Madelung’s deformity is a congenital abnormality of the wrist caused by a growth disturbance that retards development of the ulnar and volar portions of the distal radial physis.
The eponym gives credit to Madelung, who described this entity. Carpus curvus, radius curvus, and progressive subluxation of the wrist, manus valgus, and manus furca are other terms used for this condition.
The primary deformity is bowing of the distal end of the radius, which in the most typical form curves in a volar diorection while the ulna continues to grow in a straight line. The distal ends of the radius and ulna are at different levels in the lateral plane. That of the ulna has maintained its original normal position, while that of the radius has curved down to a volar level.
It is the distal end of the radius that is displaced. Becaue of its curvature and growth disturbance, the radius has become short while the ulna has ocntineus to grow normally and has become relatively longer.
Etiology
There are four categories of Madelung deformity
- Posttraumatic: Following trauma that disrupts growth of the distal radial ulnar-volar physis
- Dysplastic: Associated with bone dysplasias like multiple hereditary osteochondromatosis, Ollier disease, achondroplasia, multiple epiphysial dysplasias, and the mucopolysaccharidoses . This type can also be seen secondary to sickle-cell disease, infection, tumor, and rickets.
The most important dysplasia associated with MD, however, is Leri-Weill dyschondrosteosis. - Chromosomal : As in Turner syndrome
- Idiopathic – Where no cause or association can be found
The exact nature of the pathologic process that causes the disturbance in the growth of the distal radial physis is unknown.
The asymmetrical growth disturbance is similar to that seen in Blount’s disease or tibia vara. Madelung’s deformity is a hereditary disorder, transmitted as an autosomal dominant trait with incomplete penetrance.
Sporadic forms do occur.
It is more common in the female; involvement is frequently bilateral.
Normally, the distal articular surface of the radius is tilted 5 degrees toward its volar surface and 25 degrees toward the ulna, with its dorsal surface and radial margin convex and its volar surface and ulnar border concave.
There are two types of Madelung’s deformity.
- Typical, or regular
- Atypical, or reverse.
In the typical form, the distal articular surface of the radius may tilt toward its palmar surface as much as 80 degrees and ulnarward as much as 90 degrees. In the normal wrist, the proximal row of the carpal bones is arranged in an arc, with its proximal surface forming a convex dome.
In Madelung’s deformity, this dome becomes peaked, its apex resting on the lunate bone. The radius and ulna are separated, with the peak of the carpal bones wedged into the interosseous space. The entire carpus is shifted toward the ulnar and volar side of the wrist. Coalition of carpal bones may be present.
In reverse, or atypical, Madelung’s deformity (which is rare), the distal end of the radius is tilted dorsally, reversing the plane of the distal end of the articular surface with a shift of the carpus toward the dorsal side. The distal end of the ulna then appears to be displaced volarly instead of dorsally.
Genetics
Primary chromosomal association with Madelung deformity has been observed in patients with Turner syndrome (Patients having only one X chromosome). Within families affected by a short stature dysplasia, a mutation has been found in short stature homeobox-containing gene, SHOX, present on X chromosome.
But families with this mutation and individuals with Turner syndrome and families with a history of MD have been shown to exhibit a variable expression of MD and dyschondrosteosis. This raises a possibility of a modifier gene on another area of the X chromosome or on an autosomal gene may be involved.
Clinical Features
Deformity of the wrist is the initial presenting complaint; it usually becomes obvious in late childhood or early adolescence, between the ages of 8 and 12 years.
In typical Madelung’s deformity the distal end of the ulna remains in its normal anatomic position and grows distally, causing a visible prominence on the dorsal and ulnar aspects of the wrist. Normally, the radial styloid process is long and is located 1 cm distal to the ulnar styloid. In Madelung’s deformity, the radius is shortened at the wrist; the radial styloid process may be on the same horizontal line as the ulnar styloid or may reach a point proximal to it.
The range of motion of the wrist is limited, especially in dorsal extension and ulnar deviation. Because of the diasthesis between the distal radius and ulna and the displacement of the carpus between the two separated bones of the forearm, pronation and supination of the forearm are also limited; as a rule, supination is definitely decreased, and pronation is impaired to a slight degree.
