Unfortunately, only a handful of specialists treat Post-Polio
Sequelae (PPS) - the unexpected and often disabling fatigue, muscle weakness,
joint pain, cold intolerance and swallowing, sleep and breathing problems
occurring in America's 1.63 million polio survivors 40 years after their acute
polio.1,2 However, all medical
professionals need to be familiar with the neurological damage done by the
original poliovirus infection that today causes unnecessary discomfort,
excessive physical pain and occasionally serious complications after surgery.
This is a brief overview to inform patients and professionals about the cause
and prevention of complications in polio survivors undergoing surgery.
The pre-operative period is the most important, since it is when
polio survivors must establish communication with the surgical team. After the
second opinion and a polio survivor's decision to have surgery, the patient
needs to ask the surgeon to read this article and the references cited. Then,
surgical candidates must meet with the surgeon and anesthesiologist to discuss
in detail the patient's complete polio and general medical histories and the
problems that will likely arise before and during surgery, in the recovery room
and on the nursing floor. It is also recommended that the polio survivor meet
with the supervisor of nursing on the floor where he or she will be transferred
after surgery to discuss likely problems during the post-op and recovery
period.
Lungs. We recommend that all polio survivors have pulmonary
function studies as part of their pre-operative testing.3 This is vital for those who
had bulbar polio acutely, whether or not they used a respirator or an iron
lung. But, polio survivors who have (or had) neck, arm or chest muscle weakness
or have swallowing problems should also have their lung function tested so
there will be no unpleasant surprises coming off the respirator at the end of
the operation. Polio survivors with a lung capacity below 70% may need a
respirator or respiratory therapy after surgery.1
Of course, polio survivors who use a respirator during the day or
at night must discuss their respirator use and maintenance in detail with their
surgeon, anesthesiologist, the nursing staff and with their own pulmonologist
before admission to the hospital.
Physical Assistance. X-rays are a normal part of
pre-op testing. Because of workers' compensation concerns, many hospital staff
are not eager to move or lift patients. Unfortunately, X-ray and examining
tables are built at heights that are convenient for the professional, not the
patient. Many polio survivors cannot step on a stool to get onto a high table,
or even pull themselves over onto a table from a stretcher. Thus, polio
survivors must ask for help in transferring.
Since most polio survivors have no experience asking for help under
any circumstances, they need to find a phrase with which they are comfortable
that will communicate whatever their needs are. Long explanations about having
had polio or PPS or the specifics of which muscles are weak or paralyzed are
not necessary. For example, a simple, "My legs (arms) are paralyzed and I
can't get onto that table. I will need help." should suffice. This phrase
may have to be repeated before the polio survivor will be assisted. If the
professional replies, "Oh, I bet you can move by yourself if you
try!" or "Don't expect me to lift you", an appropriate response
is, "I cannot get onto the table. Please ask someone else to help me or
let me speak to your supervisor." A pleasant but steadfast refusal to do
difficult or dangerous transfers is the polio survivor's best defense against
injury before or after surgery.
General Anesthetics. Polio survivors are exquisitely sensitive
to anesthetic. It has been known for 50 years that the poliovirus damaged the
area of the brain stem - called the reticular activating system (RAS) -
responsible for keeping the brain awake.4,5 Because the RAS was damaged in
those who had paralytic and non-paralytic polio, a little anesthetic goes a
long way and lasts a long time.
For example, the pre-operative medication used to "calm"
surgical patients - often a combination of Valium(R) and Demerol(R) - may by
itself put polio survivors to sleep for 8 hours. Such excessive and prolonged
sedation does occur when I.V. Valium is used alone in patients undergoing
invasive but non-surgical procedures, like endoscopy.) Add to a pre-operative
"calming cocktail" an intravenous anesthetic (like sodium pentothol)
or a gaseous anesthetic, and polio survivors have been known to sleep for days.
In addition, polio survivors with respiratory problems may have trouble
clearing the gaseous anesthetics. A number of our patients have awakened from
anesthetic on a respirator in I.C.U. to the frightened faces of their family,
surgeon and anesthesiologist several days after surgery.
