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Long Term Transverse Myelitis (TM) Care
Many patients diagnosed with transverse myelitis will require rehabilitative care to prevent secondary complications of immobility and to improve their functional skills. It is important to begin therapy early during the course of recovery to prevent inactivity related problems (like skin breakdown and soft tissue contractures) that lead to loss of range of motion.
Spasticity and immobility/paralysis from transverse myelitis:
Spasticity means stiffness or muscle spasms, and is often a very difficult problem to manage. We all need some muscle tone in order to control our movement, but when muscles become too tight, the result can range from slightly bothersome stiffness (particularly upon wakening) to uncontrollably painful spasms. When the latter occurs, small triggers such as changes in position, temperature, humidity, or presence of infections can cause this painful spasticity. The key goal is to remain flexible with exercise, a daily stretching routine, and a bracing program with splints, as needed. These splints are commonly used at the ankles, wrists or elbows. Medication options to relieve spasticity can be used in conjunction to these techniques, as well as therapeutic botulinum toxin injections and serial casting. The therapeutic goal is to improve the function of the patient in performing specific activities of daily living (i.e. feeding, dressing, bathing, hygiene, mobility) through improving the available joint range of motion, teaching effective compensatory strategies, and relieving pain. Left untreated, severe spasticity can lead to shortening of the affected muscle or joint called contractures, further impacting mobility, rehabilitation, and independence.
An appropriate strengthening program for the weaker of the spastic muscle acting on a joint and an aerobic conditioning regimen are also recommended. Assessment and fitting for splints designed to maintain an optimal position for limbs that cannot be actively moved is an important part of the management at this stage. The effects on mobility as a result of TM, can vary widely, however, from paralysis to mild weakness. Either way, physical therapy is instrumental in getting patients back to where they need to be. Because physical therapists deal with many different types of injuries and diseases, it is ideal to work with one who has a particular interest in spinal cord rehabilitation when possible. Assistive devices may be necessary for patients with weakness – it can be difficult and oftentimes humbling to take the necessary step of using an assistive device, but when faced with the alternative of broken hips, heads, and the downstream effects of lost wages or jobs, it is an important and sometimes indispensable step in maintaining independence. It also always very is important to remember to exercise, as tolerated, in order to maintain physical health and stamina.
Managing bowel and bladder complications from transverse myelitis:
Another major area of concern is effective management of bowel and bladder function. Constipation is the most common bowel elimination issue. A high fiber diet, adequate and timely fluid intake, medications to regulate bowel evacuations, and regular exercise are all important contributors in helping with gastrointestinal motility. Common bladder problems include incontinence, frequency, nocturia (frequent urination at night), hesitancy, and retention. Treating incontinence, frequency, and nocturia is often easier than treating hesitancy and retention, where clean intermittent urinary catheterizations are the basic component to success. Working with a good urologist is imperative to prevent potential serious complications, particularly one who understands spinal cord disease. Urodynamic testing is necessary to determine if you are retaining urine – even if you think you’re not – to see if you are at risk for urinary tract infections, particularly if you have a history of them, and to guide your urologist in terms of the best management.
Depression and other psychological complications from transverse myelitis:
During the early recovery period, family education is essential to develop a strategic plan for dealing with the challenges to independence following return to the community. Ongoing problems typically include ordering the appropriate equipment, dealing with re-entry into school, work, and community, and coping with the psychological effects of this condition on the patients and their families. While it is an appropriate response to be saddened by the idea of having to adjust to an altered way of living as a result of residual complications of TM, patients may be unable to move past this grief in a reasonable period of time. In this situation when it interferes with their relationships and life, it needs to be addressed and treated. Many patients fear that depression reflects on oneself as an inadequate ability to cope with their diagnosis, and feel weak. But it is not a personal strength issue, and depression is very treatable. Both talking to a psychiatrist/psychologist and medication management can have benefit, and some studies indicate a synergistic effect of combining the two. When going the pharmacologic route, the key is to not come off the medication too early, as soon as you are feeling better. Depression can rebound and can at times become more resistant to treatment.
Fatigue is the lack of mental and/or physical energy. Fatigue is a very frequent symptom in TM. Fatigue can be a direct result of TM (primary fatigue) or an indirect result (secondary fatigue). Examples of secondary fatigue include fatigue from medications, depression, stress, poor sleep patterns, infections, or changes in walking. The key is to try to identify the underlying cause of the fatigue – if a patient is not sleeping well because of pain, bladder dysfunction, or depression, this needs to be identified and addressed. Not getting consistent sleep will worsen every other aspect of your TM! If too much energy is exerted due to changes in walking, physical therapy can help identify better body mechanics that will help conserve energy. When nothing else can be identified as contributing to fatigue, the patient should REST! Conserving energy such that activities are planned and paced can allow for these activities to be more enjoyable rather than stressful. Also, reorganizing home and office can help to reduce the amount of wasted energy exerted so that energy can be saved up for activities you really enjoy. Also, patients need to remember to incorporate exercise routines into their day, which can actually help build stamina and reduce fatigue in the long run – it’s also a great stress reducer! Pilates, yoga, and swimming are great, but the key is to find something the patient enjoys and will stick to... but without overdoing it!
Changes in sensation often occur in patients with TM. This can occur in the form of lack of sensation, or numbness, as well as in the form of painful sensations called neuropathic pain. This pain is described in many different ways, including burning, squeezing, stabbing, or tingling. Having the sensation of pain means the nerve signal is getting through, but in an inappropriate way. While this can get better over time, there is a long list of medications to treat these symptoms so patients aren’t suffering through it. The same medication doesn’t work for everyone, so the trial and error of finding the right medication can be frustrating. Alternative therapies such as acupuncture and meditation have also been utilized, with varying success.
Keep in mind that while the body of a patient with TM is constantly working toward repair, once damage is done to the central nervous system, there will always be symptoms associated with such damage. An example of this occurs clinically when patients re-experience fluctuations of old symptoms, particularly in the setting of infection, stress, heat, menstrual cycle, or anything that increases core body temperature or throws the body off of its normal course. It is important to note that this is not inflammatory driven and therefore in no way represents worsening of the disease.
To make an appointment or request a consultation, please call 410-502-7099, option 1.
Request an Appointment
To request an appointment or refer a patient, please contact the Johns Hopkins Transverse Myelitis Center at 410-502-7099, option 1.
Request an Appointment
Adult Neurology: 410-955-9441
Pediatric Neurology: 410-955-4259
Adult Neurosurgery: 410-955-6406
Pediatric Neurosurgery: 410-955-7337
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