Maintaining Good Health Following Spinal Cord Injury
Online Health Chat with Frederick Frost, MD
January 15, 2013
Each year nearly 12,000 Americans suffer from a new spinal cord injury (SCI). Currently, there are over 250,000 people in the U.S. living with a SCI. This life-changing injury that often results in some form of paralysis also causes profound changes on bodily functions.
Persons living with SCI have many lifetime health concerns, including pain; pressure ulcers; respiratory complications; spasm; bowel and bladder problems; depression and sexual concerns, among several other medical problems. Patients with SCI also can be affected by irregular heartbeat, low blood pressure, blood clots and autonomic dysreflexia (where the body produces a life-threatening reflex reaction to an injury below the site of the spinal cord injury). Unfortunately, many physicians are unfamiliar with the special needs of persons with SCI—while others focus too much on the paralysis and ignore the provision of good medical care to treat the whole patient. Patients need to understand how to serve as their own health care case managers and advocates to intelligently seek out specialty medical care on their own when needed.
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About the Speakers
Frederick Frost, MD, is a Cleveland Clinic staff physician with board certification in physical medicine and rehabilitation and spinal cord injury medicine. Dr. Frost is the Chairman of Cleveland Clinic’s Department of Physical Medicine and Rehabilitation as well as the Executive Director of Cleveland Clinic Rehabilitation and Sports Therapy.
He is a national expert in the field of spinal cord injury. Dr. Frost graduated from Feinberg School of Medicine at Northwestern University, in Chicago. After post-graduate training at Cook County Hospital and the Rehabilitation Institute of Chicago, he completed a fellowship in Spinal Cord Neurotrauma at the Midwest Regional Spinal Cord Injury System at Northwestern University, in Chicago. Dr. Frost previously led the Spinal Cord Program at MetroHealth Medical Center in Cleveland for 10 years, and was the principal investigator and project director of the Northeast Ohio Regional Model Spinal Cord System Grant awarded in 1995 by the National Institute of Disability and Rehabilitation Research.
Let’s Chat About Maintaining Good Health Following Spinal Cord Injury
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Cleveland Clinic spinal cord injury specialist, Dr. Frederick Frost. Let’s begin with some of your questions.
SharrodCJ: My 18-year-old son, who is a recent spinal injury (SCI) patient, was just diagnosed with sleep apnea. Is this a sign that he is at risk for other respiratory issues?
Dr_Frost: Sleep disorders are very common after spinal cord injury, and there are several reasons why they occur. A sleep study is very important for patients with sleep disorders. When a patient’s sleep problems are treated, the patient will have more energy, more restful sleep, and will be able to prevent long-term lung problems like pulmonary hypertension. Actually, our SCI patients seem to tolerate masks and sleep devices much more readily that our able-bodied patients!
Imaging Studies for Diagnosis
Maryri: I had an MRI without contrast done on my cervical spine in 2011. I have a large right paracentral disc extrusion at C6-7 resulting in mild central canal stenosis with mild deformation of the right hemicord and moderate-to-severe right neural foraminal stenosis. There are also degenerative changes of the right vertebral joints at C5-6 with moderate right foraminal narrowing. I really took it easy and I think I had healed pretty well at 12 weeks. Months later I realized that some of the pain I had been having in my shoulder was ramping up. Now my shoulder hurts more than the cervical area. I had a double-contrast CT of my right shoulder done in November. The CT showed small type 2 SLAP (superior labrum anterior position) lesion in the superior glenoid labrum and mild local osseous degenerative changes at the acromioclavicular joint with greater tuberosity of the humerus. Should get my shoulder fixed before I try to get my cervical spine evaluated again? I do not have any of the original tingling and numbness in my arm or finger from the cervical herniation but I do have muscle pain in my arm and elbow, which I feel like is coming from my shoulder pain.
