Kienbock's Disease

[Parousia]

i've just been diagnosed with Kienbock's Disease (avascular necrosis) in my right wrist. Just wondering if anyone else here has it and what their experience has been with it. I have an appointment with an orthopaedic surgeon on Friday, so just want to try to make sure I ask the right questions. My GP said that surgery is controversial, but everything I've been able to find out about it, suggests that it's the only possible solution. I'm at stage 2 of the disease.

UPDATE: I saw a surgeon who is an expert in KD (as much as anyone is) last week to review 3D CT and bone scans I had just before Christmas. The news was pretty bad. I actually have Stage 3 KD, with multiple fractures in my lunate. He reckons the only option is a proximal row carpectomy, although he will try arthroscopy and revascularisation first. But that requires drilling into the lunate, and he believes when he does that it will just shatter because of the state it's in. If that happens he will immediately convert to a PRC.

The comparative CT scans also showed changes in my left wrist, so I have an MRI scheduled for next week. I have started experiencing pain in that wrist too now, which is a big worry .

 

[southernlady]

Parousia, I am sorry to hear this. I looked it up and yes, you are right, surgery seems to be the best and only option after stage 1. What I would ask is what about the operation is controversial and why? Esp since it seems that surgery is the only way suggested to fix it after stage 1.

 

[brooklyngirl]

Ouch! Any idea which surgical route you'll have to take or is that what you'll be said using with the orthopedic surgeon? I guess that would be my first question if you don't yet know. Seems there are 4 possibilities?

 

[more2adore]

I'm so sorry. That sounds really painful.

 

[Parousia]

Thanks for all your input .

Yes, it is very painful! I've had problems with my wrist on and off for a few years, but I assumed it was just RSI, and had chiropractic treatment for it. Didn't help for very long at a time, though (if at all). It was always worse after I had been using my iPad or PC more, hence my RSI assumption. But over the last few months it's got quite a bit worse (perhaps because I've become more mobile with the weight loss?), and I've started waking up with it pretty bad in the mornings already. That's what made my doctor decide to send me for an x-Ray, because if it was a muscle or tendon issue it should be less painful after a night's sleep.

Anyway, no idea why the doctor considers surgery controversial. I couldn't ask the right questions as I had no idea of what her diagnosis was going to be, so couldn't research it beforehand. I was actually convinced they wouldn't find anything on the x-Ray! I haven't been able to find anything that really supports what she said. In addition to saying it was controversial she said: "You don't want surgery. You don't want to end up making the pain worse!"

The only thing I could find that might be relevant is this paragraph from Wikipedia:
"Many Kienböck's patients are frustrated by the lack of consensus among hand surgeons about optimal treatments for Kienböck's. No matter what the disease's stage of progression, there is no one best treatment, and the decision is often based partially, or even mostly, on incidental factors such as the patient's pain tolerance, the patient's desire to return to active use of the hand (such as in manual occupations), and the surgeon's level of expertise with different treatments.[5]"

That's why I was hoping someone might have had experience with it and have some idea. Perhaps the non-operative route might be worth consideration if I was 80+ years old, but hey - not ready to give up on having "active use of my hand" just yet, lol. Oh well, I'll see what the orthopaedic surgeon has to say on Friday. Don't know which surgery he will favour (if any!) but it looks to me like the radial shortening procedure, possibly combined with revascularisation, has the best prognosis. Whether it will work in my case or not depends on my own hand/wrist architecture, I gather.

 

[JackieOnLine]

I don't know anything about it but I'm sorry to hear you have it. this is my advice for everything find others who also have it. I googled support for "Kienbock's Disease" which may not be the best phrase but there was a facebook group and some others.

big hugs, anyway!

 

[Parousia]

Thanks so much, Jackie . I will see what I can find.

 

[Parousia]

Just an update on my appointment with the orthopaedic surgeon: what he had to say was very discouraging. He wasn't certain of the diagnosis yet, but if it's Kienbock's Disease, he reckons the failure rate of surgery is about 80%, and even when it works, it doesn't seem to be a cure. It just slows down the progression of the disease. He said it is possible that it is arthritis, in which case there is no surgical treatment. It seems to be more a case of managing the pain, etc. He did seem to think that it would be a preferable diagnosis to have, though. Anyway, he has organised for me to have an MRI next Thursday, and I see him again on Friday to discuss the results. The MRI will tell him whether it's Kienbock's or arthritis, apparently. He didn't want to get into too much discussion about Kienbock's without being certain if that's what it is.

 

[Spiky Bugger]

Is he a specialist in hand surgery?

I used to (before we moved) go to an ortho practice where the wrist and hand guy was down the hall from the back surgeon, who was not the same as the back guy who didn't do the surgeries, and they sent you elsewhere to a knee guy...very, very specialized these days.

 

[brooklyngirl]

Is he a specialist in hand surgery?

I used to (before we moved) go to an ortho practice where the wrist and hand guy was down the hall from the back surgeon, who was not the same as the back guy who didn't do the surgeries, and they sent you elsewhere to a knee guy...very, very specialized these days.

I appreciate the specialization, unlike my old GP who couldn't explain to me how an A1C worked. Her response "That's a good question, I'm not sure." Clown.

 

[robs477]

Is he a specialist in hand surgery?

I used to (before we moved) go to an ortho practice where the wrist and hand guy was down the hall from the back surgeon, who was not the same as the back guy who didn't do the surgeries, and they sent you elsewhere to a knee guy...very, very specialized these days.

@Parousia, I really do wish you the best having to deal with that. Spiky is right though, they almost all totally specialize these days by the specific part, i.e., hand, knee, back, etc. Finding the best specific specialist may help. I wish you the best.

 

[DianaCox]

My shoulder guy doesn't do wrists or hands. He did a great job on my shoulder though - and Charles' knees. And this 61 year old says, I now prefer docs in their mid-40s. Just sayin' ... they know enough to know what they don't know, and are confident enough to admit when they don't know. And they still remember some of their science learnin'

 

[Spiky Bugger]

My shoulder guy doesn't do wrists or hands. He did a great job on my shoulder though - and Charles' knees. And this 61 year old says, I now prefer docs in their mid-40s. Just sayin' ... they know enough to know what they don't know, and are confident enough to admit when they don't know. And they still remember some of their science learnin'

There was a general surgeon, with his wife, in the waiting room of my big ortho place. He was telling me that ortho surgery is for young guys who could have been football players. He was all about digging in and dealing with organs, but said that ortho surgery on the big bones was just too physically taxing for a guy who was 5'10" (and he probably had a BMI around 25. )

 

[southernlady]

Yeah, my back surgeon (ortho) JUST does backs...when dh tried slicing his thumb off last Aug (2013), he went to a hand surgeon.

 

[Parousia]

Is he a specialist in hand surgery?

I used to (before we moved) go to an ortho practice where the wrist and hand guy was down the hall from the back surgeon, who was not the same as the back guy who didn't do the surgeries, and they sent you elsewhere to a knee guy...very, very specialized these days.

Yes, he is a hand surgeon. I had a "trigger" thumb four years ago, and I was sent to him to have it fixed as well.

He's the same age as i am, he tells me, which would put him in his late forties.