Phantom Pain in Amputees
Phantom limb pain is the occurrence of sensations in amputees, characterized by pain, that feel like they are coming from the now missing body part. While phantom pain is reported in some who have had body parts like organs, teeth, or breasts removed, the sensory phenomenon is most common in those who experience limb loss.
For some amputees, phantom limb pain gets better with time, but for others, managing phantom limb pain can be a constant challenge and can lead to grief, lack of sleep, and other impediments to living a normal life. Nearly 80 percent of amputees experience phantom limb pain at some point in their lives.
Symptoms of Phantom Limb Pain
According to studies, the vast majority of patients experience phantom limb sensations immediately after amputation while a minority start to experience it a few weeks after the operation.
In general, amputees report many different sensations associated with the missing limb with varying degrees of pain. Phantom limb sensations, not to be confused with phantom limb pain necessarily, may include pressure, itchiness, tingling, coldness, warmth, and, of course, pain.
Symptoms of phantom pain, specifically, include a shooting, stabbing, throbbing, or burning feeling that often seems to be coming from the furthest part of the missing limb, meaning the foot, toes, hand, or fingers.
Causes of Phantom Pain
In the past, doctors and medical scientists believed phantom limb pain was a purely psychological problem, but over time, evidence proved that phantom sensations are the product of mixed signals from the brain and spinal chord to the missing limb.
Thanks to brain scans, when an amputee feels phantom pain, areas of the brain that were neurologically connected to the amputated limb show increased activity. More specifically, the brain is sending pain signals to the phantom limb.
As to why some amputees experience phantom pain and others don’t, there is still no definite reason. Despite not knowing this, however, it’s now believed by most experts in the medical field that some factors can increase the risk of phantom limb pain, including limb pain before amputation, stump pain due to damaged nerve endings, and a poor-fitting prosthetic limb.
Treating Phantom Limb Pain
The first thing any person suffering from phantom pain should do is to get in touch with a doctor to schedule an appointment. Also making detailed notes of your symptoms like when they occur, what triggers them, and how long they last can help your doctor more accurately create a treatment plan.
Although no specific medications exists for phantom limb pain, there are numerous other drugs out there that can be used to alleviate the pain, including anti-inflammatories, anti-depressants, anti-convulsants, beta-blockers, and muscle relaxers. Opioids may be prescribed but are not often effective and are highly addictive.
If medications alone don’t provide enough relief, other more invasive operations might do the trick. Popular treatments include injections, brain stimulation, stump revision, and spinal chord stimulation.
Another recent development being used to treat phantom pain is Vibrating Therapeutic Apparel created by Amira Idris, a graduate from University of Delaware. Put simply, the device works by placing a sleeve where the phantom pain is occurring. The vibrating nodes of the sleeve will then stimulate the area and reduce pain.
Managing Phantom Pain
While phantom limb pain is a reality of life for many amputees, taking steps to manage and prevent the pain can go a long way.
The best non-medical steps to manage phantom pain are to avoid phantom pain triggers and to make lifestyle adjustments.
Instead of solely going the medical route, it is important for those suffering from phantom pain to also try to incorporate alternative therapies that may help alleviate symptoms. Some options for this include acupuncture, massages, propping up the residual limb, electric nerve stimulation, and mirror box therapy.
Another great way to manage phantom limb pain is by making lifestyle changes like staying physically active, finding ways to relax, and by seeking out support from family, friends, and other amputees who have experienced phantom limb pain.
Amputee Support Groups prove mutually beneficial for both the amputee and the prosthetist.
Unless affected by an ailment at birth or ongoing health issues, no one anticipates having to experience a prosthetic limb. Dealing with unexpected limb loss is often traumatic. But with a positive attitude and a fantastic care team, one can thrive with the help of the right prosthesis.
Armed with a desire to help the less fortunate in her community, and a lifelong love for animals, Christie Rogero’s employment with a not-for-profit spay/neuter clinic proved the perfect fit for her. Finding her niche allowed Christie a coveted daily interaction with cats and dogs, while granting her the privilege of providing pet health care to those in her community who were unable to afford the expense of essential veterinary services. For Christie, life was going well.