Here is the first rule of thumb - we call these "Rules of
2" - for polio survivors having surgery:
Anesthetic Rule of 2: Polio survivors need the usual
dose of anesthetic divided by two.
This first "rule of 2" is certainly not intended to
dictate the dose of anesthetic, but merely to remind anesthesiologists that
polio survivors need much less anesthetic than do other patients. This does not
mean that a given polio survivor might require less than half the typical dose,
or that another won't need more anesthetic. As always, the dose of anesthetic
must be individually adjusted (for body weight, lipid space, etc.) and be
adequate to keep patients under during surgery, but not cause them to sleep for
a week.
Even applying the "Anesthetic Rule of 2", polio survivors
may be very sedated, if not asleep, for many hours after the surgery. This is
one of the reasons why same-day surgery, even for complicated dental
procedures, is not advisable for polio survivors. Sleeping or excessively
sedated polio survivors cannot be expected to return home and take care of
themselves after same-day surgery, since surgical complications may go
unnoticed and sedation-impaired coordination makes falling likely. In spite of
HMO pressure, no polio survivor should have same-day surgery for any reason
except for the most simple procedures that require only a local anesthetic.
Nerve Blocks. However, there are also problems with local
anesthetics that numb only one area of the body. Spinal anesthetics, like
epidural or saddle blocks used for childbirth and lower body procedures, often
allow surgery without the patient being asleep, and are therefore more
desirable for polio survivors. However, the injection of a local anesthetic
near the spine results in both pain-conducting nerves and motor neurons being
anesthetized. Polio survivors are very sensitive to anything that further
impairs their poliovirus-damaged motor neurons, and a spinal anesthetic may
cause polio survivors to be paralyzed for many hours. If a spinal anesthetic is
used, polio survivors cannot be expected to get up and walk after surgery.
Curare-like drugs that are intended to paralyze muscles (e.g.
succinylcholine) are typically used during major surgery to relax muscles that
are going to be cut and make it easier for the ventilator to fill the lungs
while patients are on the table. Again, any drug that interferes with muscle
functioning will prevent polio survivors from walking or even moving for hours
longer than it would for patients who didn't have polio.
Regardless of whether a local, spinal or general anesthetic is
used, the following applies:
Post-Anesthetic Rule of 2: Polio survivors require two times
as long to recover from the effects of any anesthetics.
Blood and Guts. There are yet additional concerns. Polio survivors
with muscle atrophy, especially in the thigh muscles, will have a smaller blood
volume than would be expected for their height or weight. Therefore, bleeding
during surgery may be more of a problem. Polio survivors may want to bank their
own blood slowly over the course of weeks, even for procedures where excessive
blood loss is not typically expected. However, since polio survivors may be
significantly more fatigued and prone to faint after giving blood, relatives'
blood may need to be banked instead.
Also, polio survivors can be sensitive to atropine-like drugs used
to dry secretions during surgery.6
Atropine-like drugs also slow the gut, and polio survivors may be excessively
constipated after surgery, or, rarely, actually have their intestines stop
moving (paralytic ileus) for a period of time. These problems can be treated
symptomatically, as they would in someone who did not have polio.
Positioning. One overlooked problem is positioning of the
post-polio patient on the operating table. Muscle atrophy, scoliosis and spinal
fusions may make certain positions problematic, especially those involving
extension of the spine. Since the polio survivor is usually unconscious during
positioning, there will be no report of pain that would normally warn of
potential damage. A number of polio survivors have experienced severe back pain
for months post-op, and even permanent traction injuries of nerves, after being
placed for hours in damaging positions. It would be advisable for the patient
to be awake during positioning on the table to prevent such post-op
complications.
Cold. If the dose of anesthetic is carefully regulated, a
polio survivor's first post-op experience will be waking in the recovery room.
