Myths and Facts About Phantom Limb Pain

For up to 80% of the millions of Americans who’ve lost a limb, ongoing pain and other uncomfortable sensations in the missing limb interfere with their quality of life. This condition, called phantom limb pain (PLP), makes everyday tasks — even getting a good night’s rest — challenging.

At Anthony Echo, MD, FACS, with multiple offices in Houston, Texas, our board-certified surgeon specializes in peripheral nerve surgery, microsurgery, and nerve pain. Amputees from around the country come to our clinic for help with phantom limb pain.

Dr. Echo uses his expertise to offer effective PLP treatments. He also knows many myths surround phantom limb pain. Here’s a look at some of the most common myths and the truth behind them.

Myth: Phantom limb pain means you feel like your missing limb is still in place

Fact: Phantom sensation comes in many forms

Many people who undergo amputation experience some type of phantom sensation. Phantom limb sensation (PLS) means you can still “feel” the missing limb. It might feel like the limb is asleep or you have an itch, but it isn’t necessarily painful. 

Phantom limb pain is a type of phantom sensation. You’re diagnosed with PLP when the feeling in your missing limb is stronger and causes painful, uncomfortable sensations, including:

• Stabbing or shooting pain 
• Cramping, pressure, or throbbing
• Twisting, aching, or burning
• Feelings of heat or coldness
• A sensation of strong pins and needles
• A sensation of the limb being crushed or twisted

Your PLP might come and go, or you can have continuous pain or sensation in the missing limb. 

Myth: Phantom limb pain is in your head

Fact: Phantom limb pain develops because of a neurological (nerve) issue after amputation

While research is still ongoing, one thing is clear: Phantom limb pain is real. Scientists have used imaging scans to study PLP and found the parts of the brain connected to the nerves in amputated limbs are active when the pain occurs.

Your nervous system sends information about sensation to your brain, where it’s interpreted. Researchers believe phantom limb pain develops when the severed nerves misfire and keep sending signals to your brain. 

It’s also possible for some amputees to have neuromas, collections of hypersensitive nerve and scar tissue at the end of the severed nerves. Because they’re extremely sensitive, even a very light touch, like the brush of fabric on your skin, can trigger PLP or other uncomfortable sensations.

Myth: If you don’t get phantom limb pain right away, you won’t get it at all

Fact: Phantom limb pain can develop at different times

While most people who experience phantom limb pain begin to feel it soon after their amputation, that’s not always the case. For some patients, PLP might not start for months or even years. 

No matter when you develop PLP, it’s important to talk about it with Dr. Echo. Even though the limb is no longer there, the pain you’re feeling is very real. 

Myth: There’s no way to treat phantom limb pain

Fact: Several treatments exist to help ease phantom limb pain

Different therapies can help you find relief from PLP. Some people find success with methods that help desensitize their nerves, like frequent touch (e.g., massage, rubbing, or tapping). Other treatments include medications, acupuncture, biofeedback, transcutaneous electrical nerve stimulation (TENS), or wearing compression garments. 

One of the most promising treatments for PLP is a surgical treatment called targeted muscle reinnervation (TMR). Patients who use TMR with other PLP therapies experience the best results. This therapy reroutes the severed nerves to other areas to create a new circuit. 

Dr. Echo first diagnoses which nerves or neuromas are responsible for your PLP. He then reroutes these nerves into different motor nerves, so any pain signals go into your muscles instead of your brain. 

As a result, you stop feeling pain from the amputated limb. It takes time for this process, however. After TMR, you can expect improvement in your pain over several months, with peak results after about six months. 

It’s important to undergo TMR with a specially trained surgeon who specializes in nerve pain and peripheral nerve surgery, like Dr. Echo, who also uses several other surgical treatments to help address PLP, including:

• Neuroma excision or transection
• Stump revision
• Regenerative peripheral nerve interface (RPNI)

If you’re struggling with phantom limb pain, get the facts about what can help by scheduling an appointment online or over the phone at Anthony Echo, MD, in Houston.