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Jessica is our 2016 Olympic Hopeful and Sarah is our 2012 Olympian in Weightlifting. We're setting out to be "Pretty Strong" and we encourage you to do the same.

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Saturday, June 30, 2012

My Madelung's deformity

I'd like to talk about the deformity I have in my wrist/forearm. A lot of undo attention has been paid to it and I feel it's pretty dramatized.

In the initial article I had about it. I thought I was just having a conversation with someone. I never thought it was going to be on the internet! Lol



Well, since it's there, I'll tell you about it. It"s called Madelung's Deformity and that means my ulna is shorter than it should be and slightly crooked.

I originally thought I had a sprain and was wondering why the pain wasn't going away so I got an XRAY and went to an orthapedic surgeon and had an mri to discuss the results.

It's a congenital deformity (since birth) and it's bilateral (on both sides)

Since then, we have taken precautions to prevent problems or manage the pain that's there.

I wear sturdy wrist wraps, I get massages and chiropractic care, and focus on flexibility and strength in the area.

Because of the lack of skeletal structure I have to support my wrists, my muscles, tendons, and ligaments have adapted to compensate.

Is there pain? I would say a minority of the time. My left thumb where it connects at the wrist tends to get tendonitis and my right radius at the wrist can hurt. Mostly because it's taking the blow of catching overhead movements. I've compared it sometimes to feeling like my wrist is getting hit by a bat. The amount of time my wrists feel that way though is not every second of every day.

I realize if/when the pain gets like that, it's just a pain I have to go through and that I can't stop competing or training because of it.

After a competition we take one week off of anything overhead, followed by a week of doing slower movements overhead (presses, and muscle snatch), then the next week we start working our way into doing more jarring overhead movements like snatches and jerks. This way I give my wrists a little bit of a break from the beating they get from training. We've found this really helps with how long we are able to put off any pain if/when we have pain.

So far in this training cycle leading up to the Games, I haven't had any problems.

Besides, it could be worse like some other people with more serious cases of Madelung's like this one below




16 comments:

Beth Woolsey: Five Kids Is A Lot Of Kids said...

Love that you have this blog to "set the record straight" and tell your less dramatized, more true version of your story. Still, I find myself thinking about the pain and deformities we all find in life and am inspired by the reminders to note that it doesn't hurt all the time, to give ourselves a break, and to work through it when we get the most jarring impacts.

Sorry to get all "life lessony" out of your post. Strangers doing that has to be kind of annoying. Heh heh. ;) But you ARE an inspiration - the kind we really need - and I can't wait to watch you with my daughters and sons.

Brittany G said...

As I have madelungs in both wrist with bone sticking out I know first had how painful this can be...I had surgeries, pain, numbness and very hard to pick up my children...Never would have though a weight lifter would have it but after reading this it makes me smile knowing nothing is holding you back not even pain...Keep it up!!! You give the rest of us hope :-)

carole palermo said...

I'm 69 years old and have been to several doctors in my youth. this showed up as I was growing at 13 years old during purberty. i stopped growing any taller at 5' 7". all my pants had to be hemmed about 5". my sleeves were all about 4 to 5 inches too long on shirts and blouses. my arms are shorter than my 5 foot friends. i have the purturding bone on my wrist. people ask if i broke my wrist and i would say that i was born with this affliction. my ankles are huge and my foot is size 11. probably should be 6 feet tall my story ; carole regira palermo so far no pain

Elisabeth said...

It's so great to know that someone else has this issue. I don't wish this on anyone but I have felt so alone all these years. Feeling like a freak and everyone always staring at my wrist always being so self conscious. Invested money in bracelets to try and cover my wrist. I am always hiding my wrist epically from people that are new and not use to it. Wearing long sleeved shirts in summer time to just cover it. Not be asked if I broke my wrist. II can go on and on about unwilliness to just accept this fate that was given to me but its so hard. It's so hard because I have pasted it on to my daughter. She only has it in one wrist but I want her to get it corrected so she doesn't have to go through life like I have. I am so sorry that I am dumping this on you but I have never met anyone EVER in my 38 years of life that has madelungs. I know you understand what I am saying, not like everyone that says "don't worry about it" or " who cares". Thanks for reading this.

Anonymous said...

I was diagnosed with madelungs deformity when I was 8 or 9. I had surgery to remove the growth plates in one of my wrists in hopes to lessen the pain. I did competitive gymnastics my whole life with wrist braces, and made adjustments where I needed to. Now that I am getting more involved in weightlifting my wrists are more painful then in gymnastics. I started taping them, as I haven't found a brace that I feel like actually helps. I am curious what kind of supports you use. I have tried eleikos wrist wraps but I feel like that doesn't cut it. The ones I used for gymnastics had a rubber piece in them, that I guess USAW doesn't allow, or I would use those. Any suggestions?

