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madelungs deformity

las03
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trying to find a doctor that knows about this condition. I just keep getting steriod shots into the wrist for pain. What else is there for help?

Lori

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Surgery Motrin Pain Falls Physical therapy

18 replies

greentree

to las03, I am glad to know someone else that has this condition. No one could ever understand this pain if you don't have it. It took me five years to get a diagnoses. I saw a hand surgeon, he sent me to have this test where they inject dye in to your arms and take xrays. I also had a bone scan, and then I was diagnosed with madelung's bone deformity. I was told I was born with this. I'm sorry to say they may tell you what you have but they won't fix it. I have done extensive reserch on the net(type in Madelung's wrist deformity) and there are alot of sites. This is a very rare disease,around 2500 people to date,mostly women. They have done surgerys on people but it seems like no one gets much relief. I can not find one DR. who knows enough about this to even consider a surgery for me. I would like to be in contact with you.

greentree

Lori, I'm sending this message through this site to check ans see if you got my e-mail this morning.(saturday) I sent one & it came back unknown adress. I had to shorten my second attempt but I had more to tell you. Sheila Westenbarger

Raine

I have seen some doctors who have told me that I would be a candidate for surgery if my bones were more severely malformed. They said it was complicated and very extensive, but possible. I'm just not a candidate because I still have functionality. I don't know if you're in a position to consider such a course, but it looks like there are some doctors in the Washington, DC area who actually have some kind of plan for a madelung's patient.

YoungGirl01

im only 13 and i know of no one with madelungs wrist deformity. i was diagnosed with it when i was in year 3 or 4. i attend the hospital every 2 years for a check up. but to be honest i have no idea what the deformity actually is. i was only young when they doctor talked 2 me about it. so i was wondering if some one would explain it to me as my mum knows not alot about it ether.
would be much appreciated if some one could? thanks.

mamabecky75

From what I understand it is a difformity of the bones in of your arm. The way they are shaped. Specifically the radius, It curves. The severity in each person varies as well as peoples symptoms. I was told that I had a large range of motion for someone with my severity. Over time use of your wrist causes pain. When you may start to experence this pain also varies. Mine started when I was 23 shortly after my first child. I had a job that required alot of typing. I am now 32 and the pain is not so severe that I need pain meds only when I over use them. It may last a couple of days to a week. Then I read one girls blog who had here wrist fussed together by the time she was in her thirty's because the pain was so severe. It is something you are born with that will get worse over time. You do have the advantage of finding out early so you can take steps to prolong the good use of your wrist. Some things might be use a jar opener try not to twist your wrist to much, like when using a screw driver, use a drill instead. When you learn how to drive careful when turning the wheel all the way around don't twist your wrist.( that all so causes me pain), no heavy lifting. You figure out other things that cause you pain as you go along. Just try to find other ways of doing them. wrist braces may all so help constrict the over bending of your wrist. her is a like to a page I found a little help full. It list surgerys they have when it's found early in people like you. http://www.emedicine.com/orthoped/topic513.htm#target12
I hope this was a helpful.

mamabecky75

I also forgot to say that it limits your range of motion. You may find that you can't bend your wrist as well as most do.

sassy

My daughter has Madelungs and we've found several things that seem to help. She finds that massaging the area around the wrist helps. The pain, as her dr. explained is caused by the fact that the wrist is positioned wrong and it puts a strain on the tendons, etc. in that area. She also does a series of excersizes to enlongate those tendons to avoid the potential damage from movement. Keeping them limber seems to help her, though in reading some of the posts here, it appears others may find relief from keeping the wrist more stable. She does wear a splint for sleeping because she has a tendency to clench her fist in night and that contracts those muscles and such in the area. The splint seems to keep it more open. She has used the splint for heavy activities as well though just for the extra support as that wrist seems a bit weaker than the other sometimes. (Another reason for the excersizes)

We were blessed enough to have a wonderful doctor who spotted it immediately on the x-ray that was actually taken because she broke the arm playing baseball with cousins. He has since monitored the bone shifting and for several years. (She broke it when she was 8 and she's now 14) Two summers ago, he informed us that the curvature was too severe to leave alone and he did surgery to reposition the wrist and straighten out the bone somewhat because the growth plate was stunted due to it's position against the other bone. Because of this, her forearm is a bit shorter than the other one. That wrist is a bit wider than the other as well, though most people wouldn't notice.

