Charles Levy, M.D.
Medical treatment for people with TM can be
divided into three phases. The first is the acute phase which might last from
days to weeks. This phase begins when a person first falls ill. Typically, that
person would go to a physician for help, and the medical community would try to
discover what is wrong and try to fix it. If the problem was a broken bone in
the leg, this process would usually be relatively simple.
X-rays would be taken, and the bone would be set or casted, if
needed. In the case of transverse myelitis, a person would probably be
hospitalized and have lots of tests taken, including
blood tests,
magnetic resonance imaging (MRI's), orcomputed tomography (CT or CAT) scans. A "spinal tap" might be performed to analyze the cerebrospinal fluid. Depending on the seriousness of the illness, a catheter might be inserted into the bladder to help drain urine,
and a breathing tube might be inserted to help with respiration. During this
time, a cause might be found and specific treatment tried, or no cause might be
found. In this case, sometimes intravenous (IV) steroids may be given. Some
people will recover completely. Many others will be left with lasting deficits
and will need help learning how to live their lives.
After the acute phase,
people with TM enter a rehabilitation phase. During this time, the focus of care
shifts from trying to find a cause and treatment to learning to live with a
terrible disease. Two types of accommodations must take place. First, there is
coming to terms psychologically. Here a person might feel the stages of grieving
as if someone had died. The loss that a person with TM feels is real. Abilities
that all healthy people take for granted vanish. Even the simplest tasks become
effortful. Feelings of sadness, rage, grief, remorse, and guilt are not unusual.
The task confronting the person with the disease is to rebuild his or her life.
Most people base their self-worth, value, and satisfaction in living, at least
partially, on what they are able to accomplish every day. When a person's
self-sufficiency and independence are damaged, that person must rebuild an
identity that allows the person to feel proud and whole from a new set of
standards. Likewise, the family and loved ones are challenged to rebuild their
relationship to the injured person. This can be excruciatingly difficult, yet
many people accomplish this successfully. Despite the multitude of sorrows,
there are often unexpected joys, such as finding support from those who were
thought unsympathetic or unavailable, and finding talents that were hidden.
Although I am not disabled myself, it is my impression that this accommodation
is a lifelong task. Resources that might make this adjustment easier are
psychological assistance from a counselor, discussions and meetings with
religious leaders and congregations, and making contact with other people who
have experienced the same or similar disease or injury.
The second set of
adaptations is physical. I am not aware of medical literature specifically
dealing with rehabilitation after transverse myelitis. However, much has been
written regarding recovery from spinal cord injury (SCI), in general, and I
think that this literature applies. The physical issues include bowel and
bladder management,
sexuality, maintenance of skin
integrity,
spasticity, activities of daily living (i.e., dressing), mobility,
and
pain.
Of primary importance is the
level at which the spinal cord has been injured. The
spinal
cord is typically divided into four sections: the
highest is the
cervical (neck) region; then in descending order are the
thoracic (chest),
lumbar (low back), and sacral (lowest back) regions. Nerve roots
exiting the cervical cord carry messages from the brain to the arms, thoracic to
the chest and abdomen (i.e., the belly), lumbar to the legs, and sacral to the
leg below the knee and bowel, bladder, and sexual organs. Because the nerves
must travel through the spinal cord to connect with the brain, an injury to the
spinal cord at a particular level usually effects function at that level and
below. Therefore, a person affected at a specific thoracic level would typically
have function disrupted in trunk balance (the thoracic nerves), as well as
problems with leg movement and bowel and bladder control which are supplied by
the lumbar and sacral regions of the spinal cord.
The bladder is controlled
by nerves exiting the low thoracic, high lumbar, and mid sacral spinal cord.
Bladder function may thus be impaired in SCI. Two general problems can affect
the bladder. The bladder can become overly sensitive, and empty after only a
small amount of urine has collected, or relatively insensitive, causing the
bladder to become over extended and overflow. An overly distended bladder
increases the likelihood of urinary tract infections and, in time, may threaten
the health of the kidneys. Depending on the dysfunction, treatment options
include timed voiding, medicines, external catheters for males (a catheter
connected to a condom), padding for women, intermittent internal
catheterization, or an indwelling catheter. Surgical options may be appropriate
for some people.
