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Madelung's Bone Deformity

Posted In: Medical Stories 5 Replies
  • Posted By: greenleaf
  • March 15, 2009
  • 05:37 PM

I have Madelung's Bone Defority,and am wondering if anyone else out there has this. I know this is quite rare. I have bilateral type. I have been to so many DR's but they all say the same thing, there's nothing we can do. The first ten didn't even know what it was. They say I am to old for any kind of surgery but, I find that hard to believe.The pain I am in is unbearable. My hands,from fingers all the way up to my shouders hurt every minute of the day. I wear arm braces but they do not help. Even if I take a pain pill it helps my back some but it never even stops any pain in my arms.Now the pain has gotten into my feet and ankles. Has anyone had any kind of luck getting any help. This disease you are born with but I started hurting eight years ago on a constant basis. Thanks!

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  • The real question is - if you were born with it, why didn't it bother you until 8 years ago? I have had arm pain all my life. But since I was born in the 50's you didn't just run to dr's at least we didn't. My mom used to wrap both my arms with ace bandages for a few weeks at the beginning of each season. I just thought it was because I had broken both arms when I was a kid. I have no idea why the pain became so intence eight years ago. But that is when all the bones in my hands and the ulna bone became so prominent. If you read any sites about this you will see that not everyone has the pain that goes with the disease. Also I have worked with my hands my whole life. I was a professional cake decorater and caterer until the pain is so bad I can no longer do my life's passion. I do have hospital tests results confirmming the disease. Try and ask a dr. was this disease is. Nine out of ten will not know!
    greenleaf 9 Replies Flag this Response
  • It didn't hurt so much before because this is the type of deformity that keeps getting worst with time and with the continuous use of your joints. I have it too. I also have it on both wrists and had never had problems until a couple of days ago. I went to the dr when I was about 14 yrs old (I'm 25 now) and at that time the dr told me "if they don't hurt, leave them like that; but if you start feeling pain, numbness or lose strenght we'll have to do surgery". Here I am 11 years later and I'm needing surgery at least on my right wrist because I can't use it anymore,it just hurts too much. do you know if insurance will cover a surgery like this?
    Anonymous 42789 Replies Flag this Response
  • I am a sufferer of Madelungs deformity and had corrective surgery between the ages of 10-15 years. I will be 40 in October and since my operations I have been symptom and pain free.I am quite blown away with how much information there now is on the condition as for the longest time I thought I was very much alone. My Doctor at the time was a Professor David Vickers - Brisbane (now retired) and from all reports was quite the pioneer in the field of Madelungs. He told me that at the age of 10 mine was the most progressed case he had ever seen as I had quite a bad deformity going on. It was so bad that I suffered quite an amount of pain and if left I would have reached a point where I would be unable to use my hands. Dr Vickers told me that from what he learnt from doing my operations he was able to reduce it down to 1 operation to correct the problem. Apparently pictures of my hands/wrists appear in medical journals due to the severity of my case. As I mentioned, I no longer have any pain or limitation in my wrists but I have now developed a condition (not associated with the Madelungs) called Fibromyalgia. Fibromyalgia is a collections of problems but the main being aches and pains all over the body, a bit like having arthritis of the muscles. I am under the care of a wonderful GP in Brisbane called Dr Kathleen Bankhead and have been to the Pain Clinic and the Royal Brisbane Hospital but I find the best way to deal with such severe pain is by using a Anti-depressant called Endep (50mg at night/it blocks the pain signals to the brain not for depression) and a Fentanyl Patch (50mg applied once every 3rd day). I have had a lot of doubters (Doctors) due to the type of medication that it is but I am well monitored and take the whole matter very seriously but without it I would not be able to function. Maybe you could mention these medications to your GP or ask to be referred to Pain Specialist. With regards to the Madelungs