I was just diagnosed with Dupuytrens at the Hand Clinic at St.Johns Hospital, near Livingston in Edinburgh, Scotland. The consultant surgeon at the Department of Plastic Surgery told me that surgery and a skin graft was absolutely neccessary in my case...He told me that surgery was my only option.

He said I needed the surgery and skin grafts now, and that I would most likely need to come back for surgery and grafts in a few years because the disease would definately come back. He also said that after the second time it came back he would probably not be able to operate again because of too much scarring and tissue damage. He said that eventually he would have to amputate my little finger when the symptoms of the disease inevitably returned.

The last thing I remember him saying to me was that the disease was likely to spread to my other fingers and that, in time, I would probably have to loose some, if not all, of my fingers. He said..."We will be seeing a lot of each other in the future and we will probably end up just like "old friends".

I have to admit I was shocked.

He said my case was a bad case because I was a 38, male and the little finger on my right hand had already contracted. I have a small palm nodule just below my little finger, a chord that runs down to midway on my palm and two small nodules either side of the mid-knuckle (PIP?) of my little finger.

My little finger is straight like all my other fingers...all the way to the mid-knuckle...but then the last two sections of the finger are straight but contracted inward...the bent bit is now at about 40 degrees from the other fingers of my hand starting from the mid knuckle.

I noticed the little "nodule" on my palm over 10 years ago, but I just thought it was a callous from years and years of carrying heavy scuba diving tanks by their on/off valves and turning the valves on and off when refilling them.

My end of my little finger started to slowly contract about 5 years ago but I just thought it was arthritis. Since it wasn't too bad I just thought it was part of "getting older". I was recently having trouble typing with the finger since it was slightly bent and dragging on the keyboard, so I decided to go and ask my doctor. He referred me to the Hand Clinic which was when I found out that I had this "serious" disease and I had to accept that I was eventually going to loose most of my fingers.

I found this site yesterday and I read with interest about the procedure called needle aponeurotomy(NA), or needle fasciotomy(NF). The consultant I saw never mentioned this as an option. He said that surgery was my ONLY option...and until yesterday...I believed him.

Until yesterday I was completely resigned to my fate. I thought that if I had to loose a finger or two, (or all), it wasn't so bad. There is so much suffering in the world....who am I to complain about a few fingers here or there?

Anyway, after reading everything on this forum for hours and hours, I called today to cancel my operation. I wanted to ask the consultant why he didn't discuss ALL the options available to me. However, the consultant wasn't available.

I am hoping that some people from the UK will read this post. I would like to know if they have also been dealt with by UK National Health Service Hand Clinic consultants in the same way.

I would also like to hear from anybody who has been to France and had NA treatment for a similar "serious" case of this disease. I don't even know if my case is all that bad.
I would like to know whether the NA treatment has been effective for them.

I am hoping to go to France and at least try NA. If it doesn't work...it seems I can always go back and become "old friends" with the NHS Consultant... and get my fingers cut off.

Thank you for taking the time to read this. Thank you very much to everybody who has contributed to this forum.

Thank goodness that I found this site before it was too late :-)

jona,
I think you were told of the worst case scenario and you understood it as being inevitable. Many cases do not progress much after the initial contraction. But, being young your situation has a better chance to contract further. The sooner you deal with it, probably the better.
If you have surgery, there are thousands and thousands of successful surgeries. My surgeon told me the same thing. He didn't need to do a skin graft, but he did tell me that it might be necessary. My finger is now (after 3 years) perfectly straight and normal. I had PIP involvement also.
So if NA is not an option, and there is a chance it might not be, then go with surgery and get the best/most experienced surgeon available. Then whatever happens, happens. Do your therapy, it is extremely important. Ask questions.
Then just appreciate that it is not your heart,liver colon etc., things could be much worse than Dupuytren's.