Often, polio survivors awaken from anesthetic shivering violently. Research has
shown that polio survivors are extremely sensitive to cold because they have
difficulty regulating their body temperature. Polio survivors' automatic
(autonomic) nervous systems were damaged by the poliovirus from the brain
(hypothalamus) through the brain stem (reticular formation and vagal nuclei) to
the spinal cord (intermediolateral columns).4,8 Polio survivors cannot control
the size of their blood vessels, since the nerves that make the smooth muscles
around veins and capillaries contract were paralyzed by the polio virus.
Therefore, polio survivors' blood vessels open under anesthetic and dump the
heat of their warm blood into the cold recovery room. Recovery room nurses need
to know about this problem and help polio survivors stay warm. Additional
blankets will help, and the surgeon can even write an order for a heated water
blanket to be used in recovery.
Vomiting. Another post-op problem relating to brain stem
damage is vomiting. As in anyone who receives a general anesthetic, polio
survivors can develop nausea and vomit. However, polio survivors are more apt
to faint (have vasovagal syncope and even brief asystoles) when they attempt to
vomit.6 It is very important
that post-operative emetic control be discussed with the anesthesiologist and
administered before polio survivors go to the recovery room and additional
medication is written as needed in the post-op orders.
Choking. Another concern is difficulty swallowing as the
patient is awakening.9 Polio
survivors who are aware of having swallowing problems, and sometimes those
without apparent swallowing difficulty, cannot clear secretions and may choke
(or feel like they are choking) when they are lying on their backs, still half
asleep, as the anesthetic is clearing. Polio survivors' secretions need to be
monitored in the recovery room and they should be positioned on their side, if
possible, so that secretions can drain.
Pain. The single most troublesome problem after surgery is
pain control. A number of studies have shown that many surgical patients are
under-medicated for pain. Under-medication is a serious problem for the
post-polio patient since two research studies have shown that polio survivors
are twice as sensitive to pain as those who didn't have polio. Increased pain
sensitivity is apparently related to poliovirus damage to endogenous
opiate-secreting cells in the brain (paraventricular hypothalamus and
periaqueductal gray) and spinal cord (Lamina II of the dorsal cord).4,8
Rule of 2 for Pain: Polio survivors need two times
the dose of pain medication for twice as long
Since polio survivors are known to be extremely stoic, they are not
likely to abuse or become dependent upon narcotics.
In keeping with the "get 'em up, move 'em out" trend in
medicine, there will be the tendency to get polio survivors up and walking
almost immediately after surgery. This is not advisable for a number of
reasons. When polio survivors reach the nursing unit, they may still be twice
as sedated from the anesthetic as other patients. Since polio survivors need a
very clear head to be able to control their weakened, polio-affected muscles to
stand and walk, a fuzzy-headed polio survivor is at serious risk for falling.
Even if a polio survivor's head is clear, the anesthetic or other
drugs may have temporarily weakened or even paralyzed the muscles needed to
stand and walk. What's worse, the surgery may have cut muscles (especially
abdominal muscles) that substitute for muscles paralyzed by polio (it is often
muscle substitution that allows polio survivors to stand and walk, even though
the muscles that are typically needed to walk were permanently paralyzed). Not
only will post-polio patients be unable to stand or walk, they may also be
unable to even move to position themselves in bed. Polio survivors may also
have low blood pressure after surgery that could itself cause light-headedness,
fainting and falls.
Rule of 2 for Recovery: Polio survivors should stay in
bed two times longer than other patients.
Under any circumstances, polio survivors should get up slowly,
first sitting up in bed, then sitting with feet dangling, then getting into a
bedside chair with assistance, then standing with assistance and appropriate
assistive devices. With the necessity of additional bed rest, anti-embolism
stockings to prevent blood clots may be a prudent precaution. Gentle physical
therapy in bed may be advisable to maintain range of motion and for stretching,
since polio survivors are prone to developing painful muscle spasms if they are
not up and moving.
Rule of 2 for Length of Stay: Polio survivors need to
stay in the hospital two times longer than other patients.
While polio survivors may become deconditioned with bed rest
somewhat faster than other patients, because of autonomic nervous system
damage, the dangers of getting them up and walking too quickly far outweigh
those of moving too slowly. Polio survivors have learned to be very aware of
what their bodies can and can't do. They are the best judge of when they can
move, stand and walk safely.
