Madelung deformity is an abnormality of the wrist caused by a growth disturbance volar-ulnar distal radial physis that retards development of the ulnar and volar portions of the distal radial physis. Due to growth abnormality, the distal radius gets tilted volarward and ulnarward, there is volar translation of the hand and wrist, and a dorsally prominent distal ulna.
The eponym gives credit to Otto W. 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.
Relevant Anatomy
Radius bone is along bone that forms radiocarpal joint with wrist bones.
[Read anatomy of distal radius]
Madelung deformity results in tilting of radius and its relationship with ulna.
An idea of normal articular surface and relationship can be evaluated if one knows the normal values.
Therefore following measurements are important.
Radial inclination
This is the angle formed by a line from the distal radioulnar joint (DRUJ) to the radial styloid and a line perpendicular to the shaft of the radius through the lunate fossa; it is normally 21-23°
Radial length
This is the difference in longitudinal level between the lunate fossa and the radial styloid, which should be 12-15 mm
Volar tilt
This value is measured on a lateral view x-ray of wrist. The angle formed between a line perpendicular to the radial shaft and a line through the dorsal and volar rims of the radial joint surface is called volar tilt. It is normally 10-15 degrees.
Ulnar variance
Ulnar variance refers to the difference between the levels of radial and ulnar articular surfaces. Normally, the articular surface lies slightly in distal position than the ulnar articular surface.
Pathophysiology of Madelung Deformity
Madelung deformity is the deformity in the wrist due to a growth disturbance in the volar-ulnar distal radial physis. Due to growth abnormality, the distal radius gets tilted volarward and ulnarward, there is volar translation of the hand and wrist, and a dorsally prominent distal ulna.
The primary deformity is bowing of the distal end of the radius, which in the most typical form curves in a volar direction 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. This is because 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. Because of its curvature and growth disturbance, the radius has become short while the ulna has continues to grow normally and has become relatively longer thus leading to negative ulnar variance.
Causes of Madelung Deformity
There are four types of Madelung deformity
Post traumatic
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 Madelung deformity, however, is Leri-Weill dyschondrosteosis.
Genetic
About 30% of cases of Madelung deformity are transmitted in an autosomal dominant fashion though there us a variable expression and 50% penetrance.
Madelung deformity is bilateral in about 50% of the cases.
Most common chromosomal association is with Turner syndrome where 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.
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.
When Madelung deformity is a hereditary disorder, it is transmitted as an autosomal dominant trait with incomplete penetrance.
Sporadic forms do occur.
It is more common in the females and involvement is frequently bilateral.
The Deformity
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 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 Madelung deformity (it is rarer form), 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.
Associations
- Leri-Weill syndrome
- Turner syndrome
- Gonadal dysgenesis
- Nail-patella syndrome
- Hereditary multiple exostosis
- Hurler mucopolysaccharidosis
- Achondroplasia
- Ollier disease
Clinical Presentation
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 rotation 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.
Imaging
Xrays
The deformity is characterized by
- Dorsal and radial bowing of the radius
- Exaggerated palmar (up to 35°) and ulnar tilt (up to 60°) of the radiocarpal articulation
- Failure of ossification of the ulnar side of the distal radial epiphysis
- Exaggerated radial inclination
- Decreased carpal angle below 118°; normal from 118° to 139°.
- Carpal subluxation in a palmar and ulnar direction
- Lunate is gradually forced to the apex of the V-shaped radioulnarcarpal joint
- V-shaped proximal carpal row [pyramiding of carpal bones]
- Dorsal subluxation of the distal radio-ulnar joint
- Positive ulnar variance
- Wedging of the carpus between the radius and ulna
CT
CT scan provides better details of three dimensional deformity though CT scans and 3-dimensional imaging are not necessary for routine treatment.
Differential Diagnoses
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 of Madelung Deformity
Surgery is indicated for relief of pain and cosmetic improvement. Function is usually only minimally improved.
Nonoperative management may be helpful in skeletally mature individuals with mild-to-moderate short-term wrist pain due to distal radioulnar joint or radiocarpal joint.
The treatment involves splintage and decrease in activity levels.
The pain that is caused by the tension within the Vickers ligament does not improve with these measures and may need Release of the ligament alone or in combination with an osteotomy
When patient has attained skeletal maturity, the treatments to be considered are osteotomy and aadioscaphocapitate arthrodesis if joint congruency can be achieved.
Darrach or Sauve-Kapandji procedure if distal radioulnar joint congruency cannot be achieved.
No specific contraindications to surgery exist other than those associated with any elective surgical procedure.
The decision of surgery is guided by patients age and remaining growth potential, severity of deformity and symptoms along with radiographic findings
Surgical procedures either correct the primary deformity of the radius or make compensatory change in the ulna or both. The goal of ulnar procedures is to change the relationship of the relatively long ulna to the radius.
Vickers physiolysis
When the deformity is noticed early and significant growth remains, changing the growth pattern of the distal radial physis to correct the deformity is possible.
