Dyschondrosteosis and Madelung Wrist Deformity ( 2002 )
Personal stories concerning MWD / DCS submitted to this
site in year 2002
Start of year 2002
From V in the UK by contact by telephone MWD + DCS
Age 51 in 2002 she
had a wrist bone removed in 1972 but has had no problems since, doing sport and
working with keyboards. There is a family history over 4 generations with MWD
and DCS of at least 6 people. One of her daughters has a habit of standing with
hands on hips with elbows directly in front so it looks almost as though her head
is on back to front. Her mother explained away her own wrist appearance as
having been due to falling off a swing as a kid.
From S4 in the USA in e-m contact [ CL ] DCS+MWD
I am a 42 year old
female (in 2002) with a 20 year old daughter. We are also diagnosed with
Madelungs. We have both had as "successful-as-you-can-get" surgeries. Hers was
preventatvie/corrective on both arms and mine was corrective on my right arm.
The left arm they can give me no more of an advantage than what I have. There is
a definite family history of Madelungs. It seems so far that only my daughter
and I have been subjected to the painful form of it. My older half-sister has
unusually short and thick forearms but seems to suffer no ill effects from the
deformity. One of her sons has a deformed upper arm but is still growing. We can
trace it through my mother to her mother. From there it looks to have come here
from a male Greek influence. We all have short bowed legs and are between 4' 11"
and 5' 2" tall. I was diagnosed with Madelungs Deformity after many years of
doctors and x-rays. From the time I was 13 and dislocated my right ulna the
doctors have been scratching their heads and consulting each other over my arms.
My arm bones looked bowed, misshapen, permanently dislocated and hurt like
crazy! I received all different diagnoses and different surgical procedures
suggested. No one could agree or name something that seemed like sense to me. At
16 I told my folks to forget the doctors that I would wait for science to catch
up with me! When I was 22 and in a car accident the orthopedic doctor that was
looking at my spine and neck saw my arms and asked if they gave me problems.
After saying yes and relaying my history he took x-rays. He returned excited
saying he had just read an article by a doctor at _ Teaching Hospital in _,_ and
knew what my condition was. That was the first time anyone had a name for me as
to what I had. I was thrilled but hard times, a new baby and no money for trips
put it off. When my daughter was 9 she complained of her wrist hurting. One look
and I knew it was time for a trip to _. The doctor was great! After seeing him
and talking to him I knew for once that I had found as good an answer as I was
going to get in this life! He explained that it was a rare deformity and until
now it had been doubted that it was genetic. Rather it was trauma induced by a
fracture of the growth plate at the ends of the arm bones in early childhood or
an isolated mutation of a gene. He had seen other Madelung patients also. My
daughter and I were living proof of genetic transference. We talked over some of
the surgical options for both of us and then decided. My right ulna was longer
than the radius by an inch so he took out that amount from the middle of the
bone and joined the two ends together with a surgical plate on the outside of
the bone. This relieved most of the constant rubbing of bone on bone that caused
so much pain. What a difference. No more rocking and crying for hours and
sometimes days. For my daughter, who was still growing, the growth plate in the
ulna was stunted so it would not overgrow the radius-as it was starting to do.
In both of our arms the ends of the bones never developed normally. Instead of
the double knuckle shape at the end of the bone we only developed a single end
on each bone creating a valley in the head of the wrist that the carpal bones
move about in. The deformity is bilateral in both of us. We have had to learn to
live with it until medicine catches up with us. Maybe one day the gene therapy
will work for our grandchildren. Our wrists and arms will never be normal. They
will always cause us pain and let us know when we have overstepped our physical
bounds and when the weather is turning bad! Over the 30 years I have lived with
Madelungs I have come to adopt a few lifestyle adjustments. I don't lift heavy
things, pull heavy things or play volleyball and bowling is not for me! I have
found work that is not too demanding of wrists and I always keep painkillers on
hand. I too am tired of trying to explain when someone notices my arms, tired of
always having sleeves too long, tired of the constant undercurrent of pain but
it does make a great gross out trick at parties when I pull my hand away from my
wrist and twist the dislocated arm bones! I often dream of walking around in a
large city asking where the arm bone store is and everyone keeps saying it's
just around the next corner. When I get around the corner it's not there. Maybe
someday it will be! Folloup
I just wanted to thank you for the site and all
the work you put into it. My attitude towards having MWD has been improved by
knowing about others. You are a true blessing! Again thanks!
