I appreciate your opinion, but struggle with your hardened conclusions. You said, "prior to something as painful and invasive as surgery". While that may be your experience, there have been many on this forum, as well as myself, who said that they had very little pain from surgery. And, the surgery is not nearly as invasive as most surgical procedures.
The disease is not rare, as you suggest. My primary care physician knew a great amount about Dupuytren's and put me into contact with very knowledgeable people, and this was 12 years ago. It is necessary to connect with a person in the correct medical field just as any other disease.
I think you are embracing the hype surrounding Xiaflex. It is being promoted heavily with limited long term studies. My surgeon (Dr, Buehler) discussed it with me eleven years ago while it was in trials at Stanford (before it was marketed as Xiaflex). He even suggested at the time that I might get involved with the Stage III trials. I followed the progress through the different trials and it seemed that it had great difficulty making it.
I think you totally misunderstood the comment from Wolfgang. You said, "The comment that a doctor "picking the right patient" is the key is PR nonsense. The Hippocratic oath requires the doctor to treat the patient in front of them."
You said, "the surgeon's motto: "If you can cut it you can cure it" (Dr. Buehler does Xiaflex). Are you going to the right people for your information? I have never heard of any hand surgeon with that attitude about Dupuytren's. It seems that (with your knowledge) you are not always picking the correct sources for your information about Dupuytren's.
Having said that and back to your initial question about insurance coverage. The "smoking gun" and best chance for coverage comes from the Aetna Insurance Company document.
The pain was not during surgery (obviously we are under general anesthesia), but during rehab and trying to keep the splint on for months while the contractions recurred. It also hurt like crazy when the stitches were removed given I have had over 100 of them in three surgeries. I should have been clearer. I also have a lot of pain now, due to compensating for the contracted fingers, in various joints and muscles (wrist, shoulders, back).
One of the worst outcome possibilities for surgery, given the long incisions and they are on your hand, is infection, probably as you know. A great deal of risk is involved that is not found in Xiaflex, which admittedly has other risks.
You are correct in that I have bought into the Xiaflex treatment. Unfortunately, once surgery fails the chances of success from other surgeries declines dramatically. The alternatives are Xiaflex or further amputations. I choose Xiaflex first as really my only alternative and hope.
I have heard the "sayings" I quoted having been around the medical profession for years. General practitioners say surgeons go by the motto "if you can cut it you can cure it" perhaps somewhat tongue in cheek but not entirely with levity.
Sounds like your surgeon was open to trying other treatments such as Xiaflex. That is how they should approach treatment. You are quite fortunate. It is virtually impossible for any doctor to examine a DD patient and predict outcomes with any certainty. As you know it is simply an unpredictable disease and more research is needed.
Perhaps we are looking at different standards of defining rare. DD is relatively rare which is why it took so long to have anyone invest in clinical trials and research. DD was discovered, as many diseases were, in the 1800s and we haven't seen the same progress as other diseases.
My conclusions are hard as you say. I am quite frustrated and wonder how many people go through what I have gone through but are unable for reasons of experience or education to fight for their rights. The reality is if I lived in Canada or most other developed countries, I would have received the Xiaflex treatment by now. The medical-insurance complex in America is quite frustrating. Thanks again!
Tami1962; I see your note about looking for NA with sedation. It seems to me that this would significantly increase the risk of nerve damage. Remember the doctor is working by feel and needs to know if a nerve is touched. Awake you will know instantly as it will feel like an electric shock shooting out the end of the finger.
Most of the time nerves are not touched but that does depend on the location and size of the cord. Assuming no issues with nerves I am surprised that you report so much pain. I have now had NA 3 times on one hand and 2 on the other and the only painful bit was the initial injection each time but this quickly subsides as the anesthetic take effect.
Perhaps you should try a new doctor. If you leave it too long you risk the knuckle fusing and NA can't fix that. You then need surgery.
just a few comments