you are disabled and can’t return to work. This is done with your testimony as well as that of your physician and other witnesses.

Often, you may feel that your attorney is doing nothing and that an unreasonable period has passed without any benefits being paid. Unfortunately, this is the nature of the system. Schedules-the judge, attorneys, and physicians-play a large part in the time involved.

After the taking of evidence, the judge will issue a briefing schedule, giving your attorney several months in which to write his brief, which is akin to a written closing argument. Then the defense will have the same amount of time to write a responsive brief. After the briefs are filed, the judge’s workload determines when an opinion is issued.

Unfortunately; there is little you can do to expedite this process. Your attorney can object to any time extensions requested by the defense and request that the judge limit the time for submission of evidence or briefs. The judge decides whether to do so or not. As a last resort, if you have been denied benefits, you may have to turn to public assistance, or welfare, for survival monies and medical assistance while your claim is in process.

As in all injury cases, the defense takes advantage of the delays inherent in the system to manipulate you. Your employer may attempt to force you to accept a lower settlement. Remember, your employer has no incentive to settle until the case reaches a point where all of the evidence is admitted, and the insurance carrier feels there may be a high risk of losing the case. The law does not force either side to settle the case.

Settlement amounts in WC cases are generally low, since they are based wholly upon negotiations regarding how long you will be disabled and whether you will be totally or partially disabled. Additionally, the PWCA caps the length of time you may collect WC benefits for partial disability.

Your employer is also entitled to insist on a complete settlement of the claim, including future medical benefits. If you have CRPS, you should be very cautious about any such settlement, and agree to it only if you have no choice.

After negotiations are final, your attorney will file a Petition to Seek Approval of a Compromise and Release Agreement. At the hearing, you will be questioned by your attorney; the judge, and/or defense counsel to make sure you understand the ramifications of settlement. In the event that any of your medical bills for work-related injuries have been or may in the future be paid by Medicare, you must make arrangements with Medicare to reimburse them for past and future bills from your settlement.

As mentioned previously, you are entitled to payment of reasonable and necessary medical bills for diagnosis and treatment. If you are denied medical treatment or your bills aren’t being paid, respond promptly. If you have medical insurance coverage and have been denied by the WC insurance carrier, your attorney must direct your healthcare providers to submit the bill or pre-certification request to your private insurance carrier.

In the case of an HMO, the primary care physician must first make the referral. In conjunction with the referrals and submissions, your attorney should tell your medical insurance carrier you have been denied by the WC insurance carrier and remind the medical insurance carrier that it is required to approve and/or pay for the treatment and seek subrogation, or recovery of the medical carrier’s payments, from the proceeds of the WC case.

Your attorney should also file an immediate Review Petition, asking the judge to review the medical issues and enter an Order regarding the denied medical treatment. Your attorney should also file a Penalties Petition referencing your aggravated CRPS, which may have occurred as a result of being denied medical treatment, and the increased stress and resultant threat to your health from denied medical care.

Your attorney should request a hearing on an emergency basis in the letter submitting the Petition to the Bureau of Workers’ Compensation for filing. Additionally, the attorney should write to the judge and request an emergency hearing on an expedited basis.

If your medical insurance carrier delays accepting the claim, you can threaten to sue for breach of contract and insurance bad faith. You can put pressure on both workers compensation and the medical insurance carriers by filing a complaint with the State Insurance Commissioner for violation of the Pennsylvania Unfair Insurance practices Act. However, this only leads to investigation and possible punishment by the State Insurance Commissioner and does not give you a private cause o action against the insurance company.

As a last resort, if you have been denied benefits, you may have to turn to public assistance, or welfare, for survival monies and medical assistance while your claim is in process. Public assistance will have a lien against any WC proceeds that you may ultimately obtain. You may also apply for Social Security Disability Benefits and/or supplemental Security Income; however these benefits are customarily denied and the appeal process may take a year or more. If you are receiving WC benefits, the amount of social security benefits will be reduced. Additionally; qualifying for Social Security Disability does not determine the right to we benefits, or vice versa, and receiving Social Security will likely be deemed inadmissible in the WC case; it certainly doesn’t hurt to attempt to have it admitted.

