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Another month, another link in the chain
The NHS moves, but it moves in slow, discrete stages.
It goes something like this:
1. Realise something is wrong with hand. Initially, misdiagnose likely cause and have doctor agree with this diagnosis. (Not totally doctor's fault as I added it as a question at the end of a consultation about something else)
2. Realise that the problem was getting worse. Speak to Douglas, who, after some research, identifies it as Dupuytren's.
3. Back to doctor. Asian doctor has never seen it before (Dupuytren's is very rare outside of Europeans) but calls in another doctor for a second opinion. Second doctor refers me to a radiographer.
4. See radiographer. Radiographer confirms that it is Dupuytren's. Writes letter to Doctor.
5. BAck to doctor again. Doctor referes me to hand specialist.
6. See hand specialist. Hand specialist (at last!!!) refers me to a radiographer who may be willing to discuss the possiblity of radiation therapy which is what I knew I wanted several months and many referrals ago.
7. Don't yet know when I'll see the radiographer - it seems to take about a month for most stages in this chain (though seeing my local doctor is only a few day's wait). Radiation therapy for Dupuytren's is not normally done in England, though it is popular in both Germany and Canada. People here don't seem to be aware of it. The hand specialist had heard of it, but seemed unaware of the success rate. Te ten-year follow-ups show that 84% of people treated had no further progression of the disease. But you have to treat it EARLY to get this % success. (There are side-effects - dry skin can be a long term problem. But I'd rather be applying regular hand cream than be waiting for surgery after having my finger lose 15 degrees of movement. That's the point they normally operate at - but surgery is not always a permanent cure and the contraction would get worse than that if untreated.)
It goes something like this:
1. Realise something is wrong with hand. Initially, misdiagnose likely cause and have doctor agree with this diagnosis. (Not totally doctor's fault as I added it as a question at the end of a consultation about something else)
2. Realise that the problem was getting worse. Speak to Douglas, who, after some research, identifies it as Dupuytren's.
3. Back to doctor. Asian doctor has never seen it before (Dupuytren's is very rare outside of Europeans) but calls in another doctor for a second opinion. Second doctor refers me to a radiographer.
4. See radiographer. Radiographer confirms that it is Dupuytren's. Writes letter to Doctor.
5. BAck to doctor again. Doctor referes me to hand specialist.
6. See hand specialist. Hand specialist (at last!!!) refers me to a radiographer who may be willing to discuss the possiblity of radiation therapy which is what I knew I wanted several months and many referrals ago.
7. Don't yet know when I'll see the radiographer - it seems to take about a month for most stages in this chain (though seeing my local doctor is only a few day's wait). Radiation therapy for Dupuytren's is not normally done in England, though it is popular in both Germany and Canada. People here don't seem to be aware of it. The hand specialist had heard of it, but seemed unaware of the success rate. Te ten-year follow-ups show that 84% of people treated had no further progression of the disease. But you have to treat it EARLY to get this % success. (There are side-effects - dry skin can be a long term problem. But I'd rather be applying regular hand cream than be waiting for surgery after having my finger lose 15 degrees of movement. That's the point they normally operate at - but surgery is not always a permanent cure and the contraction would get worse than that if untreated.)
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http://www.needledup.com/
See my other comment below.
Needle aponevrotomy
It's used for more advanced stages of the disease than mine. It's used a lot in France and is starting to catch on a little in America. It's not totally risk-free, but it's a lot less invasive than surgery.
There's also factors relating to recurrance of the condition, but I'm still surprised it isn't more widely used as one of a range of options.
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