Orthotic Intervention for Those without Physical Limitations: An Ethical Perspective
February 2014 Issue
John (name changed to protect his identity) presented at our clinic with a prescription for bilateral AFOs but had no physical indication for treatment. He suffers from xenomelia, a rare condition "characterized by a persistent desire to acquire a physical disability (e.g., amputation, paraplegia) since childhood.... [S]ufferers experience a chronic and dysphoric sense of inappropriateness regarding their being able-bodied."1
Controversy exists whether xenomelia is mind-based, brain-based, or a hybrid. While the disorder continues to gain attention in the fields of psychiatry, neuroscience, and bioethics, little has been reported in the O&P profession. In the case of amputation, prosthetists have a clear responsibility to provide an appropriate prosthesis without regard for the etiology. Whether to offer orthotic intervention to a person with xenomelia, however, is less straightforward but can generally be considered preventive treatment in that it may avoid the desire for a strictly elective amputation (which is considered in violation of the Hippocratic Oath and not legally performed) by helping the individual feel more comfortable with his or her limbs.
When he presented at our clinic, John's strength, range of motion, and gait were normal and completely unremarkable. He provided a brief description of his symptoms and explained that the discomfort in his legs is aggravated by walking or standing; the discomfort itself is more of a persistent annoyance, similar to tinnitus or a persistent ringing in one's ears. "I have to invest a lot of mental energy to use my legs," John explains. The symptoms fluctuate and often result in a string of "wheelchair days," when he feels he has no reasonable choice but to use his chair. For years, this left him as a bit of a recluse as he only recently began using his wheelchair in public.
John's symptoms date back to childhood and have led him to experiment with various orthoses: the Aspen LSO, carbon AFOs, and leather and stainless steel KAFOs. These devices provided varying relief for reasons that are not understood completely. The KAFOs provided the most support and best relief. "The KAFOs I have now take all the weight off my feet and transfer it to my pelvis," John says. The "strangeness" John says he experiences in his body starts around the L2 vertebra and travels distal, so this accounts for the experimentation with a spinal orthosis.
While each of the devices he tried fulfilled a need, each was obtained without consulting an orthotist face-to-face and did not necessarily utilize the best available technology. The stainless steel KAFOs weigh 24 pounds, and as John explains, "just make me feel like a freak of nature." He was always aware that he would be better suited with thermoplastic devices, however, xenomelia sufferers commonly fear a lack of acceptance from the mainstream medical community, and this prevented John from seeing an orthotist earlier.
We decided to mold and fabricate bilateral, solid ankle, copolymer AFOs with a full footplate, partially due to economic concerns regarding the cost of the alternative of custom-molded KAFOs. (Author's note: Since xenomelia was not included in the recently published Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, and is not recognized as a physical disorder, third-party reimbursement is not available.) We discussed orthotic goals and agreed that any additional time on his feet and out of his wheelchair would be considered successful.
Five months post-fitting, John reported the AFOs being a "big win," and that he spent "far more time on my feet (90 percent of the time) than in the chair." He commonly wears them in conjunction with wheelchair use, allowing him to maximize his time walking. Additionally, he feels his gait has improved with the devices. "It just feels a ton more natural and fluid to me."
The exact mechanism of orthotic assistance is unclear, but I propose two inclusive theories: The orthoses will (1) restrict motion thereby limiting a potential sensory feedback imbalance, and (2) provide hydrostatic compression, enhancing proprioception.
Regarding theory one, multiple papers have connected xenomelia with dysfunction of the right parietal lobe, which is responsible for the integration of sensory information. McGeoch et al. observed a statistically significant decrease in magnetoencephalography activity in the right superior parietal lobule after tactile stimulation below subjects' desired line of amputation.2 (Although John is amputation averse, individuals on the amputation spectrum commonly have a specific line below which their leg feels foreign.) The authors suggest, "sufferers would be able to see and feel a limb that nonetheless failed to incorporate into their body image."2
The second theory stems from anecdotal evidence from John's experience and research with compression garments. As a child, John found relief by layering six or more pairs of socks and later through experimentation with prefabricated devices. Additionally, research by Kraemer et al. discovered increased hip joint proprioception with compression garments worn by athletes,3 the thought being that proprioception could be enhanced by tactile interactions between the skin and compression garment. By analogy, an AFO might also enhance proprioception through tactile interactions between the skin and device, helping to incorporate the limb into his or her body image and thereby potentially minimizing a sensory feedback imbalance.
Matt Wegmann is a board-eligible orthotist and future prosthetic resident at Tillges Certified Orthotic Prosthetic, Maplewood, Minnesota. He completed his American Board for Certification in Orthotics, Proshtetics & Pedorthics (ABC) residency in July 2013 at Metropolitan Orthotic Laboratory, Minneapolis, Minnesota. He can be reached at
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- First, M. B., and C. E. Fisher. 2012. Body integrity identity disorder: The persistent desire to acquire a physical disability. Psychopathology 45 (1):3-14.
- McGeoch, P. D., D. Brang, T. Song., R. R. Lee, M. Huang, and V. W. Ramachandran. 2011. Xenomelia: A new right parietal lobe syndrome. Journal of Neurology, Neurosurgery, and Psychiatry 82 (12):1314-19.
- Kraemer, W. J., J. A. Bush, R. U. Newton, N. D. Duncan, J. S. Volek, C. R. Denegar, et al. 1998. Influence of a Compression Garment on Repetitive Power Output Production Before and After Different Types of Muscle Fatigue. Sports Medicine, Training and Rehabilitation 8 (2):163-84.