Kaila said...

I have a severe case of Madelungs and have had pain since the age nine. When I heard that you had I nearly fell out of my seat, I couldn't believe that someone who lifts weights had it.

Tests, procedures, surgeries, pain programs...I've done it all. A lot of what you said is how I deal with this problem I have. Taking breaks and pacing myself is key in functioning.

Anyways, thanks for sharing. <3


Maureen said...

Hi! I just stumbled across your blog and I must tell you that it is nice to see that others with this "issue" are handling it much in the same way I do. I was diagnosed 3 years ago, at age 40. I have chronic pain in my right wrist (feels like a pulled muscle). I have recently begun experiencing the same pain in my left wrist and I am sure it is because I over compensate using my left arm more then my right because the right is in far worse condition. Typically I just go about each day, being aware that the pain is there but not letting it stop me completely. I have a custom brace I wear when I need the extra support for my right wrist. Like you, it's all about knowing what your limitations are and using common sense when using your arms - taking a break, switching up the routines, etc... to not cause any additional pain or damage. You are truly an inspiration - being a weightlifter - and still maintaining your wrist issue in a sensible manner. Thank you for sharing your point of view of Madelungs. I did a similar post on my blog a couple of years ago, just to give people a little more insite into the wrist brace I often sport. If you'd like to read it, here is the link. The post is a little long and the part about Madelungs is near the bottom but is referenced at the top as well. http://north-of-nowhere.com/Blog/Entries/2011/9/21_Right_Now....html

Anyway - thank you again for sharing your blog post and experiences.

Shannon Robinson said...

I am amazed that someone with the deformity is able to compete in weight lifting. I am so happy for you. Both of my wrist are deformed, but it is severe in my left wrist, even more than that picture you posted. I was diagnosed at the of 9, I surgery on my left wrist, and I can don't experience a lot of pain.. Thank God I can use my arm but I certainly have my limits even with simple tasks. I still experience moderate to extreme pain in my right wrist.

Elizabeth as I read your post I felt that I could've written it myself. I'll be 26 soon and I'm still wearing long sleeves in the summer. Do you feel that the pain has been getting worse as you age? I've experienced more frequent pain since I turned 20 and it seems to be increasing. I was very surprised to see that your daughter has the condition too I've always believed it was rare to pass it on.

Juliette L. Swett said...

Wow. This is amazing to me. I stumbled across this page because I have severe madelungs in my left wrist. I was diagnosed at age 13, and had the growth plate removed so it didn't get any worse. It's always looked much worse than it feels, but it's constantly there to remind me that we're all unique in our own way... LOL. So, most of my life, I've sort of coddled it--like when I do yoga, I use my forearms instead of my wrist--I don't do pushups, or other things that will bother it. Recently though, I turned 40, and have been working with a trainer. We've been working together to push the limits of what my wrist can do. We use a lot of resistance bands, instead of free weights, but I don't use a brace, and I'm want to make sure I'm not doing anything that will cause me more pain later. Right now, we just try to listen to my body, and work around if needed. I would be curious to know if anyone with severe madelungs has successfully developed a fitness/strength program. Thank you so much!

Anonymous said...

I have madelungs deformity, bilaterally. I am 13, recently been having physio treatment to help strengthen my wrist. Ive had it for 3 months but the pain is so unbearable they have to make my appointment for a consultant quicker. I went to my doctor to see if I could have any pain relief, so far im on paracetamol and ibuprofen. It is looking like I will need surgery.. im terrified. My mum didnt believe me but when I got my diagnosis, she went straight to the internet to find outmore... the pain is so bad... I struggle to write... in some ways I want surgery if theres a chance the pain will go... but im scared...

Alexandria said...

I am so happy I have come across this post!
Reading your story really inspired me.

I have had Madelungs for 15 years now and I randomly do a search on google a few times a year just to find a community of people with this condition. And I have finally built up the courage to share some input and seek suggestions.

I was diagnosed with Madelungs when I was in 3rd or 4th grade. I had a corrective/prevention surgery on my right wrist which is the most severe. My right arm is about 1 1/2 inches shorter than my left arm.
But that never stopped me from participating in sports and playing the viola. As a child I figured out what my limits were. I cannot do pushups, pull ups or planking for extended periods of time.

