Madelungs Deformity

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Hi, I'm Laura :)

My Journey with Madelungs deformity started when i was around 10 years old, when i was put in plaster for a suspected fractured wrist. I spent the usual 6 weeks in plaster, but it was only when i went for my 'healed' x-rays that a clued up X-Ray tech noticed something wasn't quite right. After a few more appointments and an orthopaedic consultant getting involved was it revealed to be Madelungs Deformity. Obviously everything isnt so clear to me in terms of timeline because i was so young. my mum was told id need surgery on both wrists. As far as i'm aware my first surgery was in 2003, on my left wrist. From what i know i had a section of my Ulna Removed and a plate inserted to fix the curve that was being created and pushing the smaller hand bones. (causing a lot of pain for me) in around September 2004 my First plates were Removed.
in the years that Followed I had the Same surgery Repeated on my Right wrist. Which seemed to be a success. However i was still struggling with my left as i was still growing.
In 2010 I had a repeat surgery on my left wrist, and another Plate Removal. Taking me up to 6 Op's in total.
ever since this time Ive suffered Terribly with ongoing pain in my left wrist, especially now over a decade after my last surgery. Ive been to the doctors many times, had a few x-rays here and there hoping for some sort of resolution. Many times i've been essentially fobbed off and told i was suffering with arthritis and would have to learn to manage my pain. (i could probably build a great wall with the number of wrist splints i've been given.)
I suffer with the most ordinary daily tasks, with driving my car causing awful pain, even washing the dishes can bring on a bout of nausea-inducing pain. I've never been able to bear weight on either of my wrists or carry things properly.
Last year id reached my limit with both a deformed looking wrist, and more ongoing pain. I Asked to be referred to a hand/wrist specialist here in my home city. Having waited almost a year to see him due to the pandemic. I was expecting another disappointing, dismissive experience. I was taken for X-Rays, and taken in to see a new consultant. He told me my right wrist is looking good, (i did suspect that the small amount of pain i experience in my right wrist is more of an over-compensation for my tender left wrist) however on opening my left wrist x-rays, he told me that he was not happy with the state of my wrist. If i'm being honest the sight of the X-Rays turned my stomach looking at the mess it is in. He's told me he's referring me to the most renowned doctor in the field, who has extensive knowledge of madelungs, but that he could tell me that i will certainly need more surgery as my ulna is not in the correct place at all. It was all a bit of a blur for me, but he's advised i'll need some more extensive surgery than i've had in the past.
I left the appointment feeling so emotional and overwhelmed. even though i wanted an answer, and i wanted someone to believe me, i've got to used to people not taking me/ and my pain seriously. So i was just not prepared.

So this is where i'm up to today. Waiting for my further referral to this other doctor. The New surgery ahead, Im scared and nervous but taking comfort in reading other people's stories. Which made me want to share mine here too.

I'd love to talk to others who also suffer with this, even just to feel less alone.

Laura