[arthrogryposis] Re: Fwd: Arthrogryposis Ireland Web Enquiry Form

  • From: "Vajragupta" <mermaid@xxxxxxxxxxxxxxxxxxxxxxxx>
  • To: <arthrogryposis@xxxxxxxxxxxxx>
  • Date: Wed, 19 Mar 2008 13:14:43 -0000

Hi Kieran

My name is Vajragupta (the name is Buddhist, although I am a white British 
woman!) I have arthrogryposis and am 54 years old. The AMC affects all my limbs 
and I wear specially made boots and walk with under-the-arm crutches. 

I had a left hip replacement when I was not quite 30 in 1983 (which was too 
young to lose a hip, I realise now). Because my hips are small and I had had 
previous surgery on my hips, it was not a great success; needing a lot of 
cement to secure the new joint (which trapped nerves). I hung on to the 
replacement hip for 10 years, at which point I went into hospital (Barts in 
London) to have a second replacement. About an hour before surgery, I learned 
that there was a possibility that another replacement would not be viable and 
that I may have to have the old replacement removed and I would be left without 
a hip (called a Girdlestone procedure). In fact that is what happened.

The reason a second replacement couldn't be fitted was that the old replacement 
had become loose and worn too much of the femur bone away. The consequence of 
this procedure was pretty severe in that it meant losing length off the leg on 
the side of the hip removal. My balance, without this joint was extremely poor 
which made a lot of activities difficult and meant that I could no longer stand 
without support. Also, since the operation I can no longer do any flights of 
stairs. I can do one or two steps if they are shallow, or more if my husband 
lifts me at the waist as I jump! 

In retrospect, I wish that I had looked at alternative therapies for the 
arthritic pain I was having.  When I saw consultant orthopaedic surgeons at 
that time, the first one I saw did say that I was too young for a hip 
replacement, but the second surgeon agreed to do it. It was my decision, and I 
don't think I realised at the time that a second or third replacement might not 
be possible. 

In recent years I have developed arthritis in my other hip and it really needs 
replacing. The surgeon I now have (Mr Tucker) says that if I want the right hip 
replaced he would first have my own hip scanned and then probably have a 
special joint made, so that it fits properly. Sounds an improvement on what 
used to be available, but I am not prepared to take the risk of ending up 
without any hips, which would probably put me in a wheelchair. However, I seem 
to manage to stay relatively comfortable by keeping my weight light, and with 

I guess if you are 50 now, then it is likely that a replacement will not last 
the rest of your life as I believe that they only last about 15 or so years. 
However, if your other hip is still sound and your surgeon thinks your hip 
would be viable for a second replacement, then it may well be a good idea to go 

I think we arthrogrypotics are all so different that it is difficult to know 
what the consequences of surgery might be. Most significantly, it depends on 
how our other joints might compensate and what strength we have in various 
I hope this doesn't seem like a gloom and doom tale! I manage very well and I 
know that surgical procedures improve all the time. 

Best wishes

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