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Post-Polio Health (ISSN 1066-5331)

Vol. 8, No. 2, Spring 1992

 

Exploring Your Options

Linda Bieniek, CEAP, Chicago, IL

Because surgical treatment of my kypho-scoliosis succeeded not only in straightening my spine by seven inches, but more importantly, in improving my quality of life and increasing my longevity, I want others to know about this treatment option.

When I was five, I developed polio that impaired my respiratory functioning and extremities. By the time I was six, my spine began curving. At age seven, I underwent spinal surgeries and laid flat
on my back in a full length body cast for a year to prevent the curvature from progressing.

Despite these childhood surgeries, my curvature measured 170 degrees by the time I was 25. My left hip touched my armpit, leaving my left lung compressed. My breathing was so restricted, I gasped in between words. My ribs protruded in front and rotated to create a huge hump on my back. My chin lay on my chest. I walked with a significant limp because my leg lengths differed by over two inches.
I often struggled to function and endured incredible pain, yet I was so driven to achieve certain goals that I ignored my body's distress.

After almost dying from a bout of pneumonia in 1973, I researched my options. I traveled across the country and consulted with surgeons and specialists. I read medical articles and talked with others. I deliberated – I prayed.

I believed that if my spine was straightened, my breathing would improve. It seemed logical to me because when I braced my arms on the top of a church pew, I was able to take a deeper breath and
feel relief.

I decided to undergo high-risk surgery because I wanted to live – to experience and contribute more to life. I chose a team of highly skilled professionals who used a combination of traction and
surgeries to straighten my spine. For me the benefits of this treatment have been life-saving and enhancing. I believe their expertise and dedication were key factors in helping me not only survive these procedures, but also benefit from them in the
following ways.

I could take deeper breaths and speak without gasping for breath in between words. My blood gases improved. My excruciating rib pain disappeared. I could walk easier and sit, stand, and walk for longer periods without being in pain. My energy increased, allowing me to continue working for another 12 years. I gained seven inches of height and could see the world from a clearer, broader perspective. I found clothes that fit and suited my needs.

In addition, I have seen people of all ages (even over 60) have their
spines straightened and experience improvements in their lives.

For these reasons, I encourage you to explore your options (some may be non-surgical) with
experienced orthopedic surgeons who specialize in treating scoliosis. What follows is a framework
for exploring possible surgical options, though you may adapt it for any treatment decision.

My hope is that this information will support you in determining if you can improve the quality of
your health and life through surgical intervention of your spinal condition

MAKING THE DECISION TO CONSULT A SCOLlOSlS SURGEON

Are any of these characteristics of your body?

Curved spine; tilted pelvis – one hip is higher than the other; swayed back; forward bending
spine; hump on your back; protruding or concaved ribs; legs of different lengths.

If your answer is YES, you may have some form of scoliosis.

If you have any characteristics of scoliosis, are you also experiencing any of the following problem?

Pain in your back, ribs, legs; difficulty with mobility, standing, sitting; respiratory problems; bowel or
bladder problems; numbness or loss of sensation.

If your answer to any of these questions is also YES, I recommend you consult with an orthopedic surgeon who specializes in scoliosis to determine the possible relationship between your spinal
condition and physical symptoms.

WHAT DO YOU WANT TO IMPROVE?

When you consult with treatment providers, I encourage you to identify what it is you want to
have happen if you undergo treatment of your scoliosis. For example, I emphasized that I desperately wanted to breathe easier – so I would have more energy to live and do what I want. If you state your desired outcomes in positive terms, (e.g. to breathe easier; to be free of your back pain) you can find out more clearly from those whom you consult if they believe you will obtain those benefits from pursuing their recommended treatment plans. I also found this approach useful in keeping me focused on my goal.

ARE YOU "STUCK"? FEELING ANXIOUS AND APPREHENSIVE?

First, remember, consulting does not mean committing to anything! Consulting provides us, as consumers, with information to help us make prudent decisions about our health and well-being. For some of us, these are literally life and death issues. If you are feeling too apprehensive
to even explore your options, please keep reading!

I have spoken with post-polio survivors with severely curved spines who are unwilling to consult with a surgeon – even though they experience pain and other symptoms related to their spinal condition. I am struck by remarks like:

"I don't want any more surgery. I've had enough." "I am scared to death of surgery." "I am better off
not knowing." "I have too many other stresses going on in my life." "I don't want to have to make
any decisions like that." "I couldn't put my family through that."

Do you share these sentiments? If so, take some time to identify the reasons for your anxiety. Decide what you can do to resolve those fears that prevent you from obtaining information that can make your life easier or, in cases like my own, even save it. If you have had previous surgeries, and especially if they were unsuccessful, you have good reasons to fear another operation.