Dr_Frost: You have a tough, complicated problem. Trying to sort this out would require a long clinic visit, and would require further information about your situation, age and other medical history. I can tell you that when our patients get a hold of their imaging reports, they commonly put way too much emphasis on the words contained in these reports. Interpreting an x-ray is an art, and sometimes x-ray reports are not always true, accurate or relevant. Yours is a common problem—the shoulder doctor will blame your neck for your pain, and the spine doctor may blame your shoulder! You are caught in the middle. One thing that may help is an electromyography (EMG) test, done by an expert physician. This test can help sort out whether the nerve damage in your neck is the cause of the problem, and how aggressive you should be in addressing it. Our clinic is full of 50-year-old patients with pinched nerves and painful shoulders, and we very rarely recommend surgery.
PennAlum: I know that pneumonia is a big concern for SCI patients, and it’s been recommended that I get vaccinated to avoid putting myself at risk. If I am young and healthy, do I still need to be vaccinated?
Dr_Frost: You must get a flu shot every year! There are good medical studies that show that flu shots are effective in persons with spinal cord injury. Pneumonia shots are recommended for some of our patients as well.
The immune system of a person with chronic paralysis is weaker than the average person. That is why it is very important that our patients get immunized. Our patients have little reserve capability to fight off a bad case of the flu. If we can avoid one hospitalization for pneumonia, we have greatly reduced your risks of getting pressure sores, blood clots, and serious complications associated with hospitalization.
Medications for Urinary Tract Infections and Spastic Bladder
jacko: What do you recommend to help prevent urinary tract infections? My doctor wants to have me take an antibiotic daily. What do you recommend?
Dr_Frost: I have no problem in general with prescribing a daily antibiotic. Bladder management is complicated, and depends on your gender, your type of injury, your hand function, and so on. We have some patients who just cannot keep from getting sick from frequent urinary infections. For these patients we prescribe a low dose of a very gentle antibiotic. The purpose is not to sterilize the urine (bacteria will always invade), but to keep the bacteria counts lower so the patient doesn't get sick.
SoccerMom2: Due to my spinal cord injury I have a spastic bladder. I would rather not have surgery if I can avoid it. What medication(s) do you recommend?
Dr_Frost: I'd need to know more in order to give you advice, but you are right in trying to avoid surgery if possible. We now have medications that relax the bladder that are called anticholinergic medicines. They are gentle, and have fewer side effects than the older versions of the drugs. Try to find a spinal cord doctor or a urologist that treats a lot of SCI patients or multiple sclerosis patients. Not all urologists are comfortable treating SCI patients.
Treatment Options for Pain
LillyH: What do you think of spinal implants for pain?
Dr_Frost: I assume that you mean electrical stimulation implants? A large percentage of our SCI patients, nearly 50 percent, have pain problems. Some pain problems are simpler, like a shoulder strain. Others are very complicated, like the burning or pins-and-needle pain we call central deafferentation pain. If you have a spinal cord injury and you have pain, you are not alone.
Most of the time, spinal stimulators come into the conversation after a patient has unsuccessfully tried many different medications and interventions, as a so-called ‘last ditch’ intervention.
Spinal stimulators are not new. I started my practice in the late 1980s and they were being investigated by neurosurgeons then. Neurosurgeons decided that they were not effective for central deafferentation pain, and abandoned their use. These stimulators made a comeback in the last few years because large medical device companies started to promote them.
If you have tried everything else to manage your pain, I would be willing to refer you for evaluation for a spinal stimulator. For the most difficult types of spinal cord pain, I have seen a few people who have been helped by electric stimulation implants, but I wouldn't say the success rate is greater than 50 percent.
LillyH: What are the best treatments for pain in SCI?
