Hi, I'm 15 (female) and I've been having pains for several months now so I went to two differnt docotors and to make a long story short, I have Madelung Deformity. Now, I've always been very embarassed of my mothers short arms and height and then at around 12 I became so self concious about my own. My arms look short and they dont get skinny right at the wrist bone like all the rest of my friends arms do. A highly recommended doctor who specializes in these things is Dr. - - of - - - - , and he said that the best thing for me to do is to take a bone from my hip and put it into my wrist to help the pain, I dont remember what he said about the physical appearence, so I was wondering if you could please please give me any sort of information that you know that can be the outcome of my physical appearence of my wrist if I go along with this surgery. Cortozone injections twice in my right wrist did not help long term. I'm so embarassed of my wrists and my friends just dont understand me. Thanks for caring, honestly, it means the world to me. Also my grandfather apparently has it and his daughter (my mother) also has it, and my only sister has it but not to the degree that I have it in... my appearence is much more noticable.
I ( female ) just found your web site although i seem to have a mention on it. i am from northern ireland and i have madelungs deformity i ahd an op three years ago but didnt feel any significant change until recently i study _ at college and have had pain every day since the age of 11 i didnt realise that there were so many other suffers as there is only one other in my country. I am really apprehensive about going through everything again i had Ilazorov frame on for four months. i would appreciate some advice or contribution from others who really know how it feels.
i have an appointment next week to discuss whether my second op will go ahead or not id be interested to know what people would advise and also the different types of operations that have been tried before.
Followup from A2/Canada
I thought I would send an update on myself and my fight with MWD. I first wrote last year when I found this site. I am 62 1/2 years old. Still appears I am the oldest dinosaur with this wretched deformity. I really didn't want surgery and the surgeon's who knew so little about this, assured me surgery was not the way to go. That was about 58 years ago. Three years ago I was in such pain I went to the best surgeon in all of Canada some say. First we did the right wrist and hand. The ulna nob was removed and a plate placed over the bone (wrist to elbow) to protect the bone. This arm responded pretty well. It gets sore but the pain is gone and so is the wrist nob. The wrist can now flex.
Then we started on the left arm. Not as lucky. I have had 2 surgeries on it and another one scheduled next month. First surgery some of the massive bone in the wrist was removed and a plate placed over the bone in the arm. Wrist came out rigid a nd the plate didn't stay attached. Second surgery a piece of my pelvis bone was removed and placed into my wrist and a new plate installed. The plate has again come loose and I have very little use of my left hand. Cannot lift or much of anything. My fingers like being in a fist position and middle 2 fingers will not straighten out. Now we are going to remove the plate, take a tendon from elsewhere in the wrist or finger to reconnect the tendon. The tendon to those fingers ruptured due to riding over the plate which has moved.
I have noticed lately a lot of you want surgery as you don't like "the looks of the arm." This is not a good reason to go for surgery. Be sure and ask what happens when they take "just a little piece" of the pelvis or hipbone. You can't walk for several days. The pain is out of this world. Does it work? Sometimes yes and sometimes no...I'm headed for surgery number 3 on one arm. This arm was very bowed and the bowed bone is gone. Does it look better? Nope! It now has a new shape which I can't figure out how it should move. You know what my next step is? There isn't one! I lived with the pain all those years...I have a severe case. My problems started with the surgery. Don't let the shape influence such a difficult decision...I made it a positive in my life. I was different, I could do all these things with my arms no one else could, It made me a very strong individual. Good luck to all and I hope you all make the right decision.
By the way...I also lived in casts for 2 out of the last 3 years of my life. The casts go from fingers to shoulder. Very hard way of life.
I Have a photo of my great grandmother and her wrist isn't covered and low and behold there is the protruded bone at her wrist. Then my 90 year old aunt remembered both her Mom and her Grandma had the same problem. Both women were very short and had the heavy wrists.
You are right...that could happen..[ whether 2 people linked by MWD and this site could find they have an unknown shared common ancestor ] ....... . My great great-grandmother came from England. She (aunt ) is in very good condition but still...she is going to be 90 in June and you never know. My surgeon told me last time he had learned so much from doing the surgeries on my arms. He feels very sad he can't help me but my case is so extreme. He did operate on a teen age girl after mine and brought her to meet me. Hers was doing great, I'll have to see how she is doing now. I told him not to be afraid to use me to learn....I have nothing to lose and others have lots to gain.
