While I was home thinking about surgery and making plans, I did some research on my condition.
Kienbock's Disease was only discovered in 1910 by an Austrian Dr. Robert Kienbock. He was a radiologist who was a pioneer in x-ray technology. He thought, originally, that Kienbock's was a result of malnutrition and tears in the ligaments and blood vessels.
Kienbock's Disease has no known cause, even today. There are many conjectures over what could possibly be the cause, and the two most viable conclusions are: a pre-disposition or a direct physical trauma such as falling on your hand (his includes repeated physical traumas). Because the lunate is so small and in an awkward position, it is rather difficult to cause the bone to collapse or fracture so these are the most widely accepted causes of the disease. In fact, less than 0.05% of the population has, or will have this disease.
In my particular case, the likely cause was a predisposition for my radius to grow abnormally long, and because I had two accidents in a very short time period (one a football accident, one a car accident) this could have cause the trauma that fractured and collapsed the lunate. This is according to Dr. P. my specialist, and Dr. R.'s contact at Landstuhl's orthopedic clinic.
The progression of the disease has 5 stages I, II, III-A, III-B and IV. There are many definitions of each stage; no one has a universal set explanation. My stage has been identified as III-A. This is the stage where the lunate is dead, it has collapsed, but I have not yet developed arthritis from the bone disintegration/movement/upset. In my stage, there is dramatically limited motion and range in the hand and wrist.
Typically, Kienbock's develops in young persons. Most people are in their 20s when it is discovered, but the typical age range is 20-40. More often than not, Kienbock's Disease affects the dominant hand. There are rare cases where it affects both as well. Mostly, people who have Keinbock's are predominantly men.
Some people will have a positive or negative ulnar or radial difference (meaning the bone is longer or shorter than it should be). This causes the bones in the wrist and hand to be disrupted. So, Less than 1/2% of people have Kienbock's Disease, and I am an even smaller percentage who has a variable bone size in my arm. This makes my disease state somewhat unusual, but not uncommon in Kienbock's.
Most doctors have never heard of Kienbock's disease - even in orthopedics. Mostly, a specialist in hands will be the only ones aware of the disease. While taking physical therapy, I worked with 3 certified hand therapists. Two had heard of the disease, and only one had ever worked with a patient with Kienbock's before, just one person in their entire career had ever had the disease. Additionally, they all had to conduct extensive research on the under documented disease in order to know how to treat my condition.
Symptoms of Kienbock's Disease are wide and varied, and commonly mistaken for other conditions. A few of the most widely reported symptoms are:
wrist pain
wrist swelling
tenderness
intense stabbing/crushing/throbbing pain
pain and difficulty moving the wrist in any and all directions
inability to use hand normally
stiffness
broken or fractured bones
arthritis
bone movement
bone collapse
bone disintegration
clicking in wrist or hand with movement
chronic pain in middle finger, or between the middle and ring finger
weakness in wrist, hand, grip, movement
inability to sleep due to discomfort or pain
inability to do simple/sedentary actions
If you have questions directly related to Kienbock's Disease, please feel free to ask. I will answer to the best of my ability.
So it looks like you had surgery. Why did you need to have surgery and did the specialist remove the cysts? I just got diagnosed with Kienboch's disease. It's so rare and none of my family or friends have heard of it, well me neither.
ReplyDeleteTo Rhonda:
DeleteI had surgery due to the fact that I am in an advanced stage of the disease. I do not have cysts, Kienbock's does not have anything to do with cysts. I lost blood supply to the lunate bone and it began to fracture and start the process of disintegration. It is extremely painful, and debilitating. If I didn't have surgery, I could have ended up destroying what little use I have of my hand and it would have been permanent.
If you have any other questions, I am happy to answer them. I have been "surviving" this disease since 2001/2002. I am a well versed veteran.
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DeleteSo it looks like you had surgery. Why did you need to have surgery and did the specialist remove the cysts? I just got diagnosed with Kienboch's disease. It's so rare and none of my family or friends have heard of it, well me neither.
ReplyDeleteSo it looks like you had surgery. Why did you need to have surgery and did the specialist remove the cysts? I just got diagnosed with Kienboch's disease. It's so rare and none of my family or friends have heard of it, well me neither.
ReplyDeleteHow Thai Massage and Energy Lines Cured My Kienbock’s Disease
ReplyDeleteIn 2014 I was diagnosed with Kienbock’s disease. For more than a year I experienced excruciating pain and many visits with primary-care doctors, hand and 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. By mid March, I got a standard brace and limited use of my wrist. 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 mid-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 eight weeks of acupuncture and laser therapy and infrared heat. 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.
