Surgean and website both very fuzzy about post-treatment.

I had reasonably severe Dupuytrens. The treatment was described as "somewhat uncomfortable and the post- treatment as "minor discomfort" with normal use of hand"
I was given 11 injections each painful, the doctor put a soft splint on and also bound a cold pack over that. Within an hour my hand was very swollen and painful. I could not lower it without it throbbing. I called the doctors office who waffled and said something unhelpful like "different patients react differently" and "use the hand normally" Actually I found their reaction offensive. Back to the "patient failed the treatment" approach.

Two days later, the doctor's reaction was "you shouldn't have pain" and gave me a prescription for precast. He then heavily aneathesized my hand and ruptured the cord - magic! my hand was flat.

Any manipulation of it was very painful so he gave me another injection - commenting that my hand" would be numb for a long time" his point being?

I also had a deep wound at the bottom of my ring finger.

He the referred me to an occupational therapist - "sometime in the next week" Fortunately I called them immediately and they were insistent that I come in the next day - and in fact rearranged their schedule so I could.

They made a splint, gave me exercises and guidance on wound care. Their experience shows that my body's reaction are normal and that healing from the treatment often takes many weeks and consistent work.

Now 3 weeks later, my hand is still swollen and stiff with some pain trigger points. I go to OT twice a week, do hand exercises 3 times a day and wear the splint on and off during the day and all night. I try to use my hand as much as I can.

I no longer need pain medication. And my hand is very straight. In someways its functionality is better than before and in others ways worse.

The hand has more nerve ending than most parts of the body and the treatment has to damage some of them. My major issue is the lack of concern and information about post-treatment experience. I realize there can be a range of reactions but patients are due realistic information about that range.

Surgeons are notorious for ducking and diving about the consequences of their work - which may just be lack of training or that there should be another source as they can't hack it.

I no longer trust my surgeon or his office as a source of advice. (nor the Endo website) I think he is a competent and experienced technician and I will trust him to treat my other hand - but I will ignore his delusional prognosis on post -treatment.

just spoke to Pharmacist at Auxilium Paharmaceuticals.

Here is the contact info: https://www.xiaflex.com/contact-us

Essentially said that it was my failure to do research ahead. All the info is in the "Prescribing Information" which I should have read before treatment - all 42 medical language pages of it.

And that I should have taken that to my doctor to have him explain it. They "hope" that the doctor will cover the post-treatment expectations with the patient BUT they do not cover that in the doctor training at all.

Reading the sections on "Adverse Reactions" and Clinical Studies, my experience is well within range.

Just as a quick bench mark 81% of patients recover within a month.

So I should have managed the doctor - judged the medical information myself - and estimated the impacts myself.

HI CM Swann . Over the years I have had splints made both in Germany and in Australia after NA. All medicos have advised not to wear the splint during the day and only overnight. Regards.

Hi CMSwann,

I feel your pain and think your experience unfortunate, whether considered the norm or not it should not be so, and the fact that your hand is now flat is no real consolation though this is somewhat what was sought.

I feel that information is in want on all fronts - No point my elaborating, what I will do is try provide advice on a remedy that I sincerely feel would have assisted your recovery and IMO more than probably still could.

Very simply, it's Fresh Ginger Root - you want to apply it topically to your hand at least twice daily (Morning and Evening) if not more often than that.

Going by what you have said I believe you would benefit from ingesting it too - either by eating raw or making a Tea from it which you can have either hot or cold throughout your day - to assist in combatting other general inflamation of the body and improving blood circulation.

*** the only times I would advice caution is if taking in conjunction with any blood thinning medication (including aspirin) and when you have a fresh split/weeping-wounds as Ginger improves blood flow and might be detrimental if bleeding or clotting is an issue ***

I believe that rather than a disease Dupuytrens is syptomatic of problems elsewhere that might have no apparent relation, the results of which cause general inflamation in the body, bad blood circulation is also a major contributory factor.

Ginger has anti-inflamatory properties, is a source of beneficial antioxidants and helps improve blood circulation and so should prove beneficial in assisting you all round - many already use it to treat osteoathritis and rheumatism to good effect.

Do bear in mind, I am no medical practitioner, just imparting knowledge I deem beneficial and in want - all said I believe you would be doing yourself a massive favour by giving it a try.

I wish you a speedy recovery.

Edited 06/05/15 13:53