Here's where I get to explain to you a bit about my situation.
In 1998 after going to my Dr with severe pain in both wrists
I was diagnoised with a condition called Madelungs Bone Deformity.
I have since found out that this condition is genetic and was caused by
my having a Chromosome Disoder called Turner's Syndrome..
After my diagnosis I was seen by several Othropedic Hand Specialist that informed me
Madelungs Deformity meant
that my bones in both wrists didn't form right during growth.
( You'll find a more detailed description in some of the links I've provided )
However this condition and the pain were unknown to me until
I was working at a job that required semi heavy lifting.
Treatment at the time of Diagnosis was to wear splints on both wrists
to try to minimize the pain and was prescribed an Antinflamitory
Within months my condition worsened and the pain became more severe
However, it would be over a year after diagnosis before I had the first surgery.
August 1999 - My first surgery was to have a Fushion of the Left Wrist
This was done by taking a bone graph from the left hip and basically locking the wrist in place.
They used External Fixators to hold the wrist in place while healing.
It would be over 3 months before they were removed.
Then came over 2 months of physical therepy to regain strength and movement in fingers.
to this day fingers will still stiffin up if any activity is done for any length of time.
August 2000 - Surgery on Right Wrist
Seeings as how i'm right hand dominate
A fushion at this time was not a good idea.
So instead my Dr placed a steel plate in the wrist attempting to somewhat stabalize it
while still allowing me to have mobility unlike in the left.
This time a full arm cast was used during recovery..
which took around 8 weeks and once again physical therepy was needed.
but, this time I did not gain as much strength back as I did
in the left ... which really causes alot of problems for me
and i'm unable to lift over 3-5 lbs without droping what i'm tryin to lift
and causing myself even more pain.
January 2002 ... Had surgery # 3 ... This was once again on the right wrist
It was a Right Wrist Orthroscopy with Debrievement
Seems I was starting to develop arthritis on top of everything else
After the procedure I could tell a small bit of difference in my pain level.
Was not a severe after that...I was prescribed a arthritic type antinflamotory ( Bextra )
and a minor pain pill. ( Ultram )
And was told by my specialist that all had been done that could be.
Until the pain becomes too unbearable and were forced to do the Right Wrist Fushion
Which is looking more and more like what's gonna happen soon...
September 2003 ... The pain is getting worse and i've been told the arthritis is forming again...
I'm still taking the Bextra and Ultram...In hopes that it help make it bearable...
I was also prescribed something a lil stronger for those really bad days...
So far the pain is tolerable with the help of the meds
I'm just very very limited on what I can do..
Have filed for my Disability and should hear soon if i'll get approved..
There's just no way I can work anymore with these wrists like they are..
November 2004 .... Finally broke down and had the Right Wrist Fusion
Again, they took a bone graft from my hip and used it to lock the wrist in place
I've had 6 months to heal and so far the specialist
says it's healing very well .. he says the fusion looks solid.
Our concern now is waiting a few more months to see if the plate he put
in will need to come out or not.
So far I can not tell a major difference in my pain level .. however,
It was nearly a year after I had the left wrist fusion before I could tell a difference.
Just like the healing process. I am gradually getting use to the limitations that come with having
both wrist fused. Thankfully I am still able to take care of myself.
Though there is alot I can't do anymore. Normal household task are hard to complete and
alot of times I require the help of my family. I'm like a child having to re-learn how to do certain things
all over again. Handwriting for instance is very hard right now.
but, all in all I am glad I decided to do the final fusion now while I'm still relatively young
It has helped to make the adjustment easier. And hopefully once more time has passed
The pain will be at a tolerable level. This was a last resort operation and the specialist has
told me that there is nothing more that can be done.
I can only pray that as technology grows. They will find some
way of helping others who have this disabeling disease.
For those I share groups with... I hope me telling my story here gives you a lil more understanding
of why I can't post as often as I would like to... typing is just too painful for me
if I type for any length of time..... alot of wonderful activities I use to enjoy
are now impossible for me ... bowling, crochette , and several other hobbies...
but, instead of being down about it
I just find new hobbies that I can enjoy...
such as reading , putting puzzles together , and several other wonderful things..
and visiting with all my wonderful friends...
I just have to pace myself and only do a bit at a time...
And that's my story of living with Mandelung Bone Deformity
Thanks so much everyone for letting me share this with you
And if you or anyone you know suffers from this
I would love to talk to you and hear your story
Please e-mail me anytime ...
 Info & X-Rays | More Info & Symptoms |
More Info | More Info |
so please check back for updates..
* I found most these links by surfing the web
If one of the links I have posted belongs to you
and you'd like for me to remove it... please e-mail me and i'll remove it ASAP
If you have a link that reference's Madelung Bone Deformity and you'd like for me to
share it here.. please e-mail the addy and i'll be happy to see it's posted *
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