In reverse Madelung’s deformity palmar flexion of the wrist is decreased, while dorsiflexion is increased. Range of rotatio in of the forearm, especially pronation, is decreased. When it is minimal, madelung’s deformity may be asymptomatic. In moderate or severe deformity, however, pain develops insidiously at the wrist.
Initially it is minimal, disappearing on rest. With progression of the deformity and impingement of the displaced carpus on the distal ulna, the pain increases. Volar displacement of the carpus may cause discomfort in the region of the median nerve and flexor tendons. Weakness of the wrist may result from progressive instability of the joint.
Diagnosis
Characteristic radiographic findings include dorsal and radial curvature of the distal radius; exaggerated palmar and ulnar tilt of the distal articular surface of the radius; pyramiding of the carpal bones; greater length of the ulna as compared with the radius; wide interosseous space; and assumption of a relatively dorsal position by the ulnar head, which appears to be enlarged.
In the differential diagnosis, one should consider the possibility of trauma (dislocation of the distal radioulnar joint), rickets, inflammatory conditions of the wrist such as rheumatoid arthritis, and infection involving the ulnar half of the distal radial physis.
Treatment
Treatment is primarily directed toward the relief of pain and the restoration of function, with cosmetic improvement as a secondary consideration.
The majority of patients with Madelung’s deformity do not require surgical treatment.
Conservative measures consist of curtailing physical activities that may cause forced dorsiflexion of the wrist and wearing a plastic wrist splint to provide support and relieve symptoms.
Surgical treatment is directed toward shortening the ulna, correcting the bowing deformity of the distal radius by wedge osteotomy, stabilizing the carpus, and preventing recurrence of deformity by controlling the asymmetrical growth of the distal radius.
The ulna can be shortened by Milch’s cuff resection in children or Darrach’s resection.
Deformity correction is achieved by either a closing wedge or an opening wedge osteotomy of the distal radius at its metaphyseal-diaphyseal junction.
Fusion of the radial half of the distal radial physis will prevent recurrence of deformity.
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To Alice McClelland, Where abouts do you live? I also live near Pittsburgh and I too have madelungs in both wrists. The doctor you are seeing I have heard of, but not sure how good he is. Please let me know. I have gone to genetics at Magees as well. I am 45. I have seen a Dr Bowman in Cranberry who is very good and he knows about madelungs. He gave me some surgery options, but none I want to take right now. I had one surgery in my left wrist about 20 yrs ago. I go in for wrist injections about every 4-5 mo. They help some with the pain. I also do alot of typing at my work place. I am now having problems with tennis elbow which they say is coming from my wrist problems. I am going to have surgery done on my right elbow July 26. Hope it helps. Keep in touch Alice and let me know how your visist goes. We seem to live near each other and I thought that was very interesting.
UPDATE UPDATE UPDATE UPDATE
My daughter ( Now age 6)
has now been seen @ nuffeild Orthopaedic Centre , by a Consultant orthapeadic Surgen.
The diagnosis is NOW Hereditary Multiple exostosis
they have advised Luna ( Bone) Lengthening, and have said they want to start 1st opp is sept this year.
. I am very worried for her.
I will keep u updated
Alice, I too live near Pitts and have madelungs in both wrists. I have had one surgery done on my left and will eventually will be needing more one day. The last few years I have been having trouble with my elbows because of my wrists.(so they say) I now am going in the end of this month for tennis elbow surgery on my right. I have heard of Dr Buterbaugh. Let me know if he is any good. I have been to one in Pitts who claims to know about this problem, but was really of no help to me. He did not have the knowledge I thought he did.
Lori
Lori and Alice,
My daughter and I also saw a genetic doctor whose area of interest is Madelung’s here at Mayo Clinic. We are fortunate that we only have the wrist issues. I am short at 4’11″ but proportioned well and my daughter is now taller than me and proportioned fine. She has had surgery and is doing so well. I am tempted even though I am older as I also have some arthritis and am having more problems in my wrists. Injections do not work for me at all. Let me know if you have surgery or hear of any other options. I would be interested to hear how they go.
Ann
I have Madelungs in both wrists and have been VERY concious of the way it looks although it has never given me any pain. I have considered surgery but don’t know if it’d be worth it. Can anyone give some advice?