Jona, My surgeon in Belfast told me the same story. My ring finger on my right hand was the current problem and at 47 I was considered young and at risk of speedy recurrence. The Surgeon advised I could have 2 surgeries and then he would have to remove the finger. I produced details of the NA procedure to him and he rubbished it. His arrogance, the 1 hour appointment delay and his style and general disarray made me all the more determined to investigate all the options. I eventually decided to go to Paris December 2004. The NA was a dawdle and while mobility is not 100% I can wash my face with a flat hand and the cords are less noticable. I will definately use NA again only sooner next time.
My NA Treatment was all of the positives and none of the negatives reported on this site. Dr Badois was extremely professional. The treatment took 15 minutes and was almost painless. I was able to use the hand for light tasks immediately and after 2 weeks all heavy work resumed.
I have cancelled my thankfully 14 month delayed appointment for surgery and advised the surgeon of my successful NA treatment and the NICE guidelines, I also offered to send him before and after photos but have not been taken up on this. Good luck in Paris.

Hi and a big thank you to everyone who responded to my post :-)

To Christine...Thank you very much indeed for the link to NICE. I found the guidelines (in PDF form) by going to http://www.nice.org.uk/ and doing a basic search under Needle Fasciotomy. I printed out the guidelines and I am going to take them and show them to the consultant hand surgeon. I am going to post his reply...and then go to France. :-)

To Sean...Thank you for letting me know about your surgery. I am pleased that your finger is straight now and still ok after 3 years. You are right that there is a chance that NA might not be appropriate in my case. I might still need surgery on my finger...but I am going to try the NA first. You are also dead right...so many people have to live with much, much worse than Dupuytrens. I think it is imoprtant to keep things in perspective :-)

To Linda...Thank you for sharing your experiences. I'm so thankful that I found this site. I was just in time since the very next day I was booked for the full dermal fasiotomy with skin graft. I cancelled it. I would really like to know how you get on with your skin graft. Did they use "original" CWS..."crabby witch skin?" :-) I don't give a "hoot" about your spelling, but I do hope things look better now they have taken off the cast. Please let us know *hugs from jona*

To Oliver...It seems that your experience was exactly like mine...I had a 2 hour wait for my "consultation", but unlike you, I went into the appointment with no idea about Dupuytrens and possible treatments ie:surgery or NA. After the diagnosis, I came back home in a daze. I found this site and did my homework. I phoned to cancel the surgery and have a word with the consultant- a Dr.Hamilton. He was not available for comment. I spoke to another consultant- a Miss Yvette Godwin - She looked Dr.Hamiltons notes and she told me that surgery was my only option because his notes said that my little finger was contracted at the PIP joint by 90%. Dr.Hamilton gave me a complete shock with the worse case scenario. He did not discuss alternatives to surgery...and what is worse...his notes are wrong. My little finger is not contracted 90% at the PIP joint...it is contracted 45% :-| I still may need the surgery...but I am going to try NA in France first. Thanks for wishing me luck.

To George B...Thanks for the e-mail. I think you should post your site with the pics of your hand before and after NA in this forum. Many thanks from jona

To Steve G in H...Thanks for the e-mail. Please send me your PDF files. I will take everything to show the consultants who treated me. Like you, I am going to try the NA in France...and try some good food and good wine as well :-)

To agdg...Thanks for the e-mail. I am just about to read the thread on D + insulin. I am not sure if any of it applies to me but I will let you know via e-mail if it does. I am going to France...and I have a strong feeling that I will return quite a few lbs heavier :-)

To Diane...Thanks for the e-mail. My little finger is bent 45% at the PIP joint. The finger is straight after the PIP, so the distal is not contracted. Sorry if my original post was unclear in describing my symptoms of D. I will reply to your e-mail anyway.

Thanks again to everyone who took the time to reply to my post :-) I will post what happens in France. Good Luck in the future... Love and Peace...from jona :-)

Jona,
Thanks fo response sounds like you are looking into all you'r options. That is great, I'm not sure what you meant.
If it means it makes a person crabby yes! but I'm kind of sure you are meaning something different. I'm mostly without pain with the graft thing I know 2 years ago I'd be really not happy. given my path it's not bad I am still a little out there lost about out come. You seem to be going ahead and I pray in a good for yu direction. I will be waiting to see your outcome. A hug for you as you are so intuitive. THANKS!
Linda