Introduction:

People with OI usually require the services of a health care team that includes several specialists along with a primary care physician. The orthopedist is a doctor who specializes in bone and joint disorders. The orthopedist treats fractures and recommends surgical interventions such as rodding surgery. The orthopedist plays an important role in the lives of children and adults who have OI. Some orthopedists are members of a "team" of specialists at an OI clinic that may include a geneticist, endocrinologist, nephrologist, neurologist, physical and occupational therapists and a nutritionist. In some private offices and OI clinics, a nurse or nurse practitioner also is available to answer questions about cast care and orthopedic surgery.

General Principles for Good Communication

* Keep detailed medical records. Include lists of fractures, how they occurred and how they were treated as well as information on all surgeries.

* Keep a brief summary of key points in the medical history; include surgeries, complications, allergies and a list of any rods, pins or other implanted devices.

* Find a surgeon who is knowledgeable about OI and has experience in doing procedures for OI patients, or who is willing to consult with surgeons with OI experience before doing a procedure.

* Find and meet with the orthopedist prior to having a fracture or other emergency.

* Find a doctor who treats you with respect, who listens to you and is interested in the information on OI that you provide.

* Plan ahead for emergencies. Learn how to contact the doctor, where to go for x-rays, what to do on a weekend or holiday, and which hospital to go to. If the doctor is part of a group, find out if other members are experienced in OI as well.

* When you answer your doctor's questions, do not exaggerate, deny, or deliberately omit information.

* Be an attentive listener.

Prepare for the Appointment

* Make a list of symptoms and the events leading up to the injury.

* Be specific about date, time, location and type of pain.

* Prepare a list of questions. Be ready to ask the most important question first.

* Bring paper and pencil to write down the doctor's answers.

* When possible bring copies of previous X-rays that show the baseline status of the bone(s) in question.

* Bring a list of all drugs, vitamins, minerals, other nutritional supplements, non-prescription medicines and alternative treatments you are taking. Include information about dose, reason for taking, and how long you have been on the medication.

The following list of questions is designed to help you have a productive conversation with your doctor. It is not a script. Review this list before your appointment and select the questions that are important to you. Be sure to listen carefully during your appointment. Your doctor may answer many of these questions even before you ask them.

General Questions:

* What should I do if I suspect a fracture? During office hours? On a weekend or holiday?

* What does it mean if no fracture shows up on the x-ray? Was resolution high enough to show microfractures?

* What can I expect might happen next? (What is the prognosis?)

* Do some medications interfere with fracture healing?

* Will any of the medicines I am taking interfere with fracture healing?

* What are my treatment options?

When medications, tests, or treatments are prescribed:

* What is the exact name of the drug, test or treatment?

* Will my size influence the drug dose you prescribe?

* What are the costs, risks and benefits?

* Are there any alternatives?

* What happens to me if nothing is done?

* Will this treatment affect my bone mineral density?

When Surgery is recommended:

* What are the success rates for this surgery?

* What complications are possible? How often do they happen?

* How many times have you performed this operation?

* Am I a good candidate for surgery?

* How long can I wait before having this surgery?

* Should I stop taking any of my medications before surgery? How long before?

* Is the procedure done on an inpatient or outpatient basis?

* Exactly what will occur during the surgery?

* How long will the operation take?

* Is the anesthesiologist familiar with OI?

* How long will I have to stay in the hospital after the operation?

* Will the nursing staff know how to treat me? Have they ever cared for a person with OI before?

* What kind of special nursing care will I need at home?

* What will I need to take care of myself at home?

* How long will I be out of work or out of school?

* Will I need a wheelchair or other equipment while I recover?

* Will follow up care with a physical therapist or occupational therapist be needed?

When Rodding Surgery is recommended:

* What types of rods are available?

* Which one do you recommend and why?

* What complications are possible?

* If I have been taking bisphosphonates, how long before and after surgery should I discontinue?

When Spine Surgery is recommended:

* What can I do to prepare for this operation?