The Vickers ligament originates on the radius in a fossa, is 5-7 mm thick and inserts into the anterior surface of the lunate and the anterior radioulnar ligament portion of the triangular fibrocartilage complex. This ligament could be a cause of pain in Madelung deformity.
It is said that the lesion is both bony and ligamentous and physiolysis [resecting the bony and ligamentous lesion] allows for a normal and compensatory growth to correct the deformity.
Osteotomy of radius
This is considered in older child when remaining growth is insufficient. The osteotomy can correct the position of the distal radiocarpal joint surface and brings the radius and ulna into a more proper position. It could be closing or opening wedge osteotomy. An ulna-shortening procedure can be performed along where required.
Ulnar Procedures
Because the radius is volar, the ulna appears to be subluxated dorsally and the incongruence at the distal radioulnar joint and impingement of the radius on the ulna in supination could lead to pain and stiffness.
Following ulnar procedures have been described to allow rotation
- Ulnar shortening
- Darrach Procedure
- Sauve-Kapandji procedure
- Fusion of distal radioulnar joint
Arthrodesis
This is considered in the skeletally mature patient who presents with pain and in whom physical examination demonstrates limitation of motion and severe radiocarpal joint incongruity
Radiocarpal arthrodesis and distal ulna resection is indicated.
Prognosis of Madelung Deformity
Pain relief and correction of the cosmetic deformity are main goals of treatment and most of patients attain both of them. Range of motion usually is only moderately improved at best.
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Thank you for this article. I've had Madelung Deformity all my life and continue to live with it. Of course, at the time I was diagnosed, I didn't know all the questions I should ask as I was only a preteen. Mine would appear to be a sporatic instance, or very removed as we have not known anyone in either side of the family with this occurrence.
If you would like any photographs to include in your website/article, let me know. I'll be happy to send some.
Regards,
Heather
I have another question. Can this deformity, and the conditions that cause it, also influence improper rib development?
@Heather Knorr,
Thanks Heather. Good to have you here. Would you like to post some tips on how you manage your day to day activities.That would be helpful to future readers.
Thanks for your offer. It would be great if you could send some.
@Heather Knorr,
Though a direct association is not known (to me) but because it is a developmental condtion , it cannot be ruled out.
I also have had madelungs all my life. I was wondering if lipomas are also related to madelungs bone deformitys? I have had a few lipomas and no doctors around my area have a clue what madelungs is. But i found this web site that said symmetric lipomatosis was madelungs and causes lipomas? thanks for your thoughts! Im having many problems and cant find the link.Thanks again!
I also have madelungs deformity. But mine cause me alot of wrist and elbow pain and I go in for shots every few months to help ease the pain. I had surgery once on my left to have one of the bones shortened. It worked for about 15 years. Now pain is coming back along with pain in my elbows. One surgeon told me the only other hope out there is to just fuse the joint altogether. But that is a very, very last resort. I think I will be doing these shots for years to come. Any other advise out there would be great. I am 44. Thank You
I also wanted to ad is there a possibility of having leri-weil syndrome since I am short at 4'11. My forearms are short and my forearms are also diagnosed with being deformed and dislocated at the elbow joints as well as my wrists. Is the test for this easy and should my doctor look into it. Thanks
Lori
@Lori,
Could you mail me your xray of both wrists please.
Yes I could, Where would I mail them too?
Lori
contact [at] boneandspine dot com
I wrote to them for address. please let me know what you think when you get them. Thanks.
Lori
@Lori,
I mailed you back. You can reach me at the same address.
I have a FIVE yr old daughter with madelund deformity,
discover today.Xray in hospital.
She is not in pain @ this time and I wondered if anyone could give me so advise, on how to help her to deal with her conditon ??
many thanks
She may not experience any pain with this problem for many years to come. I have it as well and did not get any pain until late teens to early twenties. I never knew I had it until I was in my 30's. Some people will get pain sooner than others. The older you get and more your wrists are over used the more pain and problems you get.. I have noticed that ice helps and Ibuprophen helps a great deal. As I got older and pains got worse I started getting shots in my wrists to help with pain. I did have surgery once in my mid 20's. That helped for about 12 yrs or so. There is surgery that can be done to help her now since she is still young and also meds I have heard of to help the bone grow longer. You will need an orthopedic that specializes in madelungs deformity. They are hard to find. Most ortho's don't know how to properly treat this condition. Hope this helps.
Lori
Faithen – i have madelungs deformity, i recommend seeking a specialist who KNOWS about it and has treated it before, i also reccomend yearly check ups with them to monitor her growth. I would push for preventative surgery as soon as symptoms like restricted movement, and pain set it. Early surgery can correct the wrist as she grows (its unplesant but not major surgery if you get it early). As long as you monitor it and get a hand and wrist surgeon who knows what theyre talking about she shouldnt get major deformity.