Suspension of Benefits

If you are receiving WC benefits, sooner or later your employer will me a petition to modify; suspend, or terminate your benefits. The process begins with the “independent medical examination.” Your employer can request that you undergo a medical examination by an employer chosen physician twice a year. In reality, there is no such thing as an independent medical examination; it is a defense medical examination by a physician who receives large sums of money from insurance carriers for conducting these exams, and who is likely biased toward the carrier Based on the restriction, or lack thereof, as determined by the physician, the carrier will have you submit to a vocational examination, after which a report will be issued indicating whether there are any jobs in your geographic area you can perform within the established limitations. Rest assured, the vocational expert, hired by the insurance carrier, will always find jobs you can do. The employer does not have to prove that the employee would be hired for any of these jobs.

Now the process for terminating your benefits begins. This must be countered with medical testimony contradicting the defense physician, you must testify regarding your limitation and perhaps there would be testimony from another vocational expert.

If you do not submit to the medical examination or the vocational interview; your employer’s carrier will me a petition to compel you to do so. After the examinations and reports are completed, your employer will file a petition to suspend, modify; or terminate benefits.

Liability Actions

Your attorney should leave no stone unturned in the search to determine whether an outside party, aside from you employer or a co-worker, also may be liable for your injuries and damages. This could include delivery people, a company contracted to clean and wax floors, the driver of another vehicle in a work-related car accident, or manufacturers, distributors, and vendors of defective machines. These related claims are not governed by WC law. If you are injured as a result of a negligent third-party, or manufacturer, distributor, and/or vendor of a defective machine, you are entitled to damages for pain and suffering, payment of all or a percentage of lost wages, depending on the type of case, and payment of all and/or a percentage of your medical bills. Additionally; your spouse may be entitled to recovery for loss of consortium, which includes society, services, and companionship. The WC carrier, any medical insurance carrier who paid for the accident -related injuries, and the Department of Public Assistance/Medicare, may have a lien against any third party recovery and must be repaid. Failure to do so may result in legal action against you, your attorney, or both. Additionally; any lien holders must deduct from their lien, at least a pro rata share of attorney’s fees and costs incurred in pursuing the liability claims and may be willing to negotiate additional reductions in the amounts they accept as payment in full of their liens.

R. Steven Shisler, Esq., is an attorney whose practice concentrates in plaintiffs’ personal injury, malpractice, and WC matters involving CRPS. He is an CRPS survivor, whose desire to become an attorney was motivated by his own injuries, including CRPS, resulting from an accident.

CPRS is a Game of Wack-a-Mole

Anastasio Head ShotI want to introduce you to Diane Simonson, a first-time walker in this year’s walk.

I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig’s Disease, and everything else under the sun. As many of us have experienced – doctors told me I was ‘faking’ it, and it was ‘all in my head.’ (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together as a team to support and monitor me to this day.

I made the decision early on to not have any procedures done – no spinal stints, no Ketamine therapy -nope. Just some medication. When I told my doctors I was going to walk again, some looked sad and said “We don’t know a lot about this illness”, or told me not to get my hopes up too high. One doctor told me that my time would be better spent learning how to cope with this change in my life. (Not an HSS doctor!)

It began in one leg, but soon spread to the other leg, both arms, and left ribcage. I could not bend my head forward enough to brush my own teeth. There was one point where I decided to ask to have both legs amputated. (Thank goodness I didn’t!) It took me three months to get my legs to bend so I could get into a wheelchair – probably the second most happy day of my life…to be pushed through the park – out in the green for the first time in months…I still get teary-eyed thinking about that.

Two to three hours of therapy every day on my own, and several years of PT visits twice a week. I moved to a rollator – yelped every time the wheels hit a bump…but I was upright! I didn’t care. Then to a cane! Two flare-ups set me back, but RSD chose the wrong person to mess with. November 2012, I walked outside without a cane. The happiest day in my life! Since then, I have only had to use the cane about three times a year.