A common problem in spinal cord injury is difficulty with
evacuation of stool, although fecal incontinence can also occur. The neurologic
pathways for defecation are similar to those of the bladder. Many lacking
voluntary control of the bowel may still be able to achieve continence by diet,
strategic use of stool softeners and fiber, and the technique of rectal
stimulation. In rectal stimulation, a finger is inserted into the rectum to
cause the internal and external anal sphincters to relax allowing the stool to
pass. Other aids include suppositories and oral medications. There are some
surgical options, although this is rarely necessary.
Sexuality is a complex
issue. The bad news may be that sexual experience is impacted by spinal cord
injury. Genital function is often altered (i.e., difficulties with erection and
ejaculation for men and difficulties with lubrication for women). The good news
is that sensual experience and even orgasm are still possible. Lubricants and
aids to erection and ejaculation (for fertility) are available. Many individuals
with SCI find unexpected erogenous zones. Ultimately, sexual experience happens
in the brain, not in any specific organ. Adjustment to altered sexuality is
aided by an attitude of permissive experimentation, as the previous methods and
habits may no longer serve.
At The Ohio State University Medical Center, a
nursing clinic is dedicated to provide practical help in matters of bowel,
bladder, and sexuality for people with disabilities.
Skin breakdown occurs
if the skin is exposed to undo pressure for a sufficient amount of time. Skin
integrity is maintained in people without disabilities by two related
mechanisms. First, the able-bodied have sensation, so that if they sit in one
position for too long, they get uncomfortable. Secondly, they have the strength
to shift position as necessary. Either or both of these mechanisms can be
impaired in SCI. Sitting position should be changed at least every 15 minutes.
This can be accomplished by standing, by lifting the body up while pushing down
on armrests, or by just leaning and weight shifting. Wheelchairs can be supplied
with either power mechanisms of recline or tilt-in-space to redistribute weight
bearing. A variety of wheelchair cushions are available to minimize sitting
pressure. Redness that does not blanch when finger pressure is applied may
signal the beginning of a pressure ulcer. Good nutrition, vitamin C, and
avoidance of moisture all contribute to healthy skin. Pressure ulcers are much
more easy to prevent than to heal.
When the spinal cord is injured, muscle
groups below the level of injury may become spastic. This manifests as stiffness
and resistance to movement. They may also become hyper-reflexic and jerk when
touched or hit. The cause of this is not fully understood. The management of
spasticity must always be based on the person's function. For example, some
people with TM will use the spasticity in their legs to help them walk. If this
is treated, they may lose this ability. In contrast, someone whose spasticity
prevents them from sitting in a wheelchair must be treated. If there has been a
recent increase in spasticity, it is important to search for a cause. Noxious
stimuli such as ingrown toenails, urinary tract infections, bowel impaction,
kidney or gallbladder stones must be suspected.
Medical treatment of
spasticity centers around four medications.
Baclofen (Lioresal) is thought to
inhibit reflex activity. It is considered the drug of choice for spasticity due
to spinal cord injury. It is generally well-tolerated although it can be
sedating. Abrupt discontinuation of baclofen can cause seizures and
hallucinations. Diazepam (Valium) works by a
similar mechanism, but is more likely to be sedative, and has been implicated in
slowing recovery from brain injury. Dantrolene sodium (Dantrium)
affects the muscles directly. While it is considered to be the drug of choice to
treat spasticity due to brain injury, it may also play a role as an adjunct in
the treatment of SCI spasticity. Tizanidine (Zanaflex) is a new drug
to the
reduces spasticity by a different mechanism than baclofen or dantrium and is
generally well tolerated. Because it is more expensive than baclofen, and
because most
the first choice.
Individuals with TM may find ordinary tasks such as
dressing, bathing, grooming, and eating very difficult. Many of these obstacles
can be mastered with training and specialized equipment. For example, long
handled sponges can make bathing easier as can grab bars, portable bath seats
and hand-held shower heads. For dressing, elastic shoe laces can eliminate the
need to tie shoes while other devices can aid in donning socks. Occupational
therapists are specialists in assessing equipment needs and helping people with
limited function perform activities of daily living. A home assessment by an
experienced professional is often helpful.
