Transverse Myelitis Association
Volume 5 Issue 1
December 2002

Page 8

Chronic Pain Control Using A Spinal Cord Stimulator: A Patient’s Perspective
Rick Steele
steelhop[AT SIGN]earthlink.net

Coping with chronic pain can be one of the most difficult challenges the Transverse Myelitis patient will face. Over time, the pain can become overwhelming, leading to sleep disturbances, immobility, and major depression. Quality of life is significantly decreased. This pain will gradually become more difficult to control, interfering with daily activities, family-life, and the ability to function productively at the job.  The increase overtime of the intensity and duration of the pain commonly results in heightened distress, as well as other psychological and psychiatric disturbances.  This pain can so severely compromise the quality of life that some patients will do anything to alleviate the pain. All hope of any recovery is lost.

As a Transverse Myelitis patient with chronic neuropathic pain since my initial insult in August 1996, this is exactly how I was starting to feel. All hope for any relief was gone. For many years I believed that my pain was just a part of my condition, something that I would have to learn to live with for the rest of my life.  Finally, after five years, I hit a wall of no longer being able to tolerate the constant daily pain.  I was having a burning sensation diffused throughout my legs, feet, toes, thighs and buttocks.  I quickly developed depression and very low self-esteem.  I did not want to live any longer, if each and every day of my life I had to wake up to more intolerable and debilitating pain.  I was using over-the-counter pain medications such as aspirin, extra-strength Tylenol, and ibuprofen, combined with physical therapy, biofeedback, self-hypnosis, and ice wraps. Eventually, overtime, all became useless in controlling my pain.

My doctor informed me that I did not have to live with severe chronic pain; there were available treatment options.  However, it would be necessary to work me through a list of these options, using a combination of drugs before analgesia (pain relief) might be achieved.  My doctor cautioned that pharmacological management can produce the desired analgesia in some patients but not all.  He also informed me that any relief produced might be tempered by the drug’s associated side effects.  Our therapeutic goal became improvement of the quality of life by pain reduction, mood elevation, increased mobility, and better sleep with minimal side effects.

Neuropathic pain can be very resistant to treatment.  I was immediately started on Lidocaine patches (topical anesthesia agent), Topamax, Neurontin (anticonvulsants) and Wellbutrin (antidepressant).  With a medical condition like Transverse Myelitis, nerve messages traveling through the spinal cord may become scrambled and misinterpreted in the brain as pain. Therefore, medications that work directly in the brain, such as anticonvulsants and antidepressants, have been successful in treating neuropathic pain in some patients.  Trying to identify the “right” dose and combination of each drug is a trial-and-error process.  After several months of close monitoring while titrating my drugs, I was ingesting up to 4800 mg. of Neurontin, 400 mg. of Topamax and 300 mg. of Wellbutrin daily.  This combination of drugs was starting to relieve my pain; however, major side effects appeared abruptly.  These side effects, which were starting to interfere with my general good health and ability to have an improved quality of life, were blurred vision, double vision, somnolence, dizziness, ataxia, loss of ability to concentrate, loss of appetite and nausea.  Severe diarrhea necessitated a quick tapering of all drug therapies. And with that, intolerable pain had returned.  My only option was to start narcotics in a high dosage.  I took up to 120 mg of oxycontin every six hours, yet with only minimal relief.

Medications are used to treat chronic neuropathic pain, if the benefits of the drugs are greater than the possible side effects.  For me, whose pain therapy was no longer effective and caused serious side effects, my treating neurologist referred me to a pain specialist for evaluation of Advanced Pain Therapy Neurostimulation.

Advanced Pain Therapy Neurostimulation is a revolutionary treatment for chronic pain and is a proven alternative to medications and other therapies for pain control. Advanced Pain Therapy Neurostimulation uses a small surgically placed neurostimulator that sends electrical impulses directly to the spinal cord or peripheral nerves.  These electrical impulses block the pain signal from reaching the brain.  Having the diagnoses of both Transverse Myelitis and diffuse pain throughout my legs, feet, toes, thighs and buttocks, the area of treatment and stimulation would need to be directly on my spinal cord.  Spinal cord stimulation has been proven beneficial in treating chronic pain of the trunk and lower extremities.

The Spinal Cord Stimulator (SCS), also known as a Dorsal Column Stimulator is the particular neurostimulator used directly on the spine for the treatment of severe chronic pain.  This device consists of a surgically implanted pulse generator producing low-level electrical impulses delivered directly to the spinal cord via leads surgically inserted in the epidural space.  These electrical impulses interfere with the direct transmission of any pain signals traveling along the spinal cord to the brain.  Painful stimulation is then replaced with a more pleasing tingling sensation in the areas where pain is usually felt. This sensation is referred to as parasthesia.

After the pain control specialist indicated that I would be an appropriate candidate for the Spinal Cord Stimulator, I investigated the different companies that manufactured the various available simulators and their different components.  Company representatives were both willing and eager to meet with me, answer my questions, and to provide me with the names of other patients who recently had Spinal Cord Stimulators implanted.  In addition, knowing that a Spinal Cord Stimulator requires an invasive surgical procedure with potential risk factors, I decided to seek second opinions regarding the appropriateness of a Spinal Cord Stimulator for a Transverse Myelitis patient.  The Spinal Cord Stimulator is considered an advanced pain treatment modality; it is not a treatment option for everyone.  In general, all conservative pain management approaches should have been tried and failed in adequately controlling pain before the use of a Spinal Cord Stimulator.

