Thanks for your reply Mary.
I do more than massage as I do Reiki at the same time, which is helping. I do not want to let it get so bad that I need surgery.
Brian's post of the collagen reducing injections seem to be the best for me, as I have a compromised left arm and would have to have a general anaesthetic.
OK, the Viking disease theory has been debunked but it is more common in Nordic countries and NE Scotland for some reason, which is actually quite hypothetical. However, more important is the fact that you draw attention to newer treatments. The e-beam broke down the small lump in my middle finger but I have never had a lump as such in my index finger. I had no need for any kind of cast or splinting with that treatment although I was forbidden to do any hard physical work with that hand, however writing and typing were, for instance, unaffected.
I have found out, trying to lend Jane a helping hand since we have known each other here on SFN for a couple of years now. Here it is known as Morbus Dupuytren. Needle aponeurotomy, aponevrotomy or percutaneous needle fasciotomy (three names, same thing) has been popular and most commonly used by rheumatologists here in France for about 20 years but has recently slowly begun to be replaced by collagenase injections. The NA treatment can be performed on one hand at a time, takes 15-20 minutes with or without light sedation. There is no incision and no sutures necessary. A light dressing is applied and the fingers can be moved immediately. In fact, success seems to be moving them away from invasive surgery and radiation therapies and NA is still most popular but the injections are becoming far more easily available.
Xiaflex (collagenase clostridium histolyticum) is the correct name for the non-surgical collagenase injection treatment for adults with Dupuytren's Contracture with a palpable cord (causing an around 45° bend). Xiaflex is a prescription medicine which is injected directly into a Dupuytren's cord. No incision or open surgery is necessary. The procedure is done in a rheumatologist's surgery/office and does not usually require therapy visits after treatment. The Xiaflex 'dissolves' the cord that is causing the finger to bend. In fact, it would appear that far more specialised centres offer NA or Xiaflex treatments than anything else, many local hospitals still offer surgery because they lack the specialists it seems. However, both treatments are actually far more easily available and accessible than in the UK.
That Jane offers you a better option than your doctor who it appears, which may not surprise people, to be a little behind the times. That is far better than when I had treatment , quicker and easier from the looks of both.
Had it for A long time, no better no worst, surgery is the only treatment, Maggie Thatcher syndrome, forget all the herbals, won’t do you any good, sorry if that’s unkind, regarding the Viking thing, I’m scots, never did the raping pillaging thing, well not that I can remember, did you here about the Indian dad who attacked his daughters rapist’s dangly with some red hot tongs…wow…no more rapist…
I have had Dupuytrens Contracture for over 15 years and am 49. No history in my family that I am aware of. The Viking theory has pretty much been debunked now. I have had a splint applied to my hand which I had to wear at night, which frankly was a waste of time. The surgeons waited until my little finger was almost at 45 degrees before operating and I had a palmar fascietomy of the finger (at that time my palm was unaffected). This surgery involves removal of the thickened tendon and a skin graft down the length of the finger. That particular finger is now highly unlikely to ever be affected again. I had this done about 5 years ago and there is no problem with that digit. The surgeon was one of the leading specialists in this disease: Harry Belcher in the UK. See this website for details on that treatment. My finger was in a split and bandaged for about 6 weeks and the recovery was a bit painful but now my finger is as good as new but sensitive to heat.
For those who have a very defined thickening which has not spread into a mass and is clearly identifiable, there is a new non surgical treatment again developed by Mr Belcher which is getting great reviews. However I don't think the French are up to speed on this yet.
http://www.spirehealthcare.com/tunbridgewells/xiapex-treatment-for-dupuytrens-disease/
This treatment is in the form of an injection which breaks down the collagen in the thickened area and allows it to be snapped, therefore reducing the claw type effects of the disease. I would recommend this option before surgery.
I quite soon after my finger treatment had a lump appear in the palm of the same hand (the other hand is unaffected touch wood) and in January this year had the lump removed by surgeons at Kings College Hospital in London and my hand is now completely flat. The option for the injection was not possible as the lump was large and undefined, rather than a clearly visible thick line. Post surgery I had a palm cast and bandages which were removed after 2 weeks and then the stitches were taken out and I did stretching exercises on my hand. One finger tip tingles for a month but is now completely normal.
I will have to have repeated operations in future but at moment hand is lump free.
The French are not as far advanced in treatment as the UK and if you have any way of getting an appointment with Mr Belcher or another specialist would recommend it. I think there is a specialist Dupuytrens centre in France somewhere - you might have to insist on being referred if things get bad, or at the very least you will be referred to a hand surgeon. I don't think the injection option is yet available in France but if it is, I would recommend that as the first step.
The massage is a nice idea but unlikely to stop the progress of this disease in long term.
Mary
Nope, but sympathy and understanding from my left arm to yours- no irony or sarcasm intended.
The lumps are on my left hand which is on my left arm which is weak after having had a mastectomy.
I don't think you have had that one yet Brian!
Haha! I must say I have not crossed my fingers on my right hand properly for two decades. The tip of my middle finger rests on my index finger nail. Also, pointing at things is a little off line. So I try to use my left hand, mind you that was a drag the months I was in slings when I broke the shoulder.
I only have two bumps on a tendon at the moment, so am keeping my fingers crossed, whilst I can!
Hope it helps. Anyway, the bottom line is that having seen my father having few if any 'problems', especially as a builder, and I have only a tiny little bit, don't worry.
