Thank you, that is great. I would not want to eliminate a surgical procedure. I am still waiting to find out if my insurance will cover RT. My hand is in a prime period for RT.
In the summer of 2010 I had a motocross accident and I literally shattered my wrist. I had a few hour long surgery that ended up with 12 cm of metal and 11 screws left in my bones. After around 3 months small nodules started to appear on my hand. I ignored them as I thought it is irrelevant (as usually males do). Anyway, around December I had 4 nodules on the hand that had surgery and I started to notice increasing contraction on my index finger. That' s when I decided to schedule an appointment with one of the Clinics that specialize in hand surgeries, in Berlin, Germany. That's when I heard about Dupuytren's contraction for a first time. Doctor told me its hereditary (I don’t have anyone in my family that had dupuytren, he also dismissed the idea that about the cause being surgery) and only possibilty to solve this is to wait until the contraction becomes so significant so they could perform a surgery on the hand. Doctor also mentioned that in my age (33) its quite uncommon. I 'youtubed' a few videos of dupuytren's surgery. As you know its not a pleasant view - so I decided that the surgery will be the very last option . I stumbled upon other methods of handling contraction: injection and radiation. I decided to visit the clinic again and ask the doctor about them. In short he said that injections have not undergone sufficient clinical trials in Europe and are not yet available in the EU. As for radiation from what he heard it worked in around 5% of cases. The doctor is PhD.
I gave up after this for a while. However in following two months the growth became so significant and contraction was progressing virtually on a daily basis. I searched some more and found clinical trials performed in 90's in Germany and additionally they were covered by standard health insurance in Germany, so it has to work. It also turned out that one of the specialist that did the trials works in Berlin (Dr. Manfred Korner). I went to see him in DRK Westend Klinik in Berlin, where he examined me and admitted that he had several hundred patients that radiation helped and had around 95% success probability. I am not German, so I spoke with him in English - and he was quite fluent. He gave me a choice of e-beam or radiation. As I didn’t know the difference between those two he quickly explained the difference: radiation is older technology, they are not able to control the depth of the radiation and radiation its strongest on the surface of the skin and slowly diminishes as it penetrates the tissue. With e-beam they can target the exact depth and power of radiation. Moreover it wont go deeper then it is intended (bones). It was a bit more costly treatment, but since I had insurance I didn’t care and went for the e-beam. I had N1 stage.
After two days i had a metal 'mould' made to define radiation area. Following week I started my first session. Over the week I had 5 treatments, each e-beam lasting about 45-50 second ( total time spent each day in clinic about 10 minutes). 5 x 3gy dose. overall there wasn’t anything unpleasant about it. Staff was extremely friendly and helpful. After 3rd day I experienced hyperactivity for a few days where I had hard time falling asleep or didn’t sleep at all. When I consulted other doctor, he said that it shouldn’t be from radiation. I believe it could have been from e-beam because I didn’t eat/drink or do anything that would cause it.
On last day I had about 15 minute chat with dr Korner and scheduled second session after 3 months. During the 3 month period I haven't noticed any change in appearance of nodules. They didn’t soften or recessed. However I noticed that the contraction progression (which was rather extreme in my case) slowed down greatly. Also before the radiation when I applied pressure to the nodules ( by holding handlebars and still riding motocross - i didn’t quit after accident ) they hurt a bit. After the radiation it didnt cause any pain anymore.
During my second cycle of treatments nothing extra ordinary happened (except hyperactivity ). Again I received 5x 3gy dose (total of 30gy for both cycles). I had my second cycle 4 months ago. Nodules didn’t change/recess, but they stopped growing. I feel currently a bit more ease in my index finger tension. I can bend it much further (outwards from the hand) than before. My hand stopped sweating as well. The area of the skin that was radiated looks different - kind of very dry skin look and feel. I had to stop wearing my wedding ring as it irritates the skin now and caused painfull redness 'watery' blisters to appear.
Out of curiosity I asked dr Korner for a price , of my treatment and he estimiated around 1500EUR.
That's interesting; when I received my first RT series in Essen at the clinic of Prof. Seegenschmiedt, Dr. Korner was an attending physician there; he is a pleasant person. I didn't know that he had moved to Berlin, but I know that Prof. Seegenschmiedt has moved to Hamburg and noone is left in his old clinic who has a good "eye" and good "hands" to examine these patients with Dupuytren and Ledderhose.
If you have a follow-up visit with Dr. Korner, give him my regards from a "former a patient from Essen" ! He must have been well trained by Prof. Seegenschmiedt, whom I visit in Hamburg for follow-up assessment.
Hello again, for those who may be interested in a bit of an update?
My family have no history of this disease, I am not a smoker and I do not drink - heavily. But I have completed a very large renovation of a house and I have used my hands extensively throughout my working life. I suspect that these activities have led to the onset of dupuytren’s. (I cannot actually think of any other reason I should have this disease).
I had my RT treatment in 2011 at Hamburg, just after completing the second phase of treatment I managed to break my leg, dislocate my ankle and tear a tendon in my foot, this somewhat took my mind off my recovery from the RT! Upon my recovery from the broken leg and other injuries, which took some 6 months. I undertook another house renovation, it is something I am good at and enjoy. I considered the risks to my hand and decided that it was better to live a little rather than withdraw into an empty shell. I know many would shudder at the thought of undertaking such work, but I am a great believer that a sedentary lifestyle can be just as bad if not worse than responsible activity.
