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Post-Polio Health (ISSN 1066-5331)

Vol. 8, No. 2, Spring 1992

Read selected articles from this issue ...

Special Feature: Scoliosis

"Sir Benjamin Buzz"
Doris S. Benedict, Deposit, NY

Exploring Your Options
Linda Bieniek, CEAP, Chicago, IL

National Polio Research Coalition Springs into Action

Results of Australian Questionnaire

Leaders & Readers Write

Post-Polio Bibliography


SPECIAL FEATURE: SCOLIOSIS

Two polio survivors experiencing scoliosis share their insights in this issue. The next Polio Network News will feature information from Serena S. Hu, M.D., Department of Orthopedic Surgery, University
of California–San Francisco.

"Sir Benjamin Buzz"

Doris S. Benedict, Deposit, NY

      One day the snowman, Sir Benjamin Buzz
      He started to melt as a snowman does.
      Down ran the crown of his icicled hat
      Over his forehead and right after that
      He noticed his whiskers go lolloping by
      Along with his chin and his collar and tie.
      Then Benjamin looked and saw that his chest
      Was gliding through his coat and his vest.
      And after a little he sighed, "Ho! Hum!
      There goes a finger and there goes a thumb!"
      And scarce had he spoken when Benjamin felt
      That both of his legs were beginning to melt ..."
                                    
–Mildred Plew Meigs

When asked about information on scoliosis the above children's poem floats into my consciousness. Why that's us! The analogy is obvious to those of us who are experiencing post-polio syndrome as well as degenerative scoliosis.

I volunteered to assist the International Polio Network in locating fellow survivors for their anecdotes and solutions. What began as a survey, developed into an impassioned mission, an urgency to share gathered information and feelings. Had I known many years ago some of the things I know now, I would not have wasted time, money, and energy going to "specialists" not equipped to understand the quirks of a polio survivor, nor capable of offering solutions. I hope my polio friends far and wide, as well as members of my own support group who shared their stories, will gain more insight into the problem of scoliosis.

SCOLIOSIS AND ITS CONSEQUENCES

illustration of curved spineScoliosis is the sideways curve of the spinal column that results in an "S" shape to the back. Scoliosis can be recognized by one shoulder being higher than the other, one shoulder appearing more prominent than the other, and an uneven waistline. Scoliosis can be the result of a neuromuscular disease, i.e., infantile paralysis (poliomyelitis). Muscle weakness was not always recogthe viral infection. The enervanizable after the acute stage of the viral infection. The enervation (loss of nerve cells) was sometimes insidious and slow in producing the pronounced curvature. This worsening curve can be accompanied by a twisting of the skeletal frame and the onset of serious breathing problems due to compression of the diaphragm. Scoliosis can be further aggravated by the lack of functioning abdominal muscles.

The consequences of scoliosis are instability; back, shoulder, and chest pain; gastrointestinal and urinary tract complaints; little endurance for daily tasks; exhaustion; and weakness of the arms.
Survivors with scoliosis may experience restless sleep and/or sleep apnea, breathing problems, swallowing difficulty, and trouble with voice projection. Profuse sweating may also occur, usually caused by labored respiration.

After the acute polio, the damaged motor units around the spine sprouted new axons, thereby re-energizing the muscle function and aiding the stability of the spine and skeletal frame. Reports
circulating recently state that sprouted axons are dying off, having been overworked through the years. The overuse and compensating strategies practiced by survivors through the years have put even more stress on remaining motor units. Not able to function anymore, they simply die off resulting in weaker muscles. The spinal vertebrae alone cannot support the individual's body.

There is no way to stop the progression of scoliosis in an adult without surgical intervention. A few years ago surgery candidates were thought to be limited to those under 40 years of age. This is no longer true. The purpose of surgery is to lessen the curve of scoliosis by manipulating the spine to a more normal position and thereby alleviating pain. One method is to insert metal rods along the spine and bone grafts are used to fuse these rods to the spine. Sometimes this approach involves two operations: one for the front and the other for the back of the spine.

