Kienbock's Disease, A Male Point of View



After a little bit of playful bantering, with the creator of this fine site, about the somewhat sissified nature about some of the advice, I was challenged to write an article for her, from a male point of view. It was with reluctance that I accepted this challenge, knowing full well that being a man, what I say doesn't always come out the way I mean, and I open myself up to the barrage of barbs from any of the female readers here. I clearly understand the difference between the sexes, physically and emotionally, and it is not my intent to demean either, but provide a little insight to one male's thought process, provoke some thought, and have a little fun with it too. I think women are the best things on this planet, complex and compassionate, but they really do not understand what a guy goes through sometimes. I have casually mentioned to a few in the support group, my regret at not having kept a journal of my KD experience, and so it is with great trepidation that I proceed with this armed only with my wits and an often times flawed memory.

While growing up, I bought into all the typical male stereotypes in regards to expressing my thoughts or feelings, always had to be strong, work through pain, and when everything is falling apart around you, stand firm, like a rock. I have never been one to get together with a bunch of guys and spend the weekend in the woods, as we all beat the drum and get in touch with our inner selves. I've never felt compelled to explore my soft, sensitive side. On the other hand, I don't sit around in the tavern everyday trying to impress my buddies or dwelling on what might have been. I like being home and just try to get by. I like to work hard, sit around on Sundays, and watch the game. The old-fashioned concepts would hold that the man is typically the provider and main breadwinner of the family, a role I gladly accepted, but as such, have had a lot of extra anxiety when it comes to a sudden physical limitation.

I had been doing a lot of heavy labor at my home, in addition to a physically demanding job involving long hours and much overtime, when the twinge of pain first started. It was nothing at first and I had so many other aches and pains, I paid little notice. Day after day, turning into week after week. Well, I am starting to get a little long in the tooth, so it wouldn't be unusual for me to have a touch of the old rheumatism would it? This is just one of those things men who work hard with their hands get. I reflected on living out my twilight years with another constant pain and wondered about the efficacy of rubbing WD-40 into arthritic joints, as I had read in many fantastic accounts. I love to think in these terms, as WD-40 has become a main staple in my workshop and I'd like to think it is capable of loosening up anything! And the smell…is there anything better? You sniff that WD-40 and you know something important is going on.

Without much thought or concern, I just accepted this new pain into my lineup, thinking it to be just one of those things that men deal with all the time. I remember Johnny Unitas walking onto the field, a battered and beaten warrior, but once he was in the game, he had all the exuberance of his youth. Joe Willie Namath, whose knees were so bad he could hardly walk right, but out on the field of play, the grace of a gazelle. The Thrilla in Manila, where Muhammad Ali and Joe Frazier, left every ounce of their strength in the ring. Neither one would ever see such greatness again. Mickey Mantle, with his battery of ailments, but come game day, you know the story. You can rest tomorrow. Granted, I am just an average working stiff, but growing up with such definitively male role models, who was I to worry about a little nagging pain in my wrist? These guys defied pain, scared it even.

The pain in my wrist got worse and worse, and I realized it was not just the usual wear and tear I had always been able to shrug off in the past. My wife would nag me to do something about it, and so at her insistence, I began chewing aspirin like it was candy. Big moment for me, as I had never relied on anything to ease my pain. Drugs are just something I didn't want to get involved with. I had taken them before, for my various other maladies, all to no effect. So when I actually agreed to take aspirin every time she offered, she knew something was up. Still, being a man, I ignored it as best I could, and just didn't think or talk about. These kinds of things aren't things you even want to talk to your family about. It's a sad day when you finally have to admit to your spouse that you have developed some chinks in your armor. It just starts as an off the cuff remark, 'Man, my hand is sore'. Eventually it becomes ' my hand is killing me', and then it finally turns into 'there's something wrong'. You must admit you are not immortal. Of course, she doesn't care about all that, but it's one aspect of your manliness being chipped away. She will give you all the support, and sympathy you can stand, never knowing that isn't necessarily what you need. A good woman will love you regardless, but doesn't have the foggiest idea how to handle the situation unfolding before her, just as I'm sure the opposite is true. I love to be pampered and spoiled, but only when I'm well. If I am pampered because I'm sick, it seems to take on a humiliating aspect that I can't tolerate well.

