The short version: if you want the best, look no further.
Brief background: Having discovered that I had Dupuytren's disease I began
to research the disease by looking at the medical literature, a
The short version: if you want the best, look no further.
Brief background: Having discovered that I had Dupuytren's disease I began
to research the disease by looking at the medical literature, and quickly discovered that a certain Professor Seegenschmiedt had carried
out a long-term clinical study of the use of radiation to treat the disease. Equally quickly I decided to find out everything I could
about radiotherapy for Dupuytren's and Ledderhose diseases, and help others to access the information in that literature. I co-founded a
Facebook group for people who want to know more about radiation therapy for Dupuytren's disease, and for doctors who treat the diseases
with radiation.
The longer version: I live a long way from Hamburg, so I sent some photos of my hands to Prof Seegenschmiedt to help
him assess whether my Dupuytren’s disease was likely to be at a stage where radiotherapy would help. He told me that the photos were
very useful and sent me a questionnaire to fill in and we agreed that I would visit his clinic in Hamburg.
It was not easy to get
confirmation of the date of my treatment from his secretariat, and in the end I booked both travel and accommodation without being sure
that the date I had proposed for my visit to Hamburg would be accepted. This relaxed attitude probably stems from the very flexible
scheduling at the clinic, but it was a little unnerving, and remains the only flaw in an operation that otherwise goes a very long way
to build the patient’s confidence in the therapy.
My appointment with Prof Seegenschmiedt was for 14:30 on a Monday afternoon, but
he was running late and I was glad of having brought something to read.
I found Prof Seegenschmiedt relaxed, welcoming, warm,
communicative, sharp as a tack, an active listener, with a good sense of humour, affable, reassuring, likeable, and capable of working
quickly, surely and without fuss. I felt an immediate contact with him, and had we met in other circumstances - say, a hiking trip - we
would doubtless have become friends. He has remarkably sensitive hands. It's as if he sees and hears with his fingertips.
After a
brief discussion about his clinical trial he asked to see my feet, saying that many people with Dupuytren's disease also have Ledderhose
disease; and so it turned out. Then he took one hand, turned it palm up and gently stretched each finger in turn away from the palm
(i.e. towards the floor). Holding the finger like that, he started with the first phalange and felt carefully around the edges of the
phalange. As he palpated, he drew roughly round the perimeter of the nodules with a pen. Still holding the finger extended, he then
moved to the area of the palm closest to the finger, and explored it with his finger tips, paying special attention to the areas in line
with the gaps between the fingers. He worked towards the lines in my palms, outlining all the nodules he found. He then repeated this
with the next finger, and so on. Finally he moved his attention to the palms of my hands, working first along the space between the
"head" and "heart" lines, and then in the heel of my hand and the pad of my thumb.
I couldn't tell you how long he took, but it was
reassuring just to see how thorough and careful he was, and how he seemed to listen to his fingertips.
Now I know they are there, I
can feel most of the nodules he detected. Where I thought I had three nodules in my left hand, Dr Seegenschmiedt found 10 and a couple
of cords I didn't know about, and where I knew about 4, possibly 5 nodules in my right hand, he discovered 15, and 5 cords I hadn't
detected. We may think we know our own hands, but when it comes to Dupuytren's, it's a job for the professionals.
Having mapped my
hands, he went back over each nodule, and assessed how hard it was. He told me that if it resists as if it were bone (or as hard as a
coconut) he gives that 4 points. If it's hard, but you can detect the slightest give in the nodule, he describes that as the hardness of
a tennis ball, and gives it 3. If it's resilient but still allows some slight give and take, like an orange, he scores it 2. If it is
soft to the touch, like a tomato, he scores it 1. Cords also get 1. He adds them up and if it comes to 5 or 6, he would recommend that
you consider radiotherapy.
He told me that palpation shows him exactly where the disease is manifesting. He then takes a margin of
about 2 cm above and below the most extreme areas, and about 1 cm to left and right, to ensure that all the diseased tissue is in the
target area. This may well mean that the target area will cover the entire hand. If there is evidence of the disease in the phalanges,
he will extend the area to include the next phalange as well. Thus for him, there is no point in constructing a careful and precise
shield for each patient – the areas affected are too diffuse for that – and so a series of pre-milled shields are perfectly
adequate.
He asked me to sign two forms, one saying that he has explained the risks involved and that I understood them, and the
other saying that I didn't want a 24hr cooling off period to think about it. I signed both, and was treated for the first time that week
a few minutes after leaving his office.
My second series of radiation was about 14 weeks after the first. It went just as smoothly.
My hope is that the radiation will stop the disease from progressing, and I believe that even if it doesn’t, I could not have
hoped for a more professional, attentive and understanding doctor, or a kinder and more helpful staff.
Reviewer: |
Username: | Kalense |
Age: | 55 yrs and above |
Location: | Stockholm, Sweden |
Gender: | male |
Operation or treatment: | Radiation therapy |
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