Q. I’m 37 and in my 14th year as a T6 complete para. Up until recently I’ve had just enough spasms to keep my leg muscles in shape, but nothing that bothered me. Within the last month my leg spasms have gone from mild to out of control — I have to Velcro them into my chair to keep them from spasming straight out.
My primary care physician checked me for UTIs, bladder and kidney stones and pressure sores, and all tests came up negative. He is at a loss as to what is causing the spasms, so he referred me to a physical medicine and rehab doctor at the center where I did my rehab — but that isn’t until next month.
Do you have any ideas as to what may be causing the spasms? What are my options for treating them? Have you heard of other people with this?
A. Dani, it sounds like your primary care doctor is on track, including sending you to a PM&R doctor to further investigate the cause and offer treatment options.
Spasms are a double-edged sword — they help maintain muscle tone and help pump blood from the legs. And increased spasm activity can be a valuable SCI tool to help you identify problems before they do damage — such as a leg jumping violently when your foot enters water that is too hot. But severe spasms can interfere with everything from seating and transfers to sleep.
According to Diedre Bricker of the Craig Hospital Nurse Advice hotline, a sudden increase in spasticity years after SCI is a warning sign that a stimulus is affecting your body — usually something that would be uncomfortable or painful if you had sensation in the affected area. When spasms increase, first check for obvious causes — problems with seating and positioning, a full bladder or bowel, skin irritation, pressure sores, ingrown toenails, UTI, or red or swollen limbs that may indicate a fractured bone.
If the cause isn’t found — see a physician. If possible, the best bet is to see a PM&R doc at a major SCI rehab center. Tracking down the cause of spasticity is PM&R detective work — checking for bladder or kidney stones, heterotopic ossification (bony growth, usually around the hips) or a syrinx — a cyst on the spinal cord
In treating spasticity, Mark Johansen, a PM&R doctor and medical director of the Spinal Cord Injury Program and Spasticity Clinic at Craig Hospital, explains a hierarchy of options — starting with physical therapy, stretching and ranging joints, icing spastic muscles, and using a standing frame. The next step is pharmacological management. Medication options include baclofen (affects nerve endings), diazepam (Valium, a muscle relaxant), and gabapentin (anti-seizure medication that helps calm muscle spasticity). Johansen says that often a combination of medications is effective. The next steps are neurosurgical options like a baclofen pump, Botox injections, or phenol nerve blocks — locating the nerve that creates the spasm and injecting phenol, an agent that kills the nerve. Johansen cautions that when it comes to phenol blocks, it is important to find somebody that has a lot of experience in doing them.
An interdisciplinary approach is important in treating spasticity — especially with stubborn or non-obvious cases. At the Craig Spasticity clinic, Johansen works with Gary Maerz, a PM&R doc, along with a physical therapist, an occupational therapist and a nurse. “We assess a patient as a team, come up with a plan, proceed with interventions to manage the spasticity, then schedule a follow-up to ensure the therapeutic goals are met,” Johansen says.
“Although it is still appropriate to go step-wise in treating spasticity, and some clinics do that,” Johansen says, “depending on the person, we skip steps and get more aggressive earlier on to spare complications like contractures and deformities.”
When it comes to neurosurgical options, the baclofen pump is often the first line of defense. Scott Falci, chief neurosurgical consultant for Craig Hospital, explains the steps to see if a person is a good candidate. “First we rule out things like syrinx, fractures, UTIs, etc. Then we try maximizing oral pharmacological medications. If that doesn’t work or has adverse side effects, we go to the baclofen pump.”
A small baclofen pump is surgically placed in either the right or left side of the abdomen. Proper placement of the pump is equal parts science and art. A catheter runs from the pump and delivers baclofen directly into the intrathecal area — the fluid around the spine. It has to be refilled via a syringe through the abdomen every two to six months. The battery life is five to seven years.
Falci says that because the pump delivers baclofen directly to the fluid around the spinal cord, it is much more effective at stopping spasms, doesn’t have the same side effects as oral baclofen, and a person only requires about one-thousandth the amount of baclofen from a pump that they would need by mouth.
A prospective recipient is first put through a baclofen “test run.” After being admitted to the hospital the night before, the next morning a test dose of .05 mg (vs. 50 mg by mouth) is injected into the spine. A therapist checks the spasticity level at four, six and eight hours. If that doesn’t work, they re-try with .1 mg. If this dosage works and relieves the spasticity, the person is a candidate and can have a pump placed.
Pump placement surgery takes about three hours. At Craig recipients stay flat on their back for the day after surgery to guard against a spinal fluid leak, then sit up at about 45 degrees the second day and completely upright the third day. Most people are monitored for three days to get the correct dose. To make sure patients are happy with their spasticity relief, doses can be adjusted through the skin with a radio-frequency device.
“To do it right, it should be a team approach between the patient, a PM&R doctor, surgeon, therapist and a person that is skilled at managing the pump — filling it on a regular basis,” Falci says.
The last neurosurgical option Falci offers is called a sensory micro rootlet section — cutting a portion of the sensory rootlets that go from the spinal cord to the specific muscles that have spasticity. Falci explains it can be very effective, but it is a much more involved surgery than the baclofen pump — and it is irreversible. Once you have gotten rid of the spasticity, that’s it, you can’t get it back.
You have a lot of options, Dani. Keep us posted.
To contact Dr. Falci, go to www.craighospital.org.
Advice in this column is supported by Craig Hospital’s SCI Nurse Advice Line, a toll-free hotline for people living with SCI, a community service partially funded by grants from the PVA Education Foundation, Craig H. Nielsen Foundation and Caring for Colorado Foundation. For non-emergency nursing information about SCI health, call 800/247-0257 between 9 a.m. and 4 p.m. Mountain time. If you have a health question, contact Bob Vogel at firstname.lastname@example.org.