* Where will the spine be fused?

* Will this affect growth (if the patient is a growing child)?

* How will a fused spine affect my activities of daily living? Will I still be independent with mobility and/or transfers?

* What types of rods and other instruments will be used? Will they prevent me from having an MRI in the future?

* Will this require a bone graft?

* Is there a chance my bone is too soft to use instruments? What will be done then?

* How much of the curve will the surgery be able to correct?

* Will I continue to be at risk for new compression fractures of the spine after the surgery?

* What risks are involved with this surgery? Is there a risk of paralysis?

* How long will the surgery take?

* How long will I be hospitalized after the surgery?

* How long will I be on bed rest after the surgery?

* Will I need to wear a brace after surgery? For how long?

* When will I be able to return to sitting up? To walking?

* Do I need formal physical therapy? When would it start?

* Is there a risk that the rods or other instruments might break?

* How long will it take for the fusion to fully heal?

* What precautions do I need to take about bending, twisting or exercising immediately after surgery and for how long?

* Will I need modifications to any equipment such as my wheelchair or bed?

When a Cast, Splint or Bandage is applied:

* What types of casts are available?

* Which type of cast do you recommend and why?

* Can I get this wet or continue swimming?

* Will my knee, ankle, elbow or another joint be immobilized?

* How long will the cast, splint or ace bandage stay on?

* What do I need to look out for while I am in the cast? (i.e. changes in skin color, odors, skin sores, temperature of fingers or toes?)

* Will there be a second cast or something else to protect the bone?

* Who can teach me how to take care of the cast and my skin?

* What will I need to take care of myself at home? Do I need to rent any equipment?

* How much weight can I put on the leg? What can I lift with my arm?

* Do I need crutches, a cane or a wheelchair?

* How much activity can I do? When can I start weight-bearing activity?

Other Situations:

* What options are available to treat a fracture non-union?

* Would TENS therapy (electrical muscle stimulation) be helpful?

* Would braces, a temporary splint or other orthotics be helpful?

* Will the type of orthopedic rods, pins or other implants in my body exclude me from having an MRI?

Pain Management:

* What types of pain treatment are available?

* Which type do you recommend and why?

* Will any pain medications interfere with healing?

* Can any of the pain medication you are prescribing be addictive?

Physical Therapy and Exercise:

* When can I resume weight-bearing activities?

* What type of physical therapy do I need to do to regain strength and function? How many times a week, how long a session, and how many sessions in total?

* Do you keep in contact with the physical therapist?

* Does the therapist have experience working with a person with OI?

* If my insurance company won't cover physical therapy in a medical setting, can I go to a gym?

* When can I resume normal activities?

* What precautions should I take to prevent a second fracture?

Closing:

* How can I reach you if I have questions later today or tomorrow?

* When should I return for my next appointment?

Be sure to view the OI Foundation's companion pieces in this series, including Talking with your Doctor, Talking With Your Primary Care Doctor, and How To Bring Out the Best In Your Health Care Team. These and many other healthcare resources are available online at www.oif.org or by calling (800) 981-2663.

This information is brought to you by the
NIH Osteoporosis and Related Bone Diseases~National Resource Center (ORBD~NRC)
and the Osteogenesis Imperfecta Foundation

National Institutes of Health
Osteoporosis and Related Bone Diseases
National Resource Center
1232 22nd St., NW
Washington, DC 20037-1292
Tel: 800/624-BONE or 202/223-0344
Fax: 202/293-2356, TYY: 202/466-4315
http://www.osteo.org
E-mail: orbdnrc@nof.org

The National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from the National Institute of Child Health and Human Development, National Institute of Dental and Craniofacial Research, National Institute of Environmental Health Sciences, NIH Office of Research on Women's Health, Office of Women's Health, PHS, and the National Institute on Aging. The Resource Center is operated by the National Osteoporosis Foundation, in collaboration with the Paget Foundation and the Osteogenesis Imperfecta Foundation.