I did get it from 2 sides of my family. My grandmother's Mom and Grandmother both had it. At one point Grandma's Mom was in such pain the dr. stuck a needle into the bone to drain the fluid. YUCK! My old great-aunt, (the one who is 90) sister to my Grandma, said she felt better after that was done. I have a picture showing the protruding bone in her wrist. Now, about 15 years ago, my Mom was diagnosed with it. I knew she had the protruding bone and not much strength in her arms. A couple of years ago I was going through some old photo's and came across one of my Mom and you can see the bone plus a slight curvature. Now I know nothing about her family at all. I don't remember any curvatures. I will have to check out the pics of that side of the family. I ran into an old family friend who remembers me when I was born. She told me that when I was a little older and was sitting on the floor playing, when I was ready to stand up I crawled to the couch, put my elbows up on it and pulled myself up. She was still mad because my Mom wouldn't allow anyone to discuss my arm and refused to take me to a dr. Actually she did take me to the dr. as I remember way back drs. looking at my arms. I have assured her it didn't matter anyway, it is something that cannot be fixed. Funny, my family was so good at raising us, but wouldn't acknowledge my arms were different. When my Grandma used to babysit with us and anyone came to her house, she used to say "_ show them your arms." She like me was sort of proud of them and how I could do anything with them. Although she never mentioned her Mom or g-mom's arms. They didn't know about the pain...I never told anyone about that. I assumed as a little kid everyones arms hurt. My grand-daughter has the protruding bone, but no pain or curvature. She is 12 now. I am surprised at the size of others wrists of the people with it...it appears they have very heavy wrists and big hands. Mine are very tiny. So, if I got it from 2 sources I assume that is why I have so many problems? well i survived yet another surgery. here is what they did in surgery and photo's of the splint i am wearing. it just never ends!
surgery on feb. 23rd, 2204
- removed the plate.
- shaved down the ulna bone.
- the ruptured tendons could be repaired, so....he reattached them to the fingers.
- he split the scar tissue in the wrist, took the right side and folded it over the tendon repair area, took the left side and flipped it over the other side so this part is enclosed in the scar tissue and never can come undone.
- next, he moved the wrist back in line as it was dropping down and attached it so maybe with luck it can't come loose and drop down again.
i went in yesterday to have a splint made for my wrist and fingers....here are the photo's of how i came out of the hospital. this is called a "reverse kleinert" splint. it took 3 1/2 hours to construct this masterpiece. twice she had given up as my wrist is like none other. same old problem...fit it to one angle then move the arm and the angles have all changed. twice she called in the head therapist who managed to pop up with a couple more ideas each time. as the surgeon had to reconnect the severed tendons to my fingers, this is the process to slowly stretch the tendons out and make the fingers work. i am not allowed to raise my fingers up, just trying to lower them to the flat part of the cast. she molded the cast to me, then attached the arched bar across the top and started connecting the fingers into the little slings for each one.
ran into a problem when the little finger refused to stay in line. it tends to stray all over the place without my knowledge. it threw all the work right out the window...everything has to jive perfectly for this to work, no allowance for roaming fingers! the therapist had one more idea...cut the little finger off ... she was only kidding (i think!!) she cut the side of the cast loose on that side and now the finger has to make its way down to the lower piece of cast below it. each of these little slings are a piece of suede connected to the bar with rubber bands. the idea is i have to work these fingers so they lay flat on the cast. i pull them down but must allow the bands to pull them back up. i cannot bend them up or they will break. i am doing pretty well...the back of the finger under my nails now rests on the cast. not the little finger....i work him too but not near the cast yet. one good thing...our little pinkies aren't of much value anyway. this is very painful as the fingers are so sore.....never a dull moment.
just a short update. i went back to occ. therapy today. they were really pleased with my progress. i can lower the 3 fingers very well. the baby finger is stubborn but i have even moved it quite a lot. so....my reward....they removed the rubber bands and added smaller ones. now i'm back up in the air and have to lower them all over again!! they sure are sore but still moving. next mon. i get to spend part of my days without this contraption and start moving my fingers some. will wear it at night then the next couple of weeks they will make me a half splint to wear at night only. the tendons seem to be holding in there very well. .
(Update Sept 2004)
I have just been having a look on your web page to see if anything is new. I am a 44year old Australian female and was only diagnosed with MWD, in both wrists, at the age of 42 years. This was the first pain I experienced. Since then it has been a rapid decline. Prior to 2002 I regularly played tennis, water skiied, rowed, restored antiques and played golf. Since being diagnosed by an orthopedic surgeon, who just wanted to grind the ulna bones back, I have been under the care, of proportedly one of the best wrist surgeons in - . Unfortunately he has said there is nothing that can be done that will have a definite good outcome. He has instructed me to participate in any of the above, apart from rowing - but I am not to lift- which I find extremely painful anyway. He say's the more I do the quicker the demise will be, which I fully believe. Unlike the majority of people on your web page I am 160cm tall (or shortish), but have very long legs and arms but a very short body- so that is probably more to do with a growth hormone problem than MWD. Also I have three sisters and two children and one niece and nephew- who have all been x-rayed and do not suffer from MWD. My orthapedic surgeon feels it may have been caused by shock, which I suffered from after I had a car accident at the age of 19. I also, much to the amazement of doctors then, had not finished growing, which is why he feels it may be the cause. Anyway there is a story on your page from an Australian regarding locating a doctor in Australia who has heard of MWD. I hope you can forward the following name to her, as I have extreme faith in this doctor, his name is (.....) . If you could would you please give them my e-mail address, or to anybody else in Australia with MWD. Also could you tell me if there are any other cases you have come across that do not have a family history or short arm stature as well. I must say I do worry about the future as in two years I have gone from being very abled to being disabled in a great many things. I also find on of the worst things to do is vacuuming. Thank you very much for your page.