Hi Ann, Do you also have Leir Weills as well or just the madelungs. The shots for me last about 4 mo or so. They doctor told me the next surgery for me would be something that would not make my wrist not move up and down anymore. I can’t remember the name of it. But that seems a little extreme for me right now. So I will wait til I can’t deal with the pain anymore. I am a secretary and need my wrists as long as I can. I am also 4′ 11 but I also have the Leir Weills with the madelungs. They found that out with the genetic testing I had done. My 3 daughters are good, but were told they could be carriers of it. I am having elbow surgery July 26. Keep you posted. Take care.
Lori
This email is for Lori. Dr Glenn Buterbaugh is located in Wexford PA and I have been seeing him for over 22 years. He specializes in Hand deformity issues and he is the best. I am going back to work in August after being off over 2 months due to the pain in my wrists and my job requires that I type 10 to 12 hours a day.
My doctor does not think therapy will help and I am 58 years old and I was diagnosed with Madelung’s deformity over 20 years ago.
I wish there was a magic pill I could take. I can no longer take steroids due to my glaucoma
My email address is:
amcclelland153 [at]comcast [dot] net
My 14 year old daughter had a Left Ulnar epiphysiodesis in September and will have surgery on her right wrist next year. The doctor is recommending genetic testing for the SHOX gene deletion. How will this help in her treatment?
Dr Arun Pal Singh Reply:
November 11th, 2010 at 8:29 pm
@Smallz,
No direct role as such but would help to understand the disease better
Lori and Smallz,
We did some genetic testing in September. Since I already have known Madelung’s, Dr. Ellison (one of the genetic docs who discovered the SHOX gene and works at the Mayo Clinic too), wanted to see what the exact problem with my genes was. Then the thought was that we would send my 10-year-old daughter’s sample to the lab (in Germany) to see if she had the same pattern. Then we would know for sure if she had it. Her MRI shows slight changes starting already. Three other experts on Madelung’s looked at the MRI and agreed the changes were starting in Sammie’s wrist and better to do the surgery now as it is much easier and less recovery time. It was basically like a carpal tunnel release if they catch it before the adolescent growth spurt. I think the genetic testing is to help in understanding things, like Dr. Singh said, and I know at Mayo they are working on some new tests that I gladly donated blood for. I think that in the future when my girls have kids, they might have a better idea about things and it will be nice to have the exact genetic information for them. They have a 50/50 chance of passing it one. We just have Madelung’s, although I am short at 4’11 and have shorter forearms, I am proportioned fine otherwise. My older daughter is taller than me and my younger one will catch up soon! No surgery for me even though I do have discomfort with prolonged repetitive motion. Will see what happens when I am done with school in a couple of years and might need to start typing more again. The surgery available involves lengthening the bone in my arm, no guarantee of it working. I might try cortisone again. Sammie has her left wrist done on Dec. 2, I will ask about it then.
Ok, not sure if any of this helped but that is what I know. That and that I am so glad we found our surgeon, he is amazing. Although the fact that I know many of the staff at the Hand Clinic by name is a bit odd!
Good luck and feel free to email. It is nice to talk with someone who knows what I am going through:)
annhennebeck-at-hotmail-dot-com
Michelle,
I have found that most people do NOT notice your wrists unless you point it out. I wouldn’t look into surgery if you are not having problems otherwise. The way I understood it, was that if you are done growing, it is basically breaking the wrist and resetting it. That is just my thought. I know that my doctor here in Rochester wouldn’t do the surgery for that. Even with the pain I am having, he still recommends no surgery.
Hope you find something that works for you. Good luck!
Can I get some advice on this situation if you will please? My daughter got diagnosed wiht TURNER’S SYNDROME AND NOW MADELUNG’S DEFORMITY of the wrist.
They put her on growth hormone and it made the MD”s worse, it really grew into noticable deformity.
They want to do surgery aSAP to release the Vickers Ligament, do something wiht the growth plate and hope that the radial will start growing again as it has stopped due to the growth plate almost closing all the way prematurely.
