Let me preface this by saying that I wrote this while very very tired and that I will be editing for content and flow and doing some fact-checking and linking… also, I am by no means a doctor or medical professional. Just a gal who had surgery and is recollecting that experience.

I’ve gotten quite a few pieces of email from people around the world in response to my posts about the proximal row carpectomy I underwent (the surgery I had to remove three bones from my wrist) to rid me of the pain I was experiencing due to Kienbock’s disease.

I’ve tried to be good about tagging and categorizing those related posts, but I realize that not many of them dwell on how I feel about having had that surgery and how it affects my life (which is often a concern from people who’ve been diagnosed, been informed that a PRC is the solution for them and are considering it/worrying about it).

So – to start, here are all the posts thus categorized.

In a nutshell – Kienbock’s disease is a rare disorder in which there is no supply of blood reaching the lunate bone in your wrist – avascular necrosis of the lunate. Lack of blood leads to bone death (necrosis) and once the bone is dead, it starts fragmenting, turning to mush and being absorbed back into your body. Prior to the mush stage, you can have a prosthetic lunate put in place; by the time I received the correct diagnosis, I was at stage 3b of this 4-stage disease. My only option was the PRC since waiting any longer would’ve meant having my wrist bones fused together and the loss of all flexibility in that wrist. I opted for the surgery.

[and this I pasted from an email I just sent] Essentially, what it boiled down to was this: at the age of 28, I was unwilling to allow for the likelihood of a total wrist fusion that would leave me with a far less-than-functional wrist for the rest of my life. I figured I could still get a few good years out of it and that it was worth it, since the longer I waited, the more the bone death and mushiness would progress. And arthritis would develop. While the procedure seems radical (“Removing three bones from the wrist? And that’s it? They’re gone?” Yes.), there aren’t (at least to my knowledge at this point) many other options by the time you get to the stage where the doctor is recommending a PRC (of course, that would also depend upon your doctor).

From what I remember from my research and conversations with the surgeon, the radial or ulnar shortening works better in earlier stages (and I was pretty far along in the stages of the disease), but even that isn’t guaranteed to help since it removes some pressure, but they’re not certain it’s the CAUSE of the necrosis. For me, PRC was the way to go – I researched, I asked questions, I thought about it – and the benefits outweighed the risks and the fear. And now I’m typing and cooking and driving and eating and folding laundry… and rock-climbing and learning to play the guitar and opening jars on my own again.

And now, a bit of an update in general. I had my PRC in October of 2006, so almost two years ago. I was diagnosed several months before that after having spent years thinking it was carpal tunnel. While I was pretty torn up about my lack of choices initially, since the alternatives (inaction and pain, or wrist fusion) weren’t really choices. I researched, I read, I talked to my surgeon several times. He gave me his home number so I could call him outside of office hours with any questions that might hit me over the weekend while I was determining if surgery was the right choice for me.

As you might guess from that, my orthopedic surgeon is a good egg and a good surgeon; he was the third one I went to, and the third time was the charm for me. Very much a Goldilocks scenario. I made the decision, a date was set, and I talked to him several times about what exactly the surgery would involve, what he would be doing, and what I should expect. For some people, this is terrifying. For me, knowledge is power and I wanted to have as clear an understanding as possible.

I had the surgery bright and early on a weekday morning in late October, just a few days before Halloween. I sort of planned it that way since it would be the perfect excuse to not have to come up with a Halloween costume; I’d be in bed on painkillers. When I woke up after the surgery, there was some pain… mostly from the swelling. I was in a soft cast so that there would be plenty of room for the swelling. My fingers were slightly bruised (just spreading from the wrist area) and swollen so they resembled Vienna sausages made from slightly yellowed tofu. Just picture it… yes, precisely that attractive.