hi i am a 15 yr old american female just diagnosed today w/ MWD & i have to say, reading the information & responses on your website has truly made me feel better. i was slightly nervous hearing that i have a deformity but i am at ease now that i have read that i am not alone. it is interesting to me that several other girls in my age group have been diagnosed with this same problem. i was originally diagnosed with mild carpal tunnel syndrome only until the specialist decided to do some x-rays. my pain began late last year (2003) completely out of the blue & i have noticed the loss of strength in my left wrist. i was grocery shopping the other night & dropped a small box of food. unfortunately i spend a lot of time on the computer due to school & my doctor blamed the pain on this. the loss of strength as well as overwhelming pain has been a true eye opener. thank you for all the information on your site & i will check back ocasionally for updates on what other sufferers are doing.
Followup
I've been a little busy lately- I just turned sixteen! I actually had my first follow up appointment a couple of weeks ago for my madelung's in my left hand. After I explained about the pain I had been feeling during school in my right hand, the specialist did an x-ray. I do NOT have bilateral madelung's! He said that if anything, I may have a slight madelung's in my right wrist, but it is definitely NOT as prominent as the one in my left wrist. He thinks that the pain came from overusage of my right hand to relieve the pain in my left. (It never ends, does it?) I received a soft splint for my wrist that is much more comfortable to sleep in & will hopefully be easier to use once school starts again. Right now I'm just trying to take it easy & remember to take my B-6 vitamins. The doctor says that those may help.
My 16 yr old daughter's madelung is getting worse. I am 40,female. My mother has it, as do 2 of 3 of my sisters. We are all 5'-to 5'2, except the sister who doesn't have it, she is 5'9. Each generation has progressively worsened. I use my wrists at a job I do 1 day a week (display), and live with increased pain for the remainder of the week. I should quit, but refuse to allow the pain to dictate my life. In some ways it has too, range of motion is severely limited, but as everyone else has, you improvise. I have not had surgery, may need to someday but am leary of it as there is so little research, and not a very good percentage of positive results. My daughter may have too, which led me to more research and your website. Thanks! Primarily I am trying to get her out of PE at school, and just focus on things she CAN do. I wish more physicians were aware of this, that is perhaps my greatest frustration. I have found that it helps to research it before I go see each specialist, and bring them copies. I was told as a teen that this wouldn't get worse once I stopped growing- even when I don't use my wrists much I find they are wrong. I frequently have to pop my wrists, wear supports, etc. Cooking, cleaning, lifting, etc all have been modified to be able to complete simple tasks. Even turning your wrist to get vitamins to your mouth can be a chore! I'm actually saddened to hear so many others live like this, but a bit helped by the fact that someone else understands the many ways you have to readapt, and live with the pain. I doubt I will ever get surgery despite pain, but would love to hear positive feedback on surgery for my daughter! Also have a nephew that is dwarfed- he is 10, they are researching now.
Thanks for giving people the opportunity...! I have done geneology, and find it interesting that you are keeping geographical data. The side of the family I trace this back through is from Norway. I live in - , - , USA. Reading further, after I emailed you, I enjoyed the 62 y/o lady that gave helpful hints to age with 'less pain'. I am primarily frustrated with the lack of options to fix my wrists, and while we all adapt to perform whatever we are physically capable of, the ideas and helpful hints were interesting. The pain is a side factor you learn to live with- no choices really. My wrist(s) hurt more than usual this week, and the left hand is numb as I type. I really didn't think this would get worse. At 40, and as fast as they seem to be worsening (especially in range of motion), I find it a bit alarming, and I am taking more precautions not to overuse them. Unfortunately that probably means quitting my display job. My mom thanks you for the website as well. As I said, primarily I am researching now to figure out whether surgery is a viable option for my daughter; she doesn't want it, what she has researched scares her, but she is very limited in activities, and has trouble with a lot of homework etc as she is righthanded and her right hand is worse (both are bad). I printed your website and other emedicine data to bring to specialists for advice and hopefully to find newer options.
