Dyschondrosteosis and Madelung Wrist Deformity ( 2006 )
Personal stories concerning MWD / DCS submitted to this
site in year 2006
Start of year 2006
From S10 in the USA in e-mail contact with [ CL ] MWD
My name is S , I live in _, New York, USA. I'll be 29
years old in _ of 2006, and I was diagnosed with Madelung's deformity when I
was 15 years old. In High School I started playing volleyball and tennis,
and found that after months of taking Tyelonel for the pain in my wrists, it
seemed to be getting worse. I went to a local health center, and it was
diagnosed as tendinitis...I plainly told the Physicians Assistant that the
diagnosis must be wrong, and asked for a second opinion, yes I said this at
15 years old. Good thing I was soo persistant (stubborn?)...the
specialist's report came back with Madelung's deformity.
What's different from the other stories I've been reading on this site...my
right wrist was and still is worse than my left. I had corrective surgery
performed on my right wrist when I was 16 years old. They said I had a
50/50 chance of the surgery making my wrist better or worse as far as
mobility and pain goes. I did it anyway, and I really don't think it's
better or worse as far as pain goes...just a different type of pain.
Mobility and rotation did improve, though. Dr. _ cut off the end of my
Ulna, which unlike what I've seen on the site, far outgrew my Radius, and
both bones were twisted causing a severe V trench, in which my metacarpals
were getting "crunched" in. An arthography test performed before the
surgery showed a little breakage of cartilage, but after cutting me open,
they found that all the cartillage was so broken up that they just removed
it all.
My right wrist hurts often, at lease 3-5 days of the week. I have a wrist
brace...but I find it hurts more after taking it off, as I read someone else
say on the site, I also think braces just make the muscles weak and the
tendons and ligaments too tight. So I don't use it unless I really hurt my
wrist; which typically happens 2-3 times a year. My left wrist usually
doesn't hurt much unless rain is coming or I hit it wrong. However the pain
of my left wrist, when it does hurt, is far worse than the right one. I
stopped taking any pain killers/medication, I only take an ibriprofin on
those occasions (2-3 times a year) when it is severely wrenched for some
reason or another. I used to take all kinds of pain killers, but now, I
rather just live with the the pain, and I have gotten used to it. I rather
deal with it than digest unknown amounts of synthetic chemicals for years.
Unlike some of the pictures and descriptions I've read....I do not have the
bayonet type of MWD, I do however have a rather fat forearm. I do not have
the protruding Ulna (even in my left wrist), but I do have a very wide
wrist. I am also very short (5 foot, 1 inch), I have very short limbs, and
(I find this funny)...a wide nose. :-) And I do have very, very good
hearing, as the doctor said the last time I had a hearing test (I read about
that in the beginning of the site.) Other similarities include
"pidgeon-toed" feet. My mother told me that I had to wear braces as a baby,
but alas, I am still pidgeoned toed. And I have had knee and back
problems...but no one can ever figure out why they hurt. I have always felt
that my bones are thick and akward, as I am very stocky, and my joints hurt
often.
This is the first time that I have ever sought information about my
deformity...never even thought about looking into it, until last week. My
mother was having wrist pain, and just received word from a doctor, that the
x-ray showed...an unusually short Ulna. He did not diagnose it as any kind
of disease/deformity as of yet. But we found it VERY interesting, obviously
because of my deformity. So, now I am worried for my two children, girl 4
years old, and boy 10 months old. I will be calling the doctor to see if I
can at least have my 10 month old looked at and perhaps my 4 year old
x-rayed as "preventative maintenance" sort-o-speak. The last thing I want
is for my children to deal with this unnecessary pain, as I have.
I would like to be in this group. And thank you for
your very informative site!!!!
