I first remember having wrist pain when I was seven years old. It slowly got worse and worse. I had double carpal tunnel surgeries when I was ten, but they did nothing to relieve my pain. The surgeons said they could try doing the surgeries again, but, short of that, they didn't know what to do. They told me to wear wrist braces at night and take pain medication, and sent me on my way.
The pain got worse and worse over the years, and both my hands started cramping up routinely and becoming immobile for minutes at a time, which was very dangerous, as I was a dog groomer who handled scissors all day. I could easily cut myself or a dog.
I had to end the career I'd spent my whole adult life cultivating, about a month after getting married. It was a huge blow.
The pain got so bad that I'd sob openly whenever my wrist was bumped. My right wrist was worse, but they both became almost immobile permanently, and still I had no answers. Doctors kept telling me that I must've sprained them, but that everything looked fine in all their tests; I just had severe pain and hardly any movement. They kept wanting me to take narcotics and keep my wrists in braces until they felt better, which they never did.
I had no explanation for the mysterious condition that had left me crippled.
Finally, at twenty-four, I was sent to an alternate orthopedic surgeon. He was extremely experienced and even taught at a college. He examined my wrists and did something very simple. I think I even rolled my eyes when he said he was going to do it: take x-rays.
"The pain's been happening since I was a child, I don't have broken bones," I told him. At this point, my husband, who was supporting me financially completely, had to help me with almost everything. My hands were useless. I could hardly hold a cup to drink or a fork to eat- he had to help feed me sometimes when my fingers and hands would cramp up. I was depressed from the constant pain and even suicidal.
The surgeon went ahead with the x-rays, and when he got them up on the light board, he stared at them for a long time. "We need to do an MRI right away," he finally said. He didn't want to give me more information until the results were in.
"You have Avascular Osteonecrosis in the wrist, also known as Kienbock's Disease. It's extremely rare and beyond my expertise- I'm sending you to a very experienced surgeon who specializes in hand micro-surgery right away."
My head whirred. I was happy to finally have a diagnosis, but scared of what it would mean. He told me that essentially bones in my wrist spontaneously and painfully died over the course of ten years, and broke apart, causing arthritis. The pain was from the other bones shifting and being stabbed by the dead bone fragments.
Kienbock's Disease is so rare that there's not much known about it, and there's no cure. If you catch it at an early stage, there are surgeries that can buy you more time and potentially slow the progression of the bone death, but by the time I was properly diagnosed, I was in stage 3B of 4, meaning that I had two main treatment options: a Proximal Row Carpectomy (PRC) or a wrist fusion.
PRC is a major operation in which diseased/affected bones from the wrist are removed. For some people, there's no pain relief or range of motion improvement at all after surgery. Some people live almost pain-free for up to 20 years after a PRC, but, in the end, they do fail, and a fusion is required.
I decided to skip the risky PRC operation and go right to total fusion, which involved breaking all the bones in my arm and wrist and fusing them with metal hardware and a bone graft.
I wanted a sure thing, and, even if I'd gotten a successful PRC, the best case scenario would mean I'd have to go through a total fusion in my forties, when I'm older and my body wouldn't heal as well. I was already used to not having any wrist movement, also, so I wasn't very scared of having a permanently immobile wrist. I also didn't choose to have a PRC because I didn't want to have another big surgery looming ahead of me. Fusion seemed like the best, smartest option.
Some people end up needing to get their hardware removed after fusion because ligaments can get caught on the screws, but as far as I'm aware that's the only relatively common complication, and something I was more than willing to deal with if the time came. It turns out, I didn't have any complications after surgery at all.
Within a month of getting diagnosed, I had the operation: Total Fusion with Denervation (which means that they took out nerves in my wrist to further take away pain). The first three days after the operation were hell- even on Dilaudid, which my surgeon said is a pain killer stronger than heroin, I was in agony. Then, suddenly, it seemed, the pain peaked and then subsided. It hurt, but I was so used to my wrist being in pain that it didn't bother me.
I had to stay in a custom thermoplastic splint 24/7 for a couple months, which was actually very comfortable. At first, I wasn't able to move my fingers, but after two weeks and losing a lot of the swelling, the movement slowly came back.
As my fused wrist got better, my other wrist improved, too. I don't have evidence of Kienbock's in it right now, although developing it is a possibility. My symptoms were likely from overuse and overcompensating for my right hand being so useless, combined with having generally, genetically weak hands/wrists.
Within a week of having surgery, my husband said he noticed a huge improvement in my mood. I was no longer depressed.
The chronic pain had been wearing on me so much that it had affected my emotional health, and the operation saved me from all that.
I'm twenty-five now, and it's been just over a year since my operation. I'll still never go back to dog grooming- the clipper vibration hurts my wrist- but my husband got a huge promotion at work recently, so being a housewife isn't a financial burden to us anymore. I can kayak, bowl, and I don't even notice that my wrist doesn't bend anymore. It's really not a big deal, I adapted so quickly.
Getting diagnosed with Kienbock's as a newlywed was really hard. I threw myself a pity-party for about a week after the diagnosis, then bucked up and did what I had to do to get better. I'm so lucky that I was able to eventually find specialized surgeons who knew how to help me., and that I had my amazing, supportive husband by my side. Our relationship is stronger than ever. Going through all that- him having to help me change clothes and eat and deal with my depression- to seeing the light at the end brought us closer together.