The next summer, they operated again to remove the hardware they had left in to reinforce the bone. They used the same incision for that so she has only the one scar but it is a relatively long one, but it's on the inside of her arm so it's not super visible.

She has played little league baseball (with the boys because girls softball "is for the weaklings" she says) every year, and soccer on the school team. She plays basketball and the trumpet. However, coloring a chart for her art class had her back on pain meds for two days. It's so hard to explain to a teacher - they just don't seem to understand that it's the back and forth of continuous coloring or writing that hurts her still.

This year, we are currently still monitoring as the bone seems to be curving near the elbow more each year and may require another surgery to correct that. It does seem to sorta put the arm at a weird angle when she's standing up straight, and is beginning to cause her pain as well.

Our doctor seems to think that once she's totally done growing, this will all ease up. However, after reading some of the posts here, I'm a bit concerned that it may not. I guess that's one of those things only time will tell.

Ice, Motrin, massage, and stretching excersizes seem to be key to helping her at this point. We go back to the doctor Monday morning and he may offer other suggestions. If so, I'll gladly share.

Good luck to you. I'm so glad I found this place. When we started our journey with this, there was little to no information available online so it's nice to find a place where others have at least heard of this desease. I do understand your frustration.

sassy

I'd love to have my daughter email with you about this. I think it may be good for you both to find that there are others your age that are going through this. If you're receptive to that idea, please let me know. Thanks!

YoungGirl01

wow.
im from the u.k
so i dont play the sports you might play.
your daughters pain seems to be desribed as more survere than mine.
its hurts to do any type of gymnastics, which i did used to hope 2 be good at.
writting some times can be painfull.
but leaning on my wrist never seems to hurt like any of them.
what i can remember from the last time i went to the hospital
was that the Dr. told me that there was a possiblitly my 1 wrist would grow longer than the other meaning they would have to operate. which makes me worried. ive never broken a bone or had to have an operation so it scares me just a little bit.

sassy

She has trouble writing too. And she used to enjoy coloring pictures and such and that seems to cause her some pain if she does it for very long periods of time.

As for the surgery, she had it and did quite well afterward. She has a scar that runs along the inside of her arm where it's not very noticable.

Her doctor saw her every year though instead of every two years. And as it got a bit worse, he changed it to every six months so he could monitor it more closely. Her doctor warned us about the difference in the arm length as well and that was part of the monitoring system that he used. He didn't want to let it get much shorter than the other one.

The reason it stunts the growth like that is because the growth plates of the bone are at the ends of the bone. With the bone curving into the other bone, it can push the growth plate against the other bone and not allow it the room it needs to grow. This is also what causes the pain - the wrist ends up repositioned a bit when the arm bones are curving like that and that puts pressure on tendons and all when you use it. That's why things like writing hurt - it's the constant back and forth of the wrist that stretches those tendons.

YoungGirl01

thank you for this infomation.
the past couple of weeks i have been suffering with a very painful wrist.
if anything even touched it. it would kill!
sorry i have taken so long to give a response.

dragonfoot

Hi My daughter who is 11 has madelungs in both wrists. She has pain and also some numbness, she has quite limited movement... unable to flex the wrist or turn it over at all.
The doctors say there is nothing they can do until it gets a lot worse!!
When she has a lot of pain she wears splints supplied by the hospital and rests them.
This helps a bit.

sassy

Hugs to you and your daughter. Heaven knows I am fully aware of the fear a mother faces when the doctors throw this strange name of some rare desease at you and you don't know where to turn.

I don't know the particulars of your daughters case, but I do know that there are several causes for Madelungs in our girls. Is she average height? There are several genetic reasons this plays into it occassionally. I also wonder if she's having problems with any other area of her body at this point.

Considering that you have found this in both wrists, I am wondering if you are finding any shortening of the forearm at this point?

