The Hidden Hurt

Story By: Lynn Levitt

Heather Howe has been an actress since she could remember. Her climb to her passion has been slow but consistent. At 22 years of age, she was injured dodging a cab, in New York, NY. The injury has no cure and puts one in continous pain, but Howe still act, rebuilding her life. Photo: Lynn Levitt
Heather Howe has been an actress since she could remember. Her climb to her passion has been slow but consistent. At 22 years of age, she was injured dodging a cab, in New York, NY. The injury has no cure and puts one in continous pain, but Howe still act, rebuilding her life. Photo: Lynn Levitt

It is midday and the sun is beating down on the traffic-filled street. A yellow cab pulls up to the curb and an attractive, petite, well dressed female pays the driver and stiffly makes her way to a restaurant patio. She sits away from the sun, leaves her sunglasses on and puts plugs in her ears. A car alarm goes off, and she winces with pain.

Heather Howe lived everyday in pain. She twisted her ankle while dodging a taxi in New York in 1998. She went from cast, to cane, to crutches and then a wheelchair, not understanding what was wrong with her.

When finally diagnosed, she was told she had Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS).

RSD/CRPS is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that the disease occurs as a result of dysfunction in the central or peripheral nervous systems.

There are three stages of RSD/CRPS, and the debate is still open for a fourth stage. A victim of disease doesn’t necessarily go from stage one and work through to three or four. RSD/CRPS can start at stage three.

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“What I was feeling was unlike any other pain I had experienced in my life. [The foot] was enormous. It looked like I had elephantitus. It was twice the size of a normal foot, maybe even larger. I had absolutely no idea what was wrong with me,” she said.

After going from one doctor to the next, Howe found a doctor who was educated about RSD/CRPS but was first immediately admitted to the hospital.

“They did some testing on me to check my blood flow and my circulation,” Howe said. “There was very little blood getting in or out of the foot and then came a discussion about amputation.”

A phenol sympathectomy was done on Howe to define RSD/CRPS and help relieve the pain. Phenol was injected into the nerve ganglion connecting nerves from the brain, which is where it lives. The process sounds simple: the pain switch stays on, the body part nerves are over stimulated, the body goes into flight or fight mode and the pain continues long after the initial trauma.

Although RSD/CRPS can go into remission, there is no cure.

“There is only one way to say this,” Howe said, “They botched it.”

Howe could not straighten her leg out, and it took a year before the foot became better.

“I didn’t need to get it cut off,” Howe said. “I have both feet. I am very, very lucky.”

The RSD/CRPS has now spread through her body. One of the treatments Howe used is an injection of trigger points.

Dr. Brendan Murray is a team doctor, co-chair of the Medical Board for the USA Olympic Weightlifting Team and founder of The Institute for Spine and Sports Care in Santa Monica.

“What we have found is a treatment that is very effective [for RSD/CRPS]. An anesthesiologist will go in and put a small amount of medicine called lidocaine into the ganglion, which is a communication center of that nerve. It almost shuts it off, and now we can go in from a therapeutic perspective and reestablish motion,” Murray said.

Another alternative was to be outfitted with an external spinal stimulator.

”My purpose for wearing the external stimulator was to see if I would be a good candidate to have it implanted,” Howe said.

The stimulator generates tiny electrical pulses that are sent to the spinal cord. These electrical pulses block pain signals before it arrives at the brain, replacing it with a tingling sensation called pareshesia, according to Advanced Neuro-Modulation Systems, a St. Jude Medical Company. As much as Howe wanted to emulate Darth Vader, the internal stimulator was not an option.

“The next brilliant idea,” Howe said sarcastically, “was to put a morphine pump into my abdomen. More excitement, more Darth Vader.”

Depression is a side effect of RSD/CRPS.

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“If you are in a wheelchair and you can’t walk and you can’t do what you love, you have family members who give up on you and they turn their back on you and friends don’t come to visit you anymore; it is a natural, logical human thing you would be, at some point, depressed,” Howe said emotionally.

Howe tries to stay positive and continuously seeks normalcy. In between severe bouts of pain, Howe is finding success as a working actress.

“I to one audition on crutches and telling the casting director that I just twisted my ankle and I was going to be better any day because I needed to have that normal,” Howe said.

One audition was with producer/director Jess Mancilla.

“She is most versatile and natural to work with. She is very talented, creative and attractive. In this business she is the total package. She has all the elements,” Mancilla said.

It’s been 15 years now. Howe survived on a regimen of lumbar sympathetic blocks, medication cocktails, neuro-feedback, biofeedback, acupuncture, anti-seizure medication and antidepressants before going into remission. For Howe, acting is the incentive that keeps her going.

The sun is disappearing, and the air temperature drops. Howe has a slight chill. She is going to help a friend at the theater that night. Howe knows about deferring focus to something positive and masks her pain, but she really wishes she could just lie down and sleep.

Howe is now in remission.

Heather Howe holds a photo of her mild Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), flare up. The odd position of the toes is referred to as dystonia, which can come from physical trauma. Photo: Lynn Levitt
Heather Howe holds a photo of her mild Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), flare up. The odd position of the toes is referred to as dystonia, which can come from physical trauma. Photo: Lynn Levitt
Dr. Brendan Murray explains how the nervous system relates spine and treatment for CRPS in Santa Monica. Photo: Lynn Levitt
Dr. Brendan Murray explains how the nervous system relates spine and treatment for CRPS in Santa Monica. Photo: Lynn Levitt