Phantom Pain and Ghost Limbs: Understanding and Managing Sensations After Limb and Organ Loss

Overview

Phantom pain is the sensation of pain in a limb or organ that is no longer present. This episode of Curious Cases brings together Lynn Williams, an upper‑limb amputee, and cognitive neuroscientist Tamar Maikken to unpack what phantom pain is, where it comes from, and how it is treated. The conversation covers patient experiences, brain representation of the body, and critical research that challenges the idea that the brain’s “body map” must rewire after amputation. It also discusses phantom organ pain, highlighting a kidney case and approaches beyond opioids, including cognitive therapy and imagery, neuromodulation, and surgical nerve strategies. The episode emphasizes listening to patients and pursuing credible, science‑based relief.

Introduction and Listener Inquiry

The episode opens with a lay question about phantom pain following organ or limb loss. It frames phantom sensations as a real, lived experience rather than a purely psychological issue and introduces two guests: Lynn Williams, an upper limb amputee with direct experience of persistent phantom pain, and Tamar Maikken, a cognitive neuroscientist who leads a plasticity lab at the MRC Cognition and Brain Sciences Unit, Cambridge.

"Pain is coming from outside your body but the body part is not there" - Tamar Maikken

What Is Phantom Pain?

Tamar Maikken explains phantom pain as a subjective experience where sensations such as pain can arise from a body part that is no longer present. The discussion covers how phantom sensations can be painful or itchy, and how common this is among amputees, with estimates around 64 percent as a cautious figure. Lynn Williams contributes her vivid description of her maintained phantom arm, detailing its fixed posture, persistent pain, and episodic spikes that feel like shocks along the phantom limb.

Phantom Limb Pain and Brain Representation

The hosts and guests discuss theories about phantom pain, focusing on the debate about maladaptive brain plasticity and whether the brain’s hand representation reassigns itself after loss. Maikken shares the pivotal finding from an early fMRI study showing that amputees and controls can have similar brain activity patterns for attempted movements of a phantom hand, challenging the idea that the brain’s map of the hand is ruthlessly remapped after amputation. The segment highlights how modern research indicates stability in brain representations rather than wholesale reorganization as a cause of phantom pain.

Phantom Organ Pain Case and Management

Carlos Roldan, a pain medicine expert from the University of Texas MD Anderson Cancer Center, discusses phantom organ pain, noting that although rarer than limb phantom pain, cases exist for kidneys and other organs. He emphasizes that management should be individualized and that cognitive therapy and anticonvulsants can reduce pain when opioids alone are insufficient. The kidney case illustrates the importance of ruling out other causes and adopting a multifaceted treatment approach.

Treatment Landscape and Outlook

The program reviews established therapies such as mirror therapy, which aims to realign brain representations but acknowledges mixed evidence from randomized trials. Karen Fisher describes imagery and mindfulness strategies used in pain psychology, teaching patients to visualize pain as a diminishing force, like a marching band receding from view. Lynn Williams shares her ongoing regimen, including Botox injections for neck and jaw regions, ketamine for pain relief, and medical cannabis to dampen associated burden. The conversation also touches on surgical nerve techniques designed to route severed nerves to muscles, giving nerves a functional target and potentially reducing ectopic signaling. The guests emphasize the need for credible evidence and ongoing research to refine treatment and improve quality of life for people with phantom pain.

Key Takeaways and Practical Messages

The episode closes with a reminder that phantom pain is common, deserves serious attention, and benefits from a combination of approaches tailored to the individual. The interviewees urge listeners to seek care from specialists and participate in research to advance understanding and therapies for phantom pain.