Many medical doctors, particularly general practitioners, family practitioners, or internists, see relatively few people with spinal cord injuries. They may not be aware of its complications or its impact on aging. Therefore, you, as an SCI survivor, need to learn what you can about your current condition so you can inform your doctor of your specific needs. The field of medicine is so broad that it is impossible for any physician to be an expert on everything. Moreover, information about SCI is expanding enormously. Forty years ago there were few survivors. Now there are thousands, and we are learning something new every day.
Wanted: Team Work!
You and your doctor can work as a team along with other health care providers. You can contribute to each other’s understanding of SCI. Share with your doctor the following:
See if he or she would be interested in articles, brochures, videos, etc. on SCI. Sharing these specific concerns with your doctor will help him or her be aware of the potential problems related to your long-term health care.
Visiting Your Doctor:
When you make an appointment with your doctor, think ahead about the information you need. Arrive with your questions already written out. Don't be embarrassed if you don't understand something. Take notes or ask your personal care attendant to take notes. Don't be afraid to acknowledge your fears.
Ask specific questions, such as:
Undoubtedly, the time will come for testing and diagnostic procedures. Approach this
reality with more questions:
Will anesthesia be used and what may be the complications? Are there special instructions regarding preparation for the test and following the test? What are the possible complications resulting from the tests, particularly in view of your injury? How will your skin be protected? Will you need to be lifted? Will you need extra attendent care for the prep or follow up?
These are the concerns that you can raise which are important for office procedures, medications, testing, and outpatient or inpatient surgery. Remember: No questions are out of bounds!
If you are facing major surgery, but it's not a crisis, you may wish to consult another physician. You will want to know what other treatment might be suggested. You may also be concerned about how the surgery might impact your transfers, wheeling and other activities. If your own doctor does not have answers to your concerns, consulting another is the best option.
Doctors, at times, may feel threatened by second opinions. Kievman, in her book For Better or For Worse: A Couples Guide to Dealing with Chronic Illness, suggests the question, “Is there someone else we should consult with?” Your best bet may be to get a second opinion from a physiatrist or a physician who has had a history of treating SCI survivors and can tell you all the options with all the potential side effects.
Remember, you are in a partnership with your physician for your long-term health care. You need to tell the doctor what your body can and cannot do. Together, you and your doctor will keep you on track for a healthier and more functional life.
Building a New Dream: A Family Guide to Coping with Chronic Illness and Disability by Janet Maurer. Reading, Mass: Addison-Wesley Publishing Company, 1989.
For Better or For Worse: A Couple’s Guide to dealing with Chronic Illness by Beverly Kievman with Susie Blackmun. Chicago: Contemporary Books, 1989
This is one of more than 20 educational brochures developed by Craig Hospital while it was a federally-funded Rehabilitation Research & Training Center on Aging with Spinal Cord Injury. The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.
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