I was actually diagnosed about 20 years ago, which given how many people knew so little about it I have to say I'm thankful the doctor then knew something (took a few doctors to get there though!)... One of my sisters went in and also had a diagnosis done about 10 years ago. B my daughter, was diagnosed about 3 years ago. All with different doctors- my mom would actually like to get all of us in one place, to see how it regresses by generation, and to help them study it, especially if this is what is affecting my nephew's growth. It definitely has progressively gotten worse. The University of - would be a good place for studies, and I called them yesterday to make an appointment for B and I anyway, & to see about surgery options for her. S wrote, which was one story I was really interested in as their ages were so similar, and their surgeries sounded successful, unlike so many others. I was happy to hear from her. Thanks for making this possible.
I have a 6 month old son. During our 20 week scan bilateral talipes was diagnosed, we went for a very detailed scan and all his organs etc were fine so we continued with the pregnancy. During that scan the consultant stated that he had a relatively short femur. When D was born -.-.2003 the paediatrician noted that he had shortening of the long bones on both his arms and his legs. This wasn't very obvious to us at the time. His wrists have a 'broken' look and the middle finger on his right hand appears to have a knuckle, but D seems to be unable to bend it. We were met by Dr _ _ who is a consultant clinical genticist who works from _ _ Hospital. He examined D and then wrote to us. The letter stated his normal head, eyes, nose, ears and mouth. At the time, D was in plaster casts for treatment of the talipes so he was unable to see them but he stated " The only definately abnormal finding was in the upper limbs where he had ulnar deviation of the hands at the wrists on both sides with relative shortening of the ulna in relation to the radius on both forearms. There was aloso incurving of the little fingers - clinodactyly. It was felt that there was light shortening of the humeri, which are the bones in the arm between shoulder and elbow, and femori, whch are the thighbones. There was shortening of the forearms more noticeable in the unlae than in the radii." D is developing well, making many sounds, grips toys, smiles etc and I feel that he is developing well. However, I am concerned for his long-term future and would like to find out more about his condition to see if there is anything that we can do for him. I have noticed that trousers that fit him round the waist and are relevant for his age-group are at least 1 inch longer than he needs to wear.
followup June 2005
I have had some news from my sons genetic expert and he has ruled out leri weil and Madelungs as the skeletal problems do not fit the syndromes. He has sent off D's x-rays etc to the european skeletal dysplasia group to see if they can shed any light on it. So, would you please remove me from the circulation list. I wish you and the members of the group all the best. Thanks
Hi I have read your web site and find it very informative and useful. My husband was only diagnosed this year after stuggling for years getting doctors to listen to him. He has got Leri Weil and Madelung along with the short stature. It does run in his family the short stature, and the Madelung can be clearly seen in his mother and sister. The blood results we have not long got back, but the strange thing is, although my husband shox test came back normal, apparently, it is normal for a man's shox test to show this. As it is harder to show up in men than it is in women. My husband is now waiting for his right arm to be fused, as this has got really bad over the past year or two, and then they are going to have to start on his left as this also has got really bad. I have also got my young son who is only 5 years old, now waiting for the test, as he shows the short stature and limbs. My husband by the way is 5 foot 3 in, his mum is 4 foot 9 and his sister is 4 foot 6 inch.....my son who is five is only about 3 foot high, but has very little legs, as he is still in 1 year old trousers and 5 year old tops....which can be a bit awkward at times. I have now started up a support group up for people of Leri Weil and Madelung along with the short stature.
My name is T _, I am an English born 42yr female Australian with a right wrist (and short arm) that looks just like all the pictures on your website. My mother also has this (but she was operated on in Bournemouth over 50 yrs ago and now has a stiff wrist ( on her right hand). Her Grandmother had it in both wrists, and I intend to ask if it goes back any further. I didn't really take any notice of it until sitting my high school finals...painful. My daughter is researching genetics for high school and asked if my 'funny wrist' has a name, but more importantly she wants to know if she or her brother could pass it on to the next generation? Neither of them have this deformity nor my brother and sister and their offspring. Until I read your articles I thought my unusually sensitive hearing (especially for high frequencies) was just a curse - not related to my wrist. I am 5'1", so is my mother, as was her grandmother.We are all left-handed. I don't know very much about 'Madelungs' except what I have learned recently from a young girl with much further advanced bone deformities who noticed my wrist at a school function and came straight up to talk to me. It's a bit confusing trying to research the net, but I found your website very helpful. Thank you T
I would like to understand a little more about what happens as I get older, and the group sounds very interesting. To answer your stats Question: My mother lives in Australia, and her Great Aunt (her grandmother's sister as it turns out after Q & A time last week) is now deceased, but lived in - , England. My mother remembers another teenage girl also having the operation she had at 15yrs old to "straighten her wrist". She does not have the internet, and believes our deformity it is not something to be discussed at great length (bit frustrating really). The other young lady I mentioned was born in Australia, and beyond that I know very little of her condition. She said that there are approx 12 kids in Sydney like her. She appears to have the deformity throughout her body, and is very small for her age and frail.