Pedestrian Struck on Sidewalk at 4th and Arch in Philadelphia
In April 2008, however, while walking the short distance between her employer’s office and a nearby animal shelter, tragedy struck. Christie was hit by an automobile that was pushed by another car onto the pedestrian sidewalk where she was walking. The result was severe damage to both of her legs.
After almost a year of rehabilitation, Christie’s right leg was again strong and functional, albeit painful to use. It was clear to Christie’s doctors, however, that the condition of her left leg was such that she would never be able to fully use it to walk. Faced with living life on crutches and/or in a wheelchair, Christie was presented with the option of amputating her left leg, and being fitted with a lower extremity prosthesis. A prosthesis, she was advised, would most closely return her to the life and level of physical activity that she enjoyed prior to her accident.
“Where Do I Go From Here?”
In an effort to better understand both the challenges and possibilities of living with a prosthetic limb, Christie joined a support group for amputees at the rehabilitation hospital where she had been in physical therapy. At this support group, Christie met Cortney Oswald, a certified prosthetist with Prosthetic Orthotic Solutions International, or simply POSI. Cortney regularly participates with a variety of amputee support groups in the greater Philadelphia area, and her involvement with these groups has proven a mutually beneficial arrangement for both the amputee and the prosthetist. For the amputee, having an experienced and knowledgeable prosthetist with which to communicate has proven an indispensable resource not only for the affected individual, but also for family and friends of the amputee. For Cortney, the insights gained from her candid conversations with amputees has enabled her to become a more effective prosthetist.
After encountering Cortney at her support group, Christie came away impressed by Cortney’s winsome combination of compassion for the amputee coupled with her knowledge of prosthetics. Anxious to learn more, Christie came to POSI to consult one-on-one with Cortney. At POSI, Christie was welcomed with a genuine kindness and understanding by all the POSI staff that she encountered. She recalls that she was given all the time that she needed to have her concerns and questions about prosthetics addressed, and was never made to feel hurried or pressured. She felt as if she was Cortney’s only priority.
Christie knew that she needed to be able to walk in order to continue the work that she loved. This awareness, paired with the peace of mind she derived from her consultations with doctors, therapists, other amputees, and Cortney, made Christie’s ultimate decision to amputate her left leg the obvious choice for her. In March 2009, almost a full year after her accident, Christie’s left leg was amputated.
As soon as was possible following her surgery, Christie resumed physical therapy, and was fitted by Cortney with her first prosthesis. As is common among new amputees, Christie experienced pain in the first one to two months of walking on her new prosthesis, as her leg progressed through the post-surgery healing process. As the weeks passed, though, with the residual pain at her surgical site subsiding and her strength increasing, Christie found that she acclimated well to her prosthetic limb.
Lower Extremity Prosthesis Proves Less Difficult Than Injury
Today, Christie is able with her prosthetic leg to do the things and live the life that she enjoyed prior to her accident, including her work with a mobile veterinary clinic. Interestingly, the only physical limitations that she experiences currently are the result of her non-amputated right leg. The accident caused bone breaks in her right leg, and while the leg healed adequately, it can still be stiff and painful to move. In the course of her work, Christie’s right leg restrains her from running as fast as she could in pursuit of wayward cats and dogs, and limits her in handling large or strong canine breeds.
Christie notes that whenever she has been presented with tasks that are challenging for her to accomplish because of having a lower extremity prosthesis, POSI has consistently modified or updated her devices to accommodate her needs. For example, when Christie was having difficulty kneeling to work in her garden, POSI was able to add a rotator to her prosthesis that allowed her artificial foot to move, thus making it possible to kneel.
Looking back on the life changing events of 2008 and 2009, Christie feels that she has accepted life with a prosthetic limb as well as could be expected of anyone faced with a traumatic injury, and the subsequent reality of living with the loss of a limb. She concedes that she still has moments of shock when she looks down and sees either metal or nothing in the place where her leg should be. However now, almost seven years since her amputation surgery, she has a positive attitude about it all. Christie has found that exuding a sense of acceptance and normalcy regarding her prosthetic has opened doors to allow friends and strangers alike to not only feel comfortable around her, but to also ask questions about her experience of living with an artificial limb.
