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keinbocks disease

i have been having extreme pain in wrist and hand went to doctor today he said i have keinbocks ,  avascular necrosis of lunate with secondary collapse and fragmentation he suggested surgery but isn't sure he can save the bone  what do they do if this surgery doesn't work he didn't want to go into details for that until we try saving the bone i just want to know what i'm in for any answers will be appreciated
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Avatar universal
Go to the website i posted earlier...There is a guy named Keith in there and this man can tell you everything and answer all those questions...But with the exp Ive had and read on the group/....I would not wait...This disease can progress fast or slow...Most people are waiting for surgery 6 wweeks and progress b4 their surgery day...
I have heard alot of people in the group talkabout having the fusion and they are totally satisfied with it and they would not change a thing!!! Pain is gone and the only thing is you dont have ROM....but you learn to live with that and it only limits you some.Please go to the group!! They have helped me soooooooooooo many times!!! Its a great place to vent and place advise as well as ask for advice!!!
Angie
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Avatar universal
A little about me...
I was diagnosed with bilateral KD in Oct 2007.
I had a RS in Nov 2007 right /w/cyst removal from top of wrist
Another RS in Dec 2007 Left./w/cyst removal from top of wrist
March 2008-Another Cyst removed from left wrist/pisiform sight
July 2008 Bowers Hemiresection Aristoplasty done on Left/for Ulnar sided pain.

But prior to the KD diagnosed I had in 2000 2 carpal tunnel surgeries
and a Pisiform excesion done in 2004


Anyone in here go to UVA medical in Charlottesville VA?
I see Dr Gregory Degnan there....
This disease is very rare....only 1 in 250,000 people have it bilateral....
It took years for me to get a diagnosis....I was lucky that the Dr i finally found actually introdcued it to the text books at UVA....Dr's in this area have never heard of it....and or if they hear the name they say go so Dr Degnan...So....
Anyone here in VA or WV?
Thanks,
Angie
Oh also there is a great group on yahoo called Keinbocks....
Go there!! ITS SOOOOO FULL OF INFO!!! IT HAS HELPED ME IN A # OF WAYS!!!

http://health.groups.yahoo.com/group/kienbock/
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Avatar universal
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
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Avatar universal
Hi,
I am not sure what thoughts are of your treating doctor, because it appears to be more confusing. I am not sure what he wants to say by saying that this surgery may not be able to save bone.
Yes you are right in saying that surgery has to be done at earlier stage than late.
When I say 2-3 different types of analgesics I want to mention that you should be started on different analgesics at the same time like you can take combination of Acetaminophen with Ibuprofen with Tramadolol.
The plan of analgesics has to be charted by pain management specialist.
Hope this helps.
I would like to know more about the surgeon's intervention.
Bye.
Helpful - 0
Avatar universal
doctor said i also have secondary collapse and fragmentation if this is only stage 1 or 2 why is he waiting 6 more weeks to operate also what do you mean by 2-3 different class of analgesics and what are the names of the analgesics he had also mentioned this surgery may not be able to save bone shouldn't he be doing surgery now if this is earlier stage
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Avatar universal
Hi,
I would like to mention about the stages.
The classification system used earlier was by Stahl which was later modified by Lichtman et al. which is based on the radiographic appearance of the lunate:
Stage 1: Radiographically normal lunate or with small fracture lines
Stage 2: Sclerosis of the lunate
Stage 3a: Collapse of the lunate
Stage 3b: Lunate collapse with proximal migration of the capitate and fixed rotation of the scaphoid
Stage 4: Generalized wrist arthrosis.
If it is stage 4 disease the treatment option would probably be wrist fusion.
I think you might be having stage1 or stage 2 diseases as they are doing right radial shortening osteotomy as the surgery is aimed at lunate load reduction for improvement of lunate perfusion and load reduction may be achieved by joint-leveling procedures.
Your pain medications plan should be charted out by a pain management specialist and would include 2-3 different class of analgesics.
Kienbocks disease is AVN of the lunate of the wrist with collapse of the bone and arthritis in the advanced stage so it would not be present in other bones of the body.
Hope this helps you.
Bye.
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Avatar universal
i am scheduled for a right radial shortening osteotomy on april 7th the doctor didn't say what stage just that the bone should look like a peanut sized and mine is like a shriveled raisin whatever that means i'm guessing since he is in no rush to do surgery i am probably in the last stage i am in quite a bit of pain and hoping he will prescribe something to help me until surgery any suggestions on what pain medication might help me also does this mean i will have this in other bones in my body thank you
Helpful - 0
Avatar universal
Hi,
No, it's not related. Your body pain due to surgeries and your bone disease, Kienbocks disease is not related. Your bone disease is due to vascular problem, causing decrease blood supply and further necrosis of bone.
If it is stage 3 disease then a proximal row carpectomy may provide symptomatic relief while maintaining ROM and if it is stage 4 disease then wrist fusion is the treatment of choice.
Did the doctor say anything about physical therapy?
Is the surgery planned? If yes, when?
Keep me posted.
Bye.
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Avatar universal
from moezoe17   i had a mri and xrays went to orthopedic doctor yesterday he said it is pretty advanced and not sure if he can save bone but we are going to try the surgery to shorten the bone and put a metal rod or something like that i am confused also does this mean it could happen to other bones  what causes this i am 41  in 2005 had sepis was in hosp for 2 months in coma had bowel resection in 2007 had total abdominal hysterectomy with both ovaries cervix everthing taken out i am not on hormone replacement also at same time had appendectomy and large hernia repair with mesh, inscision opened and got infected so 3 months later had debriedment then on wound vac for 4 months i still have partial open surgical wound on abdomin  I am in constant total body pain all over could all this be related any help is appreciated thanks
Helpful - 0
Avatar universal
Hi,
How are you feeling?
Kienbocks disease is AVN of the lunate of the wrist with collapse of the bone and arthritis in the advanced stage.
What stage of disease have they diagnosed you with?
It is most common in young adults.  
What investigations have been done? What is the result of imaging studies?
The optimal treatment for patients with Kienbocks disease is debated, but the following generally are accepted:
The wrist should be splinted and the patient referred to a hand specialist for additional treatment.
Untreated, the condition may follow a course of relentless radiologic progression, but the clinical course is variable.
Most practitioners favor some surgical intervention in the young, active patient with early-stage disease.
Radial shortening or ulnar lengthening may be considered if the ulna is short.
Proximal row carpectomy, limited fusion, arthroplasty, or another reconstructive procedure may be considered for advanced cases.
Keep me posted if you have any queries.
Bye.
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