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nodules
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03/16/2010 22:21
flojo 
03/16/2010 22:21
flojo 
Re: nodules

I highly suggest that you research and consider radiation therapy (RT). That stopped the progression of my Dupuytren's in the radiated area which was my whole palm. I had minor contracture, about 15-20 degrees and I had NA done to release that. My contracture was across the palm from pinkie to thumb. The span of thumb to pinkie was reduced as well as the span across the web of my thumb to forefinger greatly reduced, shorter by about one inch. I had cords across my palm and in my thumb. What you describe sounds like it might be cords?
For me, I'm going to try to be ahead of contracture. I watch my left hand for signs of contracture, and I'll get RT to stop the progression from forming contracture. For RT to be effective, they say that the disease needs to be active. If nodules are forming or getting bigger and cords seem to be connecting them, that to me indicates active Dupuytren's. Sometimes it stops on its own, but it also starts up again on its on.
Read every thing available through the menu on the left side of this page and read the Forum for individuals' experiences with this weird disease. After you learn all you can, you'll at least be able to make an informed decision. Then you just have to decide what is best for you.

03/16/2010 22:26
mike59 
03/16/2010 22:26
mike59 
Re: nodules

flojo thanks! Yes there seems to be definite cords as I examine the hands. They seem to connect.

Radiation therapy sounds good. It stops the progression?

Thanks again.

Take care,
Mike

03/16/2010 22:43
flojo 
03/16/2010 22:43
flojo 
Re: nodules

It is the cords that pull and cause contracture. Then again, they might go a long time and not cause contracuture. It is such a weird disease!

RT is not highly regarded by some people and doctors. On the other hand, it is a highly regarded treatment for me and others on this site who have had RT and experienced the progression stopping. I didn't get RT to reduce my existing Dupuytren's nodules, tightness and contracture. I only wanted to stop the progression. Actually, nodules reduced in size, got softer and the tightness in my hand was less. That was a bonus, because I would have been happy with just stopping the progression.

Of course, nothing is guaranteed. Again, the key seems to be getting RT when Dupuytren's is active. My palm felt itchy under the skin which to me was an indication of it being active. The itchiness stopped after about the first 3 days of RT. The protocol used for my RT was electron radiation, 1.8Gy daily M-F and the same the following week. That is a very low dose of radiation and conceivably could be done in the same area again if needed.

So far, 8 months later, it seems to still be in remission in the area radiated. I am closely watching some signs of activity outside the radiated area. I'll post here if it looks like it is for sure active.

03/16/2010 22:56
mike59 
03/16/2010 22:56
mike59 
Re: nodules

That sounds like a great way to control it. I don't have any hand problems yet, just the nodules & cords. I guess I am a bit freaked out over this. It has been one health issue after the other lately.

Thanks again.

Glad to hear it worked for you!

Mike

03/17/2010 02:38
flojo 
03/17/2010 02:38
flojo 
Re: nodules

Mike,
Join the crowd. I think we all freaked out. I was fixated on watching my hands. I am much better now that RT worked, but I still am very aware of what is or may be going on with Dupuytren's in my hands.

03/17/2010 07:57
wach 

Administrator

03/17/2010 07:57
wach 

Administrator

Wait and see?

Hi Dalton, callie's warning not to interfere with Dupuytren's refers to surgery. Surgery creates a large wound and the healing process can cause other nodules elsewhere to start growing aggressively. But you might want to look into radiotherapy which rather slows down progression (see menu on the left side). Once you experience contracture NA (also on the left menu) might be another option that does not trigger growth of nodules elsewhere.

Wolfgang

Quote:



...

Callie, your comment ("the more you mess with Dupuytren's you could increase the chance to stimulate activity") now alarms me! Up until now I was of the mindset that early treatment would be better than to wait until my hand starts becoming a claw, but now...? To the credit of the PT he did not recommend other treatment when I asked if he knew about needle aponevrotomy (NA) until contacture had started, so he did seem to have some background knowledge of the specifics. As my doctor warned me, and, apparently in line with your recommendation, stretching is not a good idea either, because, considering we are dealing with scar tissue, stretching could encourage more scar tissue. US may be called for when there is contrature present as it has been shown to reduce scar tissue, so wait. As for nodules, I'm guessing they are not scar tissue.

Oddly enough, last year, what first got my attention was not any bump but a hard ridge crossing my palm from butt toward forefinger. There were no noticeable bumps. That is still the condition of my left hand. (Mike59, I was 53 then myself.) My right feels tight but still passes the flat hand test while there is no tightness in the left. I have inquired with an NA treating physician in Idaho via e-mail as to how long one should wait before seeking that procedure, but with no response from him. It seems clear to me that NA is in my future and I will happily pay for that when the time comes (providing that private pay is still legal, but that's for another forum; still, that topic adds a certain urgency to my hindrance efforts).

Pardon me for rambling about my experience, but, my early feelings were akin to those of yours,

03/17/2010 13:39
lori 
03/17/2010 13:39
lori 
Re: nodules

Hi guys,

I will be brief in going over my past history. I developed a nodule and a cord in less than 6 months. I was beginnig to have a little puckering and slight drawing in of my middle finger. I went to a hand specialist who suggested I wait until I basically had a claw and then to do surgery. I flipped and knew that could not be the right answer. I found this forum and after a lot of research decided to use RT. I would do RT again in a heartbeat. I would not wait until your hand begins to contract. RT worked great and you can see before and after pictures of my hand by searching out "From MRI to now". RT seems after 6 months to have stopped the progression. I have not developed any new nodules and RT softened and has made almost all of my nodule disappear. My hand has regained mobility and almost feels like my old hand. My cord is less pronounced and you can almost not see it anymore. My finger stopped drawing in and the tightness went away. So far it is a success. My own personal opinion is based on the research that says it is best to treat with RT while the Dups is growing. Mine grew so fast that I felt like contracture was going to occur within the next few months. I felt I could not afford to wait and see what would happen. I was already having trouble at work using the computer, writing, etc..

Hope this helps you in your decision process.

Lori

03/17/2010 14:36
callie 
03/17/2010 14:36
callie 
Re: nodules

This preventative treatment for stopping the advance of Dupuytren's is/can be misleading. The growth of Dupuytren's is very irregular.

I had/have Dupuytren's in both hands. One hand progressed to 90 degrees contracture. The other hand has not progressed from the "dimpling" in over 20 years (no contraction). I had successful surgery on the hand that contracted.

In the arches of my feet, I have had nodules in both. The nodules have gone down in both arches without any treatment. The big difference for me was not putting pressure on the arch. I have no problem with these nodules now and don't realize they are there unless I feel for them.

03/17/2010 14:44
callie 
03/17/2010 14:44
callie 
Re: nodules

Wach,

You said, "Hi Dalton, callie's warning not to interfere with Dupuytren's refers to surgery".

I wasn't referring to surgery. I was referring to anything that might interfere with Dupuytren's, including therapy and lifestyle. My hand was opened up with surgery and there has been zero effect (eight years later) concerning growth of nodules or the spread of Dupuytren's. I still stick to my reasoning that people should be careful with lifestyle influence in the growth of Dupuytren's. I am not sold on the "preventative" treatment to control the advance of Dupuytren's because of the irregularity of the disease.

03/17/2010 16:36
mike59 
03/17/2010 16:36
mike59 
Re: nodules

Seeing two doctors today: one a GP, the other a PT doctor.

Your experience is invaluable.

Thanks,
Mike

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