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Dupuytren, genes, red wine, frozen shoulders and L-Glutamine
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12/16/18 01:41
Prof.Seegenschmiedt 
12/16/18 01:41
Prof.Seegenschmiedt 

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Dear Isabelle,

Radiation therapists are no horrible doctors because they may use possibly damaging ionizing radiation, however they might be quite experienced in terms of the examination and evaluation of the early disease stages of Dupuytren and Ledderhose Disease. The recommendation for you at the present time would be a diligent physical examination of both hands and feet by an experienced physician with good knowledge of both Dupuytren & Ledderhose Disease including a high quality photographic documentation to demonstrate where you might have nodules and cords for comparison with later findings.

Afterwards you should compare these initial clinical findings and symptoms with systematic follow-up examinations at about 3, 6 and 12 months by the same doctor to assess whether you might have a progressive development of the disease (nodule number and size, cord number and size; change of function, increasing symptoms etc.).

Radiation therapy is only applied in the "progressive phase" while no or only minimal functional deficit has occurred - a situation in which neither needle aponeurotomy (NA), percutaneous needle fasciotomy (PNF) nor any open surgical procedure has a justified role.

If you apply radiation therapy at the correct time period ( i.e. "not too early and not too late") you might have about a 90% chance that no other measures have to be taken in the treated extremities (affected hand palms and foot soles) in the future for more than 10 years - at least that is the documented evidence from several RT studies with long-term follow-up.

I include an evaluation sheet which I use for patients which I follow over a longer time with or without previous RT for your own use and structured evaluation (Dupuytren_Evaluation_MHS_2016.jpg).

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With gratitude for all affected patients & medical colleagues who help to advance patient care ...

Edited 12/17/18 15:43

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12/16/18 02:27
isabelle 
12/16/18 02:27
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Thank you doctor for your explanation and recommendations for examination and follow-up!

I understand that radiation therapy only applies in the progressive phase and something is still not absolutely clear in my mind:

- is a person considered on "progressive phase" if he or she experiences symptoms after a needle aponeurotomy (NA) without having restrictions yet in the fingers? I mean do you treat successfully patients who had NA done and have early signs that the condition is coming back? And if you do, are the results as good as those you obtain on patients who never had any procedure done on their hands or feet (I am talking about people who have similar signs on the hand, early signs, no restrictions on the fingers mobility yet or very little, but one has had NA in the past and the other has not)?

- and on the contrary, if a person tries the radiation therapy and it does not work, can that person still have NA done or is it more difficult than with a person who never had radiation done?

Given the fact that I understand these procedures do not always work for everybody, I find it important to know if other options are still available after any treatment.

I hope I do not take too much of your time.

Thank you again,

Isabelle

12/16/18 10:22
Prof.Seegenschmiedt 
12/16/18 10:22
Prof.Seegenschmiedt 

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Isabelle, so far it is still not clear why, when and at which location of your hand you have received your initial needle aponeurotomy (NA) which is usually reserved for more advanced Dupuytren Disease with a functional deficit of one or more finger rays of about or more than 30 degrees. Each invasive procedure including NA means an additional trauma to the affected hand which can immediately enhance the disease progression; thus, it is very well possible that you have further progressive disease after the NA not only at the site of the intervention, but also on other sites of the hand palm and fingers. During this progressive phase of formation of new nodules and first cords while still having full function in all fingers is the best time period to apply radiation therapy (RT); RT may be performed after NA, if all fingers have reached full function (i.e. no extension deficit). While NA only works at a "local spot", RT can be addressed to all affected regions of the hand palm including a "safety margin" around the palpable nodules and cords. RT should be applied if there is an objective change of signs and symptoms (see attached photograph).

The basic effect of ionizing radiation is to stop the proliferation of the active fibroblasts and to reduce the local inflammation. The results of RT become less successful if the disease has already lead to some contraction and loss of finger function. In this phase the "radiosensitive" cell population is diminished or has disappeared.

If RT is applied at the right time period the efficacy is in the range of 90% and later procedures like NA, collagenase injection or open hand surgery are quite unlikely (about 10% progression despite RT), but they are still possible and not compromised.

Your actual thoughts and doubts about the disease development are well understood, but the first step is the careful assessment of your current status, the proof of progression and then - step by step - the use of available treatment options in the correct order and according to the stage of your disease.

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With gratitude for all affected patients & medical colleagues who help to advance patient care ...

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12/16/18 15:52
isabelle 
12/16/18 15:52
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Thank you doctor! I did not have any NA or any procedure performed (it is too early in my case). I just had the diagnostic so far. But with your answers I now have a much clearer picture of the process and the options.
Thank you very much for taking the time to inform me!
Isabelle

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