From G in the UK in e-m contact [ CL ] MWD
I am an 18 (2002) year-old
(female) sufferer of Madelung's Wrist Deformity. I had it diagnosed when I was
15 but suffered symptoms from the age of approx. 11. My consultant at - - -
offered no surgical treatment, but I use TENS as well as taking pain-killers
usually used to treat arthritis to control the pain. I just wanted to let you
know that I thought your web-site was brilliant, because until now I had never
heard of anyone else suffering from MWD. It's really helped me to read about
other people with similar symptoms to mine, because during the 4 years before I
was diagnosed, and even afterwards to a certain extent, I have always felt that
people didn't quite believe about my problems. Anyway, thank you so much for
putting together the web-site.
From L in the USA in e-m contact [ CL ] MWD
Hi, my name is L (female). I
am 35 (in 2002). I was first diagnosed with MWD when I was 15. I dont know of
any other members of my family that have any bone problems. My wrist have given
me sporadic bouts of pain throughout the years, mostly from over use. Right now
it hurts quite a bit to type or drive. At first a doctor said I had broken my
wrist. He was going to rebreak it to set it! Then after researching it and
finding MWD he was going to cut out both bones in and replace them with metal
pins, but I opted to wait for medical science to improve. Thank you for your
website, L in -.
From S5 in the USA in e-m contact [ CL ] MWD
Dear Mr. Nigel Cook, My
daughter is 12 years of age,4'1' (in 2002) was diagnoised with MWD July 2001. We
have all went to - - - - - Medical College for testing & the test results
found the SHOX screen test on our family members does not seem to be any
evidence of deletion or mutation in the SHOX gene. So basicly they have no
explanation for the wrist problem my daughter has! This has all been very
disturbing to me & my daughter! We have looked over several photo's &
the different articles but nothing? We have no nothing to go on but wait &
see's & frankly that's not good enough for me or my daughter! She would like
some answers & thats where you have come in! We have contacted everyone here
in the good ole U.S.A. & no one seems to want to do anything other than tell
us wait til she stops growing & then well see? We are now turning to you for
some help? There has to be a start to this somewhere & i think your it? You
have already done so much with this web-page. I had never heard of this MWD
until my daughter's wrist started looking funny & my neighbor pointed it out
to me & thats when we found a doctor in - -.that said this is what my
daughter has. Now it seems like every corner we turn we hit a dead end! If you
could please give me some explanation for my daughter we would be grateful for
any!You can e-mail me personaly if you'd like! Thank you so much!!! S (mother)
Followup 2 days later
Thank You so much for putting us in contact with
the people on [ CL ].We appreciate all you've done already!!! Please feel free
to e-mail us any time!
From K2 in the USA in e-m contact [ CL ] MWD + DCS
Hello Nigel, I had
visited your site long ago but decided after my return visit today (2002) to
write you. I am a 48 year old female in - -, U.S. I was diagnosed with
Madelung's at age 15. Funny thing, no one in my family had ever commented and I,
myself, had never noticed my wrists. But a fellow student at school noticed when
I was in 10th grade and started making fun. Then for fun, I would "gross" out my
classmates by letting my wrist go limp, dangling from my short arm. It appeared
as if it was broken off and hanging by skin! I was very embarassed by my
deformity, but truly dismayed after pain began in right wrist, with some
paralysis of a couple of my fingers. At age 16, I had surgery on my right wrist.
No cosmetic improvement at all. Did regain full feeling and function in the
fingers though! My right wrist and forearm are much noticeably deformed than the
left. I have the classic bayonet look of the left wrist. (right wrist also
except surgery removed the 'bump'). And my entire forearms are noticably
deformed as well. And yes, much shorter forearms than normal. I regularly roll
up my sleeves or pay for alterations. And like so many of the others on your
site, I wear long sleeves when I can get away with it. I dread the return of
summer each year and hot weather. You'd think by my age, I'd have adjusted. But
other peoples' stupidity and inconsideration always allows them to inquire as to
how I broke my wrists! I am 5' 2" and otherwise normal skeletal. The ortho. I
saw at age 15 told me it was heredetary, and that is was predominant in females.
