Steve's Kienbock's Disease Story



I "discovered" Kienbock's at Stage IV. The only option for me at the time was a full wrist fusion, which I had done, originally in 1996(?). Unfortunately, the fusion failed and I had a repeat performance in 1999. I suppose it was "successful" because 3 years later there are no signs of a failure.

As far as I understand, the bone "putty" did not mend properly, and the bone never healed properly. Some of the early x-rays showed that some of the screws had snapped and eventually the plate that held the wrist together (to allow for the fusion to occur???) came loose and was visible through the skin. I saw the x-ray, knew what was happening, and called my doctor from the radiologist, and said that we needed to schedule surgery!

He took one look at the X-ray and said I was right, and we went for round two. The second time he also used some synthetic bone (I think). Now, before your readers get overly frightened, remember that I have spastic cerebral palsy which may have been a major factor in the first failure, but so far, so good, after round two.

I felt at the time, and still feel, that a full fusion is ultimately the only answer to this problem (this is only my non-medical opinion). It just seemed that the preliminary procedures did not often work and the fusion loomed on the horizon. I know that wrist fusion is scary, but the lack of motion in the wrist has had absolutely NO effect on how useful or unuseful (due to cerebral palsy) the wrist/hand is. The fingers still work and I can grasp and grip objects with no difficulty.

The other benefit is that as far as I know, I am done. No more waiting to see how the disease is progressing and wondering about whether future surgeries would be necessary. Even more importantly, I am *mostly* pain free in that hand. The hand will never be 100%, but most times it is fine. Every now and then I put the hand in an awkward position and get a jolt of sharp pain, but it is gone as fast and that's it. I had a scare with the other wrist, but it is fine, just too much abuse from stumbling with a cane.

If I ever get in the situation where Kienbock's is diagnosed in the left wrist, I won't hesitate to have it fused, regardless of the stage.




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