Pain Wars: The Phantom Menace

Some have asked how Daniel is doing with regards to managing pain. The early phase of just stabilizing him was followed closely by the phase pain management.  Pain can be categorized into two basic groups: surgical pain and Phantom Limb Pain.

Surgical pain is that pain that he experiences much like most of do when we get hurt.  These are nerve and muscle pain that we experience from direct trauma to our body.  This is the easy pain to understand and communicate with others.  You know the kind: a stubbed toe, and broken bone, a torn achilles tendon, the hurt after having surgery, etc.  It varies in intensity and we all handle it in different ways.  Daniel had a great deal of this pain early on.  This is not really an issue any more.  Medication and time have healed most of that pain.  Right now he has it due to his recent ear surgery.  He says it feels like someone shoved a pencil in his ear  - ouch!

The second, and more elusive, group of pain is Phantom Limb Pain. 

Phantom Limb Pain is the sensation that an amputated or missing limb (even an organ, like the appendix) is still attached to the body. Approximately 60 to 80% of individuals with an amputation experience phantom sensations in their amputated limb, and the majority of the sensations are painful. The missing limb often feels shorter and may feel as if it is in a distorted and painful position. Occasionally, the pain can be made worse by stress, anxiety, and weather changes. Phantom limb pain is usually intermittent. The frequency and intensity of attacks usually decline with time.  The introduction and regular use of prosthetics greatly reduces the sensations.

Daniel felt this sensation early on in his recovery and as surgical pain subsided the phantom pains became worse.  He feels it more when stressed and when he is cold.  He rarely feels it with his fingers, but he is in a constant battle with phantom leg pain.  Granted, it is less and more controlled than it has been.  Early on he felt like his legs were continually sticking straight out.  He has said that he pain is sometimes like someone is stabbing a knife into his foot or knee.  Other times it is like putting his foot into a fire.  It is a constant nagging companion that sometimes spikes into an unbearable menace.

There is no easy answer or remedy for the kinds of pain Daniel has dealt with over the past few months.  Phantom pains are treated in many different ways.  Drugs are one way to control it.  That usually entails a mixture of different kinds and levels of medications.  The concoction varies from person to person.  For one Percocet is an important drug, for others it may Methadone, Oxycoton, Pamelor, Morphene, or Lyrica.  More than likely it is a combination of these.  Daniel is past the Dilaudid and Ketamine stage (two VERY powerful drugs) and is slowly lowering his need for his combination of other drugs.

Beyond drugs there are a whole variety of other remedies that have varying levels of effectiveness.
Here are a few ….

·         Tapping and rubbing the ends of the limbs. (sometimes gives Daniel some relief)

·         Acupuncture. (Didn’t work at all for Daniel and only made him look “bedazzled”)

·         Silver or other metal fibers in his “shrinkers” (the socks he wears on the end of his limbs).  (Unsure whether this has helped or not)

·         Pulsed Radio Frequency Ablation- this is a procedure done through the pain clinic here at the hospital (in fact this procedure is done only here in the entire country by the two doctors treating Daniel).  It basically involves probing via long needles the ends of his legs to find and “zap” the nerve endings that are triggering the phantom pain.  If this procedure is done well (actually tapping into the right nerves, which is hard due to the extreme trauma in his legs) it works extremely well.  He had this procedure done earlier this week on his left leg (the worse of his two) and he has little spiking in his phantom pain right now.  In Daniel’s words, “It basically numbs it so it won’t flare up.”

·         Mirror Therapy - Daniel places a mirror near him and looks at another’s legs in place of his and his brain somehow sees it as his own and lowers the pain.  Sometimes just rubbing another person’s foot helps out.  We really don’t understand this.  But, it really does work.  He uses it less now, but at times it was a great way to bridge the gap between the spike in pain and medication taking over.  We thank the Dr. Cindy Bukach (University of Richmond, Cognitive Psychology) for first introducing us to it and Lynn Boulanger (Naval Medical Center, San Diego; Occupational Therapy) for helping us to figure out how to do it.  (pictured below is Daniel doing mirror therapy with the help of his brother, Tristan)

Please continue to pray for Daniel’s recovery and eventual end to his pain.