In my family, one of my two sisters has some deformity as did my mother. One
maternal aunt is as deformed as I, has also had surgery and did lose use of two
fingers. Before my mother and her sister, no one in the families ever remembered
seeing this deformity. I also have frequent pain from typing, or other intensive
use of wrists. Cannot lift heavy cookware, etc., but otherwise lead a fairly
normal life. I cannot do anything which requires a position of my hands being
flat on a surface, as I do not have the range of motion. I have very limited
strength in my wrists and forearms. I have two sons, neither of which are
affected. None of my siblings children yet show any signs of this either. When I
was little, I would sleep with my arms entwined like snakes. I just thought I
was more dexterous than most! Then when I found out about Madelung's I
questioned if I had caused it! Its been interesting! One of the first jobs I
ever had was as a waitress. Imagine my embarassment (and surprise) when a
customer grabbed my arm and started doing an impromptu evaluation at dinner!
(turns out he was a prominent area ortho. doctor) Most physicians I see for
other care have never seen or heard of Madelung's. Only orthopedics know what it
is. I try to be positve and remind myself how fortunate I am in other areas and
how much worse off I could be. But the truth is, I will always be embarassed by
my arms. If there are any young girls in U.S. who would like someone to talk to,
please go ahead and give out my email address. I would help in any way.
K
Followup trying to establish why she didn't contact first time round
I
do not remember any postings from individuals. As a matter of fact, its a
wonderful site and I think you should be very proud. At the time I did the
initial search, I only found two "hits". Yours and a med. site. I am pleased
with your site, your response, and the response of a few others who have
contacted me by email. Keep up the good work! K
From J3 in the USA in e-m contact [ CL ] DCS +MWD
Hello Nigel, I have a
11 year old daughter (2002) who has Dyschondrosteosis. I guess it is also known
as Leri-Weil Syndrome. These are her symptoms: 1. She is short for her age, but
according to a Geneticist, she is not a dwarf. 2. The 4th metacarpal, metatarsal
of her hands and feet are short compared to the others. 3. Her forearms are
short. If she were to hold her arms out in front of her with the palms of her
hands up (AP position) Her hands would be turned medially (fingers pointing at
each other) 30-40 degrees. She has a range of motion from about 30 to 60
degrees. (Assuming that the hands straight out are 0 degrees.) The only other
way that I can describe it is that radius is too long and the ulna is too short.
She can't reach 0 to 29 degrees. 4. Her lower legs appear to be normal. We are
trying to find someone knowledgeable on DCS and were having a little trouble. My
daughter has no pain presently, but the responses from your web site lead us to
believe that she will develop pain in her wrist. Being that she is entering her
growth phase we don't know if it would be better to have some type of surgery
now, versus later in life. We would like to email people in the group with
similar symptoms who have had surgery. So we could find out what has or has not
worked. I'm trying to keep it short. If you need or would like any other
information please ask. Were sort of at the beginning of all this. We live in -
- USA We saw a Geneticists, Orthopedic Surgeons, and Hand Specialists and no one
wants to do anything. We have a appointment in Children's Hospital - - in June.
Any and all information you could sent us regarding treatment or who would be
most knowledgeable would be greatly appreciated. Thank you J (father)
From J4 in the USA in e-m contact [ CL ] MWD
Dear Nigel, Thank you very
much for this web site. My husband found it and it has been helpful to me in
understanding about this condition. I am a 37 year old mother of 3 boys and was
just diagnosed this past friday 4/26/2002. I have had strange wrists for as long
as I can remember but not any pain. About 5 years ago I started having burning
pains in my wrists, numbness in my fingers and loss of strength. My GP tested me
for alot of other things but found no evidence, She finally sent me to
Orthopedic Dr. here in - and in a matter of 1hour he came back with the
diagnoses (after x rays of course). The funny thing is here at work I have a
friend who also has MWD and she told me a few years ago that from the look of my
wrists I might have MWD (a 1000 people in her workforce and her colleague had a
brother also diagnosed with MWD). She was the second person I called after my
husband with the news. My Dr has prescribed me to wear wrist gaurds on both
wrists at all times for a while and then alternate them as needed for the pain.