A question for the doctor – noone else in my family has this. Im female, what are the chances of my children having madelungs?
I did not experience pain untill I was 23 while doing a desk job.That was also when I was diagnosed. I have found that when ever I feel the twinge coming on I now the pain is coming and I rest my wrist immediately. It's good that you know early It is best to start now teaching her how not to over use her wrist. Don't carrry anything heavy, take breaks when she is writing or typing. don't open jars or use can openers (use electric ones or have someone else do it ) as she gets older use drills, not screw drivers, when driving turn hand over hand instead of driving with one hand and twisting your wrist around. It seems that the twisting, turning, pulling and repetitive motion along with heavy weight is what really tears at the joint wearing it down. You'll find that she won't have a lot of strength in her wrist and as she gets older they well get weaker. Gymastics is probably not a good idea. I don't know if she is into sports but certain things may increase the chances of getting pain earlier. I know my wrist hurt a little after bowling. Her deformity might not be as severe and she may have littlle to no pain, but certainly if giving up sports is not an answer for her some of the other sugestions won't hurt to keep in routine. As I got older I learned what activities aggravated my wrist more than others and I believe, for me, that avoiding those or doing them in limitatation has helped tremendously to control pain I now hardly experience any. Although my Dr. said my deformity is severe he also said I had great range of motion so my case may also not be as severe as others.
I have Leri Weill Dyschondostreosis, and the Madelung deformity (Wrists, elbows and ankles-knees).
I found out I have this condition properly when I was 13. An unfourtunate unrelated injury made my parents more aware. I had been seeing a Pediatrition since I was 3 or 4 due to my short stature, and after this injury, the Madelung deformity became more pronounced.
I suffered until I was 16 with severe pain and aching in my right wrist, and the movement I had slowly decreased. After 5 years of some kind of peace, I'm not experiencing the same problems with my left wrist, only the pain is worse.
I desperately want to communicate wiith other people who have this condition, I am now greatly concerned about the future, as the Doctor I have just started seeing mentioned Arthritis to me, and my mother has just been diagnosed with Osteoporosis.
Does anyone know of any websites, forums or community websites based on these condtions?
Many thanks
-Laura
This sounds crazy as I have lived with the condition all my life till now. I dont know how to describe it exactly but I have restricted pronation of my elbow /wrist joints,which unables me to turn my palms upwards. Would it be possible to correct the movement somehow?
Sincerely
Gill
@Caroline,
Yours seems a sporadic mutation. I am not aware if it can be calculated how much chance is there if your children would get this condition.
Al I can say is that there is a possibility but it cannot be quantified. And i do not think that there is a marker available to know it before birth of of the child.
may be someone from genetics is able to tell it in better way.
If you have any update on this, please let me know.
depending on the age of the child there is also hormonal shots that can be given to help in the growth of the bones in the arms. That may be something to look into as well. I have heard of these in different discussions. I too did not find out until my early twenties. I am now in mid 40's and have so much pain in my wrists and elbows are getting affected from pain traveling up arm and losing strength in both arms and hands. I am sure my jobs over the years have not helped any. I got shots in both wrists every few months to ease pain now. Just went the other day for more shots. But, the hormone shots are something to look into along with maybe a surgery to help.
Team Inspire is rare disorder or disease site, Where people get suport from other people with the same conditions. It's free to join and you can talk to others with the same condition or people who are going through similar strugles.
inspire [dot] com
The only way you can correct the movement after you've finished growing is to have a reconstruction, for me that would mean taking bone off my hip and have major reconstructive surgery. Id personally rather the restricted movement, but then ive found ways to work around mine.
For Laura, sounds like reconstruction wouldnt be a bad idea if you have that kind of severe pain. And yea, im pretty sure as i get older ill loose strength in my right hand and ill have issues with arthritis, ill worry about that if or when that happens though. There is a facebook group i saw the other day of people, about 20 or so, from round the world with madelungs, you might want to look at that. Thats pretty much the only group ive seen though.
Caroline, I did not know that there was another site as well. Is that the regular "facebook" that people sign up for?
I found out I had Madelungs Deformity when I was having troubles playing volleyball in highschool. I was also bowlegged when I was 2 years old and had special shoes to fix it. I am now 29 years old and I live with pain in my wrists every day. My family doctor wants to send me for nerve end testing for carpol tunnel and I'm not sure she knows much about the deformity. I have heard that people with madelungs can get tendon ruptures in their wrist and I am wondering if this testing is going to put me in more pain then I face every day. Can someone please help me with this?
@jEN,
Do you have symptoms of carpal tunnel syndrome?
the nerve conductive study will be of no use to you. I had one done to when the doctors really did not know much. It will come back neg. The pain is from the bones and not nerves. Jen you can e-mail me at proud_mom3 [at] yahoo.com I will be willing to talk to you about what you are going through and help with ideas. I have been dealing with this for 20 yrs now. Take care.
hey Lori
yea its on facebook. to join it you need to join facebook if you havent already, just set up a basic profile, and search 'madelungs deformity' in the groups section and join that group.
