Kienbock's Disease ? anyone?

[RuthiePee]

I live in the UK. I have been having wrsit and hand pain for 7 months and have lost movement in my right (dominant) wrist. I've had blood tests for arthritis and a normal x ray (waited approx 6 weeks for results from those) and had 6 weeks of physiotherapy for suspected torn extensor tendon, with no improvement or maybe slight improvement in swelling the physio referred me back to my GP for possiblity of Kienbock's Disease as now when I put my hands in "prayer" position and move them away from each other, the fingers on my right hand spring forwards, I simply can't hold them straight.  I can't flex my fingers upwards with my palm flat and I can't flex my wrist upwards/backwards at all. The pain can be very intense, but mainly a dull ache all day. I'm very aware of my limitations so try not to do any movements that would possibly casue pain.
I am so worried about this, My occupation involves alot of intricate hand sewing which I have been unable to do, I have been refferred to a plastic surgeon at the hospital, my first appointment is on 27th Aug. What should I expect? What tests will they do to confirm diagnosis? I have read about stages of progression of disease (if it is Kienbock's) how fast do these stages occur - I haven't had a splint or cast or anything and am using my hand as normally as is possible- is this a bad thing? Does the disease advance quickly, as I have had a normal x ray about 2-3 months ago.
Thanks, Ruth

[Shraddha24]

Dear Vinno,

I am 32 yr female having 2.5 yr old kid. I have been diagnosed with Keinbock's in both of my wrist in light of negative ulnar variance. Left wrist is stage III and right is in early stage.
Can you please share your experience with me. Hand specialist is telling me to undergo surgery in both wrists as early as possible and MD is telling to leave it and action will be taken if condition worsen. I am in dilema, what should I do?
Please guide me by sharing anything you know. what if I leave it untreated or what if surgery is dne?

Regards,

[Vinno]

I'm  a musician, and play all forms of stringed instrumnets, which require my left hand, I have had Kienbock's disease in my left wrist for a year and a half, seen specialist, been to alot of physio, done what feels like a million exercises, and treatments, most told me to keep on with it. It has worsened. Writing and playing music is my entire life, i am 23 years old, and live in South Africa. Any answers, anything, please help.
Vincent Swanepoel
***@****

[lotteland]

My fateher has just been diagnosed with kienbock,s after an x.ray.
The problem is it is in his foot and there is no information on this anywhere. He is struggling to walk its so painful and i can,t even find a private specialist who knows what theyre talking about.
I tried ringing nhs direct but they could shed no light on the disease, so any help or advice you can give me would be much appreciated thanks
charlotte

[RuthiePee]

I went for my appointment about my hand yesterday.
I had about 10 x-rays comparing both wrists and the right looks normal, which is great.
It doesn't rule out the Kienbock's Disease completelybut the consultant was quite hopeful and said she thinks I may have Radial Nerve Palsy
which is basically the nerve that supplies your wrist and fingers from your spine and down your arm and there might be something blocking it's path.
I've got to have an EMG test on my fingers to see if any nerves are affected
then I'll have a scan to see what the swelling on my wrist is, and that will (hopefully) rule out Kienbock's disease because it will show blood flow to the bones,
and as you know with Kienbock's the supply to the lunate bone isn't there.
I'm just relieved it's going to be sorted (hopefully soon).

[RuthiePee]

the website should say  ' kienbock ' in the middle.

Ruth x

[RuthiePee]

Thank you for your reply. It really helped to hear your story and experiences. It seems quite an uncommon ailment doesn't it?  I really don't want to look it up on the internet further until I have been to my appointment on Wednesday....as it really scares me. Especially the treatment "options" which don't really appear to be much like "options"... I really wanted to know how they actually diagnose it and a simple xray sounds good to me! :)
I'm 32 years old, mine is like yours, my dominant wrist and I have a young family to care for. (My son is at the crawling stage and even to change his nappy/diaper is now incredibly difficult, especially as he likes to roll onto his front when I'm doing so, so I'm struggling to hold him still with my hand the way it is now - I can't imagine what it would be like if they say I need an operation (gosh, the words wrist fusion sound terrible) or even a simple splint or cast would make things impossible!). I also have arm pain upwards from my elbow to my shoulder, like someone has thumped it sometimes almost dull aches like it is bruised or similar, I also have a sharp pain occasionally in between my shoulder blades, which I'm not sure is related.
I can't help you really with your questions as I don't know much about it, let's just say I'm still hoping my case is something else!
I did come across this website www.****.com which you may have already found, and it's not a medical journal with all the scary jargon which alot of the sites I found when I did look it up were, maybe there might be some information there that could answer your questions.

I'll add to the thread when I have been to my appointment in a few days time.

Thanks again :)

Ruth x

[EKUSue]

I was just diagnosed with Keinbock's disease after seeing a hand specialist and having a simple xray. The dead bone shows bright white on the xray indicating that it has died. Apparently the pain is from the breakup of the dead bone.

Here is my saga and comments/questions that I have posed on this forum:
I have been diagnosed with Keinbock's disease by a hand specialist and followed it with a second opinion by another hand specialist who concurred. I am a 60 year old WF in good enough health (meaning I'm a little overweight, active, and on no medications).

I sustained a bad thumb spring about 3 years ago and my wrist symptoms appeared about 2 years later. So, in July 2007 I noticed pain and swelling of the wrist after a day of gardening. I did the customary interventions of ice, antiinflamatories, and physical therapy before being diagnosed with Keinbock's in December 2008.

I am right hand dominant and it is my right hand that is effected. I am a college professor and talk and type for a living--to date my typing has not been overly effected. I am mainly treating it with a wrist splint and occasional tylenol. I wear the wrist splint 90% of the time including at night. I would say that I have a constant low level of manageable pain, and it seems to effect my entire arm/shoulder area (probably because I had some arm/shoulder pain before this diagnosis and it made it worse because of the limitations of the use of my hand).

The first hand specialist xrayed my hand and showed me the lunate bone which appeared bright white on the xray indicating that the bone had died. The second opinion said that pain usually occurs about 2 years after the bone dies and is associated when the bone actually begins to break up. I assume this was what I experienced in July 2007.

Both hand surgeons stressed "no cause, no cure". Althought instinctively I feel like it is related to several factors: a) I have small wrists; b) I like to do alot of manual labor; c) I sustained a bad thumb spring 3 years ago. Both surgeons said there were several surgeries but the general sense was that a wrist fusion would probably be the best solution.

Now to the questions:
1. What will happen if I don't do anything? Will it just keep getting worse and worse and eventually the pain will force me to do something? Is waiting bad and will it make it worse to wait by causing other damage in other parts of my hand?

2. What is the worst common thing that can go wrong with a wrist fusion surgery?

Any thoughts you have would be appreciated.
Sue Strong