Physical therapists assist with
mobility. Besides teaching people to walk and transfer more easily, they can
recommend mobility aids. This includes everything from canes (single point vs.
small quad cane vs. large quad cane) to walkers (static vs. rolling vs.
rollator) and braces. For a custom-fabricated orthotic (brace), an orthotist is
necessary. Careful thought should go into deciding whether the brace should be
an ankle-foot orthosis, whether it should be flexible or stiff, and what angle
the foot portion should be in relationship to the calf portion. Some will
benefit by a knee-ankle foot orthosis.
Each person should be evaluated
individually. I believe that the best results occur when the team is coordinated
by a physician so that the therapists and orthotists are united with the patient
on what is to be achieved. The physician best trained to take this role is the
physiatrist.
Pain is common following SCI. The first step in treating pain
effectively is obtaining an accurate diagnosis. Unfortunately, this can be very
difficult. Causes of pain include muscle strain from using the body in an
unaccustomed manner, nerve compression (i.e., compression of the ulnar nerve at
the elbow due to excessive pressure from resting the elbow on an armrest
continuously) or dysfunction of the spinal cord from TM. Muscle pain might be
treated with analgesics, such as
acetaminophen (Tylenol), non-steroidal, anti-inflammatory drugs such
as
naproxen or
ibuprofen (Naprosyn, Aleve, Motrin), or modalities such as heat or
cold. Nerve compression might be treated with repositioning and padding (i.e.,
an elbow pad for an ulnar nerve compression).
Nerve pain from the spinal cord is
sometimes called "dysasthetic pain". Because of the SCI due to TM, nerve
messages traveling through the spinal cord may become scrambled and
misinterpreted by the brain as pain. Besides the treatments listed above,
certain antidepressants such as
amitriptyline (Elavil), or anticonvulsants, such as
carbamazepine,
phenytoin, or
gabapentin (Tegretol, Dilantin, Neurontin) may be helpful. Stress and
depression should also be addressed since these conditions make pain harder to
tolerate.
This brief overview is not meant to include all possible areas of
concern. I am grateful for the editing provided by Cindy
Gatens.
Dr. Levy is an Assistant Professor, Department of Physical
Medicine and Rehabilitation at The Ohio State University. Dr. Levy also serves
as the Directors of Orthotics and Prosthetics Clinic, Seating and Positioning
Clinic, and Stroke and Orthopedic Rehabilitation of the Department of Physical
Medicine and Rehabilitation at The Ohio State University. He received his
medical degree from The Ohio State College of Medicine. Dr. Levy served his
residency in Physical Medicine and Rehabilitation at the Rehabilitation
Institute of
Transverse
Myelitis Care ( Long Term )
Many patients with transverse myelitis will
require rehabilitative care to prevent secondary complications of immobility and
to improve their functional skills. It is important to begin occupational and
physical therapies early during the course of recovery to prevent the inactivity
related problems of skin breakdown and soft tissue contractures that lead to
loss of range of motion. 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. Assessment and fitting for
splints designed to passively maintain an optimal position for limbs that cannot
be actively moved is an important part of the management at this
stage.
The long term management of TM requires
attention to a number of issues. These are the residual effects of any spinal
cord injury, including TM. In addition to chronic medical problems, there are
the ongoing issues of ordering the appropriate equipment, re-entry into the
school (for children) and community, and coping with the psychological effects
of this condition on the patients and their families.
Spasticity is often a very difficult
problem to manage. The key goal is to remain flexible with a stretching routine
using exercises for active stretching and a bracing program with splints for a
prolonged stretch. These splints are commonly used at the ankles, wrists or
elbows. An appropriate strengthening program for the weaker of the spastic
muscle acting on a joint and an aerobic conditioning regimen are also
recommended. These interventions are supported by adjunctive measures that
include anti-spasticity drugs (e.g. diazepam, baclofen, dantrolene, tiagabine),
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.