Nursing Care and Nurse Caring. Polio survivors often have
difficulty merely being in the hospital. They may have insomnia, anxiety and
even panic attacks. These symptoms are easy to understand when it is remembered
that as young children, polio survivors were ripped away from their families
and admitted to rehabilitation hospitals for months or even years.2,10,11 Post-polio children underwent
multiple surgeries and painful physical therapy, procedures administered
without explanation and certainly without their consent.
Many post-polio patients have had multiple experiences of
psychological, physical and even sexual abuse at the hands of hospital staff.
Questions or complaints about painful and frightening therapies were not
infrequently met by staff anger or punishment. Patients report having been
locked in dark closets overnight when they asked questions, spoke out or cried.
Necessary nursing care could be withheld for no apparent reason. Many
post-polio children were slapped and some were actually beaten with rubber
truncheons by physical therapists to "motivate" them to stand up and
walk.10
It is not surprising that polio survivors can be terrified of again
becoming powerless patients at the mercy of hospital staff. Nursing staff's
appreciation of the childhood trauma polio survivors experienced at the hands
of medical professionals, and taking a moment to actually listen and respond to
the real needs of the adult post-polio patient will go far toward making the
patient feel safer and more comfortable during their stay.
There is another "Rule of 2" when surgical patients
return home:
Rule of 2 for Work: Polio survivors need two times
the number of days of rest at home before they return to work or household
duties.
For all of the reasons described above, the entire recovery process
takes longer for polio survivors. It is not uncommon for typically
overachieving, hyperactive Type A polio survivors who were taught as children
to ``use it or lose it'' to return to work or household duties the day after
they return home from the hospital.10,11 Polio survivors must be
encouraged to rest and to return to activities slowly, especially if they are
somewhat deconditioned and feel weaker or more fatigued post-op. Polio
survivors should ask their surgeon for a note that allows them to stay home
from work twice as long as the typical patient.
Post-op PPS? The 1985 national survey of polio survivors has
shown that emotional stress is the second most frequent cause of PPS (after
physical overexertion).11
Certainly, there are few emotional or physical stresses more potent than
surgery. So polio survivors should expect some increase in fatigue and muscle
weakness resulting from the combination of the physical and emotional effects
of the surgery, anesthesia, other medications and bed rest. Only a handful of
post-polio patients permanently lose function after surgery. Strength or
endurance lost after surgery is typically recovered. To aid recovery, gentle
physical therapy may be advisable. Passive stretching, range of motion
exercises and slowly increasing endurance are more valuable than muscle
strengthening exercise which can actually cause muscle weakness. Especially if
a polio-affected part of the body has been operated on (stomach, back, arms or
legs), a physiatrist who is thoroughly knowledgeable and experienced about the
care of polio survivors and PPS should be consulted before surgery so that a
post-op rehabilitation plan can be in place. A short stay in a rehabilitation
hospital after surgery (especially after back or leg surgery) may make the
polio survivor's recovery safer, faster and more complete.
Rule of 2 for Feeling Better: Polio survivors need two
times longer to feel "back to normal" again.
All of the "Rules of 2" are suggestions for polio
survivors and the surgical team; they are not a substitute for specific
information about the individual patient or communication among all members of
the treatment team, including the patient. All polio survivors must be
evaluated and managed according to their individual needs. Please take the time
to read the references (especially those in bold type) so that you will be
fully knowledgeable about and able to help meet polio survivors' special needs.
Richard L. Bruno, Ph.D., is Director, Post-Polio Rehabilitation and
Research Service, Kessler Institute for Rehabilitation, Saddle Brook, NJ;
Associate Professor, Clinical Physical Medicine and Rehabilitation, New Jersey
Medical School/UMONJ; and Chairperson, International Post-Polio Task Force.
Reprinted with Permission.
1. Bruno,
R.L., Ultimate Burnout: Post-polio Sequelae Basics, New Mobility,
1996;7:50-59.
Give articles to nursing supervisor and discuss:
Meet with PPS physiatrist before surgery and
discuss: