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Do I have Dupuytren's disease?
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09/04/2008 11:23
PEV

not registered

09/04/2008 11:23
PEV

not registered

Do I have Dupuytren's disease?

My GP has recently diagnosed me as having Dupuytren's
However on seing the ion line mages showing examples of the condirtion I am puzzled as in all the examples the fingers are bent inwards (as if the person is closing their finger)
In my case I have two nodules apparently on tendons in palm of hand and the worst affected finger (3rd finger) is starting to bend up at the last joint. To clarify this, - if I have my hand palm down on a flat surface the affested finger sticks up away from the flat surface. Is this still Dupuytren's?
My doctor does not seem worried about my condition al all and seems to be adopting a 'wait and see' policy.But if the lumps in my palm are not Dupuytren's I am obviously concerned as to WHAT is growing in my hand.
Hope someone can advise.
Thanks
Ray

09/04/2008 15:33
socal

not registered

09/04/2008 15:33
socal

not registered

Re: Do I have Dupuytren's disease?

yep, sounds very much like DC. your at the right place. can be anything from nodules, lumps, cords, dimpled or puckered areas, to full contractions and everything in between. can be in fingers, palms, thumbs, feet. i pretty much have all the above. most GPs will give the same advice, to wait and see(insurance speak for denying treatment). most have no clue when it come to this disease. i have even been to experienced hand surgens, and walked out of their office. they knew nothing about DC other than to cut it out. i walked out when they where not honest with the results of their surgeries(both claimed almost 100% "cured" after open hand surgery, actual odds are up to 80% returning in 5 years). i had open hand surgery 15 years ago. my DC was returning before they took my stiches out!!! and the doc i choose had 35 years hand surgery experience. NA also didnt last, was good for 8 months for me. and my DC is very painful, which is another reason i walked out of one of the docs office, he said DC is a totally painless condition, and wanted to argue that i couldnt be feeling pain from DC as it is a benign fibroid growth. it might be a painless growth, but when it wraps cords and nodules around tendons and nerves, it can be very painful even without any contractions. i hate it when i seem to know more about this disease than most docs i have seen.

09/04/2008 17:04
wach 

Administrator

09/04/2008 17:04
wach 

Administrator

Re: Do I have Dupuytren's disease?

Hi socal, when you have agressively growing Dupuytren's radiotherapy might be an option. It works on nodules and slows down progression, sometimes the nodules even dissapear, specifically when they are "young" and small.

Wolfgang

09/04/2008 21:14
PEV

not registered

09/04/2008 21:14
PEV

not registered

Re: Do I have Dupuytren's disease?

Hi Social
Thanks for the info, even though not too encouraging on the chance of getting a knowledgeable specialist!!
I have been highly recommended to a 'hand specialist' in Windsor who apparently may know about ans treat DC with NA as my condition is at an early stage I wil do as my GP is 'wait and see' and will certainly get another opinion before taking it to the expensive specialist consultation stage (can't get NA on NHS- Uunless anyone knows otherwise IF SO PLEASE LEAT ME KNOW!)
Just to reaffirm although I have the nodules in plam of hand apparently on the tendons and I also have 'Garrods pads' on the joints of the fingers on same hand my finger is slightly bent UPWARDS in other words opposite to the way the joint can bend is this Dupuytrens as all the images I have seen show the affected finger bending in on the palm of the hand?
Thanks again, any more info' opinions greatly appreciated.
Ray

09/05/2008 03:44
diane s

not registered

09/05/2008 03:44
diane s

not registered

Re: Do I have Dupuytren's disease?

Ray
There is a form of Dupuytrens where the end joint of the finger is pulled upwards, known as Boutonierre's deformity, shich sounds like what you are describing. Do some more web searches and you will find pictures. I'm not positive, but i think it can be treated with the NA procedure. Its also possible, though uncommon, to get the downward bend of DC in the distal (end) joint. You might email pictures of your hand to one of the NA practitioners mentioned on this web site and they can tell you if your condition is likely treatable with NA. I did this and got help. good luck.

09/05/2008 06:33
wach 

Administrator

09/05/2008 06:33
wach 

Administrator

Re: Do I have Dupuytren's disease?

Ray, I am not very familiar with the British National Health System but NICE actually approves NA:

"Your doctor may have offered you needle fasciotomy. NICE has considered this procedure
because it is relatively new. NICE has decided that the procedure is safe enough and works
well enough for use in the NHS." - Note that NICE usually calls NA needle fasciotomy.
http://www.nice.org.uk/Guidance/IPG43/PublicInfo/pdf/English

Further NICE papers are linked at [url=http://www.nice.org.uk/guidance/index.jsp?action=byID&r=true&o=11116[/url]

Maybe citing those might help convincing NHS to approve your NA treatment?

Good luck to you!

Wolfgang

Quote:



... (can't get NA on NHS- Uunless anyone knows otherwise IF SO PLEASE LEAT ME KNOW!) ...

Ray




Edited at 09/05/08 09:52

09/05/2008 18:54
PEV

not registered

09/05/2008 18:54
PEV

not registered

Re: Do I have Dupuytren's disease?

Thanks for this Diane s and Wolfgang, much appreciated
Ray

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