Virtually all amputees will experience phantom pain at one time or another. Phantom pain is the perception of feeling in a missing limb and can include sensations of extreme pain, sharp, shooting or stabbing pain, throbbing, cramping, burning, and aching – basically any sensation in a limb as if it was still attached to the body. It is considered a nerve-type pain where the nerve endings have become damaged with associated tissue damage. Impaired nerve endings can send faulty signals to the brain. For some, it is simply an intermittent annoyance but for others it can be debilitating. For some, it is fleeting; for others, it is constant.
I had a foot amputated at age 9 and another at age 16. In addition to the acute postoperative pain, I felt phantom pain almost immediately both times. It felt like my toes were tied together and no matter how hard I tried, I could not stretch them apart. More than once, it felt like hot water was being poured on my foot, and I actually looked every time to be sure it wasn’t. I would reach down instinctively to scratch an itch on my non-existent foot. To this day, I still experience sharp, shooting, stab-like pains that can easily take my breath away. If I intently focus on either stump, it still feels like my toes are tied together, and I can’t stretch them apart.
Treatment options exist but usually offer limited and unreliable benefit. Antidepressant medication, local anesthetics and anticonvulsant medication can provide some relief. You might wonder what role antidepressants, anesthetics, and anticonvulsants might play but if you suffer from chronic, severe phantom pain, you will try almost anything. Others have tried hypnosis, acupuncture, nerve blocks, trigger point injections, and even ‘mirror box’ therapy (looking at the reflection of the remaining limb and trying to move the missing limb into a comfortable position). Some find it helpful to wrap the stump in a warm towel or cold pack, change its position, or apply deep massage. Therapy that works for one may not work for another. Trial and error is often necessary before finding a treatment that will provide relief. While treatment of phantom pain is largely ineffective and there is no cure, it tends to lessens over time.
When I had my surgeries, no one told me about phantom pain. Initially, it didn’t seem odd that I could still feel my foot. When I was 9, I never mentioned these strange events. When I was 16, I mentioned them, but people reacted as if I was crazy. The foot was gone, how could it have any pain? I first learned about phantom pain at age 20 when I joined Amputees in Motion, an amputee support group in San Diego. I couldn’t believe that there was actually a name for it and that it was very common.
It is critical to discuss phantom pain with amputees and their families. It is important to know the facts and understand the options. While amputees will experience lots of new issues, phantom pain will, no doubt, be one they didn’t expect.
Support groups are available locally and nationally, on the internet and on social media. I find the Amputee Coalition of America (http://www.amputee-coalition.org) to be especially valuable.