I do my own Reiki, watching tv, being in bed and the car, so it is easy for me.
In the UK they are or were standard treatment two decades ago. They seem to be established means of preventing progression and the e-beam certainly seems to have worked for me given how long it has been. No doubt you had the same thought as me about arthritis, which is why I went to my GP and had a couple of x-rays before I was passed on to the right department. I was seen by a city-suited specialist who did not convince me, but when I went back and saw a young very dynamic one who said exactly the same things in a more relaxed and convincing way (i.e. not trying to force me to do as he said as the other did) I still needed much more convincing. I did not fancy the radiotherapy because it was still suspected as having negative affects on bone marrow if done too often. In fact, when I decided it was still reluctantly.
Anyway, I had sessions five days a week for two weeks, repeated after three months and then the measured contraction was reduced to slightly under the test standard, probably a thick knitting needle would have passed under both fingers and so it has remained. Predicted progress then was something in the region of one or both fingers curled in toward my palm in two years. Both specialists were very clear that that was a possibility and not a certainty since the contraction cannot be so precisely predicted.
Anyway, when we moved to Swansea in 2004 I never even mentioned in to the GP although it would have been in my file and here never said a word to anybody because it is thus far not necessary. As you say, progression is not the same in all people which is why they cannot predict, however I was told that no treatment is a cure but a remedy and the permanence is simply unpredictable. Having been told that the surgery, which is quick and simple, is a one off treatment I kind of saved it for later which has thus far and perhaps never will be necessary. As said, it has little impact on what I do but twiddly little things and for that reason I am happy about the treatment I received rather than surgery. However, I do remember that the younger specialist told me that surgery is the cheapest treatment although I was an NHS patient, but was adding that because of waiting lists (then was better than now, of course) and how expenditure had a serious input into what specialists could offer. I could have had an operation inside two weeks but once I decided to try the e-beam a few months later had something like eight months waiting time then in 1996.
So, find out more before opting for any specific treatment if you have the 'production line' treatment feeling underlying what you have been told. Also, I have no need now, but do lots of web searches for treatment information and details which I wish I had had back then. Wish you well with it, but on the whole I would say relax and do it in your own time rather than be pushed by the medics. Reiki may well help, my problem at the time was that I was travelling every few weeks and thus never consistently available for an unbroken course of treatment. When I had the e-beam treatment I even fitted two trips in during the three months, working to my diary. I suspect you are far more consistently available than I was.
When I looked this up on the net, surgery was the answer offered and the earlier the better. My consultant agreed with this, but as I said the progress of the problem is not the same for all people, so we will wait and see.
Why radiotherapy or electron beam?
I was offered radiation therapy at Papworth Hospital but did not fancy it, however climbed down and had some electron beam radiography which appears to have at least slowed down the progression of the syndrome.
Which tests have you had? I had the one to see if my right hand could be placed completely flat on a table. That is to see if there is a space between the table and part of the hand as big as the thickness of a biro. They explained that it is considered positive and treatment may be required if the pen slides between hand and tabletop. Thus far, certainly since the e-beam treatment, that has not yet happened. The warning they gave me was that finger joints may become fixed and rigid which happened to my middle finger for a while. A series of massages and acupuncture eased that off. It was awful. My finger stayed rigid in the course of doing something, then the joint popped very loudly when it was released by slapping my hand on a hard surface. The doctor told me to stop that because it would damage the tendons and joint, thus making treatment if ever needed, difficult if not impossible. Anyway, touch wood, that was the only 'problem' I have ever had and has never returned. Just think though, Margaret Thatcher had it and that was in the hand she used to ball into a fist and bang on the table when stressing a point. Reagan had it too, several well known cricketers, a couple of pianists and a few guitarists, most of whom neither had treatment and continued/continue to work.
So, it depends on how it develops. However, as regards surgery I was told by a couple of the people at Addenbrookes Hospital that until a finger becomes quite crooked and inflexible it should be no more than a consideration and then quite some after more than 20% bending toward the palm. If other therapies work then stick with them. Surgery does not guarantee a permanent or long term solution and per finger should only be performed once, so if going for it wait until it is necessary. It has been since the mid-90s for me and as I said, it does not really cause me any problems other than things like the bottle tops so I let it go.
This was how it was said to me, if I remember correctly.
Apparently it can be just a small amount of thickening of the tendons or go on to contract markedly.
I have no problems putting my hand down flat and am hoping that I will not have a lot of further thickening.
I have been offered surgery and am wondering if anyone has had experience of this.
I think you mean Dupuytren's contracture. My pointing (index) and middle finger have been affected by it for nearly 20 years. It can be a bit painful at times. I cannot make a balled fist any longer and sometimes cannot do things like open the kind of tiny screw top bottle that things like vanilla essence are in. Reiki was tried years ago without much success, my kinesitherapist has given my fingers occasional treatment but since it began I have never made either finger straight. I can still touch type and do most other things with tools or gardening. One adjusts to it and personally apart from my knuckles aching after doing hard physical work it does not bother me. It is apparently quite common, certainly my father had it and he was a builder who worked into his 70s. In the NE of Scotland where mostly men have it, it is known as Viking syndrome because it occurs a lot in areas where people probably have a predominantly Nordic ancestry.
I don't know if that helps much. I mostly don't even think about it and it only drew my attention when I strung Depuys Trens together and realised what I think you meant.