I got two opinions both said yes….she is a high level competitive gymnast and it will take her out of meet season and I’m also just purely afraid of surgery. any help would be appreciated.
p.s. i have the top hand ortho pediatric surgeon in California ( yale, harvard, duke, ucla training and usc professor….she’s top banana fyi)
Donna, you didn’t say how old your daughter is? We were told that surgery on the Vicker’s ligament is best when done before the major adolescent growth spurt. What they did on our older daughter was to release the ligament, scrape away some of the bone that had been affected and fill the space with fat from near her elbow to hold the growth plate up. Her first surgery was in April and in August they had already seen growth of the radius on that arm. If your surgeon is the top ortho surgeon in your area, I say go for it. One season missed is better than a life of discomfort and pain. Does your hospital have a children’s wing? Ours does and it is amazing and really helped us feel better about having the girls have surgery. They might even let you and her come up and check things out. My younger daughter probably didn’t need to stay overnight as her surgery was not as detailed as she is only 10 and she wanted to stay! Rhiannon’s growth plate was pretty blocked, I think the surgery is well worth it. Good luck and let me know how it goes. Ann
Ann….my daughter is 14 and has not had any major growth spurts, sh’es 4’5″, although grew one inch
in the last 4 months from the GH probably. Is your daughters on GH or do they have Turner’s?
I haven’t found anyone with TS and MD.
AT this point my insurance has rejected an MRI, I’m furious….going postal! Can you believe they turn down a child? deem it unnecessary. we’re appealing, fighting…..but it’s pushing the surgery to Dec 23…IF we get teh MRI somehow.
thanks,
donna
Donna,
Rhiannon will be 14 in January. She has grown but I wouldn’t say it was a huge spurt, an inch or so. We have been lucky and haven’t had any issues with insurance, can your doctor explain the importance of making sure they know exactly where to operate and why the MRI is necessary? We also had a CT done on their wrists. Usually, according to our pediatrician, girls stop growing about a year or so after they start their period. She has only had it once or twice, so I think we have a while yet. We only have the Madelungs. Check out Dr. Jay Ellison from Mayo Clinic. He is one of the co-discoverers of the SHOX gene that causes Madelungs and the other issues. You might find some information and your doctor might be able to talk to him about the Turners and Madelungs. I am sure he would be willing to talk to her. He is thinking of going back into research, so would love information on this, I am sure. I think you should be able to Google him. Let me see if I can find the link to the article I have from him, I will send it.
Talk to you soon!
Ann
My 14-year old daughter had surgery in September 2010 for bilateral Madelung Wrist deformity at Shriner’s Hospital in Montreal. The specialist removed 8mm from right forearm, the ulna bone, with plates and screws to relieve the burning/pain sensation when she uses her wrists. We were told that if we wanted her wrists to physically look better, that would be considered major surgery, and we decided not to go any further at this point. She says that her right wrist that was operated on is much stronger and feels better than the left wrist, (which she wants done in the spring 2011). She plays school basketball, but can’t tribble the ball with her left for now. Just wanted to throw this information out there!
I was 13 when I found out that I had madelungs. I had fallen at school and hurt my wrist. My mom took me to the doctor and they had said that I sprang my wrist. After we left the doctors later that night my doctor called and said for us to get to the ER. He said he needed more X-rays that something was wrong with my wrist. After many test and weeks of waiting they told us that I had Madelungs. So from there they told us that I was not going to grow taller and that I would have this and that wrong with me. He said I was his first case of ever seeing this. My doctor asked if I would like to have rods put in my knees to bring me to the height that I was suppose to be and fix my wrist and I was only 13 I did not want any of this done I was happy with me. So I went on with life and I am 5 foot tall and I have pain in my wrist that has stopped me from playing any sports. After many years I forgot all about being told of this madelungs that I had. I learned to live life with the pain and pay it no mind. But my mother and my bio father passed away and so when my pains had started back up I went to doctors and they told me I had carpal tunnel. It was not till I was looking up online and came across the name madelungs that I remembered my doctor telling me at age 13 I had this. I am now 29 and my pain is very bad. I am a stay at home mom with three kids and getting a gal of milk out to make my kids a cup hurts very bad. I cant open jars so some days we have to wait for my husband to get home to help us get what we want. Writing this is very painful to my wrist. You can look at my wrist and see that there is something wrong with them when I show them to you. I just want to know should I go to the family doctor and say this is what I have what can you do to help me with my pain. I am just scared he is going to say I have no clue what you are talking about and I am going to be stuck with this pain. Please help me to know what I can do at my age and where can I go to learn more about this due to both my parents have passed away and I am loss to where to look.