I would like to know if there is any other treatments or studies that may help
me in this. My ulna is much longer than the radius, and the radius head is
malformed. From the look of the x rays I didn't see eight bones in my wrist I
only counted six in each. I have the bayonet wrists and like some with this
problem tend to bang the bone. I also can not wear a watch unless it is very
loose and about to fall off my arm. I am the shortest member of my family with a
father at 6 1, younger brother at 6 2 and an older sister at 5 11, I am only 5
4, my mother is 5 6. I don't know of any one else in my family with this problem
so how do I find out about my genetic make up? Are there any studies that I can
participate in near -? And how can I figure out if my boys have it, they are 12,
9 and almost 8, tall and thin in stature. I would like to hear for anyone that
may help me. You may contact me via e-mail - or mail -
From S6 in the USA in e-m contact [ CL ] MWD
Hi. I too have Madelungs
deformity. I am in my 40's (female,2002) and was told this many years ago.
(about 30) I guess I am lucky because I have no pain in my wrists at all. The
only problem I have is that it doesn't look very nice. If you have any questions
please feel free to contact me. I don't believe there is anyone in my family
with the MWD but my great uncle (who died many years ago) was very short in
stature and he may have had some type of bone anomaly. My grandfather was fairly
short as well. I am only 4'10" but have never been diagnosed with any bone
disorders other than the MWD. Interestingly enough, the diagnosis was made in
about 1975. I worked in the medical dept. of -- and just for the fun of it had
my wrists x rayed there. I guess the radiologist made a good diagnosis but I
never thought to follow through any further. I believe my grandfather and his
brother may have been from Russia. I don't know if any of this helps you in your
studies . S
From I in Holland in e-m contact [ CL ] DCS
Good day, I am I --(female)
and when i was surfing on the net (2002) I came on this internet site,
http://www.divdev.fsnet.co.uk/dysch.htm i was wondering if is is possible if i
came in contact with P in Holland (in email contact with) [ CL ] DCS . She
speaks of 4 families in Holland with leri weill and i believe 1 am one of them.
My father and i have this defect, and i was wondering if that is possible(if you
can ask her?
From C4 in the USA in e-m contact [ CL ] MWD
My 10 year old daughter was
diagnosed with MWD today (May 2002). Your site is wonderful. This site help
clear up some questions that I had. My daughter's doctor has left the decision
up to us to decide if we would like surgery. I'm just not sure. My daughter has
become very concerned about how her wrists look and she wants the surgery. She
has begun experiencing some pain but it is not ongoing. She cannot press hard on
the bone without pain in this area. What do you recommend? Should we let the
doctors operate? I'm not sure of the procedure that would be done. Would you
refer me to a web site the give more information about the procedure that is
done to correct MWD? Also what is the success rate of surgery for this condition
being corrected. Thanks for this site C (mother) [Surprisingly young diagnosis
with no pre-existing family history of MWD or DCS]
From G in the USA in e-m contact [ CL ] MWD
Our 7 year old daughter B,
has been identified (2002) with Madelung Deformity of distal ulnas & wrists
with mild exostosis, shortening of lower legs & bowing of forearms,
characteristics of Leri-Weill Syndrome [no previous family history of LWS etc,so
has the record for earliest diagnosis ]. Dr. - - , MD, PHD, Director of Clinical
Genetics of - - is helping us. Please reply to this e-mail if you feel any other
alternative treatment under study could be of benefit to develop her growth.
Regards, G
From J5 in the USA in e-m contact [ CL ] MWD
Hello Nigel, would like to
start by telling you what a wonderful website this is. Great to know me and my
sister's are not alone out there. I am a 40 year old male(2002), 6 of seven
children. Was diagnosed w/ Madelungs when I was 14. #2 and #4 children both
females also diagnosed about the same age as myself. Mother was the carry of
missing or mutated gene. I have a fraternal twin brother not a Madelungs
patient. I - 5ft8 160lbs, He - 6ft 225lbs . #2 daughter 5ft2, #4 daughter 5ft6.
