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DC just starting in right hand
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05/05/2014 20:32
econn 
05/05/2014 20:32
econn 
DC just starting in right hand

Hello. I'm new to this forum so please bear with me. I'm a 70 YO male, I've had DC in my left hand (only) now for about 30 years but it has progressed slowly over the years and hasn't kept me from doing things. I worked as a maintenance tech on big automated assembly lines for years but never had it interfere with my job. Now that I am retired I have thought about having surgery to correct it as it seems like my two fingers are curling more lately. Now I have recently noticed it is now starting on my right hand also. There are two small thick bumps developing and it is more uncomfortable than when my left hand was affected, probably because I do most everything with my right hand. I read somewhere years ago that drs wouldn't operate on DS until it reached a certain stage, because it would continue to grow on spite of surgical intervention. I'd like to take care of it while it's still small, would seem like less invasive surgery to fix it now. I've also seen some of the other injection "fixes" but haven't read much about long term affects. Any input? Is it too small to deal with now? Any personal experiences with injections?

Thanks

05/06/2014 06:50
spanishbuddha 

Administrator

05/06/2014 06:50
spanishbuddha 

Administrator

Re: DC just starting in right hand

Welcome econn

For slight contracture the treatment options are indeed the collagenase injections (Xiaflex) or a minimally invasive procedure called Needle Aponeurotomy.

The injections are still relatively new, only a few years in practice now, don't suit all conditions, and there is a lot of experience in the forum from users, some with pictures, both good and bad. It seems to be quite expensive, especially in the US.

NA is more well established although from Europe, and many people use that as a sort of hand maintenance every 2 or 3 years once they have found an experienced practitioner.

Surgery has been the gold standard for more pronounced contracture, but the results are mixed. You should plan a recovery period of many months, although for some it is less.

Theres is always the chance of contracture recurring, and some of these interventions, seem to have a history of provoking a flare up in the condition so the result ends up worse! This is hearsay perhaps, but read it for yourself on here. There are many different factors and experiences, and only a hand doctor can really advise you. Have a read on the forum about people's experience. There is a research paper that recommends for people of your age with slowly developing contracture starting with NA.

Best wishes

SB

05/08/2014 03:42
littlepeaks 
05/08/2014 03:42
littlepeaks 
Re: DC just starting in right hand

Hi econn--

Sorry about your hand problems. I had Xiaflex, so I am most familiar with that treatment.


    For Xiaflex, think my ortho doctor required at least a 20 - 30 % contracture, as measured on the joints (knuckles) of your finger. I had a 40 - 50 % contracture on my ring and middle fingers -- I was 66 y/o at the time.

    Xiaflex is expensive -- if you are U.S. and have Medicare Part B, they pay a sizable chunk of that -- any supplement may pay the rest. Check with the doctor's office -- they should be able to tell you what to expect.

    Your ortho doctor should be able to tell you whether your a good candidate for Xiaflex or not. You don't want to allow the contracture to get too great, because the procedure may be dangerous or impossible to do then.

    Personally, I researched the different treatments for DC, decided I wanted Xiaflex, and then found a local doctor that did that procedure. I think that was a good choice to do, because my doctor was enthusiastic about Xiaflex, and sounded like he had repeatedly good results doing the procedure.

    The Xiaflex injections hurt -- it is recommended the doctor doesn't give you anesthetic during the shots.
    The next day when he broke the chords, my contracture resolved to 0 degrees. That was in January.

Hope this helps. Fingers on my other hand are slowly starting to contract now, so when and if they get bad enough, I will request the same treatment on my other hand. I first noticed the beginnings of DC about 30 years ago.

05/12/2014 14:34
Diver 
05/12/2014 14:34
Diver 
Re: DC just starting in right hand

You might consider radiation therapy for the new nodules as it appears to be most effective for slowing or reversing early stage growth. Unfortunately, in the United States, some hand surgeons may be unaware of radiation therapy as a viable treatment option so you may have to do some research to locate a facility in your area that provides this treatment. I just completed a complete treatment course last week and have seen a softening of the nodes but not an appreciable improvement in the very slight curvature of my palm. The radiation oncologist indicated I should wait several months to determine what degree of improvement the treatment has provided. Due to the delay in locating a local sources for radiation therapy, the most I can probably hope for is halting the progression.

05/12/2014 14:56
JohnG 
05/12/2014 14:56
JohnG 
Re: DC just starting in right hand

econn, some questions that might help people here estimate your condition:


    If you place your hand palm-down on the table, and press it down, is there any space under your contracted fingers?

    Can you estimate the degrees of contraction when holding your hand freely (not pressed on a table)?

    Do you feel sensations in your hand like itchiness, or a creeping feeling?


If you can post a photo of your hand, that can help, too.

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