From C4 in the UK in e-mail contact with [ CL ] MWD and DCS
Hi, I (mother,in Kent England) have just come across your very interesting web site, my daughter
who is now 15 was diagnosed some 3 years ago with madelungs deformity in
the wrist, some years before she was a gymnast and we just put the constant
pain down to over use of the wrist or an injury that didn't heal properly,
but after several visits to our gp he refused to send her for an xray so
to cut a long story short we changed gp and was immediately sent for
xrays and at last the diagnosis was made of Madelungs deformity. Not
having ever heard of if before we looked it up on the internet and tried
to learn more about this deformity, whilst on there I learnt that it
was also related to Leri Weills and my daughter has always been small
for her age so this triggered off more questions with doctors. We were
then seeing two doctors one for the wrist and one for the height, she
had her whole body xrayed and measured with all joints measuring
different, my daughter was given a growth hormone for 18 months and
it did actually give her growth a boost, now at 15 she is 4ft 8'' and
they are saying that she has now reached her full height potential.
She has had an operation on her wrist last year and has a metal plate
inside she has had no problems whatsoever with it, she has no more
pain at all, just a few scars that are fading nicely and give her
a topic of conversation when meeting new people! My concern for my
daughter now is that she is having severe problems with her knees,
the doctor says she has hyperextended knees and she has been referred
for physio. Over the last 6 months her knee has popped out of joint
(as she says) about 5 times and she is in absolute agony with this
when it happens , seeing it for myself the first time only a week ago,
I felt so helpless and didn't know how to help her, but I'm sure the
physio will be able to give us some help in this area when we get our
appointment. I was just wondering if anyone reading your site also has
this problem and if they could enlighten me with some tips to help her.
From I in Israel in e-mail contact with [ CL ] MWD and DCS
Thank you very much for the info you posted in the internet - it really
helps,
My name is I. (27, female), I am a pregnant now and would like to ask you
some questions.
Mother of my husband has Modelung deformity and leri Weill syndrome (her
mother - the grandmamma of my husband, has also), my husband (32 years old)
doesn't have such deformity or syndrome, I wanted to ask - what is the
probability of this syndrome affecting my child (it's a boy)?
My husband is going to make the DNA (SHOX) test, but it takes some time, and
I am really worry about my child. Is it right that girls are more tend to be
affected by this syndrome?
Is it possible to see such deformity by Ultra Sound at the advanced stage of
the pregnancy? What is the age that this syndrome usually visually appears?
From J9 in the USA in e-mail contact with [ CL ] MWD
My name is J _, and I live in NY in USA.
I am 54 and female.
I actually did have a name for my wrist problem before
I found your site, I had just never heard of Madelung.
I have suffered from severe Adult Idiopathic Scoliosis since
I turned forty. I have had multiple surgeries, fusions with
hardware and reconstructions and revisions on those. I am no
stranger to pain and surgery. The past two surgeries in Feb
2004 and Feb 2005, I went to one of the best revision specialists
in NYC and am happy with the results. As pain decreased,
I lowered pain med until I was almost off it and then I noticed
the amount of pain that I was having in my left wrist.
An Orthopedic Doctor took an xray and sent me to a hand
Specialist who ordered a wrist arthogram and made the diagnosis
of Madelung with an impacted ulnar. I was shocked to hear it
was another genetic bone deformity as my scoliosis had been.
My knees are lacking cartilage from the shifting of my spine
and hips and I have had several knee arthroscopy's.
I know my wrist is getting worse and I feel it more without
pain med. I took my xray results to a Hand Specialist in
_ _ _ in NYC where I had my spinal
revision surgeries. This doctor also confirmed the diagnosis.
Both recommended surgery (called Darrah Procedure?)
I was shocked at the details of the procedure, taking a
piece of the bone out and putting it back together.
It could require a plate or screws. I already have screw,
rods, a cage at S-1, mesh between the two removed ribs, bone
dowels and heaven knows what else. I don't know anyone
with this condition. Everyon questions me if it is carpal
tunnel or just arthritus, yes I probably have that too,
but that is not this issue. I don't know what to do.
How bad will this get?
I want to participate, not take so many steps backward
with these rare genetic things that I come up with?