Through it all, Christie is delighted that POSI has been a reliable constant for her. She states that the POSI team creates an easy-going, friendly atmosphere while demonstrating the professionalism, knowledge, and skill that drew her to POSI in the beginning. The result is that office visits to POSI are fun rather than a chore. “POSI puts the client at ease while instilling confidence in their ability to provide the best of care.” Christie admits to being a bit of a cheerleader for POSI, in that she confesses to giving her unsolicited opinion and recommendation of POSI to any amputee that she encounters.
Life After Limb Loss
Despite the hardships created by the sudden trauma of her accident, Christie Rogero has faced her challenges head-on, and in the end, has excelled. She is proof that a full and productive life can be had following the loss of a limb. Christie today is thankful for the life that she has, and is grateful for her caring POSI family that continues to make it possible to do the things that she loves.
POSI is proud to provide our patients with a list of area and interest-specific amputee support groups. If you or a loved one is facing an amputation, please contact POSI today for a consulation! Courtney, or any of the knowledgeable staff here at Prosthetic Solutions, would be happy to help you through the decision-making process and hook you up with a support group in your area.
Admittedly, the world of prosthetic limbs and devices is foreign to most people. Unless someone is personally affected by the loss of a limb, or is connected with someone who is an amputee, it can be hard to understand the physical, mental, and emotional challenges that a new amputee faces. These challenges are amplified when the individual in question is an active and athletic 13-year-old boy.In 2011, Jason Garstkiewicz of New Jersey was energetically involved in both individual and team sports. An enthusiastic surfer and an engaged member of local basketball, football, and lacrosse teams, athletics was a big part of young Jason’s life. Following one fateful basketball practice, Jason began to experience severe pain in his right ankle. Initial assumptions that Jason had suffered a hairline bone fracture were eventually supplanted by the confirmation that a malignant tumor at his ankle was the source of his pain.
Although doctors could have removed the cancerous tumor, and performed reconstructive surgery on Jason’s ankle, the repairs would have permanently fused his ankle. A fused ankle would eliminate any range of motion at the joint, effectively halting Jason’s ability to play the sports that he loved. Further, the option of tumor removal also presented the real possibility of subsequent infection, which if unresponsive to treatment, could eventually necessitate amputation.
The alternate treatment option presented to Jason and his family was that of upfront amputation. Removing Jason’s right leg several inches below the knee would allow for “clean margins” with respect to removing the cancer, and in conjunction with chemotherapy, presented the best possibility that Jason would be cancer-free.
Often, the circumstances associated with the loss of a limb, such as an accident or injury, occur without forewarning. Consequently, the sense of urgency in deciding to amputate in order to save or extend a life can overshadow the post-surgery impact on the amputee’s daily life. The Garstkiewicz’s were fortunate in the sense that they had a window of time to make the best treatment choice for Jason. Although complete eradication of the cancer was the family’s top priority, quality of life considerations after the cancer was removed played a major role in the treatment choice that Jason would ultimately select.
A Life-Changing Decision
As part of the decision process, Jason came to Prosthetic Orthotic Solutions International (or POSI) to educate himself about prosthetics, and to learn about the range of available devices that would allow a still-growing young man to maintain his active lifestyle. Board Certified Prosthetist Kevin Towers took Jason under his wing on that first visit, displaying the compassion, knowledge, and technical skill that only years of designing, fitting, and constructing prosthetics could give. Jason recalls being impressed by the range of prosthetic options available that would allow him to continue his athletic pursuits. He was further pleased to learn that his made-to-measure prosthetic devices would be constructed in-house and on-site by Kevin and the POSI team, simplifying any modifications and adjustments to his finished device.
The advance visit to POSI and consultation with Kevin gave Jason a peace of mind about the decision that had to be made. So, shortly after his thirteenth birthday, and armed with information from surgeons, oncologists, physical therapists, and POSI, Jason alone made the decision to proceed with the amputation of his right leg below the knee. Jason’s mother Pam recalls being so proud of her son; the strength and confidence he displayed revealed a maturity that was beyond his years.
Jason’s surgery was on March 7, 2012. Despite the physical weakness and exhaustion that his required chemotherapy produced, Jason resolutely soldiered through the intensive physical therapy that followed his amputation surgery. Kevin and the POSI team fabricated Jason’s first prosthetic leg, tailoring a liner and socket to maximize fit and comfort. Four weeks following his surgery, Jason was walking and hitting a golf ball. By August 2012, Jason had returned to playing team sports.
