Ask the Doctor: A Ghost Arm

When Helena (a patient of mine) showed me her photo taken 2 years before, she seemed tall, slim, with beautiful dark eyes and a striking face, a real looker. But when she was referred to me by her physician, things had changed dramatically. Helena was a shadow of herself, bearing no resemblance to her photo. What I saw was a pale woman, dressed in black baggy pants, hair pulled back in a tight pony tail with a loose top and long hanging sleeves hiding her arms. She was teary eyed and deeply sad. Helena was suffering from terrible pain, both physical and emotional. Almost two years ago, a friend of hers was driving south on the 400 as they were going to meet friends in a posh downtown Toronto restaurant to celebrate Helena’s 30th birthday..

It was cold, snow had covered the roads and the driving conditions were not great. And something terrible happened. An 18 wheeler (a huge track) lost control while it was changing lanes and side swept the couple’s car on the passenger side, literally “shaving” that side of the car. Helena took the brunt of the impact on her right arm as she was leaning on the front passenger’s window. By the time ambulance, police and fire trucks came to the scene, Helena was bleeding profusely from her shattered and mangled up arm. Urgent surgery could not salvage the limb and Helena ended up with amputation just below the shoulder. Within minutes, her life shattered and changed forever.

Helena was devastated. Not only did she suffer with severe post traumatic stress reaction (an intense emotional response to a life threatening stimulus, associated with frightening dreams, flashbacks and immense fears), but she felt excruciating pain in her missing arm. While there was no arm she could see, she felt it always there, twisted, deformed with the fingers clawed in a tight fist. She described the pain as burning, lightning and at time freezing running through her fingers, while she felt the upper arm squeezed in a tight vice. She was suffering from serious “phantom limb” pain, a term we attribute to a pain in a ghost limb, a limb that has been amputated but is “still there”.

In my career I have seen many cases of “phantom limb pain”. It occurs in a large number of amputees . In different studies, 53 to 72% of patients who lose a limb because of poor blood supply or because of trauma, will continue to feel this ghost pain in the limb that is no longer there. The pain lasts for many years or indefinitely, though in some cases the missing body part is “just there” but does not hurt (in this case we simply call it “phantom limb sensation”). I have seen phantom pains not only after the loss of an arm or a leg, but also after the loss of an eye, breast, tooth or even the loss of food pipe (esophagus), the penis, the rectum or after surgery to remove cancerous growths.

The origin of phantom limb pain has puzzled scientists for a long time. Studies in both monkeys and humans have helped us understand that when the body’s shape gets altered, for example, by the loss of a limb, the brain map gets “re-organized”. All humans have a “body map” in a specific area of their brain that represents every body part (our eyes, lips, nose, hands, arms, legs, feet etc). Through special research methods (magnetoencephalography, functional imaging etc) which permit visualization of activity in the human brain, researchers have been able to show that this map is “reorganized” after loss of a limb or body part. The brain area of the missing limb stops receiving stimulation from the amputated body part, shrinks and is now “invaded” by neighboring areas (representing other body parts). Additionally, changes into the local nerves of the stump contribute to a constant barrage of abnormal discharges from these nerves, which feed into the already abnormal brain map.

So, how does one treat this type of pain? Medications, psychotherapy, alternative modalities (for example TENS, acupuncture) and even certain forms of surgery can help. A revolutionary way is the use of a “mirror box”, where the amputee places their good hand and moves it in front of a mirror, while the brain is cheated to believe it is the opposite (amputated) hand. In some cases amputees have been much helped by this method. With Helena, our approach was “wholistic”, that means we wanted to address ALL her pains, physical and emotional. Her serious post traumatic stress disorder was treated with intense physchotherapy and medications for her depression. For her pain we put her on a combination of special drugs for neuropathic pain and strong pain killers (opioids). As she started feeling better, we introduced her to a group of neuropathic pain patients which served both to provide support and education. After a year of therapy Helena felt better.

When finally she got a settlement from the car insurance, she was able to pay her debts, continue with supportive care and prepare herself to return to school! Helena had been a hairdresser for years. Now that she had one arm, she decided she could use more of her brain. She registered for a social work degree in a long distance university, so that she could become some day a counselor. When she came to see me for the last time she was preparing to move to BC to be closer to her family. She wore a well fabricated arm prosthesis (an artificial limb very , close to real flesh), had a glow in her face, her beautiful eyes were accented with gentle make up and she walked with confidence, reminding me of her picture the way she was just before the accident. “Go girl, go” I though as she gave me a big hug to thank me for helping her to put a new life together. “I have to thank you”, I said, “you really made my day”.

Angela Mailis Gagnon, MD, MSc, FRCPC(PhysMed) Director, Comprehensive Pain Program, Senior Investigator, Krembil Neuroscience Centre Toronto Western Hospital, Chair ACTION Ontario http://
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