Tammy's Bilateral Kienbock's Disease Story



I have had wrist trouble off and on since 1992. In 1993 I was diagnosed with bi-lateral carpal tunnel syndrome. The doctor wanted to do surgery on both hands right away, but having a one year old I said no. I was given cortisone shots and sent on my way. I had some pain off and on, but avoided the things that seemed to set it off.

My real pain didn't start until September of 2006. I had decided to re-do two over grown perennial gardens and add a rock wall around one of them. By the time I had dug up about half of the first garden my wrists were already killing me. I was ready to quit, so my husband Dwayne (boyfriend then) and sister helped me finish cleaning it out. Dwayne and I hauled most of the rocks to put around it, but my wrists hurt so badly I had to quit. This all took about two weeks. I waited till my wrists felt better, and then replanted the garden the first part of October. The wall and other garden still aren't done.

My right wrist never did quit hurting, but the left was feeling better. It just felt like there was something in it preventing it from moving. By the end of December, 2006 I could not bend my right wrist at all. It hurt all the time and would go numb a lot. I was always complaining about my husband putting lids on too tight. Finally I made a doctor appointment. I saw my doctor on January 5, 2007. He X-rayed my wrist, and said the one bone didn't look right. He said it looked like it was dead, or it could be a shadow on the X-ray. I was sent home in a brace and told to take Aleve for the pain.

I waited about two weeks with no change in the wrist and went back to see my doctor. My wrist was X-rayed again with no change. He decided it was not a shadow. I was sent to an Orthopedic Surgeon. It took about three weeks to get in to see him. He walked in, introduced himself, and said, "I looked at your X-rays, the bone in your wrist is dying or already dead, I have no explanation why, but I can't help you."

He then went on to say he had consulted with his partners and they all agreed that I needed to see a hand specialist. He told me the doctor's name and that he was in Duluth. He also told me if anyone could save my HAND, this doctor could. I asked him what he meant by that, and he said, "at this point I'd say you have less then a 50% chance of saving your HAND."

"What do you mean?" I asked. "I'm right handed! How am I suppose to do anything if I lose my right hand?"

"Sorry, I can't help you." was all he said. I called Dwayne, in tears.

It took another four weeks to see the hand specialist. He looked at my X-ray and said it could be a couple things but he wanted to do some tests and take more X-rays of the wrist. Kienbock's disease was one of the things he mentioned. I heard him in the hall saying I was positive for KD. When he came in the room he said he was positive it was KD, then started talking about my options, which were total fusion, PRC, STT and maybe a radial wedge shortening because both bones were even. I was sent home in a cast to stabilize my wrist and help with the pain. That was on March 5th, 2007. I got married on the 9th in a purple cast! I told him about my left wrist not feeling quite right. It didn't really hurt, but didn't feel right either. He said it was from overuse and not to worry about it. Kienbock's disease is rare enough in one wrist, having it in both was almost unheard of. I was sent home to have an MRI done, and was then supposed to come back to set up surgery.

I went to my own doctor to set up the MRI. I told him about my left wrist not feeling right, and he decided to X-ray it. The X-ray was normal, so he went ahead and set up an MRI of my left wrist as well. I was supposed to have the MRI's and get the results back in a week. Two days later the nurse called and said the doctor wanted to see me right away. I knew I had it in both wrists. I was staged 3b-4 in my right wrist, and stage 1-2 in my left wrist.


original diagnostic MRI This is Tammy's original diagnostic MRI of her stage 4 right dominant hand. Note the advanced state of the lunate.


So back to Duluth to the hand specialist. He decided a total fusion on both wrists would be the best solution. When I asked about the staging he said they didn't matter. Thank God for the Yahoo! Kienbock Disease Support Group and Keith, or that's what I would have ended up with.

I got a referral to the Mayo Clinic in Rochester. After a lot of testing I was staged a 4+ in the right and a 0-1 in the left that was on June 19th, 2007. I had a total fusion on the right wrist July 5th, 2007. I was one night in the hospital and went home in a cast. I didn't see my incision till ten days later. I cried.


Tammy's post-op visit

My cast was changed every ten days or so. The last one came off on August 14th. It's been seven months now, and I have an interesting scar, but I would say compared to what it first looked like, it has healed up nicely. Getting used to a wrist that won't bend was hard, but not as hard as I thought it would be. I hardly notice it much any more.

post fusion top view X-ray Tammy's post fusion X-rays

post fusion side view X-ray

Now, on to the left non-dominant wrist. The original plan was a vascularized bone graft. Since I was staged 0-1 on June 19, 2007, my doctor figured we had plenty of time. I was scheduled for retesting in September on both wrists. The right wrist was healing very nice, but my left had progressed to stage 3b. The window for the bone graft had closed. I had a proximal row carpectomy done on Nov 15, 2007. I spent one night in the hospital and went home in a surgical cast (splint) I had it on about ten days, then in a hard cast until December 10, 2007. I am now three months post-op. I still have a lot of swelling, stiffness and pain in that wrist. I am scheduled to go back to Mayo next month for a check up. I guess we will know more after that, and hopefully, I'll be able write the finish of my Kienbock's disease story!


February 29th, 2008



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