Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) - the unexpected and often disabling fatigue, muscle weakness, joint pain, cold intolerance, swallowing, sleep and breathing problems - occurring in America's estimated 1 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.
PRE-OPERATIVE PREPARATION
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 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 they 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. 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 3 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, anaesthesiologist, 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 paralysed are not necessary. (For example, a simple "My legs (arms) are paralysed and I can't get onto table” or “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 defence against injury before or after surgery.
General Anaesthetics
Polio survivors are exquisitely sensitive to aesthetics. 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 (1 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016) and non-paralytic polio, a little anaesthetic goes a long way and lasts a long time. For example, the pre-operative medication used to "calm" surgical patients - sometimes Valium or Vistaril - may by itself put polio survivors to sleep for 8 hours. (Such excessive and prolonged sedation does occur when low-dose Propofol is used alone in patients undergoing invasive but nonsurgical procedures, like endoscopy.) Add to a pre-operative "calming cocktail" an intravenous anaesthetic (like sodium pentothal) or a gaseous anaesthetic, and polio survivors have been known to sleep for days. Propofol is the drug of choice for polio survivors. In addition, polio survivors with respiratory problems may have trouble clearing the gaseous anaesthetics. A number of our patients have awakened from anaesthetic on a respirator in I.C.U. to the frightened faces of their family, surgeon and anaesthesiologist several days after surgery.
Here is the first of rule of thumb - we call "Rules of 2" – for polio survivors having surgery:
Anaesthetic Rule of 2: Polio survivors need the typical dose of anaesthetic divided by 2.
This first "Rule of 2" is certainly NOT intended to dictate the dose of anaesthetic, but merely to remind anaesthesiologists that polio survivors need much less anaesthetic than do other patients.
This does not mean that a given polio survivor might require less than 1/2 the typical anaesthetic dose, or that another won't need more anaesthetic. As always, the dose of anaesthetic 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. We have found Desflurane to be the best tolerated anaesthetic when used with BIZ brain wave monitoring.
Even applying the "Anaesthetic 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 insurance company pressure, NO POLIO SURVIVOR SHOULD HAVE SAME-DAY SURGERY except for the simplest procedures that require only a local anaesthetic.
Nerve Blocks
However, there are also problems with local anaesthetics that numb only one area of the body. Spinal anaesthetics, 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 anaesthetic near the spine results in both pain-conducting nerves and motor neurons being anaesthetised. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons and a spinal anaesthetic may cause polio survivors to be paralysed for many hours. If a spinal anaesthetic is used, polio survivors cannot be expected to get up and walk after surgery. Curare-like drugs that are intended to paralyse 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 anaesthetic is used, the following applies:
Post-Anaesthetic Rule of 2: Polio survivors require 2 times as long to recover from the effects of any anaesthetics.
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, relative's 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, in some cases, actually have their stomachs and intestines stop (2 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016) moving (gastroparesis; 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 the 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.
POST-OPERATIVE
Cold
If the dose of anaesthetic is carefully regulated, a polio survivor's first post-op experience will be waking in the recovery room. Often, polio survivors awaken from anaesthetic 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 damage 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 muscle around veins and capillaries contract were paralysed by the poliovirus. Therefore, polio survivors' blood vessels open under anaesthetic 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 related to brain stem damage is vomiting. As in anyone who receives a general anaesthetic, polio survivors can develop nausea and vomit. However, polio survivors are more apt to faint (have vasovagal syncope and even brief asystole’s) when they attempt to vomit. 6 It is very important that post-operative emetic control be discussed with the anaesthesiologist and administered before polio survivors go to the recovery room and that additional medication is written as needed in the post-op orders.
Choking
Yet another concern is difficulty swallowing as the patient is awakening. 9 Polio survivors who are aware of having swallowing problems, and sometimes in 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 anaesthetic 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. 8 Increased pain sensitivity is apparently related to poliovirus damage to endogenous opiate-secreting cells in the brain (Para ventricular hypothalamus and periaquiductal gray) and spinal cord (Lamina II of the dorsal cord). 4,8
Rule 2 for Pain: Polio survivors need 2 times the dose of pain medication for 2 times as long. Polio survivors are known to be extremely stoic and are very unlikely to abuse or become dependent upon narcotics.
