Madelung's Deformity (Madelung Deformity)

  • Overview

    Combining training in adult and pediatric orthopedics, hand surgery, plastic surgery and microsurgery allows our surgeons to provide a comprehensive level of care unmatched in most other hospital settings.

    --Donald S. Bae, MD, associate in Orthopedic Surgery, Boston Children's Hospital

    If your child has been diagnosed with Madelung deformity, we at Boston Children’s Hospital will do everything we can to treat her—and you—with sensitivity and support.

    Here are some of the basics of Madelung deformity:

    • Madelung deformity is an arm condition that results in a malaligned wrist—the joint where the two long bones of the forearm (the radius and ulna) meet the carpal bones of the hand.
       
    • Madelung’s is a congenital condition, meaning that it’s something your child was born with, but it often doesn’t show up until pre- or early adolescence.
       
    • Girls are more often affected than boys.
       
    • Most of the time, the condition affects both of a child’s wrists.
       
    • Signs and symptoms can include:
      • Limited range of motion (ROM) in wrist
      • Wrist pain
      • Visible changes in the appearance of the wrist
         
    • The condition is usually diagnosed when a child is between 8 and 14 years old, although the condition can become apparent earlier.
       
    • Diagnosis is usually confirmed by a physical exam and x-rays.
       
    • For children with no symptoms and only a minor bump, observation and monitoring may be all that is needed. But more severe Madelung’s may be treated by surgery, and there are several surgical approaches.
       
    • While surgery corrects the deformity, it can come back, especially in younger children. Boston Children’s doctors use several strategies to reduce the risk of recurrence.

    How Boston Children’s Hospital approaches Madelung deformity

    The skilled experts at Boston Children’s  have treated thousands of babies and children with arm and hand problems that range from the simple to the highly complex, including world-class treatment for Madelung deformity.

    Our Orthopedic Center is nationally known as the preeminent center for the care of children and young adults with a wide range of developmental, congenital, neuromuscular, sports related, traumatic and post-traumatic problems of the musculoskeletal system.

    The Hand and Orthopedic Upper Extremity Program

    The Hand and Orthopedic Upper Extremity Program provides comprehensive care involving occupational and physical therapy, splinting, casting and reconstructive surgeries for infants, children and adolescents with complex congenital, neuromuscular, sports-related oncologic and traumatic upper limb conditions.

    Madelung deformity: Reviewed by Donald Bae, MD
    © Boston Children's Hospital; posted in 2012

  • In-Depth

    At Boston Children’s Hospital, the skilled surgeons in our Orthopedic Center have developed innovative surgical treatments for children with all degrees of severity of Madelung deformity. 

    What is Madelung deformity?

    Madelung’s is a rare congenital condition in which the wrist grows abnormally. Part of radius, one of the bones of the forearm, stops growing early. The other forearm bone, the ulna, keeps growing and can dislocate, forming a bump. Other bones can be affected as well, and the hand ends up rotated and lower than the forearm. Movement of the hand and elbow are not affected.

    Madelung deformity can occur:

    • by itself (in isolation) without any pattern or genetic association
    • in association with certain genetic syndromes, such as Leri-Weill mesomelic dwarfism (dyschondrosteosis) or Turner syndrome

    Note: This website mainly discusses the condition in isolation, rather than as associated with a genetic syndrome.

    How common is Madelung deformity?

    Madelung’s is not a common condition. While exact numbers are not known, in one recent study it was found that among a sample of 1,476 patients with congenital hand and upper limb differences, Madelung’s accounted for only about 1.7 percent of cases.

    How is Madelung’s diagnosed?

    Madelung’s is usually diagnosed by physical examination when the deformity becomes apparent. This is usually when a child is between 8 and 14 years old, although the condition sometimes shows up earlier.  

    Your child’s doctor will take a thorough medical history and perform a careful physical examination. Typically, x-rays confirm the diagnosis. (For details visit our Testing and Diagnosis page).

    How is Madelung’s treated?

    If a child is pain-free with mild deformity, she will probably be treated with simple observation, rather than surgery. But if, the child or teen is experiencing pain, limited range of motionor other significant problems, surgery is likely to be indicated.

    Surgical approaches can include corrective soft tissue and bony procedures. (For details, visit our Treatment page).

    Will my child be OK? What’s her long-term outlook?

    Most of the time, after surgery at Boston Children’s the child’s bones heals, the deformity corrected, the pain improved, and the appearance of the wrists improves. But recurrence of the condition may occur, especially in younger children. Boston Children’s doctors use several treatment strategies to help minimize the risk of recurrence. (For details, visit our Treatment page).


    Causes

    Researchers don’t really know what causes Madelung’s. Some researchers believe that the condition is due to an abnormal growth plate at the end of the radius and/or an abnormal ligament connecting the end of the radius to the small bones of the wrist.

    Girls are more often affected than boys. Researchers believe that this is probably due to mutation in a gene (the SHOX homeobox gene) on the X chromosome.

    Madelung’s can occur in association with certain genetic syndromes, such as Leri-Weill mesomelic dwarfism (dyschondrosteosis) or Turner syndrome.