Life goes on, you keep doing what you do. As a homeowner, there are endless tasks that need to be done, and I have to do everything myself. Hiring a pro is the last resort! That's part of the deal. You're a guy and you don't admit that there might be something you don't know how to do. There are people who rely on you for everything, and you can't let them down. You work everyday and come home and work some more, and get yelled at when you want to just sit around and watch a ballgame. Have you ever been so exhausted, you can hardly stand, and your wife says 'how come we don't go out more?'.So, you screw up whatever bit of strength you have left, and off you go.

While your wife can love you and support you through a thing like this, I think it must be hard on her, as you oscillate between wanting to be taken care of and not wanting to think about it at all. You feel like you are falling into a pattern of being helped, and waited on, and you realize you are becoming dependant on someone, and then you withdraw again, forcing yourself to do things you know you can't. Still, you plod on, because this thing isn't going to stop me. Just like nothing is wrong. You wince every time you move and you find you can't hold your coffee cup anymore. You can't open that jar for your sweetheart. The list of things you are failing at begins to grow.

The pain gets worse, and the things you willingly did before, become a real problem. You start doing less and less, things are backing up, and your wrist just feels like it's broken. The pain is gnawing away at you twenty-four hours a day, seven days a week. You are now beginning to see this as a threat to your livelihood, and everything you've worked so hard for is suddenly in the balance. In my case, this happened after about five months of constant pain, and then suddenly the unthinkable, you admit you need to see a doctor.

I always hated going to a doctor for anything. If you are in good health, why bother, and if you are ailing, you don't want that guy to know about it. Probably something about being the weak one in the pack and you don't want the others to know, lest they pounce on you and tear you to shreds. It's so much easier to kick a man when he is down. I don't know why I hate going to the doctor. It makes me feel like I have less worth, like damaged merchandise, and I'm sure if he pokes around enough, he can find all sorts of things wrong. It's like when you bring your car in for repairs. I just want you to get it running, I don't need you to replace every bad part in there. This is my problem, now; don't worry about all the other things. Fix this and I'll be on my way.

To the doctor I go. My regular doctor, at this point in my life, is a rheumatologist, and I describe the symptoms I have been having, and he does the compulsory, brief exam, and says there doesn't appear to be anything wrong. Now I have to reassure him that there is, cause otherwise, I surely wouldn't be here. Okay, it's off for x-rays. I am waiting for the doctor to return and tell me that they see the problem and it's nothing. Maybe wear this Ace bandage for a week and everything will be fine. Instead, the doctor says they don't see anything wrong, not even signs of arthritis. Everything looks wonderful in there. Normally, I would think this would be good news, but there was something, and this was a road I had traveled before, Non-diagnosis Avenue. I insisted there was real pain emanating from somewhere in there, so after a vague reference of a relation to one of my other problems, he prescribed some anti-inflammatory, to be taken for the next month. I told him I had taken these things in the past and they had done nothing for my other ailments, but he assured me it was nothing and should get better.

I left the doctor, thinking maybe the drugs would be the answer and I would have to resign myself to a life on meds. I didn't like the idea, but maybe I was wrong. Maybe growing older meant you get aches and pains and you take pills for comfort. Just like an athlete, being shot up before every game, just so he could perform. I take the drugs, just as prescribed, waiting for them to work their magic. After a month, with no magic to be found, and since there was nothing really wrong, I decide that this pain was just another cross to bear and I would just ignore it. No sense going back to the doctor when there really wasn't anything to be seen.

Another month passes, and the pain is bordering on excruciating. I'm sure this is because I acted as if nothing was wrong. I kept right on using my hand and doing things that I shouldn't have. I was a man and had to move on with my life. Things needed to be done and they weren't going to get done by sitting there feeling sorry for myself. That was a luxury I couldn't afford. So when did the moment happen? The moment when I couldn't go on? The moment that I knew I had to do something and I knew there could be no turning back? The moment when I knew, I had to ask for help?