I need to find someone who
actually had surgery and what happens.
From T2 in Australia in e-mail contact with [ CL ] MWD
I came across your site only now after being diagnosed with MWD 17 years ago,
at age 13. My story sounds alot like yours.
My wrists could get quite painful, especially if I bumped them.
The bone at the end of my Ulna was quite prominent.
I have had sugery on both my wrists.
My left one was fine, but I had my right wrist done a second time after bone
fused and I had no movement in my wrist whatsoever.
I had been going along just fine, until now, after having my first child.
I am having problems with my left wrist, but am not quite sure if this new problem
has anything to do with any of the surgery I had done all those years ago.
I am waiting to see an Orthaepedic Specialist.
Will give you an update when I find out.
My sister had surgery on both her wrists as well, although I don't think hers were as bad.
I think she had ganglions??
I would like to join your group.
It would be good if others could benefit from what I can tell them, and share
my experiences.
followup
First Operation Report
Date: _ Feb 1991
Surgeon: Dr _
Hospital: _ _ , Australia
History: Patient presents with bilateral Madelung's deformity with a blocked supination and pain in the wrist
combined with deformity.
Operation: Osteotomy bone graft and T plate fixation left radius. Osteotomy
and six hole plate left ulna.
Incision: Longitudinal incision over the dorsal ulnar aspect of the left
ulna. Distal half of forearm. Second longitudinal incision on the
radio-palmar aspect of the distal third of the radius.
Prcedure: Through the dorsal incision the incision was carried down
between EDM and ECU. An osteotomy of the shaft of the ulna was performed
three inches from the ulna head. A one centimetre block of ulna was
removed.
Through the radial incision an osteotomy was performed about one inch
proximal to the radio-carpal joint. The dorsal cortex was kept in
continuity. An extension ostetomy was performed. Part of the excised
ulna block was fashioned into a wedge shape to provide a dorsi-flexion
osteotomy of about six millimetres on the palmar aspect wedged to fit into
the opening osteotomy. The osteotomy site was held with a T shaped plate
with two holes proximal to the osteotomy site and three holes in the
trnsverse part of the plate distally.
Attention was then returned to the ulna. The distal part of the ulna
was shaped so as to create a palmar osteotomy effect. A six hole DCP
compression plate wasfixed with the plate offset centrally to achieve
compression on the far aspect of the osteotomy site.
At the end of the operation passive supination was to 60degrees and
pronation full. There was 70degrees of flexion and 70degrees of extension.
Tourniquet was let down, haemostasis obtained. Copious washout, closure
to fat and subcuticular to skin. Wounds were dressed and a forearm
plaster splint applied.
Second Operation
Date: _ March 1992
Surgeon: Dr _
Hospital: _ _, Australia
Indications: Madelung's deformity right wrist.
Operation: Right radial opening wedge osteotomy and shortening osteotomy of right ulna.
Procedure: Right upper limb exsanguinated tourniquet applied under general anaesthetic.
The ulna was approached along its subcataneous border and 6mm trapezoid removed such that slight flexion would be imparted to the ulna. The radius was then approached from the volar aspect through the bed of the FCR tendon. The pronator quadratus was lifted from the radial aspect of the radius to expose the proximal radius. A three hole T plate was the fixed to the bone in slight ulna angulation so that the deformity would be reduced on evetual fixation. Osteotomy was the performed at the radius leaving a dorsal-radial hinge and the bone jacked out 4mm at the ulna volar side using the graft from the ulna. Fixation was then completed using a six hole small fragment DCP on the ulna. Wounds closed in layers after haemostasis obtained with 2.0 Proline to the skin, standard dressing.
Third Operation
Date: _ 1994
Surgeon: Dr _
Hospital: _ _ , Australia
Description of Op: Interposition arthroplasty of right distal ulna.
Procedure: Under GA tourniquet control the previous incision was opened.