Hi Shana!
DeleteI'm wondering what stage of the disease you are in. Kienbock's is a very rare disease with few documented cases. The causes of the disease are unclear, but are thought to be due to traumatic injury to the hand/arm/wrist, or something that is pre-conditioned such as being born with it, or having bones that grow longer than they should.
While I can applaud your alternative therapy, I cannot say that this works for anyone with the disease. My condition is so severe that I have now had 4 surgeries, with at least a 5th to come in the near future. I am highly opposed to acupuncture because I am one of the rare people who respond negatively to it. I had a neurological issue back in 2001, and regularly saw an acupuncturist. I would swell, bleed, and pass out every time. For a lot of people it works, but I am not a good candidate for it.
If you do your research on Kienbock's disease, you'll notice that most people diagnosed with it are in the final stages of the disease, and that there is no hope for a 100% recovery. That is becuase Kienbock's is rarely caught in it's early stages. Doctors of orthopedics don't even have familiarity of the condition. I've seen hand therapists who never even heard the name in school or textbooks, and had to find ways to treat it. I am constantly finding that I have to educate every single person I encounter. Lucky for me, I did my research and found the best hand doctor in 3 states lives right in my city, and I see him for my disease.
Blood circulation is a huge problem for people with the disease, you are in fact correct on that. However, the causes are not found to be associated with blockages in the back or neck. Poor blood circulation, in general, is attributed to low blood pressure, heart and respiratory conditions, along with diabetes and other common issues. I am not, however, against a holistic approach on certain aspects of the disease. My German therapists used to use herbal wraps on my arm as an example.
But, just like with cancer, no two people are alike. It is a disease, and how it affects a person's body is different in every case. Some people may not need to have surgery, and may need to isolate their wrist for 3 months. Some people may get a fusion, while others try prosthetic implants (that have been proven not to work, but that is aside from the point.)
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ReplyDeleteHi there! My name is Molly, I am 22 years old have recently been diagnosed with kienbocks disease. After 8 months of pain I finally decided to go to a physical therapist thinking I had carpel tunnel.After a suggested x ray and mri I was diagnosed. Today I saw a wrist specialist who told me that there is two surgies that I can do and they will not ever get me back to 100% normal range of motion. The surgeries will help with pain for about 10-20 years and after that I will need to fuse my wrist. This was quite alot to take in, and it still is. The surgeron told me that I was in level 3b but did not suggest surgery. What I am wondering is if your wrist has improved at all from the surgeries? I have also heard of other surgeries that seen to helpful that are called proximal carpel surgery. I may have gotten the name wrong. Anywho I would love to hear how you are coping post the various surgies you've had. Thank you for support!
ReplyDeleteHi Molly!
DeleteNo, my wrist is beyond repair. While my pain has diminishes somewhat, it's a constant struggle every day. Your hopes should really be set on improved mobility, and a decrease in the amount of pain you have.
Proximal carpal surgery isn't highly recommended by my specialist, unless you have a severely fractured lunate. As young as you are, your best options are to figure out if you have a ulnar or radial positive difference, and to correct those surgically at the moment. Revascularization might also help, but won't necessarily improve anything other than the disintegration of your bone. I'm 33 right now, and he tells me you develop severely acute arthritis fairly quickly - which I don't want. I already have enough degradation on the top of my ulna from rubbing on the carpal row there.
But, of course, each situation is different. Do some research in the area you live for the best orthopaedic hand surgeons, and send them letters with a summary of your case. You might get great expert advice from a doctor who has seen it firsthand (haha, pun!).
It's lovely to meet you!
I have just turned 13 and have had Kienbock's disease for over a year now. The GP never diagnosed it and we only saw a specialist later, and I am in the last stage. It really hurts and clicks all the time. In school sometimes I get extra time to write things but other say I am cheating and sometimes laugh.
ReplyDeleteSofia,
DeleteMy heart aches for you. I've had the disease since I was about 18, and it took almost 9 years to diagnose. Don't ever give up hope. I'm still here, 15 years later.
As for your schoolmates, as awful as they may act, they don't know. At the end of the day, tell yourself that. They just don't know. People can be cruel, and you are no better or worse than anyone else. Always remember that. You cannot help something like this. People like that are not friend material so surround yourself with supportive family and friends. If you ever need to talk, you just let me know. I'm a friend in common!