It was a fairly quick healing time; I was in the cast for just shy of four weeks. That was more than enough, though. I was cast from my hand to just above my elbow (bent arm) so that I couldn’t twist my arm in any way and disrupt the healing. So I had a sling and walked around with my arm bent into my chest for a month. The desire to stretch out that arm was so strong… I would lay in bed, fixated on how wonderful it would feel to straighten my arm. I came close to begging the doctor to remove the cast just so that I could straighten my arm once for a few minutes. But I didn’t. I just used one of those pressurized air can thingies to project some cold air down into the cast once in a while. Sweet, sweet relief.

The cast came off a couple of days before Thanksgiving 2006; I actually helped prepare Thanksgiving dinner with my healthy right hand and as much as I could with my very weak, slightly yellowed, grossly shriveled and vaguely smelly left hand. That was just because it was sitting in the cast for a while. I kept that hand away from food. The stitches were almost gone by the time the cast came off, and the little dark spots where they weren’t yet dissolved disappeared soon thereafter.

Initially, my left wrist was extremely weak. Extremely. I was home alone one of those days when the cast first came off and I broke a mug because I tried to take it out of the cabinet with my left hand (trying not to baby it and overcompensate by working my right wrist) and wasn’t strong enough to hold it. I cried and it was pretty pathetic. Then I started occupational therapy a few weeks before Christmas… that continued through to mid-February. Initially, I couldn’t drive myself there because I didn’t have the strength or range of motion in my left wrist to drive safely. After a few weeks, that changed.

It was hard work – I had exercises to do at home to help increase my grip strength and range of motion, and a kick-ass occupational therapist (OT) who understood how seriously I wanted to regain normalcy in that wrist. And an understanding boss who didn’t say a thing when I had to leave work early 2 and 3 days a week to attend therapy and follow-up visits with my orthopedic surgeon. And co-workers who understood that typing with one hand wasn’t the quickest way to communicate.

Anyway, my right hand (dominant writing hand) has 90 pounds of grip strength; post-surgery, my left hand had barely five pounds. FIVE. After those months of occupational therapy, grip strength in the PRC wrist had improved to 31 pounds. Range of motion increased to what the OT the level of “functional.” Before being discharged from occupational therapy, I worked with the OT to develop some exercises I could do at home. And I did – the weighted exercise balls, stress balls, silly putty squishing, massaging the scar tissue, etc. And then for a while, I was just on auto-pilot, getting used to using that wrist again since the pain I had for years before the procedure had caused me to perform most activities by overcompensating with my right wrist. Dividing up the labor evenly was a conscious effort.

Ten months after the surgery, I started rock climbing (indoors). It was for a variety of reasons – and strengthening my wrist was not the primary or secondary or even tertiary reason. But in talking to my OT back in the day, she had mentioned that I could strengthen that wrist significantly and make small improvements in ROM (range of motion) with continued training. But the range of motion will never be what it was or what is in my right wrist. Bottom line: my anatomy has changed. There are bones missing and the tendons are looser than they were because I’ve lost some length of bone. That “floppiness” causes some weakness – but rock-climbing has helped with that.

Below: photo of my post-PRC wrist taken 8/10/08. The horizontal line is the scar, which is really not that bad.

I went from climbing the kiddie walls and struggling with those, to being able to handle (and successfully complete) 5.8/5.9 level problems (climbs) which involve some more challenging hand grips and overhangs and whatnot. I can’t pinch or crimp too well with my left hand, but I find ways to creatively problem solve while I’m up there so that I don’t rely on my healthy right hand all the time. Trust me; the desire is there, but I try to use both. I sometimes tape my wrist for reinforcement when the weather makes it ache or if there’s a move that I know will be tough for me. There’s always a way.

Pilates and yoga are tough for me because I can’t bend my wrist backwards far enough to rest my weight on it for any plank/push-up type positions. But I do what I can and modify as needed. I inherited a guitar from a friend and am trying to teach myself to play. That’s also excellent practice for the wrist. I still refer to that wrist as “Gimpy”, but Gimpy is much stronger than I ever expected. Gimpy has many a good year left in her yet.

