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Oh Boy!
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03/18/2010 19:34
DonM 
03/18/2010 19:34
DonM 
Oh Boy!

I am a 55 y.o. white American male having "Viking" ancestry. I've been a lurker on this forum on and off for about two years because I have already had two surgeries for dupuytren's nodules and bands. I am now rather abruptly facing my third surgery. Let me briefly tell you my story.

When I was 38 y.o. I developed a large palmar nodule under my right ring finger with a cord into the finger. It took about 1.5 years for the nodule and cord to develop from nothing to about a 40 degree MCP joint contracture. I had a selective fasciectomy at that point. Scarring is minimal and I have full use of my finger and hand with only a little numbness. I consider that surgery to be an overwhelming success.

Many years had gone by with no further appearance of manifestations of the disease. Then I developed several palmar nodules
under the middle, ring, and little fingers of my left hand. There were two rows of nodules with cords in the palm but not into the fingers. Still, the ring finger contracted to 30 degress and then I had surgery. The surgeon made a large Y shaped incision on my palm to perform a selective faciectomy. I had more scarring this time, but this did not impede any finger or hand movement. I have 100 percent movement. This surgery created some partial numbness in a large area in my palm. I consider the surgical results to be good and acceptable. This surgery took place in November of 2008, and again the dupuytren's took about 1.5 years from nothing to surgery. I was 53 y.o. for that surgery.

I was sitting at my computer last week and I caught my left hand little finger on the edge of my keyboard unexpectedly. I looked down to my hand and I couldn't believe my eyes. I had a large nodule on the lower part of my little finger between the MCP and PIP points. My little finger is contracted about 40 degrees at the PIP joint only. Today, it looks to me like a cord is extending up into the finger across the PIP joint. I also have developed a knuckle pad on the PIP joint of my left hand ring finger. I just can't believe how fast this disease is progressing this time. How did I not notice this nodule before? Surely it would have taken at least a few months to get to this point, but it seems to have taken place practically overnight. I have already made an appointment to have the surgeon take a look at it on April 6th. I have looked at Dr. Eaton's web site, but I don't think that I am a very good candidate for NA. My disease is very progressive this time, and I don't think that the NA results would "hold" for very long. Any thoughts? I really am not looking forward to a possible dermofaciectomy and skin graft.

03/18/2010 19:40
jimh 
03/18/2010 19:40
jimh 
Re: Oh Boy!

My story is similar. I'm 58 and symptoms appeared in my late 30s. 2 surgeries, the first quite successul except for some nerve damage, the second one a mixed result. One NA treatment that achieved only a partial release of a difficult thumb contracture. There is some progression in other areas going on now but it's slow.

My experience is that there are period of sudden rapid progression, then years when not much happens. Don't write off NA, the guys doing it are increasing their skill and some are getting more agressive, successfully releasing contractures that they used to think were impossible.

03/19/2010 04:12
flojo 
03/19/2010 04:12
flojo 
Re: Oh Boy!

I would also suggest that you not rule out NA. If Dr. Eaton says it is feasible, consider having it then follow immediately with RT to stop the progression. Everybody has to make their own decision about what is best for them. Now that I know, I will have RT before contracture occurs. I watch my hands like a hawk.

03/19/2010 05:23
wach 

Administrator

03/19/2010 05:23
wach 

Administrator

Re: Oh Boy!

There is no proof that RT immediately after NA does any good but I can see reasons against it: a) RT does not work very well on cords, rather it's good on "fresh" nodules and b) the basic rule of RT is to minimize radiation exposure and therefore RT is not suitable as a preventive means.

Wolfgang

Quote:



I would also suggest that you not rule out NA. If Dr. Eaton says it is feasible, consider having it then follow immediately with RT to stop the progression. Everybody has to make their own decision about what is best for them. Now that I know, I will have RT before contracture occurs. I watch my hands like a hawk.


03/19/2010 18:32
flojo 
03/19/2010 18:32
flojo 
Re: Oh Boy!

I agree that there is no proof that RT will work in any particular case and no guarantee that any treatment will work 100%. I can only speak about what RT did for my hand after NA released the cords. To me, it is real, but for someone else reading my experience, it may only be a testimonial.
No, RT will not release the cords. After NA released the cords, I followed 3 months later with RT. After RT, the older nodules reduced in size, became softer and no fresh nodules have formed. Cords have not developed further in the radiated area, span across my hand from pinky to thumb increased, tightness across my hand lessened and my grip improved significantly. I know it might change, but, so far, that has maintained for 9 months. Before RT, nodules and tightness across my palm and the thumb/forefinger web were continually progressing.