Dr Arun Pal Singh Reply:
January 22nd, 2011 at 1:11 pm
@Brandy,
Please visit a specialist near you and find out what could be done for you.
Nancy:
I saw your post, my daughter 14, goes to the Shriners Hospital in Shreveport, LA, and will have surgery sometime this year on her right wrist, which is the wrist that is causing her the most pain and has the obvious deformity. Her left wrist was not deformed as bad but still had pain, so she had surgery in Sept. 10 to close the growth plate to keep it from getting worse. That surgery went well and seems to have helped with the pain. Its encouraging to hear your daughters surgery went well and has helped with her pain, as I have been really worried about the next surgery coming up.
Both of my girls had both wrists done last year. They have minimal pain or issues anymore and the youngest had her last one done in December. So, so worth the initial discomfort of surgery and all the stuff they went through. I would love to have my wrists fixed but am too old! At this point, I just make adjustments to my work and school schedules and take lots of ibuprofen and use a lot of BioFreeze. So glad to hear Nancy that your daughter’s surgery went well. Smallz, hope your daughter has another good surgery. We have seen bone growth in my older daughter’s left wrist (the first one she had surgery on) already and actually she has grown 2 1/4 inches in the last year! Which means, thank goodness, she is taller than me:)
Good luck to both of you and keep everyone posted!
Hi, my name is Rachel i’m 15 years old. 3 mounth ago I found out I have Madelung’s deformity in my left wrist and Arm about 5 years ago I broke the same arm at School playing kick ball. Did my broken arm have anything to do with Madelung’s deformity? I have so many questions about this. Was given Nsai’s Med’s for the pain. they don’t work and I continue to have pain the Doctor gave me Trammadol for the pain it works but makes me very Sleepy. Have been told their is a surgery to fix my problem. Dose anyone know how long the hospital stay is? and how long the recovery time is ? I like to play softball in the Summer and I would like to have this surgery in the next mos. or two. Thank you for any help P.S. My Father is helping me a littel with my Comments and questions. *RACHEL*
Dr Arun Pal Singh Reply:
February 4th, 2011 at 7:36 am
@Rachel,
Posttraumatic Madelung deformity is known. It occurs when injury results to growth plate of radius.
Whether it fits your case or not needs to be evaluated.
Did you/your parents talk to your doctor about this?
Brady, Ask, no actually tell your family doctor that you suspect Madelung’s. A simple x-ray will show Madelung’s. Most family doctor’s have not heard of this deformity, the first thing our doctor asked was, “Has your daughter ever have any sort of an accident or fall when she was younger that you were not aware about?” When your doctor sees the xrays he will most likely see very bad forearm bone development, like my daughters. Good luck, don’t be afraid to ask your doctor to see a specialist.
Smallz, I glad to read that your daughter’s surgery went well. The specialist told us, as years go by, Selina’s wrist pain may or may not get worse, and one day she will have to decide for herself whether she wants to continue getting treated for Madelung’s through surgeries or settle for taking prescription pills for the burning sensation and pain. Good luck to your daughter Smallz! She will be fine! Let us know how it goes!
I have madelung wrist deformity, diagnosed at age 14, im going to be 16 in april, and i havent gotten any treatment or medication on for madelung, because every docter i’ve seen doesn’t know much about it. I was wondering if you all think it might be too late for me to get surgury, since im almost 16, and its getting worse, and more painful, i can’t open a door knob properly, or a water bottle, and it’s painful to type somedays and to play piano. also i have it on both my wrist, but its worse on my left.
please email me any information or advise, i will be greatly appreciated by your help and knowledge.
[Email-edited]
I am 42 and have madalung’s. I am only 4’9″. My 10 year old is very short for his age, but otherwise completely fine. Would growth hormones help him at all?
Dr Arun Pal Singh Reply:
February 12th, 2011 at 7:42 am
@Caren,
Did you consult a pediatrician or an endocrinologist!