A Proshtetic Limb, A Stronger Jason
As of this writing, Jason is four years on from his experience with cancer and the resulting amputation of his right leg. Now seventeen, Jason presents as both an average teenager, and a remarkable individual. More than just a cancer survivor, Jason has thrived. He concedes that adapting to life with an artificial limb did slow him down initially, but it also made him doubly determined. In time, his persistence paid off. Today, Jason is equal to his peers on the playing field, and believes his athletic abilities to be as good as before his surgery. He still leads with his right leg when surfing, and pushes-off with his right leg when playing basketball, as he did naturally prior to its amputation.
Jason states that he has become so accustomed to using his prosthesis that he “doesn’t really remember what is felt like to have two feet.” Case in point is his recent DMV driving test. Without the aid of hand controls for the accelerator and brake, Jason was able to proficiently and safely demonstrate to the examiner that he could control a vehicle’s speed using his right leg prosthesis. An equal to other teens, Jason not only has his driver’s license, but can drive any standard vehicle, as he requires no specialized vehicle modifications.
Challenges Unique to a Growing Boy
To ensure continued comfort, fit, functionality, and performance as Jason’s leg grew and his weight increased, POSI has regularly updated sockets and devices for him as he has progressed through his adolescent years. Jason’s Prosthetist, Kevin Towers, explains, “The human body is always changing and active amputees require frequent adjustments and replacement prostheses to maintain fit. Maintaining an appropriate socket fit is important to prevent skin breakdown and for efficient transfer of energy through the body to the prosthesis. Growing children add an additional variable to the naturally occurring change and require more frequent follow-ups and componentry replacements. Residual limb shape and size changes more rapidly. Additionally, since componentry selection is based on weight and activity level, components require more frequent replacement with growth related changes.”
In addition to his daily-use prosthesis, Jason also has an alternative blade prosthetic for running. As it does not incorporate a heel is its design, a blade prosthetic facilitates the speed and balance required for running. “Because it is not currently possible for a prosthesis to replace all functions of the human body, an active amputee who participates in multiple sports may have multiple prostheses. This enables the amputee to be most efficient in that given activity,” Towers states.
Looking back over the past four years, Jason has no regrets about the choice he made to amputate, nor about his choice to come to POSI. From his initial consultation with Kevin, to his first prosthesis following surgery, through subsequent prosthesis to accommodate his growth, and up to day, Jason couldn’t be happier with his experience at POSI. To him, the POSI staff are like family. It takes a special group of people to model the compassion and professionalism demonstrated by the POSI staff each day, and the Garstkiewicz family feels lucky to have been connected with POSI from day one.
Life After An Amputation
Through POSI, Jason’s parents have met and networked with other parents of children with prosthetic devices, enabling mutual support for and discussion of the unique challenges these families can face. Jason, too, has even had the opportunity to help a young man not unlike himself to see that there is definitely life and hope after an amputation.
In conclusion Jason and his family want others to know that the loss of a limb does not have to mean there is a loss in the quality of one’s life. If you or a loved one is facing a similar, life-changing decision, contact Prosthetic Solutions for a consultation. A diagnosis that includes amputation can be tough, but there is light and life at the other end of the journey.
Experts have a wealth of information when facing decisions about amputee and artificial limb care, but hearing from real prosthetics patients about their personal experiences may prove even more helpful. Jean, a long-time patient of POSI, had an above the knee amputation following a motorcyle accident in 2005. She sustained multiple injuries including nerve damage, collapsed lungs, broken jaw, a severely damaged leg, and shattered pelvic bone. Kevin Towers is her prosthetist. We’ll let her tell her story.
“I was thrown from my bike and run over by three other bikes. My left leg was pretty much gone at the scene. I was taken, by helicopter, to Albany Medical Center where they proceeded to save my life!
I coded five different times. My left arm was severely injured. I broke several ribs and my lungs collapsed. My liver was lacerated. I broke three bones in my lower back and two bones in my neck. My face was egg shelled. My jaw was broken. I am now legally blind in my right eye because of nerve damage. My pelvis was shattered and they could not do surgery to fix it due to my condition, so I had an external fixator for three months to help it heal.