Husband of wheelchair-bound wife with DCS enquiring whether an arthritis-like problem with their 8-yearold daughter's knee could be related to DCS. All I could say was it could well be connected. The medical opinion they had sofar was unknowing or non-committal. I could only advise him to go to a library/ friends/ relative and put dcsmwd as a keyword in a search engine and read the contents of these files. If he considered it relevant then contact again by email.
Wow i cannot believe i have found some information on this condition i have. I always just thought that i had really large wrist bones until i went to an orthopedic dr for a shoulder problem. When he was finished with the exam i said "dr what is this". I held my arms out. I thought he was going to choke. He grabed my wrist and started asking questions. trama? no cist? no lets get an ex-ray he said. When they came back he stared at them for a long time. I asked "do i just have big bones", no no he said " a name of this condition comes to mind but i will have to consult with a couple of drs." This scared me because this dr has been around a long time. He called me later and said that it looked like something called Madalins Deformity (so i thought) and that he did not know anything about it really. Well recently i have been haveing alot of pain. I am female 28 years old, and i thought this can't be right. I started searching the web to see if i could find something. When i found the real name i was so surprized. I had no idea. Do you know of any drs. or hospitals that know how to deal with this, or just someone i can talk to. I don't think anyone knows the pain i, am. I live in the US more specific - . thank you for your wonderful web site. I have three sisters they are all at least 5'4" tall and none of them show any signs of mwd. i am 5' 6' tall. I have very limited information on my mother's family due to the fact she moved us out to _ when i was seven. she past away when i was 20 years old. my father was adopted. He does not have any info. on his biological family history. I have four children. two boys and two girls they are still young and i don't know if they have it. I have never really looked at them. How many people do you estimate have this condition? thank you so much, K
My name is J and I have madalungs deformity. Absolutely no one can seem to tell me anything substantial about it. What I DO know is that it is painful and that I feel powereless because of lack of subject matter. I have two daughters and the chances are likes they have it. If you could, would you possibly respond. You seem to have extensive knowledge about the subject. Thank you very much for your time. Sincerely, J
My name is A, I am from ,_ , Canada. I was diagnosed with Madelungs when I was 11, both arms but right worse. I am now 22 and I am still in excrutiating pain daily. It doesn't hurt as much now as it did when I was younger, I can remember being 12 and crying my eyes out every morning because I could not even wipe my rear end. It took me three doctors just to find out what I had. But for months before I even went to a doctor, my mother just thought I had growing pains. I was told about the surgery (hip bone) but the doctor told me it was a waste of time, that I would not get back the motion and it would still cause me pain. At this point and time the nerves in my hands are beginning to show the stress damage and arthritis is starting from my elbows down. My fingers are constantly swollen and my joints(fingers) are turning purple. I know that there are plenty of diseases worse than this but I sometimes wonder why I even get out of bed every morning. I can't do any of the things I enjoy without spending the next few days in crippling pain and jobs that doesn't require using your hands are far and few between. I don't know if I have any of the other diseases because the doctors didn't even look into it, and I stopped wasting my time driving 4 hours just to see a doctor that doesn't know jack. All I know is that my knees and back have always bothered me too. If anyone knows if these symptoms are related please post it
I found your site after looking up gymnasts wrist deformity and found something with similar symptoms to my daughter.I took her to see her G.P. 3 weeks ago about a lump on her elbow,but I had phoned for an appointment 2 weeks earlier and by the time she saw him,it was going down.In conparing her arms, he became much more intrested in one of her wrists, where the boney lump at the end of her ulna sticks out 3 times more on one side.He sent her for an x-ray and not surprisingly I've been told there's a problem and I'm waiting for an appointment to see the G.P. again.She does a lot of gymnastics (5 hours training plus upto10 hours practice at home a week) and when we initially saw the G.P., he wasn't very specific about what she can and can't do. As she has no pain, she isn't limiting herself and needs constant reminding that the doctor said to be 'careful' !!Having read your site I don't know if she has madelung or not, she is very small for age but in proportion apart from thin with long legs, myself and her aunt are both quite short ..5'0'' and 5'3'' and all our family have large calves in proportion to our size. Does it sound to you that she might have it? Does every one who has it develop pain? will she be able to carry on with gymnastics,both imeadiatly before she sees the G.P. and long term? Where can I go for answers as her doctor is very unspesific.Also, I've been told that the british gymnastics have a scheme where you can pay £40 a year and see a orthapedic doctor who specifically treats gymnasts....would this be worth my while?.....I understand that these symptoms can be caused by repeated microtrauma i.e. foreward flips and vaulting etc.. yours sincerely C