Hi All,
Bone and Spine has created a community where you can all interact and share without waiting for comment approval which by any standards takes time and makes sharing less enjoyable.
I have already created a group called Madelung Deformity.
All you need to do is to signup and login. If you are a Facebook user, you can login via your Faceboook profile too.
Here is the link to group
http://communities.boneandspine.com/groups/madelung-deformity-211086828
Kristian and Rachel,
As an adult with Madelung’s and the mother of two girls with it, I would recommend asking your regular doctor to refer you to an orthopedic hand specialist. When my girls had surgery with removal of the Vicker’s ligament, they were in the hospital overnight, on pain meds for less than a week, and my 10 year old wasn’t even in a cast. The older you are, the more complicated the surgery can be and I think it is easier if you haven’t stopped growing yet. Print out information on Madelung’s and take it to your doctor. That is what I had to do. From there we got xrays and a referral to the Mayo Clinic for surgery. I think that the surgery is a good choice for you two, if possible.
Good luck and keep in touch!
His pediatrician does not know much about Madalungs and from what I’ve read growth hormones only help in certain cases. Not sure if it would help for just short stature due to mother having madelungs. Thought someone on this sight may have tried this. Will also check with his pediatrician again.
Dr Arun Pal Singh Reply:
February 22nd, 2011 at 7:42 am
@Caren,
Do not get tempted to use something because someone else has tried it with success. Every person even with same disease behaves differently.
Take care.
Dr Arun Pal Singh Reply from Rachel,
Yes we spokee with a doctor a ortho Doctor he said that he would not do the surgery for meWe have a appontment this monday! what should we say I’m having alot of pain with this and I dont take anything that helps I’m takeing gabupentin 100mg 2 a day it dose not seem to help. I’m in gym class and I can’t do some thing with out it herting what should I say to this Doctor I see monday ? is there a pain med that I can take ? thank you Rachel
Dr. arun, we r going to the doctor this monday and see if he can do surgery but the frist doctor didnt wont to so hopefully this one can. What should we ask him?
Dr Arun Pal Singh Reply:
February 22nd, 2011 at 2:40 pm
@Rachel,
Ask whatever your questions are. I am sorry I missed your mark.
How did appointment go?
well he cant do the surgery so we have to find a other doctor.took more x rays up to my elbow. theres nothin wong with elbow. its just the smaller bone that is shorten and liltle bent with the bigger bone. the doctor said im having pan because its bent at the end thats growing toghter . he gave me meds so i can sleep so i wont be in pan in the middle of night. the doctor said they mite do one of two surgerys shorten the big bone or add lenthen the small bone . He thinks makeing it shorter will be better. so what do u think? Thank you , Rachel
Dr Arun Pal Singh Reply:
March 8th, 2011 at 1:29 pm
@Rachel,
You must understand that I cannot comment on your situation as I have not examined you personally.
he cant do the surgery so we to a other doctor wed.
When I initially took my older daughter in due to back pain (she has mild scoliosis), she mentioned to our pediatrician that her wrists hurt. As she had mentioned it to me earlier, I had printed out what information I could find and brought it with. The pediatrician had not heard of it and the radiologist hadn’t really seen it but did some research and referred us to Mayo Clinic to an Orthopedic Specialist.
Caren, growth hormones were never even mentioned for us but they weren’t concerned about growth with my two and even though I am short, I am proportioned correctly. Just short! I would be hesitant to use growth hormones unless really necessary. You didn’t mention if your son’s father is short? Your son might just be short or not have gone through his growth spurt yet? I know boys who had another growth spurt after high school even. What did your pediatrician say?
Rachel, how did your appointments go? Were you able to find a surgeon and get your questions answered?
My 11 yr old daughter fell in a basketball game and hurt her wrist so we went for and x-ray. We discovered she has Madelungs. I am so confused about what to do. I have read so much on this and there are so many opinions. The orthopedic sent us to a hand specialist. We went today i was so ready for some answers and now I’m more confused.
Because of the early detection she has no symptoms, I would love to think she might never have symptoms but I guess you just wont know untill she grows. However, the specialist seems to think It be in our best intrest to wait till she has finished growing to determine it nessesary for surgery. I am perfectly fine with this if this is the best answer for her.