The pelvis fracture is why my prosthetic situation is so unique. My pelvis healed separated, so one side is lower than the other. I also have a piece of bone that healed in a downward, crooked position and needs to be captured correctly in order for me to walk without a crooked gait.
I was using a local prosthetist who works for a well-known company. I was happy at the time because I didn’t know someone could do better. One day an associate from rehab met me in the parking lot and told me about a new prosthetist she was using (Kevin Towers at POSI). I asked my therapist about him and she knew he was well respected and did good work.
When my physiatrist told me I was due for a new socket, I decided to go for a consult. Seeing Kevin would take me about 2.5 hours round trip. The distance made me a little hesitant.
Once I met Kevin and had my consult, I was convinced it was worth the trip! Kevin was very nice and convinced me he could help. He was willing to cast me and see what he could do even before I committed. I liked their offices because they did all the work there. My old prosthetist had to send everything out to be made.
Kevin and I met several times and we made three test sockets before going to the permanent one. I immediately noticed a difference in my walk. And what a difference in my look! My old socket made me look like my left hip protruded out and now I looked even on both sides! My gait changed immediately. I proceeded to have rehab.
My life has changed! I am not saying that we didn’t have bumps in the road, but Kevin does not stop until he gets it right. He takes all my questions and thoughts into consideration and we make changes accordingly. I feel like we work as a team instead of someone making all the decisions for me. The personal touch I receive at POSI is so nice to have! I never feel rushed and always feel like I am a part of all the decision making for my leg.”
Prosthetic Orthotic Solutions International (POSI) was founded in 2000 by Kevin Towers, CPO; Jim Alaimo, CPO; Benjamin Harder, CP; Kevin Barnes, CP; and Edward Wisniewski, CP to share their knowledge and expertise of prosthetics and artificial limb development for those in need of these devices.
The POSI team uses the latest developments in technology and devices to further assist their patients, such as the BiOM feet and Genium Microprocessor Knees. They are set apart from clinics using similar next-generation devices by their personal connection with their patients.
One patient traveled cross-country from Montana to New Jersey to receive two new arms. A wounded warrior couldn’t get the attention he needed at Tripler Medical Center in Hawaii so he flew to New Jersey to get it from POSI. Many others, previously feeling “lost in the shuffle,” found the staff at POSI truly listened to their problems and concerns. The message from these patients is basically the same, “I never received this level of personal attention anywhere else.”
With over 100 years of collective experience in the artificial limb and prosthetic development and counseling industry, the POSI staff is truly devoted to helping their patients achieve their mobility goals and enrich their lives. With two full-service facilities in NJ and PA easily accessible from the Philadelphia Int’l Airport, theirs truly is an International medical facility.
Since the release of The Kingsman: The Secret Service many people are curious, if not a little enamored by “Gazelle, the world’s deadliest sidekick,” who some have called “The coolest movie villain of the year, so far.”
Of course this is a movie and Gazelle is a fictional character, but so many of our young men and women come back from Iraq and Afghanistan in need of prosthetic limbs to resume a normal life. Realistically, 99 percent of us would never need any of the James Bond-esque additions to Gazelle’s prosthetics, but the great action scenes and the unequalled athleticism of an individual with prosthetic devices leaves some of us wondering: what are the real capabilities of these devices?
The experts at Prosthetic Orthotic Solutions International, or POSI, weigh in with answers to these and other questions in this June 17th interview.
Question: Besides the Veterans Administration, where would someone go for advice and counseling regarding prosthetics?
Kevin Towers: We provide on-site counseling to a patient when they are in the hospital or in a rehab facility, as well as counseling in our office. Additionally, there are many state sponsored rehabilitation and counseling programs. There is a wide variety of services available through the Affordable Care Act (ACA), websites, and peer-to-peer.
Question: Could you tell us what is available to the public? How expensive are prosthetic devices?
Kevin Towers: All prosthetic components, techniques, and suspensions are available to the public. Medicare is typically the standard that insurances base their payment policies on. Depending on your insurance or funding sources, choices can be limited. However, they can pick and choose what they want to follow as far as guidance and coverage. There are some beta testing opportunities to experience new technologies as they are being developed. As products publicly become available they are typically covered by some private workman’s comp or networks. However, the public usually will be able to use these products once they get code assignments by Medicare.
