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Dupuytrens how early is too earlly
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05/30/19 01:07
inquisitivelady 
05/30/19 01:07
inquisitivelady 
Dupuytrens how early is too earlly

So is it better to catch early and active even if i dont see any cords or nodules but an RO does or is it better to wait to see changes in skin, dimpling and tightning. All i have is pain and tingling and the same feeling i had in other hand which is radiated.

Edited 05/30/19 20:35

05/30/19 06:29
Stefan_K. 
05/30/19 06:29
Stefan_K. 

Re: Dupuytrens how early is too earlly

Hi inquisitivelady. From what I know early and active is the right time, especially when you already had DD develop in the other hand and RT worked as also was the case for me. Just surprised that you feel pain but no nodules or cords yourself, if I understood correctly.

Stef

[57, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

05/30/19 09:32
spanishbuddha 

Administrator

05/30/19 09:32
spanishbuddha 

Administrator

Re: Dupuytrens how early is too earlly

You describe some symptoms, but have you had a diagnosis from an experienced hand surgeon or doctor or radiologist. How long have you had these symptoms? There is such a thing as too early if there is no ongoing or recent progression. Based on what you say I would be inclined to actively ‘wait and see’, but monitor changes, new or larger cords or nodules, hand extension, skin changes along with those you already describe. Maybe a small journal with photos. It seems you are already talking to an RO so if you detect these changes in the next few months you are ready to go and have RT. But I do wonder why your RO has not provided this advice? Maybe (s)he does not have the experience with DD we would recommend.

05/30/19 18:48
spanishbuddha 

Administrator

05/30/19 18:48
spanishbuddha 

Administrator

Re: Dupuytrens how early is too earlly

I can’t really respond further as there are no clear cut rules as an answer, you are getting good answers from your FB posts, IANAD and internet consultation or diagnosis is fraught. The disease usually progresses slowly, giving you time to make a considered decision, unless you have diathesis or an aggressive case. Your (travel) circumstances are making things difficult, but I would have this discussion with your radiologist as you say he is experienced treating DD.

05/30/19 19:19
inquisitivelady 
05/30/19 19:19
inquisitivelady 
Re: Dupuytrens how early is too earlly

Thank you, I feel better now about my choices. A surgeon palpated this afternoon and confirmed new disease in hand as well so I’m glad!
It just goes to show you that doctors are so important!

06/01/19 07:36
Prof.Seegenschmiedt 
06/01/19 07:36
Prof.Seegenschmiedt 

Re: Dupuytrens how early is too early ...

In Response to "Dupuytrens Disease - How early is too early ..."

Sufficient Time Required to Define Progression and Initiate Treatment
or "Finding The Moment of Kairos"

It is important to recognize that Dupuytren Disease (DD) is a symptom complex that may compromise hand function and eventually Quality of Life but does not appear to affect survival. Thus, there is no "Emergency Decision" but always a "Careful Shared Decision Making" between the affected person and the treating and fully knowledgeable medical specialist required.

Given this context in pursuing a treatment plan, the clinical specialist should carefully weigh the potential benefit to the individual person of a particular treatment against that potential treatment's risk for adverse events, the severity of those adverse events, and the reversibility of any occuring adverse events.

For some individuals thoughtful counseling regarding the nature of DD and the typical disease course may be sufficient to alleviate concerns, and a patient may choose not to pursue further treatment.

After a careful education on normal hand function and possible exclusion of other diseases which may be the reason for any observed symptoms (e.g. pain, itching, tingling sensations, etc.) sufficient time is required to affirm the potential disease-related symptoms. Moreover, a minimum period of 3 - 6 months is usually required to observe and define such "progressive symptoms" for Dupuytren Disease.

The risks and benefits of the various treatment alternatives including a "wait and see strategy", and the common agreement on realistic treatment goals (if the individual desires treatment and is willing to engage in treatment), then a shared decision regarding the treatment plan can be conducted.

At the present time there is no agreed-upon minimum symptom complex necessary prior to any intervention in DD which includes radiotherapy. Nevertheless, it should not be recommended to irradiate the hand of an individual without even palpating a single nodule and not following the progression of that nodule for a minimum period of 3 - 6 months.

Thus, I would strongly recommend NOT TO TREAT without a clear documentation of progression of the observed objective findings. One should always keep in mind, that there is not only a "TOO LATE SITUATION" for the use of radiotherapy but also a "TOO EARLY SITUATION" for any intervention in DD including the option of prophylactic radiotherapy.

This requires the art of living with an appropriate mixture of KAIROS ("finding the right moment") and CHRONOS ("acting according a strictly defined time line") - time will be always an individual concept in DD and requires a careful and meaningful shared decision-making process and sufficient patience and dialogue between the affected individual and the physician.