Dr Arun Pal Singh Reply:
March 9th, 2011 at 7:35 am
@Marie P.,
If she does not have symptoms, I would suggest wait and watch. The severity of the disease varies in different individual.
Meanwhile you can read as much as information you can so that you can answer the questions when your daughter faces an issue.
All the best.
Marie,
Our surgeon consulted 4 other specialists when we were thinking of having our younger daughter’s surgery. Even though she was only 10 and having no pain or symptoms, with my other daughter and myself having Madelung’s the chances were pretty good that she would. Only one specialist said to wait until she developed symptoms. The other 3 saw the changes starting and said to do it know before she began to have pain. I was under the impression that once that growth plate closes, surgery will really not be an option. Both girls had a Vicker’s procedure, that takes the ligament that grows across the bone preventing its growth and scrapes it off. Some fat from near the elbow was put in place between the bone and growth plate to prevent it from collapsing. This allows the bone to start growing again and then the wrists have better range of motion and little to no pain. My older daughter has had no pain since her surgery and she had quite a bit prior to surgery. My thinking was that if Sammie had the surgeries done before her growth spurt, she could avoid the pain her sister and I had. Apparently, symptoms really start to show when the adolescent growth spurt starts, which was the case for my older daughter and myself. the only surgery available for me was to try to lengthen the bone in my arm to make them more even. No guarantee it would work and I could end up with more pain than I already have.
Anyway, I am not a doctor and certainly not an expert, but I am really glad we chose to have Sammie’s done before she had her growth spurt and the surgery was more complex. Have you had an MRI or CT done? That was what really showed the girls’ growth plates and ligaments the best and what helped to decide if the time was right. Of course, the fact that I had it and my older one pretty much guaranteed that Sammie would. Is there another specialist you can get a 2nd opinion from?
Rachel, Is there another surgeon you can see? I don’t know if you are done growing yet and how that will affect what surgery you might have but to be only 15 and taking all those drugs to sleep and for pain is not a good indicator (to me at least) of what will happen if you don’t get things corrected. Please see if you can get another opinion. Someone in your area should be able to refer you to a specialist. Where are you from? Our surgeon here in Minnesota was excellent and had done many surgeries for Madelung’s.
Good luck and will be thinking of you and praying for you.
Ann
I have severe MWD abd ny dic is extremely knowledgeable on MWD and is suggesting a wrist fusion, what does this involve and how long is the recovery, he has said I will not find any pain releif with meds, and our only option is surgery, im only thirty is this normal?
Dr Arun Pal Singh Reply:
March 31st, 2011 at 1:20 pm
@Amanda,
Fusion surgery would involve measures to make your wrist bones to fuse [ glue] with your forearm bones.
No motion, no pain.
But the sacrifice is of joint movements.
You would have a painless fixed writ unable to move.
Fusion is the salavge procedure and only needs to be considered when every other option has worn out or is not feasible.
You need to decide it after a lot of deliberation. It is a surgery the effects of which would not be reversed.
03-25-11 I was in an auto accident and injured right hand, wrist and fingers. At the appointment with the hand specialist, I was told that I have Madelungs of the right wrist. My question: would this condition predispose me to increased injury at time of the accident?. I have never had wrist pain before and am almost 60. Thank you. Sheri Koschene
Dr Arun Pal Singh Reply:
March 31st, 2011 at 1:21 pm
@Sheri Koschene,
Per se, No. It does not.
UPDATE
We did the genetic testing and all of the tests came back normal. From what I have read their are 4 categories for Madelung’s: Post-traumatic, dysplastic, genetic and Idiopathic. I’m guessing my daughter falls into the catagory of Idiopathic, which is unknown cause?
Surgery for the right wrist will be in August, they will do Ulnar shortening osteotomy and possible radial osteotomy.
I have this deformity as well! I have mine in both wrists/Arms it’s painful but i am excited to get the deformity stuff over with i am having surgury this summer hopefully and i hope that some of the pain will then be gone. I was told i had it about maybe 5 years ago almost because i have been playing a sport and thought that i had just done something wrong to it then come to find out that i had something that i had never herd of before let alone knew anything about. But now that my bones are done growing it’s time to out this pain behind me!
~Thanks to all the people at the Shriners Hospitals!!!!
