Readers responded to our request for information about living with this common secondary condition of spinal cord injury and disorders. Part two of a three part series on spasticity.
By Chris Pierson
In July, Action requested information from members about their experience with spasticity. This article summarizes the information we gleaned from about 15 respondents, representing a wide range of people with spinal cord disorders (SCD) who cope with spasticity: men, women, people with cervical- and thoracic- level spinal cord injuries (SCI), people with multiple sclerosis (MS), some who have been dealing with spasticity for a short while, and some who have been living with it for decades.
Our poll was informal and the respondents were self-selected. In no way is the information presented here intended to be read as the definitive statement on spasticity for people with SCD, nor should the information here be considered “medical advice.” The purpose of this article is to present a picture of spasticity from the patient’s perspective based on the reporting of those who live with the condition.
Perhaps the most striking lesson to be learned from our respondents when their accounts are taken together is that each person’s experience with spasticity is unique. But our respondents’ experiences did, taken together, support much of the medical view of spasticity as summarized in our previous article in this series (’Spasticity: A Medical Overview,’ by Rob Ingraham, October 2007).
Spasticity Defined
With all the variations we found among our respondents, the question naturally occurs, were they talking about the same condition?
The first article in this series defined spasticity as a complex secondary condition involving “sudden, involuntary muscle contractions” brought about following onset of an SCD by the return of reflex activity after a period during which normal reflexes cease below the level of injury.
On one question, nearly all of our respondents agree: most reported becoming aware of their spasticity within days or weeks of their injury. An octogenarian with incomplete paraplegia at T-9, for example, said he experienced spasms “practically since day one” of treatment for acute injury in the 1960s, adding that for certain it was within the “first four weeks.” One 42-year-old woman who has had MS for 21 years said, “Spasticity has always been an issue since I was diagnosed.”
Respondents diverge, however, on specifics of the condition, a fact that does not contradict the medical view. As reported in part one of this series, Dr. David R. Gater, chief of Spinal Cord Injuries and Disorders at the Hunter Holmes McGuire VA Medical Center in Richmond, Virginia, said, “Some folks welcome spasticity; for others it is the bane of their existence.”
Bane of Existence?
While we did not hear from any person who expressed contentment with their condition, a few did suggest benefi ts to having spasticity. A septuagenarian with long-term SCI said he used the spasms in his legs to enable him to turn over in bed.
One man in his late 20s who has had a complete injury at T-5 for three years reported another benefit: “People look at my legs and can’t believe the muscle tone. It looks like I’ve been working out.” The increased muscle tone is entirely due to spasms, which for this respondent, seems to be set off by the slightest stimulus. “I often sleep during the day,” he said, “because I can’t sleep at night. I can’t even touch the sheets without my legs going completely into spasm.”
Most of our respondents reported having negative experiences with spasticity. “It interferes with your whole quality of life,” said the 80-year-old with incomplete SCI.
Several of those with SCI reported similar sensations-”like an electric shock” starting in the legs and “shooting up” into the abdomen, chest or other limbs. Some described the sensation as a “burning.” Those with all kinds of SCD described having “jerkiness” or “jumpiness” in the legs. Many said that in addition to spasms in the legs, they experienced spastic bladders as well.
Almost every respondent said his or her spasticity was accompanied by neuropathic pain, often extremely severe. A young woman with SCI reported that she had been in nearly constant debilitating pain after injury until she had had the metal rods holding her spine in place at T-10 removed. “The spasms decreased immediately,” she said, though they didn’t cease entirely.
Only one respondent, a 72-year- old who said he had been diagnosed with progressive MS about 12 years ago and who is hemiplegic on the right side, reported “no pain” with his spasticity. “The right leg just stiffens up,” he said.
Varied Treatments
In the first part of this series, Dr. Gater listed several kinds of therapy to manage symptoms of spasticity: Drugs, surgery, and a process called chemodenervation that uses Botox to deaden nerves that send signals to muscles to go into spasm. Most of our respondents reported undergoing drug therapies. Only one had resorted to surgery, and none had said they were treated with chemodenervation.
The treatment our respondents mentioned most frequently was baclofen, a drug that (in the words of the previous article) works on the central nervous system to “help improve passive range of motion and reduce muscle spasms, pain, and tightness.” Virtually every respondent had taken baclofen at some time, with varying degrees of satisfaction. All of those who reported using baclofen said they took it in pill form; none said they used the baclofen pump, a drug delivery system surgically implanted in the abdomen, which the previous article noted is the fastest growing treatment for spasticity. One respondent, who had been diagnosed with MS in 1967, said a neurologist had suggested he go on the baclofen pump, but he declined because he was told it would make it impossible for him to stand up.
Most of those being treated with baclofen said they took 20 mg or more four times a day. The young woman with the T10 injury expressed frustration with pharmacy chains that restrict pharmacists from dispensing more than 80 mg a day of baclofen in her home state of California. “If I could, I would be taking 120 mg,” she said.
Many of our respondents listed several medications that they had been on at one time or another, a formulary that includes Ditropan for bladder spasms, Neurontin® (an anti-convulsant), Naproxen® (an anti-inflammatory), Flexeril® (a muscle-relaxant) and Zanaflex® (a muscle relaxant and anti-spasmodic).
Other treatments our respondents reported using are less conventional. The octogenarian with incomplete SCI said that “deep breathing” and acupuncture relieve some of the symptoms of his spasticity. An MS patient from Florida who had been a nurse before her diagnosis said she found that a regimen she developed for herself of stretching and range of motion exercises, if done everyday, can combat tightening of the muscles.
Two respondents, the young man with the incomplete T-5 SCI and the 42-year-old woman with MS, reported having success with medical cannabis, each saying it was the only treatment they had ever tried that alleviated both the spasms and the pain that accompanied them. The woman with MS started using cannabis to treat her spasticity in 1996 and found that it reduced her symptoms “substantially.” She started by smoking-which our other respondent still does- then switched to an edible form. “I don’t take it all the time,” she said. “I had to find my own elixir to see what works.”
Thanks to all of those who called and wrote in response to our request for information on spasticity. Part three of this series will focus on the caretaker’s role in treating and living with this secondary condition.
Chris Pierson is managing editor of Action.
This article is the second in a 3-part series on spasticity, sponsored by an unrestricted educational grant from Acorda Therapeutics. Acorda had no influence on the content of this article or series.