DCP plate, screws and a Kirschner wire were removed. Approximately 1cm
of the ulna was resected where the sudoarthrosis had reformed. The
flexor surface of the ulna was stripped of periosteum and this flap
folded over the proximal ulna through drill holes covering the bone end.
Extensor carpi ulnaris was clipped longitudinally, rolled to an anchovy
and secured to the distal portion of the ulan with drill holes with 4.0
Ticron and 3.0 Vicryl.
Assessment: Rotation then showed 70degrees of passive supination, full
pronation. The dorsal branch of the ulna nerve was identified and traced
distally. Haemostasis was achieved, the wounds were washed out with
saline and closure performed over a Redivac drain with 3.0 Vicryl.
(Anchovy ? , yes you did read correct - "anchovy procedure" rolling up
of tendons as a spacer )
From I in Poland in e-mail contact with MWD
Hi My name is I_. I'm 20 years old and i have Madelung's deformity and low of limestone
(calcium) beguile in blood very. I was a patient in children's health centre in Warsaw
but there is the hospital only for children and i'm not child. Does not have physicians
occupy (deal with) in poland which (who) treatment of this disease. I must walk from
this on research cause too on one's own but problem sticks (lie) in (to) it that I do not
know about this disease a lot too and that beguile not know make.
Could I ask suggestion what (which) in this direction? Execute? I had no operation but
strong sickness changes in wrists mum < beguile > < have > and hips.Please, < ask >
about assistance very.
From B in Brazil in e-mail contact with MWD and DCS
I am anesthesiologist and pain specialist in the thrid world (Brasil). My daughter have trouble of
grow, still in the intra-uterine life, your Ultrasound present "shortning of long bones"
(umero femur ulna radio tibia peroneo) She born preterm 34 week, little for
gestational age, her forearm is very short. Your cariotic is 46,X,add(x) (p22.3) -
SHOX gen. The geneticist diagnose Leri Weill Syndrome and as a part of this
Madelung deformity (ulnar desviation.....). Make your first bone X ray at the 3 month,
she is 1year and 4 months. I search in internet and found your web site. I would be
interested in any informatiion that you may have, specialy contact with another families
in South America. Thanks a lot for your valuable site.
From L in Denmark in e-mail contact with [ CL ] MWD and DCS
Hi
Thank you for creating a page, so that I have the opportunity to find
out of more about my condition. I am 30 years old and was diagnosed
with Madelungs when I was 11. I live in Denmark and so far any
questions to any of my doctors have resulted in nothing. I have search
the web and I suspect that I also suffers from Leri-Weil, due to low
height and having other of the symptoms. Is there any company which
does genetic analyses for private? You will only get a genetic
analyse testing for serious diseases such as cystic fibrosis in
Denmark.
Is there anything I can do to help any of my future children in terms
of low height? Any Growth hormones?
My father does also suffer from MWD
and possible DCS, so did his father and two half-siblings. My brother
does not have any of the two conditions. The reason I personally
started looking, is because I am pregnant and wanted to find out how
big the risk were for my children to get the same problems as I. I
have some pain in the wrists but nothing major.
followup 2007
However since I contacted you a lot has happened. I have been diagnosed
with Leri Weil. As I wrote to you my physician did not want to do any test
on me, but then I moved and I asked my midwife about the risks and she
sends me to a genetic physician that could tell me a lot of this disease.
It is as you write inherited from the X-chromosome and she could from my
wrist see that without question that it was Leri Weil. She did some blood
tests and I do not have the most typically form, where you are missing the
SHOX-gene but a miss-sense form, which means that I have the shox protein
but in a less functional form. She also did some measurements of my arm
length, arm span, standing height, and sitting height. And told me that it
is probably not as seldom as first believed, the cases the scientist sees
are the one, where there are pain and other problems, and people without
complications will not seek professional help and discover that the short
stature is a gene defect. She might be right, as I this fall did teach a
girl with Leri weil and she have told me that both her sisters haves it,
so more than 5 people have it in Denmark;0).
My dad is very rare as it is not normal to inherit it from you father when
you're a man.