Consultation with a knowledgeable orthopedist, who "speaks polio," is extremely important. If an
orthopedic surgeon recommends a fusion, two or three opinions are suggested. The overall problem must be considered; one problem hinges upon another in polio.

THOUGHTS FROM RESPONDEES

In cases of childhood polio when curvature of the spine was evident, spinal fusions and rod implantations were often done when the child became an adolescent. For the most part these surgeries seemed to have been satisfactory. However, some respondents complained of weakening arm muscles, heart conditions, spinal degeneration, severe rib cage deformity, pain, and very poor respiration. They felt that their fusions were not advantageous over the long haul, nor did they provide sustained reduction of pain. In some cases, fusions were done to aid respiration but produced the opposite effect.

One respondee, when she called the hospital for a record of the number of fusions done by a surgeon who recommended her for one, found that the surgeon had done ONE such operation previously. She was unable to obtain a report on the success or failure of this surgery, or if the patient had had polio. Yet another survivor reported having three unsuccessful fusions and is trying for another. Hearty soul!

Another reported an unsuccessful fusion that did not heal or diminish the extreme pain; the surgery had to be undone. The consensus of those writing to me was that suffering through a variety of back braces, casts, and fiberglass contrivances throughout the years have contributed little or nothing toward arresting the rapid progression of scoliosis, or in diminishing the pain.

One survivor forseeing the threat of scoliosis stated that some time ago he ordered a back brace and has worn it since. He feels it staved off further damage.

Some individuals still wear the Hoke-type corset, nonetheless, the lumbar-sacro brace makes a very small contribution to stability and only somewhat aids breathing. The fancy and complicated body casts, suits of mail and various other medieval tortures, frequently with neck and chin braces, are swiftly rejected by most and put into closets. These are sometimes more painful than scoliosis itself: rubbing, bruising, digging, and adding to the wearer's instability. Recently an orthopedic surgeon commented that these cumbersome braces sometimes hinder proper ventilation. Well!

Most of the seating arrangements manufactured for our comfort and to correct improper postures were quickly challenged by most respondees. The "gel cushions" are difficult to manage and require constant kneading and adjustment. One would wish for a design similar to an automobile seat, mine seems to be posturally correct and comfortable. (I would hesitate to take the advice of a
so-called "health supplier." They are not trained to prescribe.)

Respondees recommended changing positions, rest, and massage. Light exercise and not allowing one's self to get stiff is important. Attention to good nutrition and weight loss will also help improve the proper handling of scoliosis. Various pain medications prescribed by physicians do help. These usually have to be tried for efficiency and correct dosage in handling the pain.

Photo of Doris Benedict writing.Respondees cautioned against carrying objects or standing for long periods of time. These acts will worsen the scoliosis.

BiPAPs, ventilators, and oxygen, among other aids, are sometimes used to assist difficulty in breathing. The thought of a ventilator strikes fear in most polio survivors and/or their families. (IPN can connect any reader with several polio survivors who have recently started using periodic or nighttime ventilation.) Tracheostomies are NOT usually performed now, and it is no longer necessary to have a trach in order to use a ventilator. Portable ventilators with appropriate masks are now available. Adjustment to a mouthpiece and/or nose mask for nighttime ventilation is quite simple.

Some also mentioned feelings of discouragement and potential depression stating that peer and family support were paramount.

Recent studies indicate that polio patients whocomply with various recommendations
made by their physicians, suffer no further deterioration. Those who reject the suggestions can show further decline. One realizes the things implied here. Health professionals give us valid prescriptions for "improved" quality of life. However, in talking with my polio survivor friends I have to wonder if the end justifies the means in the road we travel? Have we rewritten the Book of Job? Polio survivors should consider all of their options.

Now seems to be the time to carefully assess where we "old polios" are going and how we should get there, without dwelling on where we have been. Much soul searching is involved! Whoever said life was easy? Santayana said, "Life is not a festival or a feast, it is a predicament." I'll buy that!

Doris S. Benedict, Deposit, NY, is the leader of the Post-Polio Support. Group, Southern Tier of New York.

 

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