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Untitled Document
Kids With Madelung's

This web page was designed by a kid with Madelung's Deformity specifically for other kids with the same condition. The purpose of this site is to provide support through the sharing of information, and the telling of my story. It is designed to answer some of the questions that I had and that other Madelung's kids might have, as well. By finding answers to these questions I was able to get medical help and comfort. I'm not making any recommendations for treatments or physicians, only sharing what I have learned through my own experience and research with the hope that it will help other kids.


What is Madelung's Deformity?

Madelung's Deformity is an alteration in the shape of the wrist and forearm. Typically, it occurs during adolescence, a time when kids are growing rapidly. The deformity is four times more common in girls and usually found in both wrists, although it may occur in only one and sometimes in reverse.

Kids with this deformity may notice that their wrists seem thick. That is because the wrists of people with this Madelung's are almost twice the normal diameter. Most likely they will also notice that the ulna seems to protrude more than usual. A bump, which is dorsally prominent, develops because the ulna is growing at a faster rate than the radius. The reason that one bone is growing at a different rate than the other is because there is a problem with the growth plate, or epiphysis of the radius. As a result, the radius is beginning to bend, or bow, proximally and toward the ulna. Unfortunately, the wrist bones, or carpus, are also affected because they are in direct contact with the forearm bones

In 1989, an Australian physician named Dr. David Vickers, at the University of Queensland in Australia, identified a large abnormal ligament that was present in the wrists of many Madelung's kids. He noticed that this ligament, which is thick and fibrous, is attached to the radius and lunate. Dr. Vickers thinks that this ligament is partially responsible for the deformity. His discovery has had an important impact on the treatment of this condition and is referenced in most other recent articles on the subject.


How Does A Kid Get It?

There are several known causes of a Madelung type deformity. On occasion, it can happen as a result of a fracture such as from a snow boarding accident. A similar deformity is also seen in some young gymnasts who have experienced a repetitive injury. An infection at the bone site has been known to cause Madelung's deformity. It can also be the result of osteochondroma, a more complex condition. Sometimes Madelung's deformity is associated with a disease, such as Ollier disease, and Turner's Syndrome. However, there seems to be much disagreement among medical researchers as to the cause of "true" Madelung's Deformity.

This site refers to the deformity that Otto Madelung described in the 19th century which has no known cause. It is said to be idiopathic. Often it is connected with dyschondrosteosis, an inherited condition first described by Leri and Will in 1929. Some doctors think that Madelung's Deformity and dyschondrosteosis are one and the same thing. However, genetic researchers are uncovering new information that suggests there might be other causes that are the result of some complex series of events, both genetic and developmental. It probably won't be long before science comes up with more answers to this question.


Will It Last Forever?

This question doesn't have an easy answer because no one wants to hear that a medical condition will never go away. Orthopedic doctors have come up with several surgical treatments that attempt to minimize the pain and appearance of the deformity. However, because the radius, ulna and carpal bones in Madelung's kids have not been growing correctly for awhile, their bones have become permanently altered and a "normal" wrist is generally not possible.

Although this 3-dimensional deformity may last a lifetime, the pain may not last forever. Many kids experience their most profound pain during the growing years, or adolescence. Once they reach skeletal maturity, the intense pain may subside. Because the deformity is different in every kid, the degree of severity and pain will be different for each kid, as well.

Some grown-ups who were misdiagnosed or not diagnosed and treated as kids experience pain throughout their lives. Others have never experienced pain because the deformity is different for everyone.


Where To Go For Help?

There are many places to go for help with this deformity. A pediatric orthopedic doctor would be a very good source of information. Another really good place to go for self-help is the medical library of a university. Before going to the library you might want to go online and look through a search engine called Medline. This National Institute of Health site provides a list of current research articles on Madelung's Deformity. This list can then be taken to the medical library where the journal and book articles are found. Much of the information in these articles can be very technical, but they provide clues to the current treatments, experts, and discussion of research that is taking place on Madelung's.

