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NA query, please advise.
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09/07/2013 15:23
wach 

Administrator

09/07/2013 15:23
wach 

Administrator

Re: NA query, please advise.

I believe that some people have what I would call "dormant" Dupuytren's sites and those sites might get activated. One activation mechanism might be the healing process after surgery. When you have a major wound, the whole body reacts and that might trigger dormant Dupuytren's wherever it is located. It's not necessarily something infectious that is travelling through the blood, I believe that it might also be normal, healthy reactions that trigger Dupuytren's into growth.

Unfortunately it is so far impossible to predict prior to surgery whether a patient has dormant sites because they might so small that they are not palpable. It's therefore not possible to predict whether Dupuytren's might flare up eösewhere after surgery. One of the risks of having surgery.

A flare up in several sites without surgery might have a similar background. Something in your body triggered growth of Dupuytren's and it starts growing where already mini-sites of the disease exist. BTW, I had the feeling that my Dupuytren's became also more active after I had a thyroid surgery.

Wolfgang

callie:
I think there is more to the "the only difference being that the disease started in six new sites in both hands (3 each) within two months after the surgery".

When Dupuytren's has flared up for me it has been in multiple places (other hand or feet) almost simultaneously. It seems as though the disease has traveled through the bloodstream or some other signal. This has happened when no procedure had happened.


Edited 09/07/13 18:59

09/07/2013 17:38
callie 
09/07/2013 17:38
callie 
Re: NA query, please advise.

That explanation makes very good sense. I am still wondering about the RT I had seven months ago. I am watching it closely to see if that has triggered the swelling of nodules that have been dormant. Or, this new swelling was just part of the activity in the RT treated nodule and it had started previously to the RT.

As we know, the unpredictable/random part of this disease is what makes it interesting/difficult. When they find out the trigger mechanism for scar tissue there might be a clue about Dupuytren's activity.

09/07/2013 21:48
LubaM. 
09/07/2013 21:48
LubaM. 
Re: NA query, please advise.

Seph:
callie:
Seph,

I wonder about the build up of cords when NA is repeated so many times? Is there an increase since the cord is left in? Does the cord grow back together? With my surgery the diseased material was completely removed and it is hard to tell that I ever had Dupuytren's.

With NA the area where the cord is broken seems to go soft. I have had cords reappear in the same spot but doesn't seem to be any worse than the previous time.

Interesting about cords "reapearing in the same spot but not worse than the previous time"....

I had NA on LH pinkie finger four months ago, PIP was at 50 degrees pre-NA even though there was NO visible cord pulling on the finger (cord must have been deep inside palm since it also couldn't be felt). Immediately after NA procedure a new cord appeared on the outside edge of the finger !!! and recently, a second small cord appeared right next to it. PIP is now back to 40-45 degrees contracture

09/08/2013 01:54
moondanc 
09/08/2013 01:54
moondanc 
Re: NA query, please advise.

callie:

As we know, the unpredictable/random part of this disease is what makes it interesting/difficult. When they find out the trigger mechanism for scar tissue there might be a clue about Dupuytren's activity.

Your comment about scar tissue reminded me of keloids and the fact that fair skinned people are more prone to them. I wonder what the difference is between keloids and DD formation. What are the similarities? I know radiation is used to shrink keloids.

How many DD folks on this forum are NOT fair-skinned. Very curious, esp. since called "Viking" Disease.

Diane

09/08/2013 04:50
pia2some 
09/08/2013 04:50
pia2some 
Re: NA query, please advise.

I have terrible keloid scarring. I have a problem with scar tissue in general. After abdominal surgeries (I've had numerous ones), I'd get terrible adhesions in my abdomen. Once they had to do more surgery to release the adhesions. I also had shoulder surgery for two large bone spurs. I developed a frozen surgery very rapidly because I ended up with excessive scar tissue around the shoulder joint.

I'm definitely fair skinned and of European heritage!

~ dawn

09/08/2013 16:00
moondanc 
09/08/2013 16:00
moondanc 
Re: NA query, please advise.

wach:
I believe that some people have what I would call "dormant" Dupuytren's sites and those sites might get activated.

I don't know about "dormant" ... I had NA on RH ring finger, MCP and it was OK for 2.5 years until it contracted enough to get into Xiaflex study on that same finger/cord. The injected cord almost seems to be gone, no MCP contracture but I have cords up the side of that finger, MCP to PIP nodules, PIP contracture and my pinkie, which previously was pristine is my worst finger. To me, it's almost like Xiaflex created a dead zone along the cord where it received the three injections and "pushed" DD everywhere else (I know it sounds weird!).

As far as RT my RH palm, where I had RT after NA is in much better shape than my LH palm where I had RT right before my NA. It would also follow, to my untrained brain, that since my DD started in my right, it would be the worst hand but the disease and contractures are much worse in my left although my RH pinkie is trying to make a run for it (toward my palm). I also had VERY aggressive NA in my RH palm (not Dr. Eaton) lots of stimulation and needle activity and yet it's the best palm.