My condition being most prominent as I was and still am very active. Sports:
Baseball second team - -, Football: Star halfback, Wrestling: Runner-up for
weight class. All grade school and High School Achievements. Avid Golfer and
Sportsman to date. Auto Mechanic in younger years. Presently Equipment Salesman.
After several sprains in both wrists, cracked protruding tip of Ulna on a couple
of occasions, now am experiencing bone spur growth on the right wrist. Extensior
Tendon is dragging and hanging up on spurs and no longer runs freely through the
6th Dorsal Compartment. We [sister's and I] have all experienced the pain and
immobility as mentioned in several of the articles on this page. My situation
has escalated recently. Over-compensation w/ the shoulder joint to utilize right
wrist has resulted in class 2 separation and won't heal till I stop using it.
Have not undergone any surgery to this point. Pain has escalated in even trivial
tasks and must be addressed. Have had recent x-rays and consultation w/ local
Hand Surgeon: DR. - -, he advises a very conservative approach: removal of bone
spurs and back together again. Have a second opinion next week 6-10-02 w/
recommended Hand surgeon: - - . Both DR. located - - . Would like the surgery to
include trimming tip of protruding Ulna, and recessing Extensior Tendon in 6th
Dorsal compartment, as I constantly bang it on anything I walk-by. Have been
meet w/ some concern from first consulting DR w/ this request. Am not ready for
fusing or hand realignment @ this point. I am only 40 and will have to address
this again in the future. Nigel any and all suggestion would be greatly
appreciated. Any specialists in my area familiar w/ Madelungs? Any contacts out
there familiar w/ requested procedure? Can you put me in touch w/ one that can
offer any insight? One thing I forgot to mention: while playing ball in younger
days, had the strongest throwing arm on all the teams. Must have something to do
w/ 45-60 degree hand offset. Guess there is something's we can do better than
normal wrists, Like Jimi Hendrix? Thanks again Nigel Sincerely J
From J6 in the USA in e-m contact [ CL ] MWD
Thank you so much for your
site. My fourteen-year-old son was just diagnosed with MWD by a pediatric
orthopetic (Dr. -) at the Hospital for - - --. We have an appointment with the
hospital's chief hand surgeon in a couple of weeks to further discuss his case.
Our son injured his elbow while baseball pitching but after seeing his wrists
the orthopedist referred him to a pediatric orthopedist, who then diagnosed MWD.
As my son is an avid baseball player, (pitcher/outfielder) I am not only
concerned about his general wrist functioning but also his wrist function as it
relates to his sports activities. Thankfully, at present there is no pain
associated with his condition. For your information, Dr. - copied several pages
pertaining to MWD from a section on Congenital Hand Deformities from a medical
book by Dobyns, Wood, & Bayne for us to read. After our visit to Dr. -- (the
hand specialist) I will be in contact to further discuss my son's case and pass
along any relevant information. Thank you again for the great service you have
provided with this site. My wife and I are in the process of checking for family
history (our son was diagnosed just two days ago June 14,2002) but as far as we
know there is no family history for MWD. I'll let you know if we find out
otherwise. Also, the medical textbook I spoke of is, Green's Operative Hand
Surgery, (2-Volume Set) . I'll pass along any useful information that we
hear.
Followup
I just wanted to give you a follow-up report on my
fourteen-year-old son's case. He was seen by a fine doctor who is the head of
hand surgery at the Hospital for - - - - . He said he sees a couple of cases of
MWD per year. In my son's case, as he was born with MWD, (though it only became
obvious within the past year or so) the supporting tissue has adequately adapted
to his mild/moderate degree of deformity. He currently experiences almost no
pain and has always been able to pursue an active athletic schedule (mainly
baseball). Therefore, Doctor - did not recommend any intervention or restriction
on his activities. He said they used to operate "on the X-rays" but now take
into account the whole patient. So, at least in his case, no surgery was
recomended (although he did recommend yearly X-ray's to follow the condition).
Needless to say, we were relieved to hear this news and are hoping the condition
continues not to impact our son's life any further than it has (he has lost some
range of motion in his wrists). Thank you again for the service you are
providing with this website.