Of course, this illness completely changed my life. Divorce, had to leave my job, sell my home. Still putting it all back together.

Currently, I manage my illness. It is a game of wack-a-mole. A flare-up in my hip for about a year before I found out it was RSD and not an injury from a fall off my shower seat – nipped that in the bud. I had a flare-up in my larynx; if I lean my arms on my desk without my pillow my lover arms flare up, blurred vision when stressed; I figured out that my index finger was swelling and in pain because I hit the elevator button and light switch with my finger tip (use the knuckle!) A lot of time trying to figure out why the pain is where it is and get it gone. I manage balance problems, proprioception issues, stairs; inclines…these problems vary from day to day and catch me off guard.

[Funny story: I went to see Nutcracker this past December and got a seat in the Mezzanine. The incline was so steep – with no hand-rail, I entertained the whole Mezzanine audience by sliding down the stairs to my seat on my butt – Terror-stricken the whole way! I found it amusing that here I was doing that when, years ago, I had danced more than my share of Nutcrackers!]

Yes, I can walk right now! I never believed in miracles, but I do now! I am so amazed and grateful (oops, and teary-eyed again) that I will actually WALK in the 2015 Achilles Walk for Hope & Possibility this year to support all my dear, dear friends who are also struggling with this illness every day. All of us can have a miracle.

I would love your support. Please sponsor me – OR BETTER YET: COME JOIN ME! How wonderful would that be if you were there! Join the Debbie’s Warriors group!

Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!

To support Diane, please make a donation to her page.

The Cynthia Penaskovic Memorial Fund

Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSD

Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer.

Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.”

Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need.”  Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.

Joan Penaskovic and Veronica Meyers, Cynthia’s mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would “serve as a lightning rod for CRPS/CRPS Research Only so that “no one would ever suffer the way I did.’  The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.

Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.

Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, “Do not let Cynthia’s suffering be in vain. It was her last wish to help drive funding for Research Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSDand with your help we can cure RSDS/CRPS. Donate now.”

  1. Everett Koop, former Surgeon General of the United States cautioned us that the treatments of today cannot be the treatments of tomorrow.” Consider that the National Institutes of Health only invests less than one percent of research dollars into pain research. It is up to us.

To donate to The Cynthia Penaskovic Memorial Fund, visit https://rsds.org/donate/ and give generously in Cynthia’s memory (make sure that you write in memory of Cynthia in the box on PayPal’s second page) or in the memo line of your check.  Thank you for your generosity.

New U.S. Clinical Trial of Neridronate

In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful.

Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations).

Four pharmaceutical companies are now considering clinical trials for CRPS in the United States.

The first out of the gates is Grunenthal, a Germany-based, family-owned company. The trial medication is neridronate, an amino-bisphosphonate. Attention mounted for neridronate after a startlingly successful small trial in Italy, which was was published in the journal Rheumatology at the turn of 2013. The Italian trial’s inclusion criteria were strict; individuals whose CRPS onset was greater than four months were excluded. The American trial inclusion criteria are not as strict, with the exception that individuals with CRPS Type 2 are excluded. (The diagnosis of CRPS Type 2 is made when specific nerve damage can be detected, whereas for Type 1 such damage is not evident.

Grunenthals’ recruitment for the neridronate trial started in early April 2015.

The bisphosphonate class of drugs has been used overseas to treat CRPS for years. Querying PubMed for bisphosphonates for CPRS will reveal a small trove of published research (more than 20 papers) dating back to 2002. (PubMed is a great website to bookmark to search the latest scientific research. Again, this search engine indexes published research, which may not prove fully accurate after deeper scientific investigation.)

Currently, two other pharmaceutical corporations are submitting plans to the FDA for clinical trials that will evaluate therapies for a CRPS indication. It’s an exciting time for all individuals affected by CRPS. Stay tuned!