So what’s the point of this posting? Well, I have seen big fluctuations in the reaction of my hand whilst undertaking the renovation work; I have also noted that there is a varied reaction to the size and sensitivity of the nodules dependent upon how I am feeling. When I am tired from the physical work, the nodules are enlarged, more painful, when I have a cold or I am under the weather physically the nodules are very painful and at times they have become prohibitive to being able to work. At night I would often get the feeling of tingling, aching or even loss of sensitivity in my hands. However I think by exercising my hands through work (I have taken steps to ensure there is significantly less impact and vibrating travelling through my hand) I have found to date no loss of flexibility, no new nodules have developed and no major loss of strength in my hand.
I did become concerned about one nodule on my little finger, as it had become enlarged and I wondered about having extra treatment on it. I wrote to the clinic in Hamburg and asked for a copy of images taken at the time of treatment as I wasn’t too sure that this area had been treated. Upon receipt of the photographs it was obvious that it had. I was informed by Professor Seegenschmiedt that a third treatment was possible on a particularly troublesome area if necessary. I however have decided to take a step back, wait and see. This nodule has now once again reduced in size, although my finger does click when flexed, but frankly if I did not have this condition I would not normally flex my little finger, I never flex the little finger on my other hand to the same extent!
As stated above my condition fluctuates, dependent upon my own overall health, I must admit to worrying continually about this condition, that is the most depressing part of the condition for me. I am constantly looking at my palm, mentally gauging the size and sensitivity of the nodules, I suppose somewhat insecure about the condition and troubled that it is going to return. Knowing that a third phase of RT treatment is available if needed is quite reassuring; this coupled with the further option of NA if really necessary helps me feel in control and I can manage any treatments’ required.
So to date RT has worked, it has been a bit of a bumpy road, I suspect it may always be a bit like that from now on. I have no regrets about having RT. I have come to appreciate that there are many degrees to this condition and some suffers have the most horrendous time; others appear to be less inflicted. It is a most cruel disease which is difficult to understand, difficult to manage and control and ever so tiresome, however, I have as stated above, no regrets about visiting Hamburg and undergoing RT treatments. In fact I am convinced that without the RT treatment I would have been in serious trouble by now.
A final contribution, certainly this forum is an absolute essential tool, the contributors have made it essential reading for me, I regularly read the postings, without doubt the more people contribute the better the support mechanism. Thank you to you all and best wishes. Robert
1) I wonder about, "although my finger does click when flexed"? I have very seldom if ever heard that "clicking" is involved with Dupuytren's. It sounds like a tendon catching when sliding through the tendon sheath.
2) I have had three nodules on dominant hand that went dormant for about 13 years and now are not noticeable. At the same time on my other hand the nodule produced 90 degree contraction in about 18 months. I agree that heavy hand exercise can stimulate the nodules.
3) Dupuytren's is unpredictable. It is also not nearly as serious as many/most other diseases. I do not "worry" about this disease. I do realize that some have a significantly more intense situation than I have.
You might have osteoarthritis in that finger. I developed it at the same time as the DD occurred. I do not have arthritis in any other finger other than the DD ones. My finger makes a click when I bend or straighten it. Not all the time, but enough that I occasionally notice it. I also have a firm bump for lack of a better description on the joints right below the nail where the arthritis is. I was worried it was DD or something else, but when I was treated for RT, the MRI/x-rays showed that it was osteoarthritis and not DD. As I have aged a lot of joints click that never clicked before.
Thanks for your detailed posting fitfeet......I am sure many other suffers will benefit from your observations on this posting....I can relate to your findings regarding RT.....I finished my second round a year ago in Hamburg for stage 2 LD.....I also enjoy many activities that possibly put me at odds with progressing the condition.......I feel that I have learned and realigned my limitations to reduce micro injuries and possibly reduce disease progression....
I am 50 years old. I started my radio therapy 3 years ago, in Hamburg with Dr. Seegenschmiedt. I completed my second visit in August 2010. Dr Seegenshmiedt had deduced that I had abut 10% curvature in my hands, and was in early stages.
Background: I have done years of hard physical labor doing remote backcountry trailwork, carpentry, lots of rock work, and general construction. I hammered my hands for decades. In fall of 2009 I noticed a bump that wasnt going away, and a trough under my pinky on the other hand, and soon discovered online descriptions of Dupuytrens. I am an avid guitarist and for that reason I sought out DR Seegenschmiedt as the medical options in US for preventative measures seemed non existent. So I went to Germany in Spring 2010 for part 1 of 2 visits to the Hamburg clinic.
Its been 3 years now. My hands have only progressed a very little bit. A node on the right hand has stayed the same. The trough under my pinky on left hand has gotten a bit more pronounced, but nothing very significant as in debilitating. It is a line of gristle extending about 2/3 to my wrist, with a chord going up the finger to the first knuckle. I have nodal areas in the web of each thumb. Those areas were deemed best left outside the treatment area as Dr Seegenschmeidt was conservative as to how much of both hands should be treated. Those two web areas do feel a bit tight, but nothing that has noticeably contracted.
I stretch my hands alot. Nothing too painful. I stopped alchohol intake as I understand it may be a contributing factor. I work just the same. Where I never used to wear work gloves, now I might. I dont baby my hands in any way accept not to pound them directly. I do a lot of hammering, ground work with yard tool, digging tools like picks and rockbars, etc. It is an occupation and lifestyle I wont leave.
My feeling is that the Hamburg treatment greatly reduced the onset rate of dupytrens. I play guitar as I used to. I work as i used to.
Dr Seegenshmeidt was very knowledgable and friendly. The Hamburg staff were excellent. Both trips were enjoyable as Hamburg is a nice location. I rented a bike and pedaled all over the country side.
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) they hurt a bit. After the radiation it didnt cause any pain anymore.