I never had problems with either of my wrists or hands. In September 2004 my hand got caught in a machine and dislocated my distal ulnar bone. I have fought with workmans comp over this since then. When i first started going to doctors they said all i did was sprain my wrist. They are now saying it is madelungs deformity. I have loss of feeling in 2 fingers, limited range of motion, cannot grip things, and have severe chronic pain most of the time. I cant do my job anymore and doctors recommend i change profession. I am a 36 year old divorced mother of two and feel like crawling in a hole and giving up. My bones have separated 10mm and the bones in my hand are separating and falling. Does anyone have advice for me?
@Amy in TN.,
Could you send me your xray and photograph of your limb including hand.
Also
Which fingers are numb?
What activities of hand are restricted?
Madelung deformity following trauma is not seen in adults.
Did you have this before trauma?
What do you mean by bones separating and falling?
My 12-year old daughter just found out that she has Bilateral Madelung Deformity. She is double-jointed in both elbows and shoulders. For the past year or so, we visually noticed that her wrists were getting worse especially when she would do her stretches/warmups during her trampoline/gymnastics classes her wrists would start to feel a burning sensation.
Since July, we've visited our family doctor, then a paedictrician, then an occupational therapist, and just last week we visited a specialist who has now referred her to one of his colleagues in Montreal. It seems that is a rare deformity.
If she requires surgery, my question is from what I read in the above postings is, if surgery only works for so many years, why not get it done again? I'm glad I found this website and the postings above….
Surgery does help, and your right, it only helps for so long. My surgery lasted about 20 yrs though. Its the over use of the hands and wrists as you get older. They really can't do another surgery cause they remove part of the bone. But there is pain shots they can give that help after that and maybe wrist fusion later in life. So sorry your daughter is going through this. I also have this. I am now 44. She will have good days and bad. Just have her not do heavy things with her hands and wrists. It does help. Also, twising motions aggrivate it as well. Gymnastics was very hard for me to do as a child. The more I tried to do the more pain I got. Keep in touch. I have posted my e-mail address up further in this chat. Please read the article Leir Weill's it helps with info.
No i never had any problems until after the trauma. The fingers that go numb are my pinky, middle, and finger inbetween. I am limited to things i can do. I can't grip steering wheel of car to drive, can't pick up gallon of milk to pour, can't hold my drinking cup at times, have trouble opening jars because i have lost strength in my grip, can't play ball with my kids because my hand can not take the blow from the toss. It's hard for me to do dishes' sometimes even shampooing my hair is a task.
As far as the bones in my hand they told me they were seperating. My first diagnosis was that i just had a sprained wrist. Then they say i have a dislocation of the distal ulnar bone. At first it was only 5mm gap between the bones and as of almost 9 months ago it has separated to 10mm. Now they are saying all it is is madelung syndrome. This is all workers compensation and i have been fighting them since 2004. But as of september the doctor says it isnt work related.
@Amy in TN.,
It would help if you could mail a picture of your xray and if possible pictures of your hands and wrists.
Is there any inability to extend your 4th and 5th fingers or to use then way you want.
What is meant by separation of the bones of hand.
Numbness is almost always due to some nerve involvement.
Why do you have it. Did you talk to your doctor?
Have you taken another opinion on this matter?
My son, age 20, was diagnosed with Madelung's at age 13. He had surgery on both wrists at that time. He does have wrist pain, as well as knee and shoulder pain. He also had learning disabilities in school, and I believe I read somewhere that learning disabilities sometimes presents with Madelung's. Here is my concern: should I have my other children tested as well? My other son is tall, long arms and limbs, but has always had pain in his ankles, hips especially, and shoulders. My daughter has long arms and limbs, and also has complained of pain in her ankles. She appears to have a "wide" ankle, it almost appears to have an extra bone, as does my other son. I am so curious about this syndrome, and the future implications for my son, as well as our other children. Also, I am concerned about our son with MD and his future treatment, as the physicians in our area had never heard of it prior to his diagnosis.
Please join our group, Madelung's Wrist Deformity at:
groups[dot]yahoo[dot]com/group/Madelungs
Ed. Note – Carrie, The link structure has been altered as we do not allow active outgoing links in comments untill editors deem them absolutely necessary.
All the best for your efforts.
@Carrie,
I can understand your concern. Th only way to be sure is to get your children examined. MD has genetic component if you think a doubt has crept into your mind the only way to confirm is examination and investigation by specialist.
It would also help if you read more about the disease and its course. You might not understand many terms
in the beginning but as you keep learning things would start making sense.
Knowledge may not alter course of the disease but it makes you more confident.
There are comments from people from various age groups and you can get a fair idea about how people carry on in spite of disease.
The deformity and disability varies from one individual to another and the treatment also varies from one person to other.
All the best.