Hi I have just come accross your file on the internet and found it really interesting. Have printed it out for further reading. I was diagnosed with Madelungs deformity when I was 13 but the doctors didn't seem to know too much about it and said just to leave it. I have it in my left wrist so it dosen't affect my writing but it is very weak and sometimes painful. I am 25 now and have been considering getting it fixed. Iwould be interested to hear your thoughts on this. As far as we are aware I am the only person in my family who has madelungs deformity. As I said before I don't know very much about it, just decided to have a look on the internet yesterday and came accross your site. S
Hello my name is A. _ from _ _ , Canada. I was so glad to find your website. I have madelungs wrist deformity. I am now 30 years old and I was diagnosed when I was 12. The Doctor that I went to at that time didn't know much about it and basically said that it was something that I had so live with it. It was found when I sprained my wrist and x-rays were taken. I always had a problem with sprains. My wrists never bothered me that much until lately, I would have some pain if I over used my wrists but nothing more than that. For the past month I have been experiencing severe pain in my right wrist, the pain will start in my baby finger and shoot up to my elbow, I also have numbness in both hands, I am forever fumbling things and dropping things. This is when I found your website, I wanted to know more about Madelungs as the only thing I really knew is that my wrists were permanently dislocated. As of now I am not able to go to work, I am a nurse. I went to my family doctor a few days about this and she told me that the pain I have is golfers elbow. She had never heard of Madelungs and I explained to her what it was and she said that the pain I have couldn't be from Madelungs because it didn't bother me before. I do not agree. I did convince her to book me for x-rays and to an Orthopedic Dr. But it could take 8 months to get in to see him. And what will he know about Madelungs? Right now I am living frustration. I have already been diagnosed with Madelungs, couldnt this be what is causing the pain. I have 2 boys to look after and it is so frustrating not being able to do the things I used to do. Any Advise? I would like to join your group. There is no one else in my family with MWD or DCS. Once again thanks for your website, very informative. A
Hiya, I found your highly interesting site via Google. I was diagnosed with Madelungs of left wrist when I was 12. Unusually mine seems to have been caused by a severe childhood injury (argued with an elevator and lost) but only showed itself much later. Initial treatment was shortening (and pinning) of ulna when that failed they ended up removing last 3rd of the ulna (actual done by _ of Southampton General Hospital). I can go into more detail if you think it may be of interest/help to anyone. I no longer have any images of the original deformity but do have some X-rays of the wrist as an adult (radius head has changed quite dramatically to accommodate lack of ulna joint). Cheers and keep up the great work.
I'm the only person in my family with the condition. Happy to join the group particularly if you think sharing will help others (after 20+ years with it I'm pretty 'adjusted'). I have jpgs of the x-rays already, let me know if they're useful (and how to get them to you!). Wrist is fairly stable, starting to stiffen up a bit which makes the geometry problems a bit worse. Any further complications now will be the result of age, wear & tear on a sub-optimal joint. The lag between trauma and condition was about 10 years, the condition actually developed 'backwards', the radius stopped growing prematurely (chipped growth plate we think) and the ulna continued to grow pushing itself and everything else out of alignment. I know what you mean about rare though. I used to get fed up being introduced to the latest ortho ward doctor as "the traumated madelungs deformity" as opposed to "S-" which I generally prefer!
Image sequence (left to right) is as follows:-
1) Left hand, palm down
2) Left hand rotated 45 degrees, palm down & thumb raised
3) Left hand rotated 90 degrees, thumb raised (closest to x-ray source)
In other words, start with your left hand palm on table then take two more +45 degree rotations (anti-clockwise) each time.
Ulna protruded severly out of the side (neither up nor down, just to be different). At maximum, the ulna protruded approx 3cm. Post-op the effect is of a slight reverse MWD (palmward distortion of the missing ulna!).
I can't remember the names of the procedures (there were two) for the first two failed procedures that involved shortening, pinning and drilling the growth plate. The final op was a 'simple' excision of the (distal) third of the ulna.
The floating bone fragment you can see in the x-ray is post-op calcification, it wasn't there after the last op (took about 3 years to appear). The severed end of the ulna proper was also squarer and much less tapered.