5 months ago I gave birth to a baby girl and a blood test have been send to
the same laboratory in Holland to make sure that she does not have Leri weil. It is however not very likely as she now at age 5 month is bigger than I was at age 12 months.
There is a 50% risk that my children will inherit this from me.
I have also found an article about a growth-hormone trial in Australia;
if you are interested I will try and rediscover it again.
From S11 in the USA in e-mail contact with [ CL ] MWD
I'm a 40 year old male citizen of USA. Begining in about high school,
I distinctly remember becoming aware that I had lumpy wrist (aka "
prominent distal ulna") because I had actually been teased about that
specific feature by more than one fellow classmate. Since then, I have
tended to be very unconfortable with the appearance of my distal forearms
due to the presence of the lumps on my wrists, and as such, tended to
favor long sleeve shirts, even in the summer time.
So now, for as long as I can remember, I have been hoping for, and
occasionally seeking, a treatment to correct this anomally I live with.
However, up until this point, I have been unable to find any doctors
interested in performing corrective surgery, as the few that I have
visited have basically advised me to simply live with the condition,
and have had no interest (or experience) in addressing a possible
"madelung deformity" such as mine.
The reason I say "possible Madelung deformity" is because I'm not
100% certain that the anomally I have fits the full definition to be
classified as a true "Madelung Deformity". I say this because to be
fully honest with you, I suffer from no other symptoms besides the
cosmetically unacceptable protruding/prominent ulna ends, which have
not yet caused me any undue pain or functional issues. I simply am
completely bothered by the "ball-type" features (protruding ulna) of
my forearms, much in the manner that a person with any number of more
common cosmetic anomolies might be. Unfortunatly for me, there seems to
be no market for people in my situation as there are for people who may
be dis-satisfied with the appearance of their noses or breasts.
I was hoping then that you could possibly provide me with your opinion
as to how I might proceed so that I might finally be able to resolve my
situation. Ultimately, I would like to find a doctor who is knowledgable
with issues such as mine, and who might be willing to perform corrective
surgery on my wrists, in order to alleviate my condition.
From J10 in the USA in e-mail contact with [ CL ] MWD
Hi i really don't know where to start except that i really need help....My name is
J_ I'm 22 and i have madelungs in my wrist, i had surgery on both of my
wrist in 95.....My dad past away when i was 16 and i can not find the Dr
who did my surgeries......so i don't know where to start plus i don't have
insurance right now......and the pain is starting up again more so in my
right wrist....I believe they put pins and screws in my wrist but i
honestly don't remember, and i really just don't know what to do about this.
i don't know anyone and most doctors have no clue what your talking about
when your trying to explain it.......will my wrist continue to get worse??
i thought the surgeries were supposed to fix it? thanks so much J_
From J in Holland in e-mail contact with [ CL ] MWD
I am sending you this email to inform you about my personal experiences with
Madelung's Deformity. I have known of your site for quite some time already
but I thought you might like to know my personal story for gathering data
on prevalence etc.
I am a 26 year old female (year of birth: 1980) from the Netherlands and
was diagnosed with Madelung at the age of 13 (1993). Both my wrists are
affected, the left one being a couple of centimers shorter and more
pronounced than the right one. (I have also noticed my left upperarm being
shorter as well as my left leg, but I am not sure whether this has anything
to do with MD).
It was never researched if I had MD as a "symptom" of LW/DCS. At present
I am not aware of any other family members with MD, however my older sister
seems to be effected somewhat as well. Besides experiencing pain when
having done too much with my hands (f.i.: typing, carrying heavy
groceries) or making 'wrong' movements, I do not really suffer from MD a
lot.
All information I have read so far (mainly through internet) really does
not present a clear picture about either MD being a part of DCS/LW and
hence heritary or MD being a seperate diagnosis. Furthermore, if MD is a
seperate diagnosis is it then heritary or not? I reckon there is no
consensus about this? Maybe you can shed light on this some more?