try and see if you can be referred to a Hand/wrist surgeon. I know Dr Vickers did train another Dr before his retirement and I think his name may be Dr Andrew Morris at the Royal Brisbane Hospital, Herston Rd, Brisbane/Australia. I know that there must be someone out there to help you and my wrists were so bad and I managed to get them fixed. If you are able to get in contact with Dr David Vickers (lives at Albion in Brisbane) mention me (Jocelyn) to him as I am his most favourite patient (or so he says) GOOD LUCK ! I have Madelung's Bone Defority,and am wondering if anyone else out there has this. I know this is quite rare. I have bilateral type. I have been to so many DR's but they all say the same thing, there's nothing we can do. The first ten didn't even know what it was. They say I am to old for any kind of surgery but, I find that hard to believe.The pain I am in is unbearable. My hands,from fingers all the way up to my shouders hurt every minute of the day. I wear arm braces but they do not help. Even if I take a pain pill it helps my back some but it never even stops any pain in my arms.Now the pain has gotten into my feet and ankles. Has anyone had any kind of luck getting any help. This disease you are born with but I started hurting eight years ago on a constant basis. Thanks!
    Anonymous 42789 Replies
    • September 1, 2010
    • 01:08 AM
    • 0
    Flag this Response
  • I have Madelung's Bone Defority,and am wondering if anyone else out there has this. I know this is quite rare. I have bilateral type. I have been to so many DR's but they all say the same thing, there's nothing we can do. The first ten didn't even know what it was. They say I am to old for any kind of surgery but, I find that hard to believe.The pain I am in is unbearable. My hands,from fingers all the way up to my shouders hurt every minute of the day. I wear arm braces but they do not help. Even if I take a pain pill it helps my back some but it never even stops any pain in my arms.Now the pain has gotten into my feet and ankles. Has anyone had any kind of luck getting any help. This disease you are born with but I started hurting eight years ago on a constant basis. Thanks!Hello, I too have made lungs deformity, but i am not sure on what kind. When i was seven years old, my made lungs was misdiginosed, but my mother was smart enough to know that something was wrong when i stopped growing altogether. I underwent two surgerys, one for each arm, and thankfully, they were sucessful in treating the pain. My doctor was Dr. Mee(not sure on the spelling) and he was the first doctor to take us seriously. I am from Indiana but Dr. Mee flew in from his house in California just to see me because he is a specialist on this type of bone deformity. I was told that Made Lungs CAN infact be treated at an older age, but with mulitpul surgeries. I am so sorry that you have to undergo to pain related to this awful deformity, but I, as a 14 year old girl, cant get a boyfriend because i have short arms..... awful, huh?
    Anonymous 42789 Replies
    • January 7, 2011
    • 10:19 AM
    • 0
    Flag this Response
  • I have Madelung's Bone Defority,and am wondering if anyone else out there has this. I know this is quite rare. I have bilateral type. I have been to so many DR's but they all say the same thing, there's nothing we can do. The first ten didn't even know what it was. They say I am to old for any kind of surgery but, I find that hard to believe.The pain I am in is unbearable. My hands,from fingers all the way up to my shouders hurt every minute of the day. I wear arm braces but they do not help. Even if I take a pain pill it helps my back some but it never even stops any pain in my arms.Now the pain has gotten into my feet and ankles. Has anyone had any kind of luck getting any help. This disease you are born with but I started hurting eight years ago on a constant basis. Thanks!Hi there. I have it as well. You just have to find a right doctor (I know it's not easy).I was diagnosed when I was young (12) but had to wait for the operation till I stop growing, otherwise it wouldn't have any sense. So there is no way you are too old!There is no hospital/clinic in the world that specialize in Madelung (because it is so rare) so you really need to find a good hand surgeon (that's what I did). Now I'm 30, may hands only react on weather changes from time to time so it's like heaven comparing to the past.There is a way to relief your pain!Good luck!
    Anonymous 42789 Replies
    • February 22, 2011
    • 09:35 AM
    • 0
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