I have madelungs deformity i was told i had it last year. i am 14 years old and i am 5 ft 3 . i really am not quite sure what it is so would you be able just to briefly explain what it is to me simply cos i dont really get all the technical stuff. the doctors wont do surgery but i am worried about how it will effect my life. id also really like to get in touch with some people who have it too to discuss preferably my age tho because everyone seems to be older and to have lived through there life with it. HELP! Thanks =]
@Molly S,
I would suggest you to go through what people have written here. If there is any specific query, please let me know.
@ Molly S: My daughter Selina doesn't mind if you contact her about it, she's turning 13 this week. You can reach her at selinafavaro[at]hotmail [dot]com anytime. You both have something in common.
Ed. Email address modified to prevent spam.
@ Nancy F. Thanks 🙂 I Have Emailed Her
Molly S. Selina didn't receive your email yet maybe again..Nancy
Nancy F
I Emailed Her Again If Not This Is My Email – molzirules [at] hotmail [dot] com
I have 2 daughters one almost 17yrs old and one just turned 10yrs old. My older daughter has madelungs and just found out that the 10yr old has it also. The Dr. said that was rare also. Would that be true? My 10yr old has to get some genetic testing to see if she has a syndrome, she is small for her age and if need be she may need to take some growth hormones. Which I was told this is the time to start. She was a breached baby at 5 lbs 12 1/2 ounces 18 inches long about 4 to 5 days before due date. Born with a cleft lip only. Which I don't think has anything to do with it. Are we on the right path with our 10yr old?
I've just been diagnosed by my daughters pediatrician. I saw doctors about my arms growing up but was never given a name for it until now. I had pain in my wrists and elbows between about 14 and 22. I'm now 32 and occasionally get pain but usually manage to avoid it by knowing what i can and can't do.
I find if i need to lift things I'm better off lifting with my arms and hands in a vertical position. I'm more likely to get pain if I carry something with my hands horizontal and palms facing upwards. My elbow's would sometimes lock when I was a student and sitting particularly long exams (over 2 hours).
The doctor I saw in my teens told me he wouldn't operate on my wrists because the bones from my hands going into my wrist were also deformed so if they corrected one thing it would likely upset something else in there and possibly lock my fingers. This was about 18 years ago though and I'm sure a lot has changed since then.
@sharon,
families with MAdelung deformity are know but yes, sporadic form occuring in two siblings is kind of rare.
Your younger daughter has short stature and Madelung deformity ( you did not mention if it was bilateral), do rule out Leri Weill Dyschondrosteosis if it is bilateral.
You can read more about that here https://boneandspine.com/pediatric-disorders/leri-…
Sharon, I also have madelungs in both wrists. Went to genetics Doctor and was tested and came back positive for Leir Weills. Your daughters should be tested for this as well, it is somewhat common for people with madelungs deformity. I had surgery in my left wrist years ago, and possible have to have it for my right. Now I am having sever problems with Tennis Elbow in both arms, due to the demormity of my forearms. I will be having surgery to fix this soon. Some people never have a problem with the madelungs and some have severe problems and pain. The best thing is to dont overuse the wrists alot and make things easier, like can openers and such. It will help them later in life. Let me know if I can help with any ideas or anything. I have dealt with this for most of my life through all kinds of things. There is also a good talk group on facebook, just type in madelungs deformity under search. Myself and a few others are in there that can help you and your children in the right path.
Lori
I am almost 50 years old and was born with Madelung's deformity. I wasn't aware of it til others noticed my short arms and the deformity in both wrists. My legs are also short and slightly bowed. I would like to reach out and talk to others who have this condition. I would like to encourage them.
Mary Ann
Hi Mary Ann, I am glad to see you on the site. I too have the same disorder as you can read from my posts. I would love to talk to you and others as well. I am 44 and had only 1 surgery on my left wrist. I actually am going in tomorrow to see another bone doctor in Pittsburgh. I am having alot of pain in my right wrist now and both elbows real bad. Mainly the right. They are having me see a specialty pediactric bone surgeon of all Dr's. I hope all goes well with my visit. I know I have to have surgery on my elbow already to fix the nerve for tennis elbow, but because of my wrists and arms they don't want just any ortho doctor doing the surgery. Hope to talk to you soon. My e-mail address is proud_mom3[at]yahoo[dot]com
Lori
Hi.
I was diagnosed with Medelung's when I was 13. I had surgery in both my wrists at 16. I am now 32.
Overall I have managed with this condition post surgery for many years staying away from hard wrist activities. In saying that, I am now experiencing pain in my soldier and lower back/tailbone. i am also getting pain in my right wrist. I think arthritis must be kicking in. I have an appointment with the exray people to see what is going on. The genetics doctor here in Toronto stated that my children had a 50 % chance of getting this. My son now 4 has limited wrist movement, no pain and his exray came back ok. This struck me as wierd as it was very difficult for him to put his arms in the posistion he was suppose to for the exray. It was total Dajavu for me as it was the same hospital that did my arms years earlier. He will be follwing my son through out his life. My daughter however only 2 doesnt have it according to the doctor. Maybe pain shots would work for me???
