The first doctor, who had performed the Xiaflex enzyme injections on only 6 patients (but was an “in-network provider” with my medical insurance company) and had worked with the physician in charge of the Stanford Xiaflex trials. This doctor recommended two separate treatments with 2 vials of Xiaflex. With each treatment there would be a visit for the injection (one location) and then a second visit the following day to have the chord broken and a splint provided. After 30 days the second area would be treated and the process repeated. A doctor in San Francisco who has treated more than 20 patients was requiring 4 visits, one for consultation, second visit for injection, third visit for hand straightening, and fourth visit for fitting of a splint.

As neither of these doctors had extensive experience with NA I had doubts as to their medical advice on whether Xiaflex was the best approach in my situation. I decided to take a day and travel to Dr. Denkler’s office for a more informed opinion. He is a certified hand surgeon and it was he who performed a NA on my hands in spring of 2007. He has years of experience with NA and has been administering Xiaflex for more than 1 year.

Dr. Denkler examined my hand and based on the location of the chord areas that needed to be released he recommended Xiaflex over NA. Two reasons why, the locations were where there are nerve bundles and at an area where there are no tendons. Xiaflex is more likely to cause complications when injected into a tendon and NA is more likely to cause problems at a location with lots of nerves. How the Dupuytren’s is treated is a judgment call on the part of the physician based on their knowledge and experience, both of which vary widely among the practitioners approved by Auxilium for administering Xiaflex.

Dr. Denkler explained that the high rate of complications with the Xiaflex experienced during trials was that only PIP patients were selected and Xiaflex was injected directly into the PIP area, and so often into a tendon. He will inject the Xiaflex into the area to the sides of a tendon but avoids injecting into the area above a tendon. It is a matter of technique.

Dr. Denkler has injected more than 100 vials of Xiaflex and his approach is quite different than the standard protocol practiced by less experienced doctors. He does multiple injections of varying amounts of the enzyme at specific locations to release the entire section of chord. With my hand the first doctor was going to do one injection at one site, while Dr. Denkler proscribed at least 5 injections at 5 sites with the single vial of Xiaflex. Very different approach and one that is based on his extensive experience.

A month after my NA procedure I went to Germany to have my first round of XRT under supervision of Dr. Seegenschmiedt. Denkler told me that my approach was the best one to have taken. He said that Dupuytren’s was in a part a defect of the body’s own healing processes which was in turn damaged by the XRT. Regardless of the treatment performed to release a chord or PIP contracture, the body would attempt to heal the damage from the procedure and Dupuytren's symptoms would eventually return. XRT delays this “healing” process significantly.

Dr. Denkler also takes a different approach with the straightening of the hand after the injection(s). Instead of 24 hours he waits for one week. The reason for this is that the hand becomes very swollen after the injection as the body works to remove the tissue that is dissolved by the enzyme and straightening at this time is likely to cause the skin tears that are a common side effect of the treatment. By waiting a week the swelling has gone down to the point where this secondary damage is much less likely. Dr. Denkler said that with about half his Dupuytren's patients the hand would straighten on its own and a second visit back to him for the hand straightening was not needed.

Government studies have long shown that with any surgery the more experience the doctor has in performing the procedure the better the outcome and the lower the rate of complications. This is obvious with a fasciectomy or a NA procedure but it likely to be true with Xiaflex treatments too.

Dr. Denkler confirmed the value of XRT in conjunction with any surgical procedure to prolong the length of time between operations. And it means that any recurrence statistics for Dupuytren's need to separate out those people who have had XRT from those who have not as well as the type of release procedure performed and the level of experience of the treatment provider. As many Xiaflex treatments are being done by doctors with very little experience with treating Dupuytren's and not doing NA as well and their patients are not likely to have had XRT, the statistics or anecdotal information about recurrence may prove to be unreliable and demonstrate a high level of variability.

I found a study published in the Journal of Hand Therapy in 2002 where researchers reviewed the cases of 268 people who had received a fasciectomy. The researchers concluded that there were fewer complications and no differences in digital range of motion with the group that did not have "applied mechanical tension" after surgery. They referred to the application of mechanical stress as the use of splints or exercise after the surgery.

