Comments on: Madelung Deformity

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.

By: Dr Arun Pal Singh

Dr Arun Pal Singh — Tue, 25 Oct 2011 09:04:16 +0000

@Dana,

I am sorry for the dead link. Right now we have a forum in place at http://boneandspine.net but because it new, it does not appear to be buzzing with activity. There is a subforum on Madelung Deformity and you all can connect to each other through groups, keep a personal blog and share private messages.

It could become a big resource on musculoskeletal issues as more and more people interact.

By: Dana

Dana — Tue, 11 Oct 2011 18:21:50 +0000

Hello, I am a 38yo female 4’9 and have Madelung’s. My pain started when I developed a Ganglion cyst and that is when I was diagnosed by my surgeon. As I age the pain get’s worse in my right wrist. Especially the busier I get with work (typing) My surgone mentioned 3 different types of surgery to me so now I do not have confidence in him. I recently did a MRI and they said that I may have a oblique tear in the liagament as well. When the pain get intense I feel I should find a specialist that would know about the deformity. But keep thinking in my mind it is a lifestyle that I need to accept. I noticed Dr Singh has responded to some of you and he posted a website for us to talk however the link did not work. Does anyone have this correct link for me to join? Has anyone seen a Doctor in the Chicagoland area that would know about this deformity? I noticed that it is genetic however I am the only one with it in the family.

Dana

By: Shannon

Shannon — Tue, 23 Aug 2011 04:01:49 +0000

I have a madelung deformity in both wrist. The deformity in my left wrist is very severe. I had surgery on the left wrist when I was ten because it became hard to use and it was painful. Now my wrist is pretty much functioning normally however the appearance is still severe. I wanted to know if there’s any treatment to make the wrist more straight or make the arm grow?

I fractured my right arm when I was eight. It grew to a normal length. Around age 18 it became slightly slanted and I started getting sharp pains. I’m 23 now the pain is rare in the right wrist but it still occurs occasionally.

I also have issues with my ankles and balance. I don’t know if its related. I’m doing research to see what my next step should be to correct my wrist and prevent future problems.

By: sally

sally — Fri, 12 Aug 2011 17:21:46 +0000

to the woman who was asking about madelung syndrome my daughter has madelung syndrom unfortunantly she does have severe pain with this she has had one arm repaired and looks great i would highly recommend the procedure