As a young child I couldn't understand why this happened to me. I was teased about my "weird hand". I still wear bracelets to cover up my wrist sometimes.

I have recently gained an interest in yoga but I am concerned about my wrist strength. I too coddled my wrist and I find that my wrist is very weak. When I do strenuous lifting at work and around the house I tend to feel soreness and pain at times in my wrist. I was thinking about getting some wrist straps to help.. I will look into the brands suggested.

Does anyone have any suggestions for new yogi with Madelungs or one shorter arm??

Jeanne Ray said...

I am so relieved to find this blog. I am 63 and just today learned what was wrong with my wrists. (A name for it) I went in to see a doctor about the carpel tunnel in my left hand. I will be having surgery for that. I have bilateral Madelungs but not as bad as the picture shown. My dads mother had it and my son has it. I have short forearms and my elbows bend forward just a bit so that my arms do not hang straight down. I saw in one of the blogs that this person noticed that she became aware of the Madelungs at puberty and that it what I have noticed in myself in child pictures and when my son was 14 is when I noticed his. I do have some moderate arthritis in my wrists from time to time but manageable. I find that I shop for three quarter length sleeve tops most of the time,to cover up my arms and I haven't worn sleeveless tops in public since I was a kid. I see in research that the spine can also be affected and I do have mild scoliosis not taken care of when I was a girl. Other than that I am able to just about anything that is normal to do.

Ashley said...

I have severe bilateral madelungs deformity. Thankfully I don't have any pain from it, never have. Through my teenage years I was so ashamed of my wrists, I was always trying to hide them. Despite my efforts people still stared or blatantly asked questions about why do your wrist look like that? What's wrong with your wrist...... on, and on...... So when I was 16 I had my orthopedic dr. perform surgery on my left wrist (only because I'm right handed), solely for cosmetic purposes, with plans on doing my right wrist soon after. BiG MISTAKE,,,, I'm posting my story for any young girl that's embarrassed of their MD, and contemplating surgery for cosmetic benefits..... Don't do it!!!!!!!!!
It was the most painful recovery for hardly any noticeable improvement. Of course, I could see the differences, because I see them every day, but overall to the average person looking at me, they can't tell I've had one corrected. I stayed with a cast up to my shoulder for 3 months, now I have a long metal plate with screws holding the bone together he had to cut a piece out of to shorten it. I have 2 scars about 6 inches long. It took me years to overcome the disappointment of never having my wrist look normal. .....for the record... the dr I had was great, he did a great job.. I just was expecting a miracle basically. Now I am 30 years old, and I couldn't care less what people
think of my wrists,, I never try to hide it. As you get older, you learn to embrace who u are and the way GOD made you!!!!!!!!!!!! now I see it as a uniqueness, and I don't even mind when complete strangers ask me about it.!!!!!!!! Also I have twin boys that are 7, and another boy that's 6, and thankfully none of them have it........ Bottom line ... don't be ashamed of this, don't let it define you!!!!!! be strong!!!!!!!!! hope this inspires somebody.... thanks for reading.... if anyone needs to talk my email is ashley.beauclair@yahoo.com

Wheelchair India said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Wrist and Forearm Splint Right-Left

Keep Posting:)

Aimie said...

Hey!
I dont know if anyone will read this, but i have just been looking for anybody who has Madelungs the same as me.
I was diagnosed at 13, due to a lot of pain. We believed my wrist was broken and after many hospital visits I found my amazing hand surgeon Mr Pickford! My left wrist used to 'pop' out of place it never hurt but was uncomfortable. I have seen on the internet people whose wrists are much more pronounced. All through school I was bullied for it and tried so hard to cover my arms. Going shopping can be a nightmare sometimes because I always have to think about if it will fit my arms e.t.c.
I cant hold things for a long time because they start to ache. To me they look so obvious, short and bowed. And I've tried my hardest to be okay with this condition but knowing theres nothing anyone can do hurts so much.
If theres anybody who reads this and wants to talk here is my email address aimshh@hotmail.com

Sarita Melero said...

The first time I remember having pain in my wrists was back when I was five. I was diagnosed at 14. It has always been a constant struggle. The pain isn't just in my wrists but also goes to my elbows and occasionally my shoulders. I had surgery on only my right wrist when I was 18. Honestly I think it made the pain worse. This past week i have experienced pain like none other. I cant even hold up a cup and I find itt very difficult to even type this "comment". I just find it interesting being able to talk about it to someone since I have never met anyone else with madelung deformity. How do you guys handle the pain?? My doctor recently prescribed me tramadol 50mg I take two every night and still have pain. I dont know what to do anymore...