Dr_Frost: Many of my patients’ clinic visits are about pain. It is important to know what type of pain that you have. We generally divide SCI pain into three categories. Nociceptive pain is a type of pain that could occur in anyone—a sore shoulder, a strained knee or a backache. Border zone pain occurs in people with nerve damage, and the pain is experienced in the area of the body that forms the border between normal and abnormal nerve supply. I mentioned the most difficult pain to treat in SCI is central deafferentation pain—or central pain. This is like the ‘phantom pain’ that is ‘experienced’ in the legs and feet of persons who have had their leg or foot amputated! The nervous system is firing abnormal and exaggerated pain signals to the brain.
The treatments for pain involve more than pills and shots, which are probably not the answer. Most of our patients try to work through their pain by increasing activities that distract them. They also reduce their pain levels by staying healthy, stopping cigarettes, alcohol, and taking good care of their bowel and bladder.
The drugs that we have now for pain treatment are better than they were 20 years ago. Giving opiate drugs for pain makes patients more comfortable, but they do not function better, get out of the house more, or go back to work. I try to avoid opiate medicines if at all possible.
The best thing to do is to seek the advice of a spinal cord specialist. All spinal cord specialists know about spinal cord pain, but not all pain specialists know about persons with SCI.
Robotic Gait Training
alfonso: I recently read about robotic gait training. Do you feel it is more beneficial to work with therapists for gait training? Or do you see more benefit from robotic gait training?
Dr_Frost: Robotic gait training is done with therapists! In fact, it is not safe to do this without careful instruction by therapy experts. Think of the robotic machine as an exercise machine, just like at the health club—although a lot more expensive! The insurance coverage for these therapy visits is often denied, or complicated by lots of paperwork. The exceptions would be robotic services provided in the Veterans Administration hospitals, or those provided on a research protocol by local rehabilitation hospitals.
Electric Bladder Stimulators
Bab2432: How do you feel about electric bladder stimulators?
Dr_Frost: Although I have as much experience with electric bladder stimulators as any spinal cord doctor I know, I am still ambivalent about their use. Let’s be clear about stimulators—there are those that are manufactured for patients (mostly older women) that have unstable and leaky bladders, and there are other stimulators that are designed to replace the normal neurological function of the bladder, specifically for a person with paralysis. Both of these options have their drawbacks. First, both require surgery. The ‘leaky bladder’ stimulator is not really designed for persons with nerve damage. The spinal cord bladder stimulator is quite complicated, requires a major surgery, and the companies that make them go in and out of business. This is not good, if you need a replacement, repair or spare part!
With the long list of options for bladder management, a bladder stimulator would be way down the list of my choices for treatment.
markkees: I have two syrinxes in my spine. One is 12 years old and the other is 3 years old. Have they made any progress in the treatment of syringohydromyelia?
Dr_Frost: Because syringohydromyelia is very rare, there are very few neurosurgeons in the world that specialize in the treatment of this medical condition. Dr. Edward Benzel at Cleveland Clinic is one of those doctors. Even the best neurosurgeons can disagree on how to handle a specific case. My best advice is to find a neurosurgeon with extensive experience in syringohydromyelia, and hold his or her advice dear. There are no new ‘magic fixes’, but the most patients retain good function throughout life, even though they may have deficits.
Pregnancy and Spinal Cord Injury
Peggy83: I am a SCI patient of childbearing age and I am considering having a child. I not have any issues with curvature of the spine or hip dislocation. What else should I consider before getting pregnant?
Dr_Frost: Women with spinal cord injury can safely bear children. Although the risks of pregnancy are somewhat greater than those faced by a non-disabled woman, this is not a reason to avoid pregnancy. Take your vitamins, avoid drugs and excessive alcohol intake, and eat a healthy diet. If you become pregnant, you may seek treatment from an expert in high-risk obstetrics. Many of my patients became mothers after their injury.
Cleveland_Clinic_Host: I'm sorry to say that our time with Cleveland Clinic Frederick Frost, MD is over. Thank you, Dr. Frost, for your time today.
Dr_Frost: Thank you for all of your questions.
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