I had been working on building a small terrace all summer, with a retaining wall made from concrete blocks and pavers that were fifty pounds apiece. Out of about a hundred and fifty pavers, I got about a hundred and twenty of them in place, working agonizingly slow, wincing, and grimacing with every one. Now with the end in sight, down on my hands and knees, just trying to set one more block, just trying to get the job done, an incredibly intense pain shot through my entire arm, reducing me to a broken, sobbing shell of my former self. This was the moment. I'd be the last guy you'd think would ever cry from pain, but it was just too much. Too much pain, too much frustration, too much holding things in, and too much not knowing. Then, as if by divine intervention, the very next day, I received a letter from the Mayo Clinic saying they had scheduled a follow-up visit early the next month. I had been to Mayo a year and a half earlier, when I was on the Non-diagnosis Avenue on another occasion, and now they wanted to see me again. The great thing about going to Mayo is their ability to diagnose in several days, what might otherwise take months or even years. All the tests are scheduled over a three-day period and it is very efficiently done. I immediately devised the plan. If I can tough this thing out for another month, go to Mayo for my other stuff, and not leave until they tell me what's wrong with my wrist.

The first week at Mayo, I was tested for my other disorder, and then they were going to release me and I said I had to have something done with my wrist. So I booked the hotel for a second week and went through a lot of tests to rule out things, and finally based on a series of x-rays taken on my last day, they said it appeared to be Kienbock's Disease. Kienwhat??? I said, and they proceeded to describe this oddity. I thought, surely, you are joking, figuring they are just saying this to appease me and make me go away. I had never even heard of such a thing much less considered it. They found a small fracture on one side of my lunate and suggested that I likely had just one blood supply to the bone that was compromised by that fracture.

Well, I didn't know what to think. I had a reason for the pain, but could something so small and seemingly insignificant cause so much pain? Pain that brought me to my knees? I never had any real swelling or outwardly signs of anything being wrong, but was always compromised by this intense pain. Yet, when I showed anybody, all looked normal. Could this be it? This tiny bone?

Armed with the diagnosis and the radiologists report, I returned to my doctor, who sent me for an MRI. The MRI confirmed Kienbock's Disease, and I was referred to a hand specialist. It was at this point; I started searching on the Internet for any information about this new problem I was facing. As was the case for many of you, especially several years ago, unless you were a doctor, the information is often times hard to find, much less understand. I stumbled across a support group, and sort of wished I knew what was going on there. I don't need support, just information. I always dealt with everything myself, and it is really no one else's business what goes on with me. I decided to join, just to get some insight into this disease, and could have never imagined how much that group has come to mean to me.

I met many people who had been on a similar journey to mine. People who had traveled the same road and now were moving on. Suddenly, I didn't feel so all alone with this. I found much more then information. I found out how normal my feelings were. I found acceptance by a large group of people who understood exactly what I was going through. It was like after seven months of ever worsening pain, someone could finally 'see' there is a problem here. I was overjoyed at finding this group, and the friendships I have made as a result. As a man, you hate to depend on anybody, but this group was just as important to me dealing with this monster as anything.

As luck would have it, (had just a few drops left) I felt very good about the hand doctor right away. He was a little aloof, but so am I. It was hard telling him that my hand was no good, and I just couldn't do things anymore. He assured me there was treatment, and while it would never be the same again, he could restore it to a mostly pain free state and give me back most of my functionality. He made me feel very good, answered all my questions, and I walked out of there with an appointment to have surgery the following Monday, two weeks before Christmas, 2001.

During recovery from my Radial Shortening and Vascularized Bone Graft, I saw my doctor every three weeks. We actually began to get along very well, and I looked forward to seeing him. I had a newfound respect for surgeons. To me, this guy was a superhero. As far as I'm concerned, he's right up there with Joe Willie and Mickey Mantle, cause come game day, he's the one that gave me back the use of my hand. He's the one who allowed me to be useful, to feel like a man again.




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