RECOVERY
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 anaesthetic as are 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 fuzzyheaded polio survivor is at serious risk for falling. Even if a polio (3 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org
Rev. 2016) survivor's head is clear, the anaesthetic or other drugs may have temporarily weakened or even paralysed the muscles needed to stand and walk. What's worse, the surgery may have cut muscles (especially abdominal muscles) that substitute for muscles paralysed by polio (it is often muscle substitution that actually allows polio survivors to stand and walk, even though the muscles that are typically needed to walk were permanently paralysed). 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 2 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 finally walking with assistance and appropriate assistive devices. With the necessity of additional bed rest, anti-embolism stockings and medication 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 2 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 judges 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 have 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 often 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.
RETURNING HOME (There is another Rule of 2 for Returning Home):
Rule of 2 for Work: Polio survivors need 2 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, 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. (4 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016)
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 stressor 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, anaesthesia, other medications, and bed rest.
However, only a handful of post-polio patients permanently lose function after surgery. Strength or endurance lost after surgery are 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 polio survivors recovery safer, faster and more complete. Polio survivors need to remember the:
Rule of 2 for Feeling Better: Polio survivors need 2 times longer to feel "back to normal" again.
CONCLUSION
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 and 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 following references so that you will be fully knowledgeable about and be able to help meet polio survivors' special needs.
Polio survivors pre-op checklist
Give this list of the articles in this article to your surgeon and discuss:
· Pre-op lung tests with measuring of carbon dioxide.
· Possibly having lower blood volume and blood banking or bloodless surgery?
· Authorization for a longer stay in the hospital if needed.
· Orders for post-op anti-vomiting medication.
· Positioning and cushioning on the table during surgery.
· Orders for staying warm in the recovery room.
· Difficulty clearing secretions in the recovery room and on the nursing unit.
· Orders for increased dose of pain medication.
· Physical therapy for stretching and range of motion in hospital.
· Placing articles about polio in the medical chart.
RREFERENCES
1) Bruno RL. Ultimate burnout: Post-polio sequelae basics. New Mobility, 1996; 7: 50-59.
2) Frick NM, Bruno RL. Post-Polio Sequelae: Physiological and psychological overview. Rehabilitation Literature, 1986; 47: 106-111.
3) Bach JR, Alba AS. Pulmonary dysfunction and sleep disorder breathing as post-polio sequelae: Evaluation and management. Orthopedics, 1991; 14: 1329-1337.
4) Bodian D. Histopathological basis of clinical findings in poliomyelitis. Am J Med. 1949; 6: 563-578.
5) Bruno RL, Frick NM, Cohen J. Polioencephalitis, stress and the etiology of Post-Polio Sequelae. Orthopedics, 1991; 14: 1269-1276.
6) Bruno RL, Frick NM. Parasympathetic abnormalities as post-polio sequelae. Archives of Physical Medicine and Rehabilitation, 1995; 76: 594.
7) Bruno RL, Johnson JC, Berman WS. Vasomotor abnormalities as Post-Polio Sequelae. Orthopedics, 1985; 8:865-869.
8) Bruno RL, Johnson JC, Berman WS. Motor and Sensory Functioning with Changing Ambient Temperature in Post- Polio Subjects. In LS Halstead and DO Wiechers (Eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985
9) Bucholtz DW, Jones B. Post-Polio dysphagia: Alarm or caution. Orthopedics, 1991; 14: 1303-1305.
10) Bruno RL, Frick NM. The psychology of polio as prelude to Post-Polio Sequelae: Behavior modification and psychotherapy. Orthopedics, 1991; 14: 1185-1193.
11) Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of Post-Polio Sequelae. In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987. 6 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016