Although your site is very informative with a lot of personal stories,
the 'genetics' part is difficult to understand (especially for not native
english speakers). Maybe you could add a piece explaining heritance of MD
and LW/DCS in layman's language?
Anyway, I think that your initiative to gather data and develop a website
is really informative and also helpful for those with MD and/or LW/DCS
(just to know that even though it is rare, there are still a lot of other
people with the same medical condition).
From A8 in the USA? in e-mail contact with [ CL ] MWD
I have read your page for sometime now. Since I first heard about the
deformity and as my doctor, I too knew nothing about it. I was diagnosed
maybe 2 years ago with Madelung Wrist Deformity. My whole life I have
always had wrist problems. I have been in and out of the hospital numerous
times due to this or so doctors think. It took 4 doctors to finally
diagnose me with what I had. Unfortanly all the information I ever recieved
from the doctor was "We don't know how it's caused, we don't know why it
hurts, and we don't know how to treat it." I was surprised it took 4
different doctors to figured out what I had. The only explanation they
could give me was it is a rare deformity and due to that they never really
had to study it. They spent some time giving me theories on how it could be
genetic or what not but I never bought it. I've had some bone problems in
the past with growth rate and bone length. When I was in 3rd grade one leg
was noticeably longer than the other. The only explanation they could give
me was puberty hit me at an early age. Which lead them to another theory.
I am still unaware of what this deformity really is. The only thins the
doctors ever seen to explaint to me the right way is Eventually i'll lose
mobility and eventually i'll need surgery. They asked if I was interested
in meeting with a dr. at the Unviveristy of health and science here and I
politely decline. I am one of those unfortunate patients who has pain and
limitation on what I could due. I can't even squeeze someone's hand or hold
a pencil without feeling uncomfortable. Could you please explain to me what
this really is and is there anything I can do about it or just take it as
it goes?
From T2 in the UK in e-mail contact with MWD
i am a 32year old female. was diagonosed with MD at 14 years,and had
the corrective surgery. i had never experienced any pain before the
surgery and only had the procedure done for cosmetic reasons. still
have really bad scars on both my wrists. i was told to expect arthritis
as early as 21, but have not had any problems so far. no one in my
family has the deformity although my dad is short statured about 5"3 -
5"4. i am 4"10.i recently found out that i am pregnant .11 weeks today!
also just come back from a chat with the geneticist. was told that
there is a 50/ 50 chance of passing it on. bloods were taken for the DNA
and SHOX genes testing. results will be back in about 10 days.
i am worrried sick of passing this on. how often do you see heriditary
cases ? considering i am the only one with this ,what are the chances
of passing it oN?
From S12 in the USA in e-mail contact with [ CL ] MWD
I had no idea what my problem regarding my wrist was.
I had been told it was broken and never set. Recently, my brother was
told his bones in his lower arm were reversed. When he told me that....
....it fit the look of my lower arm too. My arm has a bowed effect with
my left arm being shorter than my right. My wrist is big and painful most
of the time. Do you think I have Madelungs or is the reversed bone theory
more believable? I can remember as a child, my grandmother having my same
wrist. This must be where we got it. I have 3 brothers and one sister.
Only two of us got this wrist thing. We are both of normal size......
I'm 5' 4" and my brother is about 6' tall. After reading more from your
article....I found that my wrist is exactly as the girl pictured with
the bayonet formed MWD
From S13 in the USA in e-mail contact with [ CL ] MWD
S, from usa, i am 51, female and i was diagnosed with mwd five years ago.
I am so desperate for help I can hardly stand it. I have been to so many
dr's, and even though they diagnosed me they tell me they don't know how
to fix me. They don't believe the pain I'm in I have bilateral mwd, right
hand,wrist, forearm the worst. now my fingers are starting to freeze up.
(left side) I am in pain 24/7 my arms feel like they don't belong on my
body, like they are someone else's. i contacted u.of _. and they don't
believe me. they said it was too rare,and i must have something else.i have
my test results . my left side ,arm, leg, is longer than my right side.
does this get in my feet, legs? I need help, the pain is too much to bear.
no one should have to live like this.