Another major area of concern is effective
management of bowel and bladder function. A high fiber diet, adequate and timely
fluid intake, medications to regulate bowel evacuations, and a clean
intermittent urinary catheterization are the basic components to success.
Regular evaluations by medical specialists for urodynamic studies and adjustment
of the bowel program are recommended to prevent potentially serious
complications.
Below you will find lists of rehabilitation principles.
These are not intended for patients to initiate themselves. It may be helpful,
however, to discuss these with your physician when determining the best
long-term approach to managing your TM.
Chronic Management of Patients with TM, Early
Rehabilitation Principles (weeks to months)
General:
- Rehabilitation is critical.
- Strongly consider inpatient rehabilitation.
- Daily land based and/or water based therapy for 8-12 weeks.
- Daily weight bearing for 45-90 minutes. Standing frame if
non-ambulatory. - bone densitometry: Vitamin D, Calcium.
- Look for depression and treat if interfering with
rehabilitation.
Bladder Dysfunction:
- Assess ability to void spontaneously.
- Avoid bearing down to initiate urination (crede) since this may
be dangerous. - Check post void residual. If >80cc, consider clean
intermittent catheterization (goal less than 400 cc volumes). - Cystometrogram not required in acute phase
Anticholinergic
Rx if sig. urgency. - Cranberry juice for urine acidification.
Bowel Dysfunction:
- High fiber diet.
- Increased fluid intake.
- Digital disimpaction.
- Bowel program: colace, senokot, dulcolax, docusate PR, bisacodyl
in a water base, miralax, enemas PRN.
Weakness:
- Strengthening program for weaker muscles.
- Passive and active
- PT/OT consultation.
- Splinting or orthoses when necessary.
Pain or Dysesthesias:
- ROM exercises.
- Gabapentin.
- Carbamazepine.
- Nortriptyline.
- Tramadol.
- Avoid narcotics if possible.
Spasticity:
- ROM exercises.
- Aquatherapy.
- Baclofen.
- Tizanidine.
- Diazepam.
- Botulinum toxin.
- Tiagabine.
Chronic Management of Patients with
TM, Late Rehabilitation Principles (months to years)General:
- Avoid secondary complications.
- Examine for scoliosis in patients with high/severe lesions.
- Serial flexion/extension x-ray of back to follow angle.
- Skin hygiene to avoid breakdown .
- Treat fatigue: Amantidine, Methylphenidate, Modafinil, CoQ10.
- Bone densitometry: Vitamin D, Calcium, Bisphosphanate therapy.
- Consider and treat depression.
Bladder Dysfunction:
- Urodynamics study for irritative or obstructive symptoms.
- Anticholinergic drug if detrusor hyperactive: extended release
Ditropan or Detrol. - Adrenergic blocker if sphicter dysfunction: Flomax, etc.
- Clean intermittent catherterization is safe for long term.
- Cranberry juice/Vitamin C for urine acidifcation.
- Consider sacral nerve stimulation.
Bowel Dysfunction:
- High fiber diet.
- Increased fluid intake
- Digital disimpaction.
- Bowel med program: colace, senokot, dulcolax, docusate PR,
bisacodyl in a water base, miralax, enemas PRN.
Sexual Dysfunction:
- Phosphodiesterase V inhibitors.
Weakness:
- Strengthening program for weaker muscles.
- Passive and active
- Splinting or orthoses when necessary.
- Continued land-based and water based therapy.
- Ambulation devices when appropriate.
- Daily weightbearing for 45 ?90 minutes. Standing frame if
non-ambulatory. - Orthopedics evaluation if joint imbalance.
Pain or Dysesthesias:
- ROM exercises.
- Gabapentin.
- Carbamazepine.
- Nortriptyline.
- Tramadol.
- Topical lidocaine (patch or cream).
- Intrathecal baclofen or opioids.
Spasticity:
- ROM exercises.
- Aquatherapy.
- Baclofen.
- Tizanidine.
- Diazepam.
- Botulinum toxin.
- Tiagabine .
- Intrathecal baclofen trial.