From B in Australia in e-m contact DCS + MWD
Dear reader. My name is B
(female) and I'm 14 (2002). I came across ur website and I have
Dyschondrosteosis and Madelung Deformity. I don't consider this deformity as a
bad thing nor a good thing. I'm very interested to learn more about my deformity
but I can't understand all the big words in ur website. Please send me more
emails and information. Thanking You. From B
From S in Australia in e-m contact [ CL ] MWD
Hi there, I just wanted to
share an observation I made about the respondents to your site. I didn't read
all the e-mails, but I skimmed through many and it seemed to me that the
majority were female. Do you know of any gender difference in incidence levels?
I (21, 2002,female) have Madelung Deformity and was diagnosed when I was 11, one
of my sisters has a much more extreme version than I do, and the other sister
has not got it at all. In our family it seems definitely based on heredity as
our mum, our auntie and our grandma all have it. I always thought that it was a
Scandanavian thing, because my mums side is from Finland. I have had one wrist
operated on (right wrist) and my sister has had one wrist operated on twice and
the other wrist just once. We both have a backwards version of madelung without
the characteristic 'nobble' of the ulna, instead, our 'nobble' is on the
underside of our wrists. My sister experiences fairly constant pain, especially
playing the piano. As she cannot manipulate her wrists in the 'normal' way she
has to move her whole arms and force her hands into the positions she needs to
play the piano at her standard. I have a much milder condition and only
experience pain after heavy lifting or doing difficult exercises such as push
ups. My experience definitely parallels those of others in that the specialist
we were seeing when we were young said that we just have to put up with it. He
operated on us to provide a little more movement, but the pain was something we
had to live with. It's great to find out that other people understand, up until
now I had never heard of anyone else having this deformity. I would love to hear
other peoples stories too.
I'm really not quite sure about the details,
whether its just MWD or DCS, as i was so young when i was diagnosed all the big
words sounded the same to me and as I have not experienced much pain from it i
have not really asked many questions now that i'm older to understand. Since
finding your site however I am now dying to talk to my mum about it and my
sister and find out more information about the rest of my family.
From K3 in the USA in e-m contact [ CL ] MWD
Hello! My name is K and I
am a 21 year old female (2002). I was diagnosed with MWD just a few months ago,
but I am not convinced. I have never had any trouble with pain or protruding
bones or anything. I remember one Sunday night it just started to ache. There
was no trauma done to it. I went to my family practice doctor who had xrays
done, but he was baffled. My left wrist is extremely swollen at all times, in
the morning it is severly stiff, my constant battle is pain, i cannot use it at
all, i have no range of motion and all of my strength is gone No one in my
family has any bone problems at all. I have played sports my entire life. Now I
can't even shoot a basketball. I have seen a specialist, even had an MRI done.
Hopefully you can help me. I also want to mention that a month after I noticed
my wrist pain, I started having right ankle pain. The outside bone is very
swollen and it is painful to walk, especially on uneven surfaces. My doctors
aren't helping. Thanks.
From L2 in the USA in e-m contact [ CL ] DCS
Wow, I am amazed at the
information and personal stories on your website. I am from the United States,
and was diagnosed with having Madelung's Deformity at around age 8. I went to an
orthopedic surgeon for my disclocated knees (have had 7 knee surgeries, i'm now
32 years old,2002,female ). He was so intrigued by my arms, he brought them to a
medical conference. He said that Madelung's is very rare. I have "popeye" arms
and hate it. I am embarassed by my arms and constantly teased as a kid. Reading
your website I realize that I am lucky as I do not have any pain at all. I did
think it was strange that when I applied for disability insurance, I didn't
mention the Madelung's because it is not something that bothers me, however they
discovered it in my medical records and put permanent exclusion riders on my
hands, wrists and arms. That made me really check into Madelung's, but there was
hardly any information out there about it. Can anything at all be done about the
appearance of the arms, and do you have pictures of people with Madelung's,
besides the ones on your website. I have a 6 year old daughter who doesn't
appear to have this deformity and do not know anyone else in my family that has
it either. Thank you so much for the information out there.
