Phantom pain is the sensation of pain present where an organ or extremity is lost. After an extremity or organ has been removed, phantom pain exists in many people. The pain is located in the area of where the organ once was.
I had very few memories of time spent in the hospital following operations until I was 13 years old. Even those memories have become more faded over time. So how could someone continue to feel pain for years following a removal of a part of their body lost years previously?
Phantom pain came into my existence when I had a bilateral breast mastectomy. Though I lost a kidney, an ovary, my thyroid gland, and a lot of lymph nodes, phantom pain was a new experience. I learned what phantom pain is when I had a friend lose her leg to osteosarcoma. I was unsure she was being serious. I knew she had no reason to lie about the pain but how could a lost organ hurt?
When my breasts were removed during a mastectomy, I experienced phantom pain myself. Signs of phantom pain vary. The pain is shooting, stabbing, burning, or throbbing. Experience such as weather changes can make the pain worse. Also, phantom pain is usually present within the first few days of amputation surgery of the limb or organ.
I continue to experience pain in my breast area each month when it is time for my menstrual cycle to start over. The pain is a sharp, stabbing, burning sort of pain that often takes my breath away. I have looked for an answer to helping this pain go away but it has been difficult to find. The reason? Phantom pain isn’t very well understood.
Initially phantom pains were thought to be caused by something called neuromas in the tip where the organ or limb was lost by surgery. Neuromas are a tumor of nerve tissue that can arise from surgery. Though neuromas can contribute to phantom pain, they are not the sole cause. Congenital limb loss can sometimes result in pains similar to those reported by surgery survivors who experience an extremity or organ loss. The answer to why this happens is far from being found conclusively. However, for those who experience phantom pain, treatment does exist.
Prescription pain medication can be used to control the pain. When other therapies are combined, such as tricyclic antidepressants, these can be a great relief to the one who experienced the loss. Often the person begins to take less pain medication throughout the years but rarely is it discontinued completely. Because those who cope with the loss of a limb by more passive strategies (such as praying, hoping, but thinking the worst) report more presence of phantom pain, it is important to teach such survivors better coping skills for improved experience in healing.. Better coping skills can allow the person to divert attention and ignore sensations that remind them of their loss. Those who coped with limb loss in this manner reported significantly less presence of phantom pain.
Surgery is an option for the most severe phantom pain though not an experience anyone desires to undertake. After years of such pain, this type of measure may be needed. The person undergoes brain surgery while not completely unconscious to experience enough to let the surgeon know where he or she is having the most pain. Electrodes are placed in the area of the skull where the person reports the most pain. A subcutaneous pulse generator is then placed below the clavicle to stimulate the electrodes. One study by Bittar, et al (2005), found this procedure reduced the intensity of pain by over 50 percent and completely eliminated the burning sensation that often accompanies it.