When I first started looking on the internet, there wasn't very much information on Madelung's. However, over the past few years, more and more sites have been developed.

Of the many people who helped me, the following doctors helped me the most. Dr. Reid Abrams is the surgeon who performed the two procedures on my wrists. Dr. Mary Beth Ezaki has published several articles about her treatment of this deformity in kids who are close to, or have reached skeletal maturity. Dr. David Vickers is an authority on the surgical treatment of Madelung's kids at an early age, before the deformity progresses too far. He has also published papers on his surgical procedure. Dr. Peter Waters is a pediatric orthopedic surgeon in Boston who treats kids with the deformity and has helped with advice on my case.

There are several relatives and friends who also helped me find information and medical advice. My uncle, Dr. Charles Steffen, was a great help at the library. Another uncle, Dr. Walter Holleran, helped my parents find a surgeon in San Diego who would be able to treat my condition. In addition to their kindnesses, these relatives and other friends showed me that knowledge is a very important first step toward medical recovery.


Why's It Called Madelung's Deformity?

According to the web site, "whonamedit", this deformity is named after Dr. Otto Madelung who is generally credited with first describing the condition. He was born the son of a merchant on May 15, 1846, in the German city of Gotha. At the age of 19, he began studying medicine. Madelung completed his studies at the Universities of Bonn, Berlin, and Tubingen.

Four years later, in 1869, he received his doctorate at the University of Tubingen. For awhile, he worked as a surgeon and the assistant of Carl David Wilhelm Busch in Bonn and traveled throughout England and America in the 1870's. During this time, Otto Madelung gave a scientific description of the wrist and forearm deformity that has been named after him. Madelung was not the first to describe it. According the Kelikian, there were at least six other authors before him.

After Busch's death, Otto moved to Strasbourg where he had a successful surgical career until World War I. When the war ended, France occupied Strasbourg and replaced all of the German physicians with French doctors. Many of the German doctors, including Madelung, were under house arrest. Shortly thereafter, Madelung was set free and he retired to Gottingen where he died in 1926 at the age of 80.


My Story

Medical research suggests that my wrist deformity began many years ago, but this story started just after my twelfth birthday. Not long before that, I had noticed that my forearm bones were getting bigger. My middle school friends also began to comment on my not so normal wrists. I thought that I was just "bony," but I was beginning to have some pain. With luck, my family also noticed that my wrists were beginning to look "dislocated" which prompted my parents to ask our pediatrician. On examining my wrists, he thought they looked different, but he wasn't certain, so he sent me to an orthopedic doctor. At this physician's office, they took x-rays and he immediately told me that I had Madelung's Deformity, but said that they couldn't do anything for it. He told my mom that the usual treatment for this condition consisted of watching to see how it progresses. The doctor also said it would be terribly painful as I continued to grow.

As usual, my parents wanted more information so they sought a second opinion. We visited a pediatric orthopedic surgeon in San Diego who confirmed the diagnosis and informed us that there were surgical treatments for Madelung's although the value of surgery was debatable. He also told us that the authority on Madelung's lived in Australia. After searching through Medline and the medical library at the University of California at San Diego, my mom found an article by this Australian doctor and with the help of family friends we were connected with Dr. David Vickers. At that time, Dr. Vickers had been surgically treating young Madelung's patients for twenty years. His research showed that early intervention could minimize the deformity and its painful effects. I was very lucky to have discovered this condition when I was young.

After several consultations and careful thought, my parents and I decided to find a local surgeon to perform the Vicker's procedure. Through more help from family and extensive research we found Dr. Reid Abrams at UCSD Medical Center who operated on my wrists in the Spring of my twelfth year. Dr. Abrams is a great teaching surgeon who specializes in treating people with wrist and hand problems. He is also really nice. It wasn't fun to have three hours of surgery and be in a cast for weeks. This happened twice, since I had the deformity in both wrists. However, by my thirteenth birthday I was out of casts and having fun again.

