Stephen J. Schueler, M.D.

Overview Incidence Symptoms Evaluation Treatment questions for doctor Home Care pain in adults pain in children taking control warning signs Complications Underlying Cause Anatomy

Polyostotic Fibrous Dysplasia Home Care

Home care for fibrous dysplasia includes:

Polyostotic Fibrous Dysplasia Pain in Adults

Medications commonly used to control pain and inflammation in adults with fibrous dysplasia include:


Acetaminophen
  • Acetaminophen decreases fever and pain, but does not help inflammation.
  • Adult dosing is 2 regular strength (325 mg) every 4 hours or 2 extra-strength (500 mg) every 6 hours.
  • Maximum dose is 4,000 mg per day.
  • Avoid this drug if you have alcoholism, liver disease or an allergy to the drug. See the package instructions.
  • Common brand names include Tylenol, Panadol, and many others.

Aspirin

Ibuprofen

Naproxen

Ketoprofen

NSAID Precautions

Polyostotic Fibrous Dysplasia Pain in Children

Common medications used at home for pain and fever in children with fibrous dysplasia include:


Aspirin and most of the other nonsteroidal anti-inflammatory drugs (NSAIDS) are not used in children except under a doctor's care.

Acetaminophen
  • Acetaminophen decreases fever and pain, but does not help inflammation.
  • Dosing is 10-15 mg per kilogram (5-7 mg per pound) of body weight every 4-6 hours, up to the adult dose.
  • Do not exceed the maximum daily dose.
  • Acetaminophen products come in various strengths. Always follow the package instructions.
  • Avoid this drug in children with liver disease or an allergy to acetaminophen.
  • Common acetaminophen products include Tylenol, Panadol and many others.

Ibuprofen

Naproxen

Polyostotic Fibrous Dysplasia Taking Control

The successful treatment of fibrous dysplasia requires your participation. Here are answers to some important questions.

Do you have control over your health and wellness?
Many people believe they have no control over their health and wellness. Many ignore personal health decisions or simply leave them to their doctors, relatives, or friends. In reality, you have the greatest potential to determine your relative health.

How is this possible? Do people really have control of their own health? The biggest killers are heart disease and cancer. Although many of these diseases seem to strike at random, our lifestyle choices greatly influence personal risk.

How can you participate in your health care?
To participate you must:

  • Learn to take responsibility for your own health.
  • Learn to partner with your doctor.
  • Learn how to make active decisions about your health.

How can you learn what you need to know?
  • Educate yourself.
  • Be skeptical: Learn to separate fact from fiction.
  • Billions of dollars are spent each year marketing dietary supplements, vitamins, and new medical treatments. Much of this is unnecessary and wasteful.
  • Be careful about where you get your health information.
    • Some of the best sources for health information on the web are professional societies and non-profit organizations.
    • Ask your doctor what he or she recommends.
  • Examine the credentials of the authors.
    • If you are reading about symptoms and disease, your best source is a licensed physician.
    • Pay attention to when the content was last updated.
    • Make sure the person is not just trying to sell you something.

Important questions you need to answer:
  • What things in your control can increase your risk for disease?
  • What can you do to decrease this risk?
  • What are vaccines and how can they help you?
  • How do your lifestyle choices increase your risk for disease?
  • How can you reduce stress?
  • What minor health problems can you treat at home?
  • When is a medical problem "serious"?
  • When should you call the doctor?

How can you find the right doctor?
Key points:
  • Everyone should have a primary care physician or family doctor. A primary physician is usually a family practitioner, internist, or pediatrician.
  • Establish a relationship in advance with your doctor.
  • Make sure you are comfortable with your primary care physician.
  • The internet contains many resources where you can do research to locate the doctor that is best for you.
  • You may wish to schedule a brief visit with the doctor to see if he or she is right for you.
    • Be open-minded, and allow your doctor to know you well. This will improve communication.

Important information you need to make your decision:
  • Physician credentials:
    • Internship and residency training is usually best from respected institutions, universities, and major hospitals.
    • Look for board certification in the specialty.
    • Ask about membership in medical societies.
  • Community and professional reputation are also important.
    • Are other patients happy with the doctor?
    • Has the doctor been disciplined by hospitals or agencies?
    • How long has the doctor been in practice?
    • In general, more than a few malpractice suits over a 5-10 year period should trigger caution.
  • Does the doctor communicate well? Are your questions answered during busy times?
  • Does the doctor welcome you to help make decisions about your care?
  • Is the doctor available when you need care?
  • What is the doctor's after-hours coverage?
  • Is he or she a member of a large group?
    • Do the doctors' cross-cover one another?
  • Where do they admit patients?

