Heather Sanders

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January 2014



Kienböck’s – A rare disease; naturally.

Written by , Posted in Everything Else, Kids and Parenting, Kienböck’s Disease

Kienbock's - A rare disease, naturally.

Photo Source: ZANYBAH

I’m beginning to think our family has some magnetic draw for random bone marrow viral infections and rare bone diseases; in fact, I’m thinking of designing a t-shirt and selling it to pay the medical bills.

All joking aside (for now), following an MRI last week, we learned Emelie has what is called Kienböck’s Disease; so, next week, at the referral of our local orthopaedic surgeon, we will see Dr. Rosen, who specializes in surgery of the hand and upper extremity.

For those who are unfamiliar with Kienböck’s Disease (as in…nearly everyone), it is a rare, debilitating disease process that can, without treatment (and sometimes with treatment), lead to chronic pain and dysfunction (though we are praying against that–and believing there will be a way for the surgeon to provide full relief).

According to the National Organization for Rare Disorders (NORD), Kienböck’s Disease affects fewer than 200,000 people in the U.S. population.

To put the possibility of getting Kienböck’s Disease into perspective, and to prove to myself that Algebra is a relevant skill used beyond the high school classroom, I’ve pulled together a simple equation (double-checked by the Math guru, Bon Crowder, herself.) to show the rarity of Kienböck’s.

I should also note that the first time I published this I WAS WRONG and had to be edited TWICE; see, Algebra is torture.

Algebra and Kienbock's Disease - Corrected twice

Subsequently, this also provides support for why Emelie should probably start playing the lottery.

Emelie’s symptoms began much like what you’d expect of a sprained wrist, but over time the pain increased, along with swelling and wrist stiffness. Her range of motion is limited, she cannot grip anything with that hand, nor press her hand up or down; in addition, the area directly over the lunate bone is tender to the touch.

Also known as avascular necrosis or osteonecrosis of the lunate, Kienböck’s Disease occurs when the lunate bone – one of the eight small carpal bones in the wrist – becomes damaged due to an interruption of blood supply.

MRI - Emelie's lunate.

Basically, Emelie’s lunate bone in her left wrist is dying, and parts of it already appear to be dead, due to disruption of blood flow.

After viewing her MRI, it was obvious that Emelie’s ulna and radius bones differ in length. This places extra pressure on the lunate when her wrist moves; this, over a long period of time, likely (???) lead to the Kienböck’s Disease.

Treatment varies widely from person to person and is mostly dependent on which of the four stages the patient is in when diagnosed. Based on the feedback from the first surgeon and the fact that her lunate has not collapsed or fragmented, we believe Emelie is in Stage 2.

So, there you have it–well, YOU don’t have it, Emelie has it, but if you do have it, feel free to tell us about it (but only if you can decipher this sentence).

In the meantime, please keep Emelie and Dr. Rosen in your prayers. From what we’ve read, there appears to be a lack of consensus for the optimal treatment of Kienböck’s, and obviously, we want Emelie to have full use of her hand and relief from the pain she’s endured the last several months.

Emelie - Hyundai Elantra Hatchback

Also? She bought a 2013 Hyundai Elantra and loves it. If you’re thinking that bit of information is completely irrelevant to the post at hand, you are right; however, it puts a smile on all our faces–which is worth more than staying on topic.

Heather Sanders


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