Diane

09/20/2013 21:57
moondanc 
09/20/2013 21:57
moondanc 
Re: NA query, please advise.

wach:
I believe that some people have what I would call "dormant" Dupuytren's sites and those sites might get activated. One activation mechanism might be the healing process after surgery. When you have a major wound, the whole body reacts and that might trigger dormant Dupuytren's wherever it is located. It's not necessarily something infectious that is travelling through the blood, I believe that it might also be normal, healthy reactions that trigger Dupuytren's into growth.

Unfortunately it is so far impossible to predict prior to surgery whether a patient has dormant sites because they might so small that they are not palpable. It's therefore not possible to predict whether Dupuytren's might flare up eösewhere after surgery. One of the risks of having surgery.

A flare up in several sites without surgery might have a similar background. Something in your body triggered growth of Dupuytren's and it starts growing where already mini-sites of the disease exist. BTW, I had the feeling that my Dupuytren's became also more active after I had a thyroid surgery.

Wolfgang
callie:
I think there is more to the "the only difference being that the disease started in six new sites in both hands (3 each) within two months after the surgery".

When Dupuytren's has flared up for me it has been in multiple places (other hand or feet) almost simultaneously. It seems as though the disease has traveled through the bloodstream or some other signal. This has happened when no procedure had happened.

I've been thinking about the comments each of you made ever since I read this but have been preoccupied by my NA and the comment I wanted to make just didn't come to me. One of the things w/Xiaflex is that it travels throughout the entire body through the lymph system-- anyone who has ever had Xiaflex and experienced the swollen arm and lymph nodes will know what I'm talking about. Immune markers also appear in the blood uip to 5 years after (I haven't read any data after 5 years and don't know if there is a study that tracks it).

Also, according to Keith Denkler, MD's website: "After the injection there is a lot of swelling and bruising. There can be redness, itching, pain, and bruising up the arm into the armpit days after the injection. All the Dupuytren's that is dissolved is metabolized out through the body via the lymphatic system. I'm not sure what that even means-- the cord dissolves, it's DD and metabolized throughout the body??? What exactly is metabolized? Does that mean it can land at any site where DD occurs and then start growing there-- or is it totally dissolved?

Interpretations-- or study documentation, anyone?

Diane

09/22/2013 14:57
cschieber 
09/22/2013 14:57
cschieber 
Re: NA query, please advise.

Hi Diane. Most likely what he means is that the portions of the cord dissolved (metabolized) by the enzyme, which are now smaller biological molecules (metabolites), are removed from the body via the lymphatic system. This dissolved material is in no way related to the cells in the active fibroblasts and therefore, cannot cause the disease to proliferate elsewhere . In fact, the cellular makeup of the fibroblasts and cords are quite different, even before Xiaflex treatment. The enzyme also biodegrades and it's metabolites are removed from the body in the same way. This is why, when injected properly, it doesn't dissolve stuff it shouldn't. Hope this helps.

Are your hands getting any better?

09/22/2013 22:35
moondanc 
09/22/2013 22:35
moondanc 
Re: NA query, please advise.

cschieber:
Hi Diane. Most likely what he means is that the portions of the cord dissolved (metabolized) by the enzyme, which are now smaller biological molecules (metabolites), are removed from the body via the lymphatic system. This dissolved material is in no way related to the cells in the active fibroblasts and therefore, cannot cause the disease to proliferate elsewhere . In fact, the cellular makeup of the fibroblasts and cords are quite different, even before Xiaflex treatment. The enzyme also biodegrades and it's metabolites are removed from the body in the same way. This is why, when injected properly, it doesn't dissolve stuff it shouldn't. Hope this helps.

Are your hands getting any better?

Interesting explanation, thanks. I had forgotten about the function of the lymph system. Still would be concerned about tendon rupture --although I don't quite undeerstand how that can also be a side effect or possible complication of NA especially when squeezing or gripping.

Thanks goodness the pain and electric shock sensations have been reduced by 75% and I'm doing much better in that regard. The numbness in the two fingers has not resolved at all and I guess I just have to wait. It's difficult in my RH as I had two partially numb digits--thumb and index finger after cervical spine surgery so I have to be very careful doing anything since I can't feel pain.

07/22/2016 10:03
MERLIN 
07/22/2016 10:03
MERLIN 
Re: NA query, please advise.

Well folks I'm off to see Dr.Badois next week as my little finger needs treatment. I had my ring finger done over 15yrs ago with no recurrence. He was brilliant!
My one regret now is that I let the NHS surgeon operate on a small nodule in my left hand just to see what it was like, boy do I regret that decision. Although listed on their credentials that they do NA, both surgeons I saw said it was not possible to do it on either the small nodule or my little finger. He was very keen to do my little finger, but I want going to let him anywhere near it.
The operation was awful, and took 3 months to heal. I filed the scar tissue down with a nail file and rubbed oil into it every day but still it is tight and believe it or not, since the operation in Jan 2016 the little finger on that hand, which was fine, now has dupuytrens lumps and is bending over. I am hoping Dr.Badois will be able to do something to stop it as I am getting older and also dont want the cost of going all the way to France again.
I will let you know how I get on.

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