Incidentally range of motion post-op is now 'interesting'. Keeping your hand flat on a table you should have something like the following horizontal range :-
Direction of thumb -> 30 degrees (I have 80+ degrees)
Direction of little finger -> 45 degrees (I have <5 degrees)
I think I've been rather fortunate looking at some of the others. Also left wrist is now 4cm shorter than right, I guess that equates to how much earlier the left radius stopped growing now that the ulna isn't contributing to the length of the arm.
hi nigel i am a 39 year old female who has just been diagnosed with madelungs two months ago. i've been reading all the emails sent to you about this deformity but have not come across any one who has the same thing as me. i have never had a wrist injury or wrist pain up until two years ago. i went to the dr and he said i had tendonitis and gave me some cortisol injections which seemed to help until recently. i then went to see a orthopedic hand surgeon who did some x-rays and knew right away i had madelungs. my question is can you have it for all this time and not know it. my job for the last 7 years has consisted of working with my hands doing the same repeatative motion all day. can this bring on the symptoms. i would like some more information about this subject or maybe talk to someone who has had a similar experience. please help me if you can. thanks
i live in the united states and have no known family members with this deformity. my children ages 18 and 16, both have ganglion cysts that's about as close at it gets. thanks for responding so quick i have my first therapy today and am looking forward to seeing if it helps
Dear Mr. Cook: It is very refreshing to find someone with knowledge of a condition I have had all from birth - that doctors seemed confused about. I am 58 years young (2004). I have been told that I had arthritis, carpal tunnel syndrome - to over-worked wrists I Knew all along there was more to the condition. I suffer pain daily - sometimes there are shooting sharp pains that travel from my hands to my elbow! I had to stop working due to pain and not being able to get my hands to function properly in the morning, but MANY doctors believe to differ; I wish they could spend a week in my condition. I had surgery to my left wrist last October and the pain is still there at times almost unbearable. I will write more later. My wrists and hands are hurting. I type in a semi-fist position using my thumbs and point fingers. Sincerely, M
Followup from S2/2003/ Oz
I have a couple of questions i thought you may be able to help me with, or you can guide me to somebody who can. I'm still trying to find out where the best doctors are in Australia who may or may not know anything at all about our condition, but of course it all comes at a price. Specialist are expensive and are never in the city you live in. Anyway never give up as they say. But i do have a very serious question for anyone out there. For a while now i have been suffering, along with sore wrists, with a very painful back. I find it hard to sit for longer than 10 minutes, so you can imagine after typing this email how much pain i'm in. The pain has been getting worse and worse. My spine feels bruised but there is no bruising just a whole lot of knots, which i can't get rid of. i would need to be in massage therapy for a week just to feel anything. I have also been getting the shakes in my left hand (i'm left handed). Not often, but sometimes my hand just shakes uncontrollably. Does anybody else experience such symptoms. There is no use talking to a doctor because i'm the one who prints off information for them from your website to get them to understand me. That is not the way it's supposed to be.
I'm a 27 yr old female and was diagnosed with MWD when at 13 and have had three corrective surgery's to try t0 correct it and it still hurts it just hasn't dropped any in physical changes ..... My doctor as well said it was something I would have to live with as far as the pain ......Which isn't a easy thing to do....My family in Sweden also show major signs of having this same thing but have not yet been treated as such ....My mother also has it in one of her arms but I have it in both......It is very hard to type or do normal everyday things in life due to the pain...My oldest daughter has also showed signs of having MWD in both her wrists but hasn't been to a DR regrading it as of yet ....I read in some of your articles and in emails that alot have severe back pain as well ...I was diagnosed with scoliosis of the spine which is also a curve of the spine my right leg is three inches shorter then my left and it has caused great pain in the last few years ...It hasn't been said that it links the two as of yet but it sounds as though it might and something for someone to look into as well..I would appreciate any information that might help my family in Sweden or my daughter as well .....
My neice was diagnosed w/this disease 2 years ago. She is now 15. She has had surgery on both wrists, 1 dec/03 the last june/04. The left writs had 2 pins in for 4 weeks. The right (2nd) had 3 pins in place for 4 weeks. Her right one is doing better.(dominant) Her mother has the disease, just found out her son (different fathers) age12 is beginning to have pain in both wrists. I discovered last year that a major medical center in Texas does numerous surgeries a day for this disease. My orthopedic says it is not so uncommon anymore.