A few more words about fears: I encourage you to view them compassionately rather than with shame. In many cultures, fears are viewed as a lack of emotional strength. I contend that "doubt" reflects a healthy recognition that life includes disappointments and imperfections. And the reality is that there are legitimate reasons to be afraid of undergoing spinal surgery. That is why doing a thorough exploration of your options is so important. Take the time to get your questions answered and your insecurities resolved.

I suggest The Feeling Good Handbook by David Bums, MD, for more information and suggestions
about dealing with your anxieties.

GATHER INFO

Accurate, reliable data is vital in making significant health-related decisions. For this reason, I highly recommend obtaining opinions from three orthopedic surgeons whose primary practice involves treating scoliosis. Although this process is costly, remember, these decisions affect your health and life. Consider your time, energy, and expenses as an investment in determining the most suitable treatment. Think of this as a way to gain peace of mind.

SEARCH FOR EXPERIENCED SCOLlOSlS SURGEONS

Collect names and inquire about surgeons from: other health care professionals, especially other
orthopedic surgeons; the Scoliosis Research Society, The Scoliosis Association, and the National
Scoliosis Foundation (see resources in the right column); centers that specialize in scoliosis and have been treating the condition successfully for years; persons who have undergone scoliosis treatment successfully, and persons who have been treated by the surgeons you are consulting.

In other words, network.

Select three surgeons you think are possibilities based on favorable information. Consider alternatives from different medical centers as well as from out-of-state. If you have post-polio syndrome or another major medical condition, you may want to call and find out if a particular surgeon is experienced with your condition before spending the time and expense for a consultation.

You may find the following questions useful in assessing the suitability of each surgeon and hisher
treatment plans. Although these questions are directed primarily towards the surgeon, you may
obtain and compare answers from others as well.

EXPERIENCE

You may gain an understanding of each surgeon's experience by focusing on the following.

EXPERTISE

An important indication of a surgeon's expertise is the person's record of successfully treating people with your characteristics or with more severe conditions, e.g. greater curvatures, more limited respiratory functioning.

Some factors to consider when comparing your condition with others who have undergone scoliosis treatment are: type of curvature(s); degree of curvature(s); history of previous spinal surgeries; other significant medical conditions, e.g. post-polio syndrome, diabetes, heart disease; neuromuscular condition; general health status, e.g. weight, respiratory functioning; emotional condition; commitment to improving one's health.

Find out what results each surgeon's patients experienced. Although a surgeon may not have
complete, up-to-date data available (many do not track their patients through the years), some
generalities can be informative. From my perspective, any surgeon who makes the effort to provide
you with answers that he/she may not know or have readily available shows respect for your need
for information as well as your role in the treatment process.

BENEFITS OF TREATMENT

Ask about the potential benefit, including those listed below. How often have each surgeon's
patients experienced these results?

Relief of pain (location and duration: all, most, some); increased mobility; increased stamina,
energy; improved breathing (vital capacity, blood gases) ; improved functioning of bowel, bladder;
increased height; enhanced self-image.

RISKS

Inquire about the possible risks, including those listed below. How often has the surgeon's own
patients experienced these complications?

Infections; gastro-intestinal distress; problems with the instrumentation (rods); bones did not fuse solidly; curvature continued to progress; numbness, paralysis, or pain (temporary or permanent) that did not pre-exist; fatalities during surgery, or in the post-operative stages.

If you are interested in published data about these subjects, ask for outcome studies, especially about cases similar to your own.

PERSONALITY FIT

If you decide to have a spinal operation, you will need and want a surgeon with superb technical
skills. (In situations like this, I value perfectionism!) If a surgeon's personality also matters to you,
determine how effectively you can work with this person. You may find the following questions
useful in analyzing how comfortable you are with each surgeon.

RESPECT

Does the surgeon:

COMMUNICATION STYLE

Does the surgeon:

APPROACH

Do you experience:

If a surgeon's personality does not meet your needs, you must decide whether your reactions to this
person may adversely affect your undergoing treatment with him/her. Or are the disappointments
tolerable? Do the person's technical attributes, outweigh the shortcomings of hisher personality?
Ask yourself what about his/her personality is most disappointing? Can that need be filled in other ways? For example, if you're wanting more support, and encouragement, can you obtain that from other staff, family, friends? Remember – you DO deserve to be treated with respect.

TREATMENT PLANS

As you discuss your treatment options with each surgeon, I suggest you take notes and feed back
your understanding of the recommendations and reasons.