From J7 in the USA in e-m contact [ CL ] MWD
Hi, I (female) was
diagnosed with Madelung Syndrome in 1978. For years I had strange looking
wrists, but everyone assumed it was due to playing the piano so much beginning
at age three. They assumed my wrists grew abnormally from reaching up to the
keys. (Actually I sat on two or three large catalogues, so I wasn't reaching all
that much.) I never remember being bothered by the strange appearance....In fact
I was always rather pleased to be different. In 1977, I swatted really hard at a
wasp and missed. A shock of pain hit me, and my right hand dropped off the right
side of my arm. My hand went numb and my fingers were useless. My second son was
born a few days later. It was difficult taking care of a new baby with just my
left hand and the help of my five year old son when my husband was at work. I
had to really fight depression when I looked at my piano. My GP made an
appointment at - - -. It was in six months. During this time, I began placing my
right hand on the piano keys and practicing with my left. After a week or so, my
right thumb began to respond. By the time the six months were up, all my fingers
were quite reliable except my fifth finger. It would respond erratically. It
took a few more months to respond more dependably. After many x-rays and taking
my medical history, the doctors at - said I had Madelung Syndrome and had torn
away all the tendons and ligaments connecting my hand on the right side. The
problem began from an injury when I was three. They explained how the growth
plate was affected. They couldn't really understand how I was able to move my
fingers. (Somehow the nerves repaired themselves.) I believe it is my own
special miracle. They said they could operate but I could lose some use of my
fingers. I don't mind the appearance as long as I have full use of my hands.
This past year (2001-2002) my left hand slowly and painfully has dropped to
almost the same position. I never lost use of my fingers and didn't miss a day
of teaching three middle school choirs and three keyboard classes. Staying busy
keeps my mind off any pain. To alleviate pain, I alternate with hot water and
cold compresses, exercise by lying on my back with arms and legs straight up and
rotating my ankles and wrists, and I work with a Coreco massager. I have used
the wrist braces, but it's more comfortable without them at this point. I will
use them if I have any lifting to do. Just recently my left thumb seems to be
separating from my hand and is causing enough pain to wake me at night. Both of
my mom's thumbs are separated, and they cause her hands to tremble when she
grasps something using her thumbs. Her family seems to have signs of Madelung,
but none are as obvious as mine. I don't wear a watch like many others with
Madelung, but my reason is different. Another problem from my maternal relatives
is some of us stop or slow watches, so the time is never accurate. I also
sprained my right ankle in June, and it worries me that it's taking this long to
recover. I use the same methods of alleviating pain as mentioned above, and
sometimes take PMS tablets. The tablets have a bit of a calming effect and help
me with the stress I feel at times. I lead a very active life and plan to do the
best I can to keep going. I am fifty-eight years old and have never minded the
strange appearance of my wrists. Sometimes it's a great conversation starter,
and at other times it's been a great way to encourage chidren with handicaps to
keep working. Your web site is a blessing! Thank You, J
From C5 in the USA in e-m contact [ CL ] DCS + MWD
Nigel, thank you for
your highly informative website! I am a 24 female (USA) with danish and Swedish
ancestry. I was diagnosed with MWD when I was 8 or 9 when i complained about my
elbow hurting and went in for blood tests and x rays. The DR. said there was a
very experimental operation where they could lengthen the ulna, but the carpals
were all misshapen and would require a complete wrist replacement. I saw him
again later and his suggestion was to wait as long as possible ( advising me the
bones would eventually fuse together) until I was begging him from the pain,
then we could do a wrist replacement, but they only last about 20 yrs, so I
should try to do without as long as possible. I do very well, my wrist does not
usually hurt except with overuse, and the other does not seem affected at all. I
never thought anyone in my family had it (my dad has 7 siblings and I have 5),
but recently my husband brought it to my attention that my dad and brother#5
have thick wrists and "popeye" arms. Also My dad's sister (married also to a man
of swedish descent) and her daughters have short, popeye arms and all of us have
short, bowed legs. This seems to be the extent in our immediate family, but
since we are expecting our first child, am interested to see if I pass this
on... As for pain relief, it seems to help to have a tight bandage or some
pressure around my wrist? Thanks for all of your hard work!
