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Jul 21, 2011

Kienbock's Disease

I think I’ve told you before that my amazingly cool autistic son, the Dog Walker is trying to earn ALL the Merit Badges. It’s been a crazy ride for the last 6 years. We are down to only 7 left and he will pass off one more this afternoon. One of the most difficult ones for him has been Water Sports. We are not boat people. We have always enjoyed our fishing from the shore on nice stable ground. The kids have been boating several times with the neighbors and they all seem to love it! We have one particular neighbor who has been kind enough to take the kids out several times. He lets them go tubing and he has tried his best to teach the Dog Walker to water ski. I’m sure you’ve noticed that the Dog Walker is a big kid. If he had learned to use the skis when he was 8, he probably wouldn’t have any trouble getting up on them…but trying to learn when you are 16 and 300 pounds is much more difficult.

To make things even worse, the Dog Walker suffers from something called Kienbock’s Disease. That means that one of the bones in his lower arm is longer than it should be, effectively choking off and killing one of the smaller bones in his wrist. We discovered this disorder when he was 16. He was just finishing up his last and most successful (by a long shot) season of pee-wee football. He had been playing Center and without any specific injury, his wrist started to hurt. We figured once football was over, that his wrist would return to normal, but it didn’t.

He complained of random pain all through November and December. In January, his church friends joined a basketball team and invited him to play. He agreed, but each week the pain got progressively worse. By the end of the basketball season, he could hardly dribble the ball. It was time to see a doctor…then a specialist. The diagnosis was made and after several weeks (so he could finish the Scuba Diving badge), they put him in a cast. Nothing was broken, but the cast would give it a couple of months to rest. Then hopefully the swelling would go down and we could avoid surgery that might not work. If the tiny bone collapsed, his wrists would have to be permanently fused. The problem with the surgery was that the doctor would have to go in and shorten that bone which may or may not solve the problem. And if he made a tiny mistake, the surgery could also force him to permanently fuse the wrist. None of the recommended procedures were guaranteed.

Picture Credit
The Dog Walker was born with the extra length in his bone and it was likely that the pushups from football made the problem flare up. The doctor recommended no more football. We were crushed! We all had high hopes of him playing on our amazing high school team. Instead he joined the Marching Band (but that’s a subject for a different post). He wore the cast for six weeks and then a partial cast for six more. When he finally took the cast off, his pain had mostly disappeared. Not that the disorder is gone. He may never be able to do pushups again and he has to be careful when he works out in the gym, but so far, so good.

Just yesterday he passed off one of the Merit Badges that we were particularly worried about, Climbing. They managed it in a climbing gym with the Gym Rat doing the belaying. Now the Dog Walker only has three physically challenging ones left, Backpacking, Water Sports, and Cycling. For Cycling, he is taking advantage of an inaugural program at the Miller Motorsports Park here in Utah. They are allowing cyclists who raise at least $150.00 for their charities to ride as many miles as they want on their 3-mile racetrack that is used for car races. The Dog Walker is so excited! The final requirement for the Cycling badge is a 50-miler! We are excited because he will be able to ride in a safe environment with many people around to act as his support team (since none of us are really capable of riding 50 miles with him).

If you would like to help him reach his goal of $150.00 before the race next Saturday, please click on this link. He is still some short, but hopeful. Any little amount will help. Pretend you can’t see my last name on his page…remember, we are still trying to be just a tiny bit incognito. Thanks!

3 comments:

  1. I am so proud of him for wanting to get all of his Merit Badges despite what he's gone through!! :) YAY! When is the race? I would like to donate some, but I'll have to wait until next week.

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  2. hey i got kienbock's too! i'm now learning to do hard stuff with my left. well i cant play basketball again i know but at least i could try to do other sports that only need one hand :)

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  3. Hi, I know you posted this awhile ago but I would like to share my story of Kienbock's disease and perhaps this will shed a different light.

    In 2014 I was diagnosed with Kienbock’s disease. For a year I experienced excruciating pain and many visits with wrist specialists. I had several X-rays and MRIs, spent hundreds of hours researching and thousands of dollars on care to find out how to cure this condition. My wrist specialist told me with total certainty that the only option was surgery.

    My right wrist started hurting in January. I got a standard brace and I couldn’t touch my wrist, pick up a toothbrush, or stick my right hand in my pocket. Finally in July I decided to see a hand-and-wrist specialist. He moved and pinched, took an X-ray and said, “There is nothing wrong.” He gave me a cortisone shot and I was to return in four weeks.

    In August I returned only to find out that he still couldn’t diagnose anything; an MRI was the next step. In September we found the answer: Kienbock’s disease. I went back to the doctor and he recommended casting it for six weeks with zero use. A friend recommended acupuncture to bring the blood supply back to the lunate. Eventually, my doctor took the cast off and put a brace on to stabilize it so that I could get acupuncture and laser therapy. In the end there was no cure, no improvement. I decided to see a second hand-and-wrist specialist. He conducted more X-rays and tests and once again said the only cure was to cast it another six weeks and if there were no improvement, I would have to have surgery!

    December approached. By this point a year had passed and my wrist was useless. Another six weeks in a cast, another MRI, only to discover zero improvement. Three bones began to die and numerous little cysts covered the inside of my right wrist. Surgery was the only answer according to this specialist. He scheduled it for a week later, which I then said was impossible since I was to travel to Thailand for three weeks. The doctor prescribed epilepsy medicine to endure the pain and I decided to take the trip and continue with surgery two days after my return.

    While in Thailand, I decided to get Thai massages. During one of the massages, a Thai woman asked me what was wrong with my wrist. I told her I have terrible pain and I can’t move it. She informed me that my wrist was actually not the source of the pain. Instead, she said my neck and left shoulder had blockages that were causing my wrist pain. If I would allow her to remove the brace and have access to my wrist, she could help relieve the pain. I had gone through one year of agony, tried pretty much everything and I thought “Why not? Go for it. It can’t get worse than it is.” Sure enough within 30 minutes of methodically and intentionally pushing here and there opening up channels and blockages in my neck, shoulder hand and wrist, she got my wrist to move about 45 degrees. A huge release occurred. I could feel life returning to my hand.
    By the time I left Thailand, I had 26 hours of Thai massage and the pain in my wrist decreased tremendously and I cancelled my surgery.

    I spent hundreds of hours researching Thai massage and the Sin energy lines and it all made sense. My bones were dying due to lack of blood supply. The masseuses who helped heal my wrist used a technique to flush the blood and release blockages. They pushed on points that were excruciating painful and when then they released the pressure, this “flush” occurred. I actually felt the blood rush to the tips of my fingers. I experienced for the first time a “life force” back in my hand again. The doctors were going to splice arteries in my wrist to bring more blood supply to the lunate. But the fact is, I didn’t even have enough blood circulation going to my wrist in the first place, so the surgery would have been pointless.

    I highly suggest to anyone with Kiebock’s disease, to research Thai massage and the Sin energy lines. This artful and scientific treatment has changed my life and I hope it works for you too.

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