I'm curious about your neurological issue you mentioned. I was just told by my primary care doctor that I may have keen box disease based on an x-ray they did a few days ago. I'm going tomorrow to have an MRI done and we'll meet with and hand specialist soon. I was also diagnosed with pseudo tumor cerebro syndrome about 2 years ago which is also a rare disease where my brain thinks it has a tumor even though it doesn't so my brain produces more fluid than it can drain. Now I take medicine for it everyday. So I wonder if us having neurological problems has anything to do with the keinbocks disease....
ReplyDeleteKienbock's disease is a condition where your bone dies due to lack of blood supply. It occurs due to a pre-disposition of bone growth, or an injury. It is not neurological.
Deletehello my name is Caleb, i am 20, live in gig harbor washington and after almost a year of growing wrist pain i pushed for an MRI and was diagnost with Kienbocks. I am now pursuing treatment. I lead a very active life and need the use of my wrist back, even if it is limited. my lunate in fractured and partially collapsed with plenty of pain and limited movement. I am currently with a hand/wrist surgeon in tacoma. while he does seem to have a grasp on the condition I would be interested in seeing a doctor that has experience with kienbocks. sounds like you live in Seattle, can you recommend me to your specialist? i would greatly appreciate it. I'll be checking back daily.
ReplyDeleteCaleb - can you e-mail me? I will give you what information I can. doniellcushman@gmail.com
DeleteI'm in Portland Oregon and was diagnosed a few weeks ago. My hand doctor referred me to a colleague of his to get more insight on it. My appointment is in a couple days. Did you end up seeing a specialist there in WA?
DeleteMy email is charline.bay@gmail.com
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ReplyDeleteHello, I am 38 years old and was diagnosed with Kienbock's Disease and subsequently had a radial shortening fifteen years ago while serving in the Air Force. The metal was never removed because I was medically discharged because of the issue. The pain and stiffness has only gotten worse since. I have seen a few surgeons in the last 10 years who mostly dismissed me as the "guy with pain in his wrist". The x-rays seem fine and they can't do an MRI because of the metal, so it's a mystery to them. One surgeon suggested the metal be removed to see if that's what is causing the pain. The pain, stiffness and now arthritis seems to be getting worse as I get older. Thanks to the Affordable Healthcare Act this pre-existing condition is no longer a barrier to seeing a specialist, but I have never found one who actually had experience with this issue. I am wondering if anyone else has had the metal removed and had positive results or if I should just accept the fact I'll have a stiff and painful hand and wrist the rest of my life.
ReplyDeleteI was reading your post doing some research for myself and noted there are no comments yet. Have you tried Facebook? there is a Facebook group that lots of people post every day, someone may have an answer for you. Good luck!
ReplyDeleteHello Donniel! How are you today? I have the disease and I am searching my surgery options...Did you do another surgery apart from the radial shortening? What stage were you in when you did this surgery, had the bone collapsed, was it fragmented? How Is the pain going today? The movement, the grip? I read something about a regrowth? How about that? Thank you so much, and I wish all the best for you, even if we don't know each other, we do share the same disease and that connects us. So, be strong, have courage and thank you for making this blog. Love, Helen.
ReplyDelete(PS. Sorry for messing up with my replies, I have quite a headache from overthinking about my surgeries...)
Hello Kim Swamstrom!
ReplyDeleteOut of nowhere I started dealing with terrible wrist pain 24 hrs a day. I couldn’t do anything, doing the smalles things would make me cry. I went to my orthopedic doctor and he sent me to get and MRI and they said I had a cyst and basically synovitis. For me to go to therapy and that was that! I went to pain management and had several cortisone injections which helped a little. Last year my left wrist started to hurt the same exact way. The excruciating pain, swelling, crackling and popping and I went back to my orthopedic doctor and asked for another MRI and he said no, that the last one was good enough. So I went back to my Pain Management Dr and he was nice enough to believe in me and he placed a referral to see if anything had changed in my right wrist. My results came back stating that I have a mild negative ulnar variance. I haven’t been able to make an appointment to see my orthopedic doctor but I’ve googled what it means and I wonder if my left hand is going to have the same result since I have felt the same pain on my right wrist. I’ve read it’s not common and I hope it’s not.... but I’m keeping my fingers crossed.
I’ll await for my doctor to read my results, I just worry that three years have passed since my pain began and they just now figured out what it was.
Anyways, My heart aches for your baby girl as I can only imagine her pain. My prayers are with her and your family each and with everyone on this blog! Good luck to everyone ❤️