I'm not familiar at all with the medical practices there but apparently they are treating this differently there when I read the posts by Young girl and now yourself. Our doctor monitored my daughter for several years before doing the surgery, but once the pain set in, he was ready to fix it immediately. Hers was only in one wrist and did result in some shortening of that forearm compared to the other arm. We have found that massage seems to help the pain quite a bit and an anti-inflamatory such as Motrin will ease some of the pain, too. I don't know if you are aware of why there's pain but it's because the tendons are stretching as the one bone grows and the other is curving and not keeping up with the growth of the other bone. (At least that seems to be what's happening most commonly.) I am, however, surprised that the doctor doesn't want to do anything yet considering there is a loss of function. The good news though is that we found the function to fully return after some light post-surgical physical therapy. She still has the occassional pain, and things like writing or coloring for extended periods still hurt her, but all in all, she's doing well.

However, our doctor did want to wait as long as possible before fixing it to hopefully get her to the point of that growth spurt that teenage girls tend to hit around 13 or so. Perhaps that's what your doctor is waiting for. We were truly blessed to find the doctor we have, and in my research, I have now located another one in North Carolina that I believe I would like my daughter to see just because she has now been diagnosed with Olliers Desease as well and the doctor there seems very well versed on both of these rare things.

I'd love to talk with you, or any one else affected by this, at length about and the options I've found, and perhaps any information that you could share with me that may help if you want to email me anytime at sassy_wvgirl@yahoo.com

Best of wishes to you and your precious girl.

dragonfoot

Thanks for your lovely e mail.

In reply to your question, my daughter is of average height, she has no shortening of the forearms.
We are in the uk, our consultant here has found a good doctor in Australia who he has consulted with and his answer is the same... leave it for a while, wait and see.

I'm glad your daughter has regained the function in her wrist, do you know the name of the procedure she had and what age did she have it done?

Best wishes

teadrinker

Lori, my daughter has Madelung's. We found a specialist - Dr. Terry Light at Loyola in Maywood, IL has a special interest and practice that covers this. We first hooked up with him through Shriner's over 10 years ago and he's been able to keep my daughter pain free.
You can reach him at Loyola University Medical Center, 2160 So. First Ave., Maywood, IL 60153 and at 708-216-3834. His fax (for records?) is 708-216-6223.

mollybeth

I read all your comments about madelungs .. I have it myself i found this site and i'm hoping for some advice and to hear what other people might be experiancing on a daily basis. I get throbing pain all up my arms whenever i do to much. I drop things if they are to heavy and sometimes i feel like i just don't function at all. I have written some in my profile as well.. Its hard to remember what i used to do without pain and not get a little sad about it all.

teadrinker

Hi, Lori and Sassy and Younggirl01,
my daughter - 24, now - has been treated for Madelung's for a long time. Both arms. Yes, both are shortened (to check, look where hand falls, most people's hand falls onto thigh, my daughter's ends at waist). For daily care, we were given a load max of 5 pounds, soak in Epsom salt warm water, and to avoid most of the things like for carpal tunnel.

This is only one of many medical problems we have to deal with, so I think it's easier for us to create an environment that will foster her development as a person. (She's also mentally impaired.)

Another thing that always amazed and confused me -- our upper arm bone, at the elbow, has 2 "cups" that the lower arm bones nestle into. My daughter's lower arm bones are about an inch short and her bones don't meet. We ace bandage the elbow (and wrist sometimes) when she indicates they "feel funny". any ideas?

We're praying for you all. teadrinker

las03

Hello, have not been on this site for awhile. To teadrinker, I will check out that dr you wrote about in Illinois. Thank you. I have seen one surgeon since my last post. He said the only thing left to do is to fuse my wrist together, but that seems to extreme for me at this time. I am gonna continue with my injections every few months for pain for now. I have noticed over the last year I have been getting alot of pain in my elbows now as well and my strength is getting weaker. My muscles in my upper arms are not as strong and tight. (I'm sure some is aging ha ha). But I have been trying to do exercises to keep up, but then I just get more pain in my wrists and elbows. Some days I just feel stuck. Anyone have advice out there for that? Take care all and keep in touch. How is everyone else doing?
Lori

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