There are many different opinions and experiences noted here, which are all valuable. I have had two Xiaflex treatments and have had improvement on the knuckle joint of two fingers but not at the PIP joint. I am, as Marigail suggested, also going to try NA in two weeks. The regimen will be Xiaflex one session and NA the next. Please note my experience is the needle is the painful part and I experienced no lasting pain from the Xiaflex. I will let you all know how the combination of Xiaflex and NA works but agree get the treatments done sooner rather than later.

My outcome will probably be amputation of two more fingers at the PIP joint, which is better than at the knuckle. At least then the fingers will not impede basic living skills like handshakes.

My biggest regret is letting a surgeon talk me out of trying Xiaflex three years ago. Also, the Xiaflex rep was quite helpful at me first session but we should all note this is new medicine and everyone is feeling their way through it.

Good luck!

Also, I do not see "negativity" here but real experiences involving a disabling disease and painful treatments. The hand is a most sensitive instrument and sticking dozens of needles into them are not fun. Progress after the treatments is rewarding.

I only had the pinky fused ,not sure how it would be on the bigger fingers.When my fingers are all released at one time ,which isnt often my hand looks normal.It looked pretty rough before the fusion.Dave

Hi Putzo,

it's great that your surgery went so well. Bending the hand next day is an excellent result. It took me several nmonths until I was able to make a fist again.

Surgery continues to be an important treatment option for patients with Dupuytren's. Did your doctor talk with you about the chances for recurrence? Unfortunately there is yet no cure for Dupuytren's and recurrene is more or less inevitable, even after surgery. Recurrence is earlier after needle fasciotomy (= NA) than after surgery. Whether Xiaflex has a better recurrence than needle fasciotomy is still unclear, some papers seem to indicate that (and those are understandably promoted by the vendors of Xiaflex) and some papers seem to indicate that Xiaflex is in the order of needle fasciotomy. The main advantages of NA and Xiaflex is a quick recovery and the possibility to repeat those procedures several times. Surgery might be repeated once, in favourable cases twice but that's it.

In any case, you have successfully treated your Dupuytren's and I wish you many years of disease-free hands!

Wolfgang

Putzo:

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As per my previous messages it has been over 6 months since surgery...very happy with results have full range of motion and no sign of return.

This surgery was performed on my left pinky almost to my wrist. The scar is very slight. this was done with a block which means I was awake and aware in hospital for whole proceedure. NO pain No discomfort...freezing was gone in about 4 hours. No after pain other then discomfort of hand being wrapped for 1 day. I could bend my hand next day, and when stitches were removed, all i had was a scar.

I read that some are talking about amputation!!! When I kiddingly joked with my doctor, prior to operation, and said just cut it off, she remarked that would never happen as there is always another way. I know each of us is different, and linked bu D, but there seems to be such a difference in treatments for all.

I live in Canada, and I guess most of the comments are from the States. In Canada Xiaflex has been approved but the doctors are still in discovery mode. the feeling I get is Xiaflex is a short term and surgery will in the end be the only complete removal

My right hand has the disease also in my pinky, along with some nodules in palm...when it becomes to a point something has to be done I will have surgery again as it was no big deal...seems to be a lot of pain asociated with other treatments

My experience

Hi, I have been a member of this forum for a while and have been reading it longer, I have never posted just trying to arm myself with facts and then off to seek help for the condition. I have now decided to write about my experience in Australia.
As a keyboard player I presented with hand problems to a Doctor about 21 months ago, I had been building a room for music and it was after this when I tried to resume playing I noticed a problem. I think its carpal tunnel rest it I was told and after 3 months when that didn’t help maybe it’s arthritis was the view from another Doctor, no-one had still even physically looked at my hand. At the appointment to find out the x-ray results for arthritis, which was ruled out, I said what’s this?, showing the palm of my hand and what I now know is a cord the Doctor said that looks like dupuytren’s I said would that cause it ?, maybe, I was sent me home with a fact sheet. After reading that I thought this must be it the hand bows was one of the symptoms that’s the main one I have, now to find someone for treatment like those listed on my sheet............... fast forward after 14 months 5 specialist and a hand therapist later why so many?, because treatments on my sheet were never offered and they kept saying yes you have got it but that’s not it so I kept trying to find out what then.
As a musician one diagnosis given was focal dystonia I went home maybe that is it, after all they keep saying it’s not dupuytren’s I then researched that and along with some little tests I developed and with information I had learnt from reading this website and other peoples symptoms I said to the neurologists on my second visit I think you’re wrong and then explained why I thought so. They agreed that my symptoms were not typical looking at my hand movements on this second visit (the hand therapist present even thought it looked more like trigger finger)and nerve tests since have so far proven me right but the Doctors involved with this diagnosis don’t totally except that result. I will never know I guess because the only way to find out would be to operate on the dupuytren’s and because I can get my hand flat no-one in Australia can help it seems, there is contracture but not enough to needle the cord I’ve been told but it’s enough to stop me from playing, even the local Doctor I saw last week as I went for yet another referral saw what’s happening as I move my hand, the cord pulling tight restricting the ability to stretch out my hand as needed for piano or typing for example, and added “people do know their body “ but maybe not?.
So last week I saw another Hand surgeon and for the first time they were actually helpful but I still think it will end the same mainly due to lack of treatment options and cost out here. I would like to end with my personal views that my experience has left me with maybe it may help others.
As a 49 year old musician I believe I presented early noticing the change in my hand which I think may possibly have been triggered by the trauma associated with the change of activity during the building that my hands were not used to. I’m of the opinion that some of the Doctors I saw only see the condition when the finger(s) are pretty bent in fact when if this happens to me and if that had been the first time I presented I’m pretty sure that focal dystonia would not even had come up.
They keep looking for the contracture in my fingers it is growing down in my palm more presently I believe causing the palm to bow. When the hand is relaxed, finer control needed to use my fingers for piano is lost I can’t correct the posture needed to play and use my fingers at the same time this is why I think they thought it might be something else but if I stick at it and play for a while it does improve slightly I think it stretches a bit, this improvement alone is not typical of focal dystonia the opposite applies normally but I’m not a Doctor just a dumb arse musician.
The treatments options listed here on this website are never discussed, the most common advice was wait and see, although with the last hand surgeon and if our government gets behind more treatment there is hope that this may change.
They all say the risks.... I don’t know what they think I’m to do it’s not like I’m saving my hand to use in my second life. My income has gone now nothing left but to sell my gear to help pay some bills and forget it. I know there are lot worse things you can get but while I’m waiting for one of those it would have been nice to keep on going in some way and I believe that at the moment in Australia that is harder to achieve than in some other countries.

Attached is a photo for the ages, Regards.

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