If surgery is recommended, find out about the following:

If you live in another city or state, you may want to ask if she/he has a colleague near you whom
you could contact if you need immediate assistance during your recovery stage.

Find out about the preparation plans. These can give you an indication of a surgeon's thoroughness, resourcefulness, and own decision-making approach. Ask questions such as:

Finally, ask for the names and numbers of some of other patients with conditions similar to your own who are willing to share their experiences. In talking with them, you may want to find out:

Just remember, each person's perspective of an experience may differ based on a variety of factors (including the person's attitudes toward life, others and him/herself), so talk with a number of people so you obtain a balance of perspectives.

IS THIS THE PLACE FOR YOU?

Having specially trained professionals to assist your surgeon and provide many of the day-to-day
services is crucial to the effectiveness of your treatment. Find out if the following staff specialize
in scoliosis and are knowledgeable about your other major medical conditions: nurses, physical therapists, anesthesiologists, pulmonologists, respiratory therapists, radiologists, neurologists, orthotists.

Medical centers that have special scoliosis units usually have specially trained staff. You may want
to meet with some of the key people before selecting a surgeon.

Find out if professionals are available should you need additional emotional support. And if you are
a spiritual person, inquire about the availability of a chaplain.

To learn more about the facilities, you may ask:

These usually are available at reduced rates and are located near or adjoining the medical
center.

Ask to tour the facilities. Decide if the environment seems conducive for your recovery.

Explore what kinds of support systems are available for you – not only during the primary treatment
process, but also prior to it and during the recovery period. Do they offer any structured supports for
families and significant others?

FINANCES

If you don't have adequate insurance coverage and financial resources, be creative, resourceful and assertive. Research every avenue you and your contacts can identify. Consult with the social
service departments of the medical centers where you obtain opinions. If you have no other recourse, ask the surgeon and medical center if they will accept your insurance payments as the only reimbursement for their services.

MAKING YOUR TREATMENT DECISION

After gathering info about your options from various sources, decide which, if any, you want to
pursue. Decide in whatever way works for you. My most useful decision-making approach includes
applying both my analytical abilities and intuition.

Some suggestions are outlined below.

ANALYZE YOUR OPTIONS: TIME FOR MORE LISTS!

Once again, identify what is important to you. Review what you want to have happen if you
undergo treatment. Be specific. List everything you can think of. Prioritize your objectives as best as you can.

Proceed by identifying the advantages and disadvantages, first, of each treatment option from each surgeon, and then of each surgeon based on:

Information from each and other authoritative sources, your own insights, and perspectives from others whom you respect. Given your priorities, focus on the options that offer the most advantages and the least disadvantages.

ACCESS YOUR INTUITION: WHAT FEELS LIKE IT FITS FOR YOU?

Pay attention to what you feel when you consider your options. Even business management books
promote the benefits of using our intuition in making decisions. Some suggestions to help you
understand your reactions.

Think about and picture each option:

Respect your feelings and resolve any uncertainties with a skilled professional, e.g., social worker,
psychologist, if you are "feeling stuck."

After you assess your options analytically and intuitively, what, if any option, offers you the
greatest potential to achieve your desired outcome.

Choose the surgeon you feel will work best with you to gain the maximum results. Decide, get
support, and act. Know you can revise your plans as you gain additional information and insights.
My hope is that you trust and support yourself in this process.


Linda Bieniek, CEAP, (Certified Employee Assistance Professional) is a managed mental health manager for a major corporation, and has counselled employees and led workshops about personal and career issues for over ten years. She is past chairperson of Access Living of Chicago.

Linda Bieniek's article specifically addresses scoliosis surgery, however, International Polio Network feels her thoughts and comments are appropriate to consider when facing any surgery.


RESOURCES

The Scoliosis Association, Inc., P.O. Box 51353, Raleigh, NC, 27609 (919-846-2639) will send "Scoliosis, a Fact Sheet and Home Screening Test," to anyone who sends a business size, self-addressed, stamped enveloped. It is also available in Spanish. The Association offers membership to individuals and families for $12.00 and to corporations, businesses, and institutions for $30.00. Membership entitles you to receive Backtalk, which is published several times each year.

Scoliosis Research Society, 222 S. Prospect Ave., Park Ridge, IL 60068 (708-698-1627). If you call or write, the Society will provide the names of Board Certified orthopedic surgeons specializing in scoliosis in your area.

National Scoliosis Foundation, 72 Mount Auburn St., Watertown, MA 02172 (617-926-0397). The Foundation has prepared packets of information for parents of children with scoliosis, for adults with scoliosis, and for health professionals. In addition to the packets, pamphI ets and a newsletter are also available.

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