I'm M... from Holland. I'm 15 years old now and I got Dyschondrosteosis. They diagnosed me with this disorder when I was 14 or something alike. When I was 12 I also had pain, but they didn't told me where I was suffering from.. This was when I got to the docter for pain in my wrist on the right. He said to me: It's nothing, It will stop when you'll be older.. So I thought it was nothing, but when I grew older and became 14 it was horrbile to see *My opinion*. So I visited my docter again and than he said that I had to go to a hospital that knew all about this kind of disorders.. So I came there, Hoping they could do something for me.. Or tell me something that was usefull. Well, he could tell me I had Leri-weil.. But he also told me that there was nothing he or somebody else in Holland could do for me.. So I stoped searching for a while.. But I'm in 4th grade now, And I can't join my classmates in Gymnastics Because of the pain I'll get when I will join them. So I had to make a report about Leri-weil, what it is, The things I can do and cannot do.. And the influence it has on my life.. So this is the way I got on this site.. And it gives me a good feeling to read someone elses story. Not that they also got pain.. But that there are stories that I can find myself in.. Maybe this is a foolish thought but I think it was better that only I had it, so the others with Leri-weil didn;t had the pain and could do anything they wanted.. Maybe it's great to have someone to talk to.. that knows what you feel and what you're going thou, but if you know what you feel.. than I guess that you never want somebody else to have it.. because you know what they feel.. and it's Not cool to know that.. I've got pain in my wristes, knees, my back *because of the knees* and my hips.. Sometimes I just can't move.. Can't stand on my legs..Got the feeling that my muscles can't handle it anymore.. like they can't carry me.. I just can't describe it.. but I guess some of you know what I mean unfortually.. Well.. I hope some day I'll get surgery or something.. so I'll get rid of some pain at least a little bit..I don't know if I can get in touch with people from holland from this site. I've got a family member that also got DCS, My mother, but she never talks about it.. Only when they first diagnosed me with DCS. And you say that you got no trouble in your daily things.. Well, since the past year my wristes turned so badly that I can't even write without getting pain. I'm used to have pain all the time now, it's no suprise for me anymore that it will never *totally* go away.. But the insurance company gave me a laptop for school, because I have to make alot of homework and things on school. And my wristes just can't handle it anymore. When I write, you and I can't even read it back, and more pain comes to my wristes..
Hello, I ( female ) was diagnosed with Madelung wrist deformity when I was 14 years old. At that time, I was dropping things, soda bottles is what I mainly remember. It was as though I simply couldn't keep my hand closed around the bottle long enough to get it out of the fridge to the table. The wrists became painful and one day my mother looked at it and we noticed my arms were actually crooked and it looked as though I had 2 wrist bones. My parents thought maybe when I'd fallen out of a tree, I broke my arm and it healed wrong and we never even knew about it - well, that seems funny now, but anyway, we went to the hospital and they immediately sent us to _ _ in ( Massachusetts U.S.A). There we were told it was Madalung. I had surgery on only my left wrist as they said the right wrist was not as bad and I would likely stop growing before it became a problem. They simply cut the longer bone back and I wore a cast for an entire summer to try and straighten the bowed bone. This didn't work as well as expected, although it did help. Both arms are visibly crooked or bowed and it's obvious that when a "normal" person holds their arm out palm up, and I do the same, my arms look as though the elbows are attached at a very odd angle, and actually I am unable to hold my arm out with the palm facing up. I have to say I was so interested in your web site as I have never met or even heard of anyone else having this deformity. I am 45 now and in the last couple years noticed a lot of pain in my arms and they are very weak. Many times I cannot lift something unless I use both arms and I have had several instances of dislocating my elbow. The doctors I have seen always say there is no connection between that and the Madelung, and then again they have never heard of Madelung and when I explain it they just look at me funny. I was doing some research on this because my youngest son has been diagnosed with Neurofibromatosis. Misshapen bones can be part of this and I was curious if there were any connection - so far it seems not. Thank you for the website and the information you have given. It was amazing to learn that there are others who also have this and the information was more than I have ever been given. Thank you,
I was given this website address by my doctors. I was told I had the Madelung Wrist Deformity when I was 13 years old, at _ hospital. They did want to carry out some research at the time, however, at that age I wasn't interested. They mentioned something about breaking my arms and lengthening them with metal rods. As far as I was and am concerned I was lucky, I have arms and hands, it is just a case that they are a third shorter than everyone else. I have been very lucky reading the stories on your website, as I suffer with no pain in my wrists (or lack of them). The only problems I have faced with having short arms is: school - children are very honest on what they see. Buying clothes, like jumpers, shirts etc. I do alot of exercise and weight lifting and have never experienced any problems (touch wood). I (female) am 32years old and 5foot (well 4ft 11.3/4). With regards to family history, my older sister doesn't have it. I think my Mum has it slightly, although she disagrees. The only member of family I know that had it apart from me, was my Great Aunt, I think looking at her picture she had it in her legs aswell. My only concern is for my future children I may have, hopefully they will have located the gene and can remove it!
I was searching the web and came across your site which has been helpful. I live in the U.S. and in recent years have gone to Peru, S.A. on mission trips to a childrens home. One of the boys has the disease and we are going to bring him to the U.S. for treatment. He is in a lot of pain and we are praying that he can get treatment here. In Peru they were talking about breaking the bones and putting in rods and stretching them as he grew to keep them straight. (I am not sure as to everything they were considering since I was not there). He has this in both arms and both legs. He is 12 years old (he will be 13 on _ ) He is going to go through a growth spurt here soon and I know that there will be a lot of pain involved. He is short for his age, he is about the size of my 9 year old. Are there any sucess stories from those that have had surgeries for Leri-Weil or was there any growth after the surgeries. I just don't want him to feel the pain anymore. He goes to the embassy in a couple of weeks to get his American visa (if all paper work is in order) he should be here before February 2005.