In Summary:
I would NOT IRRADIATE the hand palm(s) of an individual with only symptoms like itching, tingling or pain symptoms and would start to carefully monitor the individual hand by inspection and palpation (and eventually diagnostic tools) for any new sign of DD (including wrinkling, nodules, cords etc.). In addition, I would not treat an individual with just a single nodule which has not shown a "progressive disease pattern" (increase in size, number and consistency) over a defined time period --> see separate threads.

----------------

P.S.
In a few Threads I will provide some additional literature links on the differential diagnosis of "symptoms" (itching, tingling, pain etc.) in the DD symptom complex.

Edited 06/01/19 09:57

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06/01/19 17:13
inquisitivelady 
06/01/19 17:13
inquisitivelady 
Re: Dupuytrens how early is too earlly

Thank you Prof. Seegenschmiedt for your detailed response and I know this will help many to decide on timing of radiation. For most this disease moves slowly and timing of radiation is very important. Your photo showing how a skilled radiologist finds nodules and cords that the patient does not is exactlly what happened to me.
My RO advises to treat new early diseased hand as RO palpated 3 cords and 8 tiny nodules and it is active with pain and tingling so I am moving forward with radiation treatment and put my trust in radiologist to treat very early. If it was one nodule and cord I would wait and watch for sure, but given how quickly it progressed in my other hand and several nodules involving all fingers, I feel this one will progress in a similar fast pace as other hand did and both hands mirror eachother. This is a slow diseasse for most, but I am probably in the minority with nodules at each mcp joint and my entire palm buzzing and painful, and even pain up fingers. I feel I have a very aggressive case involving all fingers on both hands so I feel I need to be agressive also with my decision to treat now while active and early. Perhaps doing radiation so early will help prevent some of the pain I still have in my other radiated hand. Although no doctor has told me perhaps treating both hands with radiation in agressive cases, will help turn off collogen signalling. In other words, maybe treating both hands in aggressive cases when both hands are active can help put disease into dormancy for a while, instead of just one hand. These are just my thoughts and no evidence to support this line of thinking. I wish I could have unlimited radiation and not have to think should i save radiation for later for this unpredictable disease, but I can only choose treatment based on the now, not the unknown future. The now is “early and active” and the only thing missing is watching it grow more. Hopefully I am doing the right thing and hopefully I wont have regrets.

Edited 06/01/19 17:47

06/03/19 00:47
inquisitivelady 
06/03/19 00:47
inquisitivelady 
Re: Dupuytrens how early is too earlly

Prof. Seegenschmeidt,
Today I woke up with an entirely different perspective and my gut is telling me to wait and observe the changes over the next three months. Why am I rushing to make decision? What if progression is slow in this newly diagnosed hand or does not progress from where it is now? I do not want to make a rushed decision. I do not want to make a decision to radiate because I am scared of this disease. I do not want to make a decision because it is convenient that I am radiating other hand. I will have to decide in morning for sure but just wanted to thank you for your post as it has helped me realize I do not have to rush a decision. The observation period of the disease is missing from determining I am making right choice. I guess there is a chance there will be little or no progression and I will not know unless there is time to know, time to evaluate. So thank you for posting and as the saying goes time will tell......

07/30/19 03:25
Carolynrivers 
07/30/19 03:25
Carolynrivers 
Re: Dupuytrens how early is too earlly

Hi everyone,
I posted about two months ago about numbness in my right little finger after using crutches due to knee surgery. This is the hand that I have Dupuytren. I’ve been to two hand surgeons in the Chicago suburbs. Both with little to offer me. Since being involved with this forum I’ve learned that there are other treatments to consider. Can someone please recommend someone in the Chicago land area to help me find better treatment choices. If not the Chicago area, I’m willing to go to someone in the Midwest US. THANK YOU.

07/30/19 09:09
spanishbuddha 

Administrator

07/30/19 09:09
spanishbuddha 

Administrator

Re: Dupuytrens how early is too earlly

Carolynrivers:
Hi everyone,
I posted about two months ago about numbness in my right little finger after using crutches due to knee surgery. This is the hand that I have Dupuytren. I’ve been to two hand surgeons in the Chicago suburbs. Both with little to offer me. Since being involved with this forum I’ve learned that there are other treatments to consider. Can someone please recommend someone in the Chicago land area to help me find better treatment choices. If not the Chicago area, I’m willing to go to someone in the Midwest US. THANK YOU.
It’s not clear what stage of progression your hand is at and the desired or suitable treatment, RT, NA, Xiaflex, surgery? I would seek a Dr skilled in NA but knowledgeable about all the treatment options for advice, an example is Dr Pess, but if that’s too far our list of doctors performing NA is here https://www.dupuytren-online.info/NA_list_North_America.html. The DART list of RO’s is here https://dupuytrens.club/click-here-1.

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