(Please forgive the slapdash nature of this post. I am extremely tired and running on four hours of sleep, but wanted to address this and post the information sooner rather than later. I’ll go back and do some editing later this week for flow, content, logical progression and to add some links to outside sources.)

3 thoughts on “My wrist surgery – the view from two years out.

  1. Hi there I stumbled across your blog after researching Kienbocks disease which is pretty rare I am finding.I am lucky in a way and in the early early stages and I was just put in a cast about 2 weeks now and my doctor hopes that this will do this trick even though she said the chances aren’t in my favor but I really want to stay away from surgery. How are you feeling? Oh my name is Dave,David from NY I am 28 and work in banking. So how did catch yours? Where are you from by the way? Feel free to email me,tippytop100@aol.com

  2. I didn’t have Kienbocks disease … I dislocated my lunate playing soccer and didn’t know it, soon the pain was unbearable, but my genius doctor misdiagnosed it as a sprain and recommended p. therapy (with a dislocated wristbone … imagine). Got surgery like 10 months later, my lunate had disintegrated by then. Your wrist looks good by the way, much better than mine (the scar is vertical).

  3. I also have Kienbock’s disease. I underwent a surgery in March this year. My lunar wrist bone was more or less in the same stage of necrosis as Yours but the surgery type was different. I have two titanium pins in my hand, destined to stay there forever forming a V shape in my wrist. The idea is that joining the remaining wrist bones together with two pins will prevent their collapse and further development of disease.
    I’m from Poland. I will spare You of stories how our medical system is organized and why.. There are very few doctors in Poland dealing with Kienbock’s disease. I know of one and that’s the one who did my surgery. Guy seems to know what he’s doing but he’s also very stubborn and it is very hard to discuss anything with him. I envy You all those consultations and informations you were able to obtain from Your surgeon. Here, unfortunately, a doctor is like God, you have to plan a visit a month in advance, and you pay hell, too. In the end You don’t even know if the doctor will have time for you at the day of appointment. That stuff, unfortunately has changed little since the fall of communism. That’s the case, at least with the doctors specialising in very rare diseases, such as this one. Excuse my bitching, but that’s just terribly annoying to be treated like cattle.
    I used to exercise a lot, I actually had Kienbocks disease when armwrestling with my friend and that was the critical moment for me because the stress broke my wrist and cut supply to the lunar bone. For 3 years however, I wasn’t aware of that/I just knew something was wrong but delaying any actions/ till the moment when disease started to progress in the way I couldn’t stand it-stiffness and pain returned after two years since what I was told and what I’ve thought then was just a minor injury. I moved earth and skies and I’ve found that only guy who knew what is happening to me. His diagnose was something that 4 other doctors never thought of-Kienbocks disease. But it was too late to repair that bloody wrist in the way to make it fully functional. I promised myself to find those other doctors and pin their balls to the wall..
    Now I’ve been told : don’t count on any exercises in the future, no push ups, no lifts and.. That makes me depressed. Physical activity, although it’s not my main interest, played important role in my life. To this very moment I didn’t realise how important all those lift ups and push ups done every day were to me. Not mentioning that I have to drive with one hand/and we don’t use automatic gearbox in most cars which in addition to narrow and crowdy European roads is not helpful/, clean up and sometimes, when my hand pains as hell, even write on keyboard, clean up, carry shopping and equipment with one hand.
    I’m still waiting and waiting, this time for the physical therapist to meet with the doctor to discuss my relatively low progress in exercises. I hope the outcome of this meeting will be worth waiting and my bitching will turn out to be pointless. The therapist is good and I still, above all lay my trust in the doctor. I’m only annoyed because I have an impression that the latter failed to inform me properly about the options of treatment and didn’t seem interested in what my lifestyle is, and my expectations towards my hand.
    After reading about all what You went through I must admit You are a brave person, considering the circumstances. I, too remember the feeling after the surgery; sausage looking fingers, pain that couldn;t let me sleep for few weeks and the blood pipe..
    Thanks for sharing Your experience with this rare disease. I think it might be a bit of use for me in the future,

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