(I'm copying/pasting my post here since different people look in different places and it's relevent for both.)
I have had snapping hip syndrome - in both hips, it got to the point where I couldn't walk because one step and one hip would go, I collapsed a little and had to put the weight on my other leg - not good with forward momentum because the other hip would then go and I'd be left stumbling forward trying to catch myself on something.
And it was painful after each hip with 5 times and I had to lay down for days, then the cycle would repeat. It was believed that my hips were dislocating because my shouders dislocated. One trip to the hospital and the dr said it was my tendons and may as well have said 'nice of you to waste my time, get lost'.
I was stuck in the house for about a year and had to give up a Spanish course becasue I just couldn't get there.
I only got seen about it when my mum had a fall at work and I had to help her with shopping and such. She held onto me rather than use a stick and we had to walk so slow that I ended up worse and ended up in hospital because they were so painful and I was given crutches. A few weeks later I got a letter to go back and I saw a great surgeon.
It CAN be cured. There IS an operation for it, it's called a z-plasty - what they do, is lengthen the tendon by cutting a long z shape in it so it doens't 'flick' over the bone. The op is a pretty quick one, I was only asleep for 3 hours.
If you have trouble demonstraiting this to the doctor (I did with one hip), I went onto tip-toe with the leg to be operated on so the knee was bent (leaving the other foot flat) and straightened the bent leg, and it flicked over.
But, I will mention :
- You're left with a 6-8 inch scar at the top of the leg on the side.
- The physio hurts, you NEED to keep stretching it, else the tendon will heal to how it was before.
- You'll be stuck in bed for a month and a half (except to do physio).
- You'll barely be able to move in bed, because the feeling of gravity opening the tendon hurts (ie, if you roll on the side).
- You won't be able to painlessly straighten your leg for several weeks (while upright).
- You won't be able to walk without cruches for up to 3 months.
- A z-plasty in the hip is a rather painful operation, I don't want to put you off, but the best way I can describle it is having demon claws in your leg to the bone and having it ripped apart sideways. It's easily taken care of with some morphine (and you go into a nice trance), I also had an anasethic in the leg the second time. Believe me, it's worth it to be able to walk. If I had to go through it a third time, I would.
- Everyone will have to wait on you hand and foot
Yet I would suggest getting the op(s) - they changed my life.
Ehlers-Danlos Syndrome type 3, diagnosed Febuary 2009. EDS is the advisor of my life, NOT the ruler!
I am nobody, nobody is perfect, therefore I am perfect.
Siegfried Schtauffen, deine Legende stirbt nie!
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