    Signs and symptoms

     Signs and symptoms of your child’s condition can range from a just a slight protrusion of the lower end of the ulna to a complete dislocation of the wrist. Other indications can include:

    • Limits to wrist range of motion (ROM)—can range from minor to major
    • Pain—chronic or following activity involving the wrist joint
    • Visible difference in the wrist
  • Tests

    At Boston Children’s Hospital, we understand that the first step to treating your child or teen is getting an accurate, timely and thorough diagnosis.

    • Your child’s doctor first takes a thorough medical and family history and conducts a careful physical exam.
       
    • To confirm a diagnosis of Madelung deformity, the doctor orders x-rays to look closely at the underlying structure of your child’s wrist bones, to check for related conditions; and to determine the best course of treatment.
       
    • To evaluate whether genetic syndromes are involved, Boston Children’s may also perform genetic testing.
       
    • There are some conditions that can cause deformities that mimic the Madelung deformity, including sickle cell disease, post-traumatic growth plate disturbance of the radius, bone dysplasia and others. The doctor will rule out other possible conditions using physical exam, X-rays, and occasionally, MRI (magnetic resonance imaging) or CT scans (computed tomography).
  • At Boston Children's Hospital, our Orthopedic Center provides comprehensive care for patients with Madelung's deformity—including evaluation, diagnosis, consultation, surgery and follow-up care.

    Many kids and teens with Madelung's have no pain or limitations in their daily activities. In these cases, no surgery is necessary. Your child's doctor will probably recommend that you bring her in periodically to monitor the progression, if any, of the condition.

    If your child has pain, trouble using the wrist, or progressive deformity, her doctor may recommend surgical treatment.

    Surgery

    In general, the goals of surgery are to reposition and stabilize your child's wrist so she can move it without pain and to prevent the deformity from worsening.

    Surgical treatment options

    The type of surgery the doctor recommends depends on your child's age, degree of deformity, functional limitations and general health. Surgical approaches can include corrective soft tissue and bony procedures, such as:

    • Physiolysis: releasing or correcting the growth plate abnormality of the radius
    • Corrective osteotomy: cutting and realigning the end of the radius
    • Ulnar-shortening osteotomy: shortening the ulna bone to level the wrist
    • Darrach procedure: removing the part of the ulna that is protruding

    We also may recommend a procedure called a wrist arthroscopy to evaluate and treat any cartilage injury within the wrist joint. 

    Complications of surgery

    Complications can occur, including: 

    • Nerve damage
    • Incomplete correction (alignment) between the right and left sides.
    • Recurrence of the condition

    However, these are rare.

    After surgery

    Following surgery, most children's wrist bones heal and the deformity is corrected. But the Madelung's often recurs, especially in younger children. Boston Children's doctors use several treatment strategies to help minimize the risk of the condition recurring.


    Coping and support 

    At Boston Children's Hospital, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's, and your family's, hospital experience as pleasant as possible. Visit The Center for Families for all you need to know about: 

    • Getting to Boston Children's
    • Accommodations
    • Navigating the hospital experience
    • Resources that are available for your family 

    In particular, we understand that you may have a lot of questions when your child is diagnosed with Madelung deformity. Boston Children's can connect you with extensive resources to help you and your family through this stressful time, including: 

    • Patient education: From doctor's appointments to physical therapy and recovery, our nurses and physical therapists will be on hand to walk you through your child's treatment and help answer any questions you may have—Why will my child need surgery? Are there non-surgical options? How long will her recovery take? How should we manage home exercises and physical therapy? We'll help you coordinate and continue the care and support your child received while at Boston Children's.

       
    • Parent-to-parent: Want to talk with someone whose child has been treated for Madelung's? We can often put you in touch with other families who've been through the same process that you and your child are facing, and who will share their experiences.

       
    • Faith-based support: If you're in need of spiritual support, we'll connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy— representing Protestant, Jewish, Muslim, Roman Catholic and other faith traditions—who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

       
    • Emotional support: Our social workers and mental health clinicians have helped many families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
  • Research & Innovation

    Improving outcomes for upper extremity disorders

    The Boston Children's Hospital Hand and Orthopedic Upper Extremity Program is dedicated to the comprehensive care of all upper limb conditions in infants, children and adolescents. Under the direction of Peter M. Waters, MD, and Donald S. Bae, MD, patients with congenital, neuromuscular, sports-related, oncologic and traumatic or post-traumatic conditions of the upper extremity receive multi-disciplinary care that includes occupational and physical therapy, splinting/casting and reconstructive surgery.

    In addition, our Hand and Orthopedic Upper Extremity Program does clinical and basic science research that will have an impact on how we care for our patients in the future. We are currently studying a wide variety of upper limb conditions, including:

    • The use of microsurgical techniques in reconstructive surgery for congenital upper extremity differences
    • Reconstruction of the congenitally deficient hand
    • Instability of the sternoclavicular and glenohumeral joints of the shoulder
    • Post-traumatic stiffness and deformity of the elbow
    • Surgical correction of forearm deformity following previous fracture
    • Ligament and/or cartilage injuries of the wrist
    • Microsurgical techniques in reconstructive surgery following limb salvage for bone and soft-tissue tumors

    Many of these investigations have resulted in national and international presentations or peer-reviewed medical publications—and all have increased our ability to provide the highest standard of patient care.

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