Kienbock’s Disease: What the X-Ray Didn’t Show

In 2015 I kept having frequent hand pain.

I am a CNA and I lift a lot, so I didn’t really think anything of it, except maybe to use my left hand instead and to give my right hand a break.

After a few months, I finally went to the doctor when the pain worsened. I got an X-ray which showed that everything was fine. Doctor after doctor said, “maybe it’s a torn tendon,” and then, “maybe it’s muscle strain.”

When the pain worsened again, I got another X-ray and then two more X-rays over the next couple of months that continued to show nothing. Finally my doctor sent me for an MRI in September of 2015 when I found out I have Kienbock’s Disease.
Surgery was scheduled on my joint to cut into my wrist to shorten my radial bone so I would regain blood flow to the lunate bone. It’s now June of 2016 and I have had worsening pain and very little range of motion in my wrist. I went to an ER twice where they said I was fine and got X-rays both times where they said nothing was wrong and the hardware was correctly in place.

Finally I got my primary care to take another xray and they now can see that my lunate bone is getting worse and that while I was stage 1 in September of 2015, I am now stage 3 as of June 2016 and will require 2 more surgeries (at least) in my life time.
I am having the proximal row carpectomy done in July 2016 during which they will remove the lunate bone completely and the two bones on either side of it. This will last for years and relieve pain while giving me some range of motion back, and when it starts to hurt again I will need fusion, which will make my wrist more mobile. I shouldn’t need another surgery after that.

I thought since I caught it early I would be okay, but it’s progressing rather quickly it’s extremely painful. Most doctors think I’m only medication-seeking which, yes, I’m in pain, and I’d rather have the problem fixed then just masked with pain pills, but I fear I will have chronic wrist pain at this point.

Most doctors, nurses and X-ray techs have not heard of this disease and when I go in and tell them, they have to Google it. I wish there was something they could put in my wrist to replace the hand bones, but sadly everything they have tried in other cases hasn’t worked. The cause of this disease is unknown but it’s more common in people with an autoimmune disease (sickle cell anemia, gout, lupus etc.) Which I don’t have. It is also possibly caused by trauma, which would be more likely in my case.