Dr. Abrams checked my wrists every six months for nearly two years. The x-rays showed that the bones of my left forearm were now growing at the same rate, which was very good. Unfortunately, the bones of my right forearm were growing, but not at the same rate. The deformity was progressing in this wrist and so was the loss of motion. It was time for another research adventure.

We began exploring options with Dr. Abrams. As usual, my parents wanted more information and knew where to get it. Back at the UCSD medical library, my mom found two articles by Mary Beth Ezaki who was surgically treating Madelung's kids who were close to or at skeletal maturity. After consulting with Dr. Ezaki and another of his peers, Dr. Abrams suggested that this procedure would be a reasonable option. Since my parents and I had grown to trust Dr. Abrams, we agreed to give it a try.

Right before my fifteenth birthday I had a new surgery on my right wrist. This procedure was much more involved and took four hours to perform. When it was all over I had three pins in my arm and a plate fastened inside. Starting my sophomore year of high school with a full arm cast wasn't fun. I had to have the cast removed every two weeks to check for infection and then re-cast. After about twelve weeks, I was finally free of the pins, cast and braces. To my surprise, my right wrist appeared almost normal, but what was really remarkable was the difference seen in the x-rays. All of the carpal bones in my right wrist that had fallen away from the forearm joint were back up in place. I did not have any pain. Now I just had to wait and see if it stayed that way.

It has been nearly seven months since I had this last surgery. Today, I am pain free in both of my wrists and the deformities appear to have either stopped or been corrected. Although I know that the bones in my wrists and forearms will never be "perfect," I'm very happy. Looking back, there were many fearful and painful times, but I'm glad I took these risks that have made a big difference in my life.


Glossary

Articulate - to form a joint.

Bump - used in this web site it refers to the styloid process which is a peg-shaped, slender projection or outgrowth.

Carpus - eight wrist bones arranged in two rows that articulate proximally with the radius and indirectly with the ulna. The scaphoid, semi lunar, cuneiform, pisiform, trapezium, trapezoid, magnum and unciform.

Dorsal - pertaining to the back or any dorsum. Posterior.

Dyschondrosteosis - abnormal development of bone tissue that results in a wrist deformity and dwarfism. It is inherited.

Epiphysis - a part of a long bone developed from a center of ossification distinct from that of the shaft and separated at first from the latter by a layer of cartilage.

Forearm - the part of the arm between the elbow and the wrist. It is composed of two bones, the ulna and the radius.

Idiopathic - denoting a disease of unknown cause.

Ligament - a band or sheet of fibrous tissue connecting two or more bones, cartilages, or other structures, or serving as support for fasciae or muscles.

Ossification - converted into or caused to harden like bone.

Osteochondroma - a cartilaginous mass of tissue that is not cancerous.

Proximally - toward the point of attachment, as of a limb or bone.

Radius - the bone of the forearm on the thumb side. Its lower end is large, and forms the chief part of the wrist.

Ulna - the bone of the forearm on the side opposite to the thumb. It is larger than the radius.


References

Carter,P.R. & Ezaki,M.(2000).Madelung's deformity. Surgical correction through the anterior approach.Hand Clinics, 16(4), 713-21.

Dirckx, John H., M.D.(ed.).(2001).Stedman's Concise Medical Dictionary For the Health Professions.Philadelphia: Lippincott Williams & Wilkins.4th ed.

Gray,Henry, F.R.S.(1995).Anatomy Descriptive and Surgical (15th ed.). New York: Barnes & Noble Books.

Harley, B.J., Carter, P.R., & Ezaki, M.B. (2002)."Volar surgical correction of Madelung's Deformity."Techniques in Hand and Upper Extremity Surgery. 6 (1), 30-35.

Vickers, D. & Nielsen, G. (1992). "Madelung deformity: Surgical prophylaxis(physiolysis) during the late growth period by recreation of the dyschondrosteosis lesion." Journal of Hand Surgery [Br] 17B (4), 401-407.

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© 4/18/03

Created by: L. Holleran