There are two companies in the United States that currently market the Spinal Cord Stimulator, Advanced Neuromodulation Systems, Inc. (ANS), and Medtronic.  You may visit the ANS website at www.ans-medical.com or speak directly with a representative at their headquarters in Plano, Texas by calling (972)309-8000 or (800)727-7846. Medtronic’s website is www.medtronicpain.com or they can be reached at their Minneapolis, Minnesota location by calling (612)574-4000 or (800)328-2518.

Each company offers two different types of Spinal Cord Stimulator systems: a fully implanted system with an internal power source, and an implanted system with an external power source.  The major difference between these two systems is, of course, the location of the battery.  Where as the internally-powered system uses a battery implanted beneath the skin, the externally-powered system uses a battery worn outside the body.

This fully implanted system’s battery source is an Implantable Pulse Generator (IPG) consisting of the battery and related mechanics.  Housed in a single metal container that is completely implanted under the skin, it is usually placed in the area of the buttocks or abdomen.  The IPG, about 2 and 1/2 inches by 2 inches and 1/2 inch thick, creates and sends the electrical impulse to the spinal cord via wire leads that run from it to electrodes positioned in the epidural space of the spinal cord.  This system requires additional simple surgical procedures from time to time to replace the battery when it becomes depleted.  Batteries usually last about three years.  However, actual battery life is further dependent upon the particular settings and frequency programmed to treat your pain.  This system can remain on 24-hours per day even while one showers, bathes or swims.

The externally-powered system has a similar IPG device known as a receiver that is much smaller in size, containing electronic circuits, but no battery. Like the IPG, this receiver is positioned under the skin in the abdomen or buttocks area.  The receiver functions similarly to the IPG by sending mild electrical impulses to the spinal cord.  It operates via radio-frequency signals that are passed through the skin from a transmitter worn externally on the belt.  A replaceable taped patch with an antenna wire, which runs to the transmitter, is placed on the skin directly over the site of the implanted receiver.  For the system to operate, this patch and antenna connected to the transmitter must be in place. Patients whose pain requires high energy levels to control their pain are good candidates for this system because no surgery is required for battery replacement.  However, this system cannot be used while showering, bathing or swimming, and the external component can be difficult to carry as well as sleep with.

A Spinal Cord Stimulator company representative and the treating physician will assist the patient in selecting which of the two systems is better suited for the patient’s type of pain.  Generally, the internally-powered system (IPG) is the one to choose for simple pain patterns, which require less energy and therefore fewer battery replacements.  The externally-powered system is better suited for the more complex pain patterns, because the battery is contained in the external transmitter and can easily be recharged.

An important fact to note is that the implantation of the stimulator is a two-staged surgical process.  It involves a trial implantation of the spinal cord leads on a temporary basis to help determine if the therapy will be effective in the patient’s pain control.  A trial period may last anywhere from one to ten days.  If the trial proves to be successful (pain is decreased by 50 percent or more), the patient will return to the operating room to have the complete system permanently implanted.  Surgical pain from the incision site on the back will last for several days, but it heals quickly.  However, pain at the IPG or receiver site on the buttocks can last up to six weeks as scar tissue is formed.  Once the scar tissue is formed, this pain will disappear.

I have had the Advanced Neuromodulation System IPG (the internally-powered system) Spinal Cord Stimulator in place since April 2002 and have had a significant decrease in my pain.  I’m currently only taking 10 to 20 mg. of oxycontin per day.  A good outcome with the Spinal Cord Stimulator is defined as a decrease in pain by 50 percent or more.  I’m experiencing about a 75 percent reduction in the debilitating pain that had been occurring prior to the implantation of the stimulator.  This reduction in pain has provided me with the ability to start daily rehabilitation and to actively participate in a structured physical therapy program.  As I become more familiar with the stimulator and when to utilize its various programs specifically programmed for my needs, I’m becoming more successful in taking control of my pain.  After a prolonged investigation process, I chose the ANS neurostimulator.  My decision was based on the fact that the ANS product is currently more technically advanced then the Medtronic system.  However, both companies are aggressively pursuing more advanced spinal cord pain control technology and in no time at all Medtronic could have the better product.  More importantly, I valued ANS for the professionalism, the responsiveness, and the genuine caring attitude demonstrated by the company’s field service representative.

The treating physician and a field service representative will teach each patient about the use and care of the implanted stimulator.  The patient will learn how to adjust the level of stimulation to control their pain throughout the day.  Gradually, the patient will begin to take control of their chronic pain and do more of the things they were wanting to do. I have discovered that living with the spinal cord stimulator requires no extra time or effort on my part.  However, I must take extra precautions around department store theft detectors, airport security, high-voltage power lines, and power generators as their magnetic power devices may cause an increase or decrease in the stimulation effect. Additionally, MRI (magnetic resonance imaging), ultrasounds and diathermy procedures should be avoided.  All patients are provided with an identification card that contains important information about their implant. It should be used to alert medical personnel and others, such as airport security officers, that you have an implanted medical device.

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