Question: Are prosthetics affordable to the average person?
Kevin Towers: The prices can vary greatly depending on the patient’s amputation and functional level, anywhere from $15-20,000 for a Trans-tibial Prosthesis (below the knee) to $40-50,000 for microprocessors (provides multi‑directional movement). Depending on the services, some prosthetics can cost as much as $150,000. However, even without adequate insurance, there are many funding sources such as state services, gratis work, and some personal sponsors. We quite often get involved in helping our patients find alternative funding sources and assist with insurance forms and authorization.
Question: What are the latest developments in prosthetics?
Kevin Towers: There are many developments ongoing, which you can read about on the technology page of our website, http://prostheticsolutions.com/category/technology. From our perspective, manufacturers develop most of what we use, with the exception of the sockets. That is the area where we spend the most time and effort for our clients.
Question: Could you tell us how the 3D Printing Technology is used?
Kevin Barnes: Although the area of 3D printing is rapidly maturing, we do not use it yet, per se. As Kevin Towers mentioned, the manufacturer pre-packages most of what we use. Our focus is the socket. With that being said, 3D printing is being used in the area of covers for feet, legs, and arms and activity-specific functions.
Question: What are the specific functions of the Genium Knee and how is different from other devices?
Ed Wisniewski: The main difference between the Genium Knee and other microprocessor knee units is the Genium looks at more data parameters then other knees. It makes more decisions on behalf of the patient based on more information, which ultimately aids them in their Activities for Daily Living (ADL). Additionally, the Genium Microprocessor Knee literally takes the thinking out of leg actions and makes climbing stairs a natural activity. It is no longer necessary to swing the leg out and up to climb stairs. It’s really amazing.
Question: What is special about the BiOM Foot?
Kevin Towers: The BiOM Foot is unique because it was the first foot on the market that can actually power the amputee using motorized plantarflexion that occurs during the gait cycle at a specific time. It is a replacement for the gastrocnemius and soleus muscles.
Question: Are you working on anything that replicates the BiOM foot for elbow and wrist actions, or does such a device already exist?
Kevin Barnes: Deka and Defense Advanced Research Projects Agency DARPA have some very sophisticated designs that have powered upper limb mechanisms similar to the BiOM technology. Some of this technology has already trickled down as pattern recognition systems and Radio-frequency Identification RFID, which is available now in upper limb prosthetics.
Question: How are prosthetic limbs attached and do their users wear them all the time? What about showering? Are these devices waterproof?
Kevin Towers: There are many different suspension methods utilized to attach prosthetics to the amputee. There are suction, vacuum, pin, lanyard, anatomical or strap systems. However, socket interface has advanced dramatically utilizing suction and vacuum suspension increasing the users’ abilities to wear the prosthetics comfortably. It largely depends on the electronics involved with the device whether or not it is waterproof. Many trans-tibial devices are waterproof. The life expectancy of most devices is three to five years, whereas the socket life expectancy is only 12-18 months. Most insurance companies know this and allow for timely fittings and replacements, but do not typically pay for a second device for showering.
Question: Why would a patient choose POSI?
Kevin Towers: I’ll let our clients/patients answer that question for you. Many have expressed feelings of being “lost in the shuffle,” with the many challenges of unsuccessful fittings or prosthetics with awkward fittings. Many clinics focus more on money than patient satisfaction, unlike POSI. We put our patients first.
POSI’s collection of prosthetists bring over 100 years of experience to the artificial limb and prosthetic development and counseling industry to help their patients achieve their mobility goals and enrich their lives. If you’re tired of being lost in the suffle, we invite you to contact our knowledgeable staff for a consultation. Let us show you the POSI difference.
POSI is based in Marlton, New Jersey, but there is also a facility in Horsham, PA, either of which is about an hour’s drive from the Philadelphia International Airport. If you or a loved one are in need of prosthetic care, contact POSI today.
*(The BiOM Foot simulates the tendon function and missing muscle actions necessary for routine activities, as well as some athletic exercises. Read about these and many other new technologies available on their website.)
100 Brick Road, Suite 315
Marlton, NJ 08053
440 Horsham Road, Suite 2
Horsham, PA 19044