Hi,
I was diagnosed with Madelungs Deformity in my right wrist when I was 10, and later in my left wrist when I was 12. We (Me & my family) didn’t know about it until I showed my mum that i could firmly press the palm of my hand flat against the inside of my forearm without any difficulty or pain.
I must say that this page has been very, very, helpful in helping me understand my condition. But I am still very worried about next year (I shall be 15) when I will be having both wrists corrected using sugery, is there anyone that can please stop my nerves or share how their surgery went?
Also, just noticed this website doesn’t have any pictures. If you want i am willing to send in pictures of my wrists to show – the Madelungs deformity is quite noticable and clear on both of my wrists and would be good with some text to help explain.
@Jo Im 14 too but i'm not allowed surgery. The doctors dont seem to know really much about it. what does the surgery involve? I would apreciate it if you could get back to me.
Thanks for your offer. If you could send the images and permit us to use here, we would definitely do that.
Yeah that's okay 🙂
Is there an email I can send them to?
Please use contact [at] boneandspine[dot]com.
Many thanks for your contribution.
Yes molzirules[at]hotmail[dot]com ?
My daughter who is 14 has always had a very large wrist bone on her right side, she never had any problems with it until the past year and has started complaining with pain more and more, especially during school while writing. We also noticed a bowing in her forearm. We just saw a Orthopaedic Surgeon who diagnosed her with Madelung's deformity, and then refered us to another ortho doctor. I just dont know what to expect or what questions to ask, it seems there aren't many doctors who are familiar with this.
@Smallz,
Yes! The condition is not very common and therefore all doctors may not have enough exposure to it.
You can prepare your own list of questions. There are many posts here that can help you.
Thanks for ur help on this guy.
My 5yrs old has now had MRI ON HER ARM and a couple of X-Rays,
and is now being seen by Othorpeadic surgeon @ John Radcliffe Hospital,
how can I check that they are what they say the r, and know about this conditon?
Many thanks again
@FAITHEN,
You can discuss it with the surgeon and ask about the experience.
You can also look for previous patients if it id possible
I WAS DIAGNOSED W MADLELUNGS DEFORMITY AT AGE 12 . I WAS ALSO DIAGNOSED WITH
NEUROFIBROMATOSIS 1 IS THERE A LINK BETWEEN THE TWO. THANK YOU FOR UR HELP I AM NOW 51 JUST CURIOUS!!!!!!!!!!!!!!!!!!!!!!!!!
@SELAH,
I am not aware of any such link.
I have had 29 surgeries since age 38 and I am now almost 58. The older i get the more pain I have. I have been thinking of applying for disability since my job requires typing on a computer keyboard for 10-12 hours a day. I was diagnosed with Madelung's at age 38 and I go to a top notch doctor. Is there any studies in Madelung 's deformity for older adults and what can we do to relieve the pain
I was diagnosed with this condition at 11 year of age. I am now 39 years old. My primary physician believes I have the deformity that is related to dwarfism due to short stature I am only 5 feet tall and short arm and recessive chin. Is this deformity more prevalent to a specific culture. I.e. Caucasian, Asian or Black?
@Alice McClelland,
There are medical options for pain and then there are surgical options.
Medical options include drugs and physiotherapy.
Surgical options would depend on severity of your condition and your expectation from the treatment.
There are issues involved with both the options and you need to discuss them.
Did you discuss it with your doctor?
@Inayah,
As per my knowledge population based studies are not available in this disease.
I am 39 and was just diagnosed with madelung's disease. I have always had problems with certain activities such as volleyball, bowling, golf, etc. I attributed this to my broken wrists that were a result of falling out of a swing when I was a child. Recently, I work in the consumer package food industry and have been doing re-sets 3-4 times a week that involve repetitive motions. I have been experiencing problems in my wrists for the past month or so due to this and have been wearing a protective brace.
Even after wearing the brace, I have been experiencing pain in my wrists. I went to a hand specialist today and received my diagnosis. They have given me custom splints/braces to help me perform the re-sets at work. If they do not work, I will be considering going out on disability until I find another job that does not require this type of physical activity.
Please provide any information about alternative treatments. I'm not interested in having surgery.
Please provide full email address for my reply
I do not take any drugs due to a scare with taking Arthrotech it affected my liver functions and it took over two months for my blood tests to be normal. I have an appointment with a rheumatology office to see if they can help me I see a Dr Buterbaugh here in Pittsburgh that treats hand deformity issues. I am currently out on another disability leave from my job due to me not being able to type on a keyboard for 10 hours a day. It seems to be getting worse the older I get. What exactly can Physiotherapy do.
i was diagnosed with madelungs when i was 12. i have it in both wrists and my elbows bend wierd, people say they are double jointed. i have had surgery on both of my wrists and it has only lasted a few years. i am now 15 and have had more and more pain over the past few years. i need more surgery. just wondering if having more surgery will help or will it fail like that last few.