C
From L in the UK in e-m contact MWD
hi my name is L i am a 29 year old
female who has suffered madalung deformity since the age of two but it was only
recognised when i took a bad fall at the age of ten it is in both forearms I
have had over 16 operations and at times have got so down even contemplated
ending the pain forever But i haven't obviously . now i am divorced and live
with my two children who help me allot with things i find difficult either due
to lack of grip or pain but now i am facing the worst nightmare my daughter of
eight is showing signs of the deformity and i am terrified i know denial isn't
good thing but i think not taking her to the doctor or my surgeon it may go
away. I hate this deformity with such vengeance and it has stopped me doing so
much in the past i totally resent the fact i may of passed it on to someone so
special to me please do contact me
From M3 in Canada in e-m contact [ CL ] MWD
Hello Nigel and everyone! I'm from
Canada and I live in * (I speak French so please excuse me if my English is not
perfect). I am a 26 year old female (11-09-02) with madelung`s deformity in my 2
wrists. I always knew I had strange forearms but was not getting any pain until
the last 4 years. The pain seems to have begun with my present job, and guess
what? I'm a massage therapist....working full time for 5 years now. I tried many
things to diminish the pain, with no success. The pain was getting worse and
worse, so I went to see a hand specialist. He confirmed the MDW and wanted me to
have a CAT scan. It took 6 months before I had the scan and I saw him 2 days
ago. Since this time, I had no choice but to stop working because I no longer
have strength in my hand (specially the left one and I'm right handed). He saw
on the scans that I have chronic torn ligaments, cysts and arthritis. He said to
me that there is nothing to do to fix it (except surgery if the pain persists)
and said to me that I can't do any manual labour. I have a business that I
worked very hard to make it profitable and now my dream and passion seems to be
ending very cruelly. I even find it hard to accept the other aspects of how the
disease affected my life (cooking is hard, very limited in sports, can not lift
any heavy weights, etc). It's hard when you are independent and you want remain
that way. I have to plan my daily routine in other ways to help me from the
pain, and to stop this degenerating pattern to continue. I don't know if I have
the dyschondrosteosis problem too, I want to see a bone specialist for that. I
know my legs are very short and so am 5 foot tall, I have one leg much longer
then the other one (1,5 cm). I wear foot braces. I also have dorsal problem
(slight scoliosis). No other people in my family have MDW but my father has
unusual hands: he has missing muscles in the palm of his hands and he doesn't
have joint on his thumbs. He also has extra-bones in his feet. Finding your site
was a great relief. It was the most helpful thing that has happened to me since
I knew I have MWD. I recognise my self in so many ways with other people and it
help's me to understand this very complicated and rare disease. I'd like to be
in touch with any body with this condition, I have an urgent need to exchange
information (especially with in people in Canada, * would be a miracle). Many
thanks Nigel, your work is very precious.
M
From M4 in Canada in e-m contact [ CL ] MWD
I am 45 (2002,female) and just diagnosed with bilateral madelungs syndrome.
When I was young I was always dropping heavy things (eg. countless glasses of milk), thrown out of piano lessons because I couldn't
"keep my hands in the proper position" and had countless complaints from teachers and employers that my hand writing is messy.
In the last two years the pain in my wrists increased so that I had to cut back work from 5 days down to 4 days etc... til I eventually had
to stop work completely.
Since March it has progressed.. I can't drive, hold a pen, type (i have help today) or dress myself etc.
I am scheduled for surgery in Feb.They will remove one bone at the base of my thumb, shorten the outer one and fuse the wrist together. I have been told this is for pain relief and they don't know what use of my hands I will be left with. But at this point anything to stop the pain is good for me.. I live on Tylenol 3.
I went 14 months misdiagnosed with arthritis.. I took lots medications, cortizone shots, celebrex, methotrexate (SP?). Nothing helped. Then a rhumatologist who had just finished his exams diagnosed me.. (he had studied it for his exams)... Then things started to move. I have
a great wrist surgeon who will do one wrist at a time...
The only other thing I know of that isnt normal in my bones, is that my lower back has two discs fused together theoretically why I am 5 ft 2 and the rest of my family taller...
I have three children. My oldest son is 16 and 6ft tall. He has broken his right wrist twice already and had horrendous writing. So I will now be
able to watch him and see if he has the same thing as me...
Wish me luck with the surgeries... M