Fibrous dysplasia symptoms & treatment

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Fibrous dysplasia is a disorder where the cells that form bones make too much fibrous tissue. Normal bone is replaced by fibrous tissue, leading to weak bones, uneven growth and deformity. Bones affected by fibrous dysplasia develop sections of scar-like tissue that can make them weak and change their shape.

Most often, fibrous dysplasia affects the bones of the legs, upper arms, skull (including the facial bones) and ribs. Fibrous dysplasia is the result of a defective gene in the bone-forming cells. It’s present at birth, but symptoms may not appear until later in childhood.

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Symptoms of fibrous dysplasia

Fibrous dysplasia can affect one bone or all your bones. If you have a mild case of fibrous dysplasia, you might not have any symptoms. Sometimes it goes undetected for years. In more severe cases, symptoms develop when you’re an adolescent or a young adult. Fibrous dysplasia symptoms can include:

  • Bone pain
  • Bone fractures
  • Facial deformities
  • Facial pain and swelling
  • Nerve entrapment

Rare complications of fibrous dysplasia include hearing or vision loss and bone cancer.

Polyostotic fibrous dysplasia is a type of fibrous dysplasia where more than one bone is affected. When polyostotic fibrous dysplasia develops in the leg bones, it causes limping, and when it develops in the facial bones, it can cause large lumps.

Symptoms of McCune-Albright syndrome

In rare cases, fibrous dysplasia goes hand-in-hand with endocrine system problems. If you have both, you may have the symptoms of McCune-Albright syndrome such as:

  • Light brown spots on your skin
  • Premature puberty
  • Thyroid issues

Diagnosis of fibrous dysplasia

Your doctor will talk with you about your symptoms and give you a physical exam in order to diagnose fibrous dysplasia. You might also have diagnostic tests such as:

  • Bone scans. Doctors inject a radioactive tracer substance into your bloodstream and your bones. Areas that light up on the scan reveal possible fractures.
  • Imaging tests such as an MRI or CT scan. These tests reveal abnormal bone tissue.
  • Biopsy. Doctors remove a small piece of bone so they can examine it more closely.

Fibrous dysplasia treatment

At Aurora, we’ll work with you on a personalized fibrous dysplasia treatment plan to meet your needs. If you’re not having symptoms, your doctor might just keep a close eye on your condition. If you have symptoms, we can help ease chronic pain, remove fibrous tissue and mend fractures and facial deformities.

Fibrous dysplasia treatment with medication

Research has shown that biophosphonates can help treat fibrous dysplasia. These drugs help with bone density. Biophonphonates are also used to treat osteoporosis and similar conditions.

Procedures for fibrous dysplasia

If fibrous dysplasia is affecting your facial bones or skull, we can treat it using a minimally invasive procedure called the  expanded endonasal approach (EEA). In this technique, a thin, lighted tube is inserted through your nose to safely remove scar-like fibrous dysplasia tissue. It doesn’t require incisions, so you’ll have a shorter hospital stay, a faster recovery and no scarring.

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