@Alice McClelland,
Physiotherapy can help you to strengthen muscles and joint mobility to certain extent.
I think with the problem you have you ned to avoid keyboard job.
My 13-year-old daughter and I both have Madelung's. I was officially diagnosed as an adult but had finished growing, so really no options other than modifications and lots of ibuprofen. And changing jobs as the transcription was really hard on my hands and wrists. My daughter was diagnosed earlier this year after a growth spurt and was not really sad to have to give up the violin! We saw the Hand Clinic at Mayo Clinic in Rochester, MN and she had the Vickers' procedure done on the left wrist in April. Wonderful results and wonderful staff there. I would so recommend Mayo's Hand Clinic for anyone with this issue who has not finished growing. I know there are surgical options for adults (and I am considering this) but if the pain can be prevented and my daughter doesn't have to have short funky looking arms like me, so much the better. We did do some genetic counseling and my 9-year-old daughter will be having bilateral wrist x-rays until she is done growing. We are the only two in our family and I have done some serious bugging of family members to find out information. Jay, not sure where you are located but if you can get to Dr. Allan Bishop at Mayo Clinic, I would. He has an excellent team and my daughter is not having pain and the scarring is minimal on her wrist and upper arm. Check out a Vickers' procedure online, maybe it will work for you? Good luck! Dr. Singh, if you need photos or other information, feel free to contact me.
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.
@Ann,
Good to her about progress of your daughter. If you could send the photographs and xrays, it would be a major contribution to the website.
Please let me know any condition [Attribution, anonymity] that you might like to be exercised]
Note: Vicker's procedure attempts to alter the growth pattern of distal radial physis. So it can be done only if significant growth remains.
For those who are unaware, onset of puberty is followed by cessation of skeletal growth.
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?
@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.
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!
@Brandy,
Please visit a specialist near you and find out what could be done for you.
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*
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]
@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?
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?
@Caren,
Did you consult a pediatrician or an endocrinologist!
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 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?
@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.
@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
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.
@Rachel,
You must understand that I cannot comment on your situation as I have not examined you personally.
@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?
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
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.
@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.
@Sheri Koschene,
Per se, No. It does not.
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?
@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
@Dana,
I am sorry for the dead link. Right now we have a forum in place but because it is 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.
hi my name is Rachel i comment on this page when i was 15 (im 16 now), i still didnt have surgery and i didnt get play softball because my doctor didnt want me to =/ . Im still have lots of pain but my parents cant find no doctor to help me because they dont know what madelung's is but the doctor that said i have it can not do it because he scared that he will mess it up. i really dont know what to do anymore and now im haveing pain im my other arm but havent said anything to my parents yet because i already know there no doctor could fixs it if i have it in the other arm to… i would love to learn more bout this madelung's Deformity so i can help the pain.
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
hi everyone…i am a 70 year old female with madelung's. i have felt it everyday for 70 years i am sure. at least as far back as i can remember. take my word for it, this is strictly a deformity inherited from a family member somewhere along the line. i don't believe you can get it any other way. i also know it will affect your ankles and feet, and probably the back. i have all these. my ankles and feet are now deformed, and i can't hardly walk, no dr. will admit it is due to MD. my back has always been bad, have jad surgery, and i have osteoporosis, degenerative disk, and you name it. neck and spine are chronic pain. i have had 4 surgeries on my arms. if i had it to do over? probably would have left my arms alone. 1 surgery left my finger tendons disconnected from my wrist. followed by another surgery to reconnect them, didn't work. i can now only type with my 2 index fingers as that's all i have control of. they are now so painful i am looking into getting a talking program on my computer as soon i won't be able to this either.
as for connections…i am lucky enough to come from a family of photographers. i have thousands of photos dating back to the 1800's. i have brought them all up on the computer and can see the deformities. great great and great gma had the same wrists. most females under 5' tall, men about 5'4".
as they used to call them…"pidgeon toes" and more recently club feet, they do admit come from MD. that takes in my brother, my 2 sons, my cousins sons, and my grandchildren. my gma was one of 12 children, i have no idea as to the other ones families. i do know about their stature. we were all advised at birth to put our children in shoes…on the wrong feet to straighten the bones. yet now they say my feet problems are not from same?
this is so widespread as it is in several points in the body that no one has put it all together. i can see it over the generations.
i now have arthritis everywhere they operated. i wouldn't advise you what to do but i can tell you what happens over the years. they change all the time and never for the better. there has been so little research don't let any dr. tell you they know this or that…they don't!!! another untruth…my wrists are very very tiny, blows the big wrist theory right out the window also.
anne
ann andrew,
hi, im 16 years old i found out i had madelungs about 3 years ago im kinda new what really madelung’s can do to your body all i know is your arm. is it true it can mest ur ankles up and your back?
im 5’3 my dotcors said im done growing and i still havent had surgery for my wrist. i still have pain sometimes. i play softball and marching band so i do a lot of things with my hand. Ever time i move it, it pops and the doctors i went cant help me at all. idk what to do and im only 16 =[ and im already giveing up. so i hope u or someone can help me a little.
