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Arthrogryposis

The Center for Children has enabled children who could not walk and often could not use their upper extremities to walk independently and use their arms for activities in everyday life. Very few centers are devoted to treating Arthrogryposis. By centralizing state-of-the-art techniques, the Hospital for Joint Diseases (HJD) Center for Children provides an alternative for patients who travel to different locations for treatment. This multi-disciplinary clinic integrates a variety of services from the Center for Children and the Rusk Institute of Rehabilitation Medicine. Each child is evaluated by a team consisting of a pediatrician, neurologist, orthopedic surgeon, geneticist, and physical and occupational therapist and then a program for effective treatment is made.

Definition
Arthrogryposis is from the Greek language and literally means “curved or hooked joints”. It does not describe a single diagnosis, but a variety of deformities present from birth caused by tissues surrounding the involved joints being abnormally short. In some cases, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe types, nearly every joint is involved, including the jaw and back.

Causes
The cause of Arthrogryposis is not known but there are several factors which may play a role in the condition. One may be insufficient room in the uterus for normal movement or, a lack of amniotic fluid (fluid that surrounds the fetus). Another factor is muscles may not develop properly in utero. While it may not be possible to ascertain why there are suspected causes such as muscle disease or viruses which, in utero, may damage nerve impulses to the muscles. Another factor could be that connective tissue (tendons, bones, joints) does not develop properly.

Risk Factors
While there are several factors which may play a role in the condition, risk factors are not generally known.

Symptoms
Common symptoms of Arthrogryposis include:

  • multiple joint problems
  • poorly developed and contracted muscles
  • limb deformities.

Diagnosis
There are no prenatal tests currently available. Once a child is born, clinical tests, muscle biopsies and blood tests can provide evidence for Arthrogryposis.

Treatment
Surgical Care
Surgery can be needed to correct severely affected joints and limbs. One type used by the HJD Center for Children which involves minimal surgery, the Ilizarov Method, is a proven technique for correcting limb deformity. With the Ilizarov Method, a frame is attached to the outside of the limb, using pins and wires. Over time, the frame is gradually adjusted until the shape and length of the leg are corrected. Another similar technique involves Spatial Frames which are utilized similarly to the Ilizarov Method.

Non-surgical Care
One of the conditions that can occur with Arthrogryposis is clubfoot and the HJD Center for Children uses the Ponseti Technique to treat clubfoot. The Ponseti Technique is a short term, non-invasive series of castings with results often accomplished in an average of five weeks. What the Ponseti Technique accomplishes is putting the feet back in their proper place in sequential order. For example, the second session cannot be attempted until the first has been successful, etc. Physical therapy is also used to gently stretch the joints along with casting and splints.

Prevention
There are no known preventative measures for Arthrogryposis.

Patient Testimonials
1. Sara
Our daughter Sara was diagnosed with Arthrogyrposis at birth. After receiving a negative report from two top orthopedists, we arrived to Dr. David Feldman confused and discouraged. In addition to the positive attitude and hope he gave us, Dr. Feldman’s knowledge and skill produced incredible results. With expertise, care and compassion, Dr. Feldman outlined a treatment plan combined with an intense therapy program that did wonders for our child. Dr. Feldman has an amazing talent with which he corrected our child’s deformities.
Today at age 6, Sara is a confident, active child with a zest for life. As opposed to her original prognosis which may have left her wheelchair bound, Sara is walking independently (with AFO’s / Ankle-Foot Orthoses / orthoses = brace), jumping and keeping up with her peers Under Dr. Feldman’s guidance, Sara is progressing continuously.
We thank God everyday for sending us Dr. Feldman “our miracle worker” and his very special nurse, Ella. God bless Dr. Feldman and his entire staff.
Mrs. J. Brooklyn, NY

2. Vincenzo
Vincenzo is from Italy and has suffered from Arthrogyrposis since birth. He was never able to walk independently and was wheelchair dependant. Living in Italy, it was impossible for him to obtain the proper care or treatments. In 2006 we were funded by an Italian charity to seek help in New York City from Dr. David Feldman. At the age of 15 Vincenzo and I came to New York in February 2006 to undergo surgery to correct his limb deformities and hopefuly walk. In August of that year Vincenzo and I returned to Italy where he greeted our family and the Italian press by walking off the plane independently.
Mrs. DelVeccio

See photos of Vincenzo here.

Resources
The Wallace B. Lehman, M.D. Center for Pediatric Orthopedic Surgery
http://www.nyuhjd.org/hjd/centerforchildren/patient/wallace.html

The New York Institute for Limb Lengthening and Reconstruction http://www.nyuhjd.org/hjd/centerforchildren/patient/limb.html

The Center for Pediatric Rehabilitation and Pediatric Medicine
http://www.nyuhjd.org/hjd/centerforchildren/patient/ped_rehab.html

The NYU Hospital for Joint Diseases Pediatric Physical and Occupational Therapy Department
http://www.nyuhjd.org/hjd/centerforchildren/patient/rehabilitation.html

Child Life Program at Center for Children
http://www.nyuhjd.org/hjd/centerforchildren/patient/child_life.html

Music Therapy at Center for Children
http://www.nyuhjd.org/hjd/centerforchildren/patient/music_therapy.html

 

To make an appointment at the NYU Hospital for Joint Diseases Center for Children, please call 212-598-6205