What to Expect When You Are Diagnosed With Kienbock's Disease



The first thing most docs do to a newly diagnosed wrist (seemingly regardless of stage) is to immobilize it for a while to see if it will heal on its own. For kids, this sometimes works, but it rarely does any good for adults.

(It seems as though more docs are moving away from this, as it is so often unsuccessful, especially in latter stages. If it is an option you'd like to try, ask your doctor about it. He may prefer to schedule surgery quickly rather than waiting several weeks, which a trial of immobilization takes. If so, don't be offended or think that he's just in a hurry to cut you open. He likely has concerns about rapid progression.)

When the cast comes off, you'll have many options for surgical treatment. You'll need to learn about them so that you can actively participate in your care. Most of the surgeries have about an 80% success rate, though some may go as low as 50%, which means there's at least a 20% chance that you may need another surgery in the future. I'd say to plan on a 4-month recovery. If yours is quicker, consider it a gift.

Unfortunately, there are very few non-surgical options. Sometimes a cortisone shot into the wrist can provide some temporary relief. The shot itself can be painful, but when it works, it may work for up to a few months. For those of us whose pain is generally manageable, we will wear a brace on occasion when we've overdone it. Ice can be one of our best friends. Tylenol, Advil, and Aleve can help, though sometimes prescription meds are called for.

Without surgical treatment, you're looking at a progressive condition that will, on its own schedule, worsen. The bones may collapse and migrate. Eventually you will begin to lose your range of motion and strength. This is not a death sentence; it's more like a very painful inconvenience.

Even with treatment, you may never be exactly the same. "Success" is gauged by pain relief, not the ability to operate a jackhammer or play the accordion. It is a sad fact that some Kienbock's patients will need to seek new careers or hobbies even after they have received the best care available. You may never be able to drive a car with standard transmission again.

With or without surgical intervention, arthritis is quite likely to develop in the affected joint. Stage IV (Lichtman) is defined as stage III plus degenerative changes in the carpals. Those degenerative changes are generally taken to mean "arthritis," indicating that arthritis is the natural progression of the disease process. However, even earlier intervention does not guarantee that one will avoid the arthritic changes.

The decision to go ahead with, or postpone, surgical treatment, if it's called for, must be made by a fully informed patient with the cooperation of the doctor. Some, though not many, have been able to function well for many years without surgical treatment. Postponing surgery allows the wrist to degenerate and eventually excludes treatments that are appropriate for earlier stages, possibly resulting in the permanent loss of strength or movement.

An excellent place to begin your search for a qualified doctor is The American Society for Surgery of the Hand.

Read Questions for your Doctor. Take a clean copy of the printer-friendly version with you each time you visit the doctor. Make copious notes, date the pages, and keep them for reference.

Part of the aftermath of this condition and diagnosis can include some depression. As we lose ability or have chronic pain, we lose our ability to cope. If you begin to see signs of depression in yourself, don't hesitate to seek therapy or psychiatric help. It is a legitimate need no less than the need for pain meds.

Try to avoid putting yourself into a situation in which you might fall. Falling is strictly contra-indicated. When we fall, we tend to land on our hands or arms, which could have deleterious results. The same goes for activities that are strenuous to the hand or wrist such as bowling and even fishing. Don't do it.

Also, be open with your family and friends. If you need help with that jar of pickles, ask for it. Do Not hesitate to admit that you can't do something. Don't pick up things that are too heavy for you. Don't use your favorite coffee cup if you're having a bad wrist day; chances are good that you'll drop it.

And when you do drop that cup of coffee (it's a common theme among us), let your entourage know whether you would rather they act as if nothing has happened or clean it up for you so you don't have to face it. :)

Look into getting a few accessories for the computer. As you do searches for information, join the Yahoo! Support Group, and make new friends, there are a few things that will give you an easier go of it, like a microphone for chatting and a track ball instead of a mouse. Consider configuring your mouse to work with your non-affected hand. Voice recognition software is also available, which turns spoken words into text.

Check out Active Forever for a few products like the Tab Grabber for soda cans, elastic coil shoe laces, NorthCoast Rheumatic's Black Lite Touch Pen, the Maddak Un-Skru Jar Opener, lap trays, and the Krups one-hand Open Master can opener.

When a stranger asks what's wrong with your wrists, you are not obligated to tell the truth. Many will assume it's Carpal Tunnel Syndrome. No harm is done in letting them believe that. Most likely, they are making conversation and not genuinely interested.

If you feel guilty about the deception, you can simply say, "It's sort of like Carpal Tunnel Syndrome but different," or "I broke my wrist years ago and it never healed right." Either of those has enough basis in fact to be truthful without the full explanation of the disease process. (Even though it's called Kienbock's Disease, it is actually a condition or syndrome.)

If it's your personality, when people ask if you have Carpal Tunnel Syndrome, you can always respond "I wish! That's a piece of cake compared to this."

If people show genuine interest, it may be because they or their loved one has wrist problems. If you feel like that may be the impetus for the questions, by all means, explain what you can. Your story may become a valuable turning point for them, or they might steer you in a new direction.




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