This calls into question the use of splints after a Xiaflex injection and hand straightening as has been reported by a number of people. Auxilium Pharmaceutical's medication guide advises patients to "wear the splint as instructed by your healthcare provider at bedtime to keep your finger straight" and to "do finger exercises each day, as instructed by your healthcare provider".

Obviously some of the 268 people used splints and or had exercise and PT but overall those who did had a higher likelihood of experiencing complications and those who did had not better outcomes overall. For people who have already had the procedure this is a moot point. For those about to have either a NA or Xiaflex procedure or a fasciectomy performed it is something to consider.

I had a lot of bits of information and Dr. Denkler took the time to provide the missing pieces and tie it all together which I have attempted to recap. NA is better in some situations and Xiaflex in others but I would expect that some doctors only offer one or the other and so they are using one approach when the other would be better.

My contracture and the chord that needs to be released is in the palm of my hand in the carbal region and at a the intersection with the metacarpals where they connect at the ring finger. According to Dr. Denkler this particular area is one with nerves present but not tendons, so a win-win situation for using Xiaflex instead of NA.

The risks of tendon damage is higher where there are tendons, i.e. the fingers where there are multiple ligaments to keep the fingers aligned. More care and skill is going to be required of the doctor treating this area whether by Xiaflex or NA and it would seem to be safer to use NA than Xiaflex in this area in terms of the likelihood of complications.

There are multiple risk factors with surgery including the frequency required for a temporary procedure like NA or Xiaflex. What no one knows is how often the treatment will need to be performed over the lifetime of a particular patient. If the area to be treated has tendon and ligament tissue that might be damaged the risk of one procedure may be 5-6% but if you do the procedure again in 5 years, and then again in another 5 years, the chance of a complication like an exploded tendon goes up.

From what I gleaned from Dr. Denkler's comments is that he believes that Xiaflex should provide much longer lasting results than NA and that with either procedure the results are likely to last longer if the patient has received XRT for their hands as well. How much longer is anyone's guess. As no one is collecting all the data in this country we will probably never know.

I had XRT for the carpal and metacarpal areas of both hands. The extent of the XRT provided was determined by a hands on palpation of my hands by Prof. Seegenschmiedt and his diagnosis was that the disease had progressed much further in both hands than was suspected by the doctors I saw prior to be trip to Germany.

All of my experiences with Dupuytren's and doctors to date has convinced me that my going to whatever lengths was necessary to see the doctors with the most experience in XRT and NA and Xiaflex was a very smart move. XRT should be viewed as a companion treatment along with NA or Xiaflex injections, much as with cancer treatments a combination of therapies has proven to be far more beneficial than any single therapy alone.

It would be great if one could easily determine how many NA procedures and vials of Xiaflex a doctor had administered to gauge their probable level of expertise but it is not. Auxilium has this information but they are not providing it to prospective patients. I phoned all the doctors in my area and found that none of the Auxilium approved providers had done more than 4 Xiaflex injections and most had not yet done any, and none that also did NA and therefore could be expected to accurately decide which procedure would provide the least risk of complications or be the most effective in my situation.

So I drove 80 miles to meet with the closest doctor who had done 6 Xiaflex injections and did NA as well. This was the doctor that advised me I would need to make 4 more visits with 2 vials of Xiaflex for the treatment. I chose to get a second opinion from Dr. Denkler and drove the 116 miles through SF bay area traffic to his office. His advice was to get the Xiaflex injections and that my treatment would require no more than 1 vial of Xiaflex and that most likely I would only need to make 1 more visit to his office.

I have more than a dozen doctors within 30 miles of my house that are approved to administer the Xiaflex but I strongly believe I would be foolish to use any of these physicians with their lack of experience with Xiaflex or with treating patients with Dupuytren's. Had it been necessary to fly to Seattle or San Diego or Denver to see Dr. Denkler I would still have happily done so to have the benefit of his experience with my own diagnosis and treatment.

My XRT in Germany was combined with a nice vacation in the Essen area. For NA one could easily do the same with a mini-holiday in San Francisco and if the diagnosis was to have Xiaflex injections instead of NA one might have to make a second trip to the area, but that would not be so very terrible. Regardless I would recommend seeing a doctor who does both Xiaflex injections and NA and so be able to have a better shot at getting balanced and informed medical advice.