Personally, I will use RT on non-radiated areas of my hands as prevention if it becomes evident that Dupuytren's disease is active. Conceivably, if the radiated area becomes active again, it could be radiated again since the RT that I was given was a very low dosage, but I hope I don't have to cross that bridge.
Each person has to decide for him/herself. I just highly recommend doing research on all treatment options, including RT as one treatment option for slowing or stopping progression of Dupuytren's.

I hope that someday it will be clearer what option we each need to take for our particular case.

03/20/2010 05:24
wach 

Administrator

03/20/2010 05:24
wach 

Administrator

Re: Oh Boy!

Flora, I think we are in full agreement. If you have an active Dupuytren nodule it makes sense to stop further progression and the earlier you catch it the better is the effect of RT.

What I am opposing is to have RT generally after NA hoping that it will stop recurrence. Maybe it does but there is no evidence for that and using RT as a preventive means without indication of active growth would be, in my opinion, against RT principles.

Wolfgang

03/20/2010 13:35
cindy850 
03/20/2010 13:35
cindy850 
Re: Oh Boy!

But how do you know when your hands are active because my hands kept making cords off of these nodules and then it would slow down for couple of weeks and then stiffness and everything else that goes along with it. I did not have a doctor that knew when it was active or if it was active. And i started this nightmare about 8 months ago till i had RT. Just curious. Take care

03/20/2010 23:40
flojo 
03/20/2010 23:40
flojo 
Re: Oh Boy!

Wolfgang, I read my post again about RT and realize that I didn't stress that it needs to be active. Thank you for clarifying that Dupuytren's needs to be active for RT to be effective. Mine clearly was, and it happened to be soon after NA since I had NA done in Stage 1 contracture.

When I went for my RT consultation, Dr. T asked me if it was active. I unequivocally said, "Yes." Then he asked, "How do you know?" I had to pause and think for a moment, but I told him that it felt itchy and more nodules kept forming. He clearly wanted to know that it was active and explained that RT was most effective with active Dupuytren's. Then I wanted to hurry, hurry and get RT in case it was going to go dormant.

There was no indication of activity in my fingers, but he wanted a good margin, so he included the metatarsal joints because nodules in the palm were very near all fingers except the pointer finger. I am now noticing a thickening along the inside of my little finger just above the metatarsal joint. That would be outside the RT area. Bummer! I'm watching it like a hawk because it may have been lurking already higher in that finger with no indication that I/we could tell 9 months ago.

My symptoms of Duputren's being active were:
* itchy, crawly feeling in the tissue of my palm.
* aching in my hand and going up into my wrist especially at night,
* increased tightness in my hand especially at night,
* increasing size of nodules and new nodules forming continually,
* decreasing flexibility - span from thumb to pinky and thumb to forefinger across the web,
* decreasing grip. I got to the place that I couldn't open a water bottle.

I would be interested in others' description of your symptoms that seem to indicate "active" Dupuytren's.

03/21/2010 02:00
moondanc 
03/21/2010 02:00
moondanc 
Re: Oh Boy!

Quote:




I would be interested in others' description of your symptoms that seem to indicate "active" Dupuytren's.



Flojo, I had almost all the same symptoms you had. The itching was ferocious and has stopped sine RT although I've not had as much relief as you--probably because my disease is more advanced. In addition, after many years of inactivity, I had started getting new nodules on my right hand and DD had started in my left hand. Now I'm wondering what the relationship in "active" is between one hand and another--if it's "active" in one hand, does that mean it's also "active" in the other and on should consider RT in that hand? Purely academic in my case since I had new nodules in each hand.

As far as considering whether or not to do RT as is often noted, the risk of cancer in the hand after RT is only 1-2% after 20 years--a risk well worth taking, I think, for those of us 60 or older. The risk of serious complications--tendon rupture for instance--with NA is also 1-2% or even higher with less experienced docs--I don't think I've ever seen anyone think about not doing NA because of that risk.

As far as doing RT right after NA, my radiologist explained to me that RT is used to prevent scar tissue in some patients, especially those prone to keloids. He uses it on some cancer patients. Even an NA procedure results in scar tissue and if that can be avoided by having RT ASAP afer NA, one minimizes the risk of further contraction simply because of scar tissue formation after NA.

Diane

03/21/2010 02:08
DonM 
03/21/2010 02:08
DonM 
Re: Oh Boy!

Thank you to all of those that have offered some thoughts. I will definitely explore all of the options mentioned.

Don

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