You ask if anyone else in my family may have had this. I truly believe
my mother may have had this. She is deceased now, but I can recall every
little thing about her. We used to compare hands. although mine looked
older than hers, she had the same look about hers. The reason I was asking
about this getting into the feet and legs, is that for a few years my
mother couldn't feel her feet,as I can't barely feel mine now. Her big
toes looked liked they belonged on the other foot. Her hands were very
crooked but, I don't think she had a lot of pain. The Dr. I was seeing,
said I was born with this and as long as I can remember my mother would
have to wrap my hands and arm in ace bandage. The tightness would help
with my pain.The last five years have been a nightmare. My right hand
& forearm look like something from a monster movie. My pain is so bad.
The dr. has put cast on me which I take off, so now they won't see me
anymore.When I spoke with the orthopedics dept. at univerist of _
they don't believe me. For no unknown rason I lost 35 lbs five years ago,
and that is the same time my hands became so bad. I'm 5ft7 and weigh
104lbs. my mother was 4ft11. I have health insurance although it's HMO
so maybe thats why no one will help me.
From G2 in the USA in e-mail contact with [ CL ] MWD
I am now 35 living in the US but am originally from Manchester, UK. I was
undergoing Chemotherapy back in 1986 for Hodgkins Lymphoma when a doctor
finally noticed my "funny wrists"
The doctor diagnosed me with Madalungs deformity and I became a willing
gunea pig for the _. I there learnt all the technical jargon that I find
on your pages whilst I am crying to hear things from all these other people.
I knew it was rare but it is so nice to connect!
I was looking up my condition because in miscarrying I have found out
from an endocrinologist that the Hodgkins ( which my sister also had)
and the Madulungs( which my mother also shows signs of) are linked in a
shox mutation.
What I am trying to research is any other person that has a relevance like
this as I am now going for IVF treatment and there is a posibility I can
be approved for PGD to prevent my offspring from getting either of these
medical issues. I once saw in a doctors office that the arma can be really
really short and I would never want my child to have to go through the
teasing I had when I was younger.
I am five feet tall, have the pictured arms you see at the end of your
site and also have big calves! I would LOVE to hear from anyone who is
a "twin" in this area
G
From J11 in the USA in e-mail contact with MWD
My Name is J_, I'm 19 and I live in Florida. I've had severe problems with
my wrists since birth it was around age 14 when we started to notice that
something just wasn't right. After visiting over 6 doctors I was finally
getting some answers. I was told that what i had was called Madelungs
Deformity ....... The doctor that informed me of this also stated that he
had never before seen let alone heard about this medical deformity. My arms
are noticably 2 different lengths. My left wrist is by far the worst of the
2. I've gotten many x-rays done as well as 3D x-rays. You name it i've done
it. We may have found a doctor who will operate on my arms but he is very
reluctant and tells me that i may not have full mobility in my arms as i do
now. Yes i am able to rotate my arms and and use them in a regular fashion
(well sometimes) but the pain i have is sometimes just unbearable. I really
dont know what to do or think about any of this. Not one person in my family
has this or anything like it.... Its so weird.
From L3 in Canada in e-mail contact with MWD
My name is L and i am writing in regards to your very informative website
about MWD. I am someone who lives with MWD and would like to help anyone i
can with information or advice. I notice on your website that there was a
male, J11 in the USA, from Florida who is 19. I have similar problems and
have already gone through a lot of what he faces ahead of him.
From a medical director of Red Cross in _ _, Mexico
I´m a orthopedics surgeon and I have seen a 13 old female patient with pain and deformity in her right wrist X ray showed a Madelung´s deformity en boths wrist and an angular ulnar and radial deformation. The mother of patient had the same deformity clinical and roengenological and sad that her mother had had the same situation, both without pain.
I like to be in contact whit you because is the first case in Mexico reported in your study.