– Rachel <3
hi anne andrew, im Rachel im 16 years old i found out i had madelung’s when i was like 13 and i need surgery on my left wrist, but no dotcor can fixs it where i live so i been in pain for a while off and on and i play softball and im in marching band soooooo kinda sucks more the things i love i have trouble with now. I was wonder what should i do or tips to help my pain. My parents dont like me takeing pain killers for my pain so i usally get ice or heat to help the pain. so i would love to hear what you have to say and others what they think helps the pain or numbing in fingers. thank you
-Rachel <3
Rachel,
You can look into splints for when you play softball, I found that the ones that work best are the ones that are custom made, not the ones from the store. Ice and heat both work for me, alternating them is what seems best. If your stomach can handle it, ibuprofen on a daily basis helps. My doctor prescribed a prescription strength dose and it helped also. I also have arthritis in my wrists, so I have a double whammy and can sympathize. If you can rest your wrists often when playing sports or in band, that helps too. I am not sure where you are at but is it possible to travel to another clinic, to get a referral to a hand surgeon? My girls had their surgeries at Mayo Clinic in Rochester, and it went very well for them and they have had no further problems. The procedure is called a Vicker’s release after the surgeon who figured out how to fix it. Good luck!
Hello, I’m havin my second surgery coming up really soon for madelungs. Anyway I’m 18 now and. I had to quit my job. I’m not sure if I would consider this for disability and would know to know if you could help
How can I help you? Please let me know.
Just wondering if you had the surgery yet? My twelve year old daughter will be having surgery for this in June, any feed back would be great.
Hi I’m Tara 25 years old and have been dealing with madelungs for 15 years . I am currently being treated by a specialist at John Hopkins in Baltimore awaiting to see if surgery must be done as I have lost most range of motion in my right and dislocation of my left. I have experienced sever pain most my life but recently after having my daughter (increased activity , lifting, carrying etc) pain has excessively progressed. I am willing to talk with anyone who is trying to cope with this condition, offer any insight I have . This site has helped me especially Lori at your age even knowing you had help for 15 years I would do anything to take away the pain. Shots don’t help at all.
Hi my name is Jessica,30 years old. Recently diagnosed with madelungs deformity. Ive been experiencing pain in my left wrist for most of my life,but due to a recent fall the pain has intensified and seems to be getting worse by the day rather than better. I have x-rays of my wrist and am wondering what you would recommend as far as fixing the problem. I have been to numerous doctors that seem to not be comfortable surgically fixing the problem and many have said that most people that have the deformity don’t even notice. however I notice everyday and it holds me back from doing everyday tasks.
Does anyone live in the Pittsburgh PA area and recommend any doctors that help with Madelung’s deformity? I’ve been to numerous doctors that seem to be more fascinated rather than proactive in helping to fix the problem. I don’t know what to do. Some doctors say its rare and aren’t sure of how to go about fixing the problem. Others have said its common and people live normal lives with Madelung’s deformity without surgery. I’m in terrible pain on a daily basis have been casted put in a non removable splint, neither of which have fixed the problem. I want to be able to perform everyday tasks without being in pain, and my range of motion is very limited.
Hi,
Whether you need surgery or not would be determined by your clinician and you. The basic question to ask is – is surgery going to make things better for you and how. My suggestion would be to find someone who frequently does the procedure. If you find that doctor is not comfortable doing particular surgery, do not insist on it.
Take care
For all who still can’t find a doctor to perform surgery, come to Montreal. I had surgery on my right wrist and will possibly go back for the left! Madelung deformity is no joke can be very painfull for some.. and it apparently gets worse within time so I would get the surgery sooner than later!
A little add on… if you scroll up a bit, I would like to confirm Anne Andrews statement. I too am 5 feet and was born “pigeon toed” and have tiny wrists. My surgeon also said that this is genetic and that I will 100% get arthritis in my hands/wrists. I’m 25 and roll sushi for the time being….. doesn’t help ?
I am 15 years old and i found out i had madelung’s in my left wrist and i had it surgically fixed but now i am experiencing the same pain in my right wrist that i did in my left wrist before my surgery.
What i’m asking is, is it possible to have madelungs in both wrists at different times because when it was first discovred in my left wrist the also took xrays of my right wirst and nothing was askew.
Generally they would present together. Could it be something else?
I am 61 years old. At age 18 I had the end of my ulna removed due to Madelung’s syndrome. I am now experiencing my right arm going to sleep from the elbow down about 15 to 20 times per day. People with carpal tunnel diagnosis say they have the same symptoms. I do a lot of computer work especially with the mouse.