Comments on: Madelung Deformity

By: Ann

Ann — Mon, 19 Mar 2012 20:24:18 +0000

Rachel,
You can look into splints for when you play softball, I found that the ones that work best are the ones that are custom made, not the ones from the store. Ice and heat both work for me, alternating them is what seems best. If your stomach can handle it, ibuprofen on a daily basis helps. My doctor prescribed a prescription strength dose and it helped also. I also have arthritis in my wrists, so I have a double whammy and can sympathize. If you can rest your wrists often when playing sports or in band, that helps too. I am not sure where you are at but is it possible to travel to another clinic, to get a referral to a hand surgeon? My girls had their surgeries at Mayo Clinic in Rochester, and it went very well for them and they have had no further problems. The procedure is called a Vicker’s release after the surgeon who figured out how to fix it. Good luck!

By: Rachel

Rachel — Wed, 29 Feb 2012 01:13:14 +0000

hi anne andrew, im Rachel im 16 years old i found out i had madelung’s when i was like 13 and i need surgery on my left wrist, but no dotcor can fixs it where i live so i been in pain for a while off and on and i play softball and im in marching band soooooo kinda sucks more the things i love i have trouble with now. I was wonder what should i do or tips to help my pain. My parents dont like me takeing pain killers for my pain so i usally get ice or heat to help the pain. so i would love to hear what you have to say and others what they think helps the pain or numbing in fingers. thank you
-Rachel <3

By: Rachel

Rachel — Mon, 27 Feb 2012 02:14:49 +0000

ann andrew,
hi, im 16 years old i found out i had madelungs about 3 years ago im kinda new what really madelung’s can do to your body all i know is your arm. is it true it can mest ur ankles up and your back?
im 5’3 my dotcors said im done growing and i still havent had surgery for my wrist. i still have pain sometimes. i play softball and marching band so i do a lot of things with my hand. Ever time i move it, it pops and the doctors i went cant help me at all. idk what to do and im only 16 =[ and im already giveing up. so i hope u or someone can help me a little.
– Rachel <3

By: anne andrew

anne andrew — Sun, 12 Feb 2012 19:46:24 +0000

hi everyone…i am a 70 year old female with madelung’s. i have felt it everyday for 70 years i am sure. at least as far back as i can remember. take my word for it, this is strictly a deformity inherited from a family member somewhere along the line. i don’t believe you can get it any other way. i also know it will affect your ankles and feet, and probably the back. i have all these. my ankles and feet are now deformed, and i can’t hardly walk, no dr. will admit it is due to MD. my back has always been bad, have jad surgery, and i have osteoporosis, degenerative disk, and you name it. neck and spine are chronic pain. i have had 4 surgeries on my arms. if i had it to do over? probably would have left my arms alone. 1 surgery left my finger tendons disconnected from my wrist. followed by another surgery to reconnect them, didn’t work. i can now only type with my 2 index fingers as that’s all i have control of. they are now so painful i am looking into getting a talking program on my computer as soon i won’t be able to this either.

as for connections…i am lucky enough to come from a family of photographers. i have thousands of photos dating back to the 1800′s. i have brought them all up on the computer and can see the deformities. great great and great gma had the same wrists. most females under 5′ tall, men about 5’4″.

as they used to call them…”pidgeon toes” and more recently club feet, they do admit come from MD. that takes in my brother, my 2 sons, my cousins sons, and my grandchildren. my gma was one of 12 children, i have no idea as to the other ones families. i do know about their stature. we were all advised at birth to put our children in shoes…on the wrong feet to straighten the bones. yet now they say my feet problems are not from same?

this is so widespread as it is in several points in the body that no one has put it all together. i can see it over the generations.

i now have arthritis everywhere they operated. i wouldn’t advise you what to do but i can tell you what happens over the years. they change all the time and never for the better. there has been so little research don’t let any dr. tell you they know this or that…they don’t!!! another untruth…my wrists are very very tiny, blows the big wrist theory right out the window also.
anne

By: Rachel

Rachel — Sat, 28 Jan 2012 05:36:48 +0000

*cant stop me from my life * sorry =[ not best writer and speller

By: Rachel

Rachel — Thu, 26 Jan 2012 23:46:21 +0000

ann,
I know they can shorten my lil left bone or they can make it longer =/ and we havent found a doctor yet. my parents are doing there best to find one but there not much ppl know what madelung’s is or there scared to mess with it cuz it could make me have more pain what i have now. So im just waiting and im going to play softball this year no mater what my doctors say cuz they stop me from my life when im only 16 and i only have 2 years left out of high school =[ I think we going to my family doctor again and see what doctor could help me cuz i got and new doctor and his beter =] so he could help me i think.

-Rachel <3

By: Ann Hennebeck

Ann Hennebeck — Tue, 24 Jan 2012 20:42:10 +0000

@Rachel,

What did you find out about surgery? Did the clinic see you now? I hope they were able to give you some answers and help. I still swear up and down by Dr. Bishop and his team in the Hand Clinic at Mayo here in Rochester. He is amazing, answered all our questions and took the time to make sure we were comfortable with our choices and that we were doing the right thing. I hope you are able to find a doctor like that in your area.

Ann

By: Rachel

Rachel — Tue, 17 Jan 2012 02:08:32 +0000

ann,
thank you =] and we trying to have a doctor do my surgery but there no doctor we can find… and i stop takeing meds for the pain so now i have deal with it.i think we are going back to the hospital that i was to yong to go because they are aloud to see 16 years old now =]

By: Rachel

Rachel — Mon, 16 Jan 2012 04:23:47 +0000

also..we made appointment to this big hospital it took us 2 mouths waiting for the day and we drove lil over 2 hrs to get there and soon as we got there we waited a hr and the lady came up to us saying ur to yong to go this hospital… she mistread the files how old i was =/ so the dotor didnt want to see me so they sent me home.

By: Rachel

Rachel — Mon, 16 Jan 2012 03:24:21 +0000

hi my name is Rachel i comment on this page when i was 15 (im 16 now), i still didnt have surgery and i didnt get play softball because my doctor didnt want me to =/ . Im still have lots of pain but my parents cant find no doctor to help me because they dont know what madelung’s is but the doctor that said i have it can not do it because he scared that he will mess it up. i really dont know what to do anymore and now im haveing pain im my other arm but havent said anything to my parents yet because i already know there no doctor could fixs it if i have it in the other arm to… i would love to learn more bout this madelung’s Deformity so i can help the pain.