Welcome to our club humana. If you are going to develop a cancer like disease this is the one to get. Non life threatening and limited as to where it will spread.
I am a 58 year old male and I first developed the DD in my late teens. Of course I didn't know what it was and none of the medical people I saw had any idea what it was until I was in my mid 30's. I had surgery on my left hand 20 years ago and over the past 5 years I have had NA twice.
While the DD has caused me to knock over the occasional glass of wine it has not restricted me from any activity and I am probably more actively involved in sport now than I was 30 years ago.
The good news is that you now have a range of treatment options and a forum that allows you to see the approach that others are taking. Up until 5 years ago the only treatment I was aware of was surgery.
That contracture between my index finger and thumb has been there for 2-3 years - according to Prof. Seegenschmiedt in Hamburg, Germany. I didn't notice it until after I was diagnosed with DD a little over one year ago by a local (Oregon) orthopedic surgeon. My first observation (which prompted me to find out what was going on) was a small nodule below my ring finger. I've since had radiation treatments in Germany - both hands. My left hand also has a cord between my index finger and thumb; but it's not restricting my span as the one on my right hand does. They seem to have stabilized since my treatments.
By the way, my father is Ukrainian and my mother is German. I'm 59.
Thank you for your replies! I instantly feel better. I'm a xray technologist specializing in mammography and I also work in general radiography and I'm having problems with griping and fine motor function, all of which I do all day @ work. My right thumb is constantly working against this cord and I have unbelievable cramping in all the muscles/tendons surrounding my thumb. On top of that the carpal tunnel symptoms are creating quite the uncomfortable work environment. I've done physio with ultrasound, and I have a brace which limits my thumb movement so I can semi function at work. Anyone else have pain?
switcombe:That contracture between my index finger and thumb has been there for 2-3 years - according to Prof. Seegenschmiedt in Hamburg, Germany. I didn't notice it until after I was diagnosed with DD a little over one year ago by a local (Oregon) orthopedic surgeon. My first observation (which prompted me to find out what was going on) was a small nodule below my ring finger. I've since had radiation treatments in Germany - both hands. My left hand also has a cord between my index finger and thumb; but it's not restricting my span as the one on my right hand does. They seem to have stabilized since my treatments.
By the way, my father is Ukrainian and my mother is German. I'm 59.
Sharon
So you had DD on the ulnar side of your hand 1st then the radial? Is Germany the only place to recieve alternative treatments?
humana; For you situation NA could be a good option. Should relieve the pressure that is causing the cramp and other problems with you hand.
Only takes about 20 minutes and you can use you hand almost straight away although you need to keep it dry and clean for a few days to avoid infection. So perhaps 3 days off work.
With NA the condition will probably return over time but you simply do it again or consider RT when you feel the growth is starting again.
switcombe:That contracture between my index finger and thumb has been there for 2-3 years - according to Prof. Seegenschmiedt in Hamburg, Germany. I didn't notice it until after I was diagnosed with DD a little over one year ago by a local (Oregon) orthopedic surgeon. My first observation (which prompted me to find out what was going on) was a small nodule below my ring finger. I've since had radiation treatments in Germany - both hands. My left hand also has a cord between my index finger and thumb; but it's not restricting my span as the one on my right hand does. They seem to have stabilized since my treatments.
By the way, my father is Ukrainian and my mother is German. I'm 59.
Sharon
So you had DD on the ulnar side of your hand 1st then the radial? Is Germany the only place to recieve alternative treatments?
The radial side involvement was probably there before the ulnar, but I didn't notice it. Cords generally take longer to develop, whereas nodules seem to appear within days - at least that my limited observation from my own experience and from reading on this forum.
Look under the treatment tab to find locations for physicians with years of experience in treating DD.
humana Based on the feedback so far, it sounds like you have not yet found the right doctor to work with, so I hope the London Ontario consult is helpful.
The other things that occur to me is that perhaps your work is an aggravating factor. Also there are a few reports on here of DD first appearing after carpal tunnel surgery or the surgery causing a flareup in an existing condition.
'Look after your hands' may be easier said then done in the short term, but worth considering what you can do to ease further any ongoing strain on your hands, so that you can avoid the CT surgery and minimise further aggravation of the thumb condition.
I've got an update. All of my referrals were refused, I tried all of the large centres in Ontario, London, Toronto and Hamilton. I was told that there are doctors in Niagara that can help me. I found Dr. Huq who trained with Dr Binhammer and he diagnosed me with Dupuyten's diathesis. I asked about NA and he did not recommend that procedure in my instance because he felt the cord would return with in the year. Any insight?
I don't think that anybody can individually predict recurrence for any of the available procedures. Trials yield valuable avarage data but the individual spread is huge.
Wolfgang
humana:... I asked about NA and he did not recommend that procedure in my instance because he felt the cord would return with in the year. Any insight?
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