~Kaylee~
I have Madelung’s Deformity in both wrists, and have never asked a doctor but wondered if any of you know, what is the percent/chance that my children will have it? Do they have a higher chance because I have it?
Dr Arun Pal Singh Reply:
April 20th, 2011 at 1:54 pm
@Kristi Simmons,
Yes! The risk is higher but I am not sure if we can come down to percentages.
HI ALL!
Update on my 14 year old’s surgery in Dec. Went well…never has returned to gymnastics yet.
We’re really bummed that the surgeon keeps saying “Not yet”. She missed one season, and hopefully will get back training by end of June to regain all of her skills. They had her on the fast track for Ucla…with Ucla’s coach as her coach now..so it’s loaded for her. For anyone worried about this stuff….get many opinions! don’t stop at one or two.
to the woman who was asking about madelung syndrome my daughter has madelung syndrom unfortunantly she does have severe pain with this she has had one arm repaired and looks great i would highly recommend the procedure
I have a madelung deformity in both wrist. The deformity in my left wrist is very severe. I had surgery on the left wrist when I was ten because it became hard to use and it was painful. Now my wrist is pretty much functioning normally however the appearance is still severe. I wanted to know if there’s any treatment to make the wrist more straight or make the arm grow?
I fractured my right arm when I was eight. It grew to a normal length. Around age 18 it became slightly slanted and I started getting sharp pains. I’m 23 now the pain is rare in the right wrist but it still occurs occasionally.
I also have issues with my ankles and balance. I don’t know if its related. I’m doing research to see what my next step should be to correct my wrist and prevent future problems.
Hello, I am a 38yo female 4’9 and have Madelung’s. My pain started when I developed a Ganglion cyst and that is when I was diagnosed by my surgeon. As I age the pain get’s worse in my right wrist. Especially the busier I get with work (typing) My surgone mentioned 3 different types of surgery to me so now I do not have confidence in him. I recently did a MRI and they said that I may have a oblique tear in the liagament as well. When the pain get intense I feel I should find a specialist that would know about the deformity. But keep thinking in my mind it is a lifestyle that I need to accept. I noticed Dr Singh has responded to some of you and he posted a website for us to talk however the link did not work. Does anyone have this correct link for me to join? Has anyone seen a Doctor in the Chicagoland area that would know about this deformity? I noticed that it is genetic however I am the only one with it in the family.
Dana
Dr Arun Pal Singh Reply:
October 25th, 2011 at 2:34 pm
@Dana,
I am sorry for the dead link. Right now we have a forum in place at http://boneandspine.net but because it new, it does not appear to be buzzing with activity. There is a subforum on Madelung Deformity and you all can connect to each other through groups, keep a personal blog and share private messages.
It could become a big resource on musculoskeletal issues as more and more people interact.
also..we made appointment to this big hospital it took us 2 mouths waiting for the day and we drove lil over 2 hrs to get there and soon as we got there we waited a hr and the lady came up to us saying ur to yong to go this hospital… she mistread the files how old i was =/ so the dotor didnt want to see me so they sent me home.
ann,
thank you =] and we trying to have a doctor do my surgery but there no doctor we can find… and i stop takeing meds for the pain so now i have deal with it.i think we are going back to the hospital that i was to yong to go because they are aloud to see 16 years old now =]
@Rachel,
What did you find out about surgery? Did the clinic see you now? I hope they were able to give you some answers and help. I still swear up and down by Dr. Bishop and his team in the Hand Clinic at Mayo here in Rochester. He is amazing, answered all our questions and took the time to make sure we were comfortable with our choices and that we were doing the right thing. I hope you are able to find a doctor like that in your area.
Ann
ann,
I know they can shorten my lil left bone or they can make it longer =/ and we havent found a doctor yet. my parents are doing there best to find one but there not much ppl know what madelung’s is or there scared to mess with it cuz it could make me have more pain what i have now. So im just waiting and im going to play softball this year no mater what my doctors say cuz they stop me from my life when im only 16 and i only have 2 years left out of high school =[ I think we going to my family doctor again and see what doctor could help me cuz i got and new doctor and his beter =] so he could help me i think.
-Rachel <3
*cant stop me from my life * sorry =[ not best writer and speller