What is shared decision making?
You and your doctor must work together to jointly decide the best course of action to manage your health. This process is called "shared decision making". Your doctor becomes a guide and teacher and helps steer you toward the best treatment. Most doctors welcome this partnership. You must learn about your illnesses for shared decision-making to work.

For any recommended test, medication, or surgery, remember to ask:
  • How will this help me?
  • How much will it cost?
  • Is it covered by your insurance?
  • What are the potential side effects and risks?
  • What are my alternatives?

For tests, remember to ask:
  • Is it done in the office or at another facility?
  • Is it painful?
  • How will the results of this test influence my care?

For surgery or other procedures, remember to ask:
  • How long will it take to heal?
  • How many cases has the doctor done?
  • What would your doctor do if he or she were the patient?
  • Where is it done?
  • Who will perform it?
  • What are the doctor's qualifications?

What should you expect?
Shared decision making becomes impossible if you do not know what to expect from your doctor.

The American Hospital Association has published a "Patient's Bill of Rights" that is a good guide. It states that you have the right:
  • To be spoken to in words that you understand
  • To be told what's wrong with you
  • To know the benefits of any treatment and any alternatives
  • To know what a treatment or test will cost
  • To share in treatment decisions
  • To read your medical record
  • To refuse any medical procedure

What should you do before an office visit?
  • Bring all important medical information with you to the visit.
  • Make sure you can answer questions about the following:
    • Allergies and side effects to medicines
    • Current medicines you are taking. This includes herbs and vitamins. Make a list if necessary.
    • Insurance information
    • Marital and sexual history
    • Past injuries and hospital stays
    • Past medical problems
    • Past surgeries and operations
    • Pre-visit questionnaires
    • Use of tobacco, alcohol and drugs
    • Work history

What should you expect from the visit?
  • You should plan to wait if you go without an appointment. Emergencies or sick patients in the hospital may interrupt your doctor.
  • Bring along a book or toys for the kids. You may also have to wait during busy times.
  • Tell your doctor about your problem in a clear manner. Start from the beginning and go through each symptom as it appeared.
  • Before the visit, think about what makes your problem better or worse. Your doctor will probably ask you questions about this.
  • Most doctors ask many questions about unrelated symptoms. These questions help assure that there are no other problems that need attention.
  • Be sure to answer all questions truthfully. This includes sensitive questions about smoking, drug use, sexual activity, and work. Your history is the most important part of deciding what is wrong with you.
  • If you have any difficulty communicating your concerns, bring a family member or friend to assist in this task.
  • Talk to your doctor and do not leave the office without asking necessary questions. Your doctor can make you more comfortable if he or she understands your concerns.

What should you know about your medications?
Every year many people become ill because of problems with medications.

Remember to ask:
  • What side effects to expect.
  • What drug interactions are possible.
    • Find out if a new medicine reacts with those that you are taking now.
    • Many over-the-counter drugs and dietary supplements can also cause serious side effects and drug interactions.
    • Some drugs interact with certain foods, vitamins, nicotine, and alcohol.
  • Make sure you can drive or operate machines safely while taking a medicine.
  • Ask your doctor how much a prescription costs.
    • Is there a less expensive option or a generic version?

What is a treatment plan?
A treatment plan is what you and your doctor decide to do for an illness. A treatment plan cannot be effective without your participation.

Three simple questions can help you get the most from your treatment plan:
  • What is my main problem?
  • What do I need to do?
  • Why is it important for me to do these things?

Other important points:
  • Be sure you understand your treatment plan.
  • Stick with the treatment plan and allow time for improvement.
  • Don't stop medicines when you feel better; check with your doctor first.
  • Call your doctor if your condition is becoming worse.
  • Your doctor should tell you what to expect and when to follow-up or call the office.

Polyostotic Fibrous Dysplasia Warning Signs

Notify your doctor if you have fibrous dysplasia and any of the following:

  • Deep pain that is worse at night
  • New or worsening bony deformity
  • Numbness or weakness in an arm or leg
  • Sudden onset of bone pain

Continue to Polyostotic Fibrous Dysplasia Complications

Last Updated: Feb 23, 2011 References
Authors: Stephen J. Schueler, MD; John H. Beckett, MD; D. Scott Gettings, MD
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PubMed Polyostotic Fibrous Dysplasia References
  1. DiCaprio MR, Enneking WF. Fibrous dysplasia. Pathophysiology, evaluation, and treatment. J Bone Joint Surg Am. 2005 Aug;87(8):1848-64. [16085630]
  2. Ortiz EJ, Isler MH, Navia JE, Canosa R. Pathologic fractures in children. Clin Orthop Relat Res. 2005 Mar;(432):116-26. [15738811]
  3. Parekh SG, Donthineni-Rao R, Ricchetti E, Lackman RD. Fibrous dysplasia. J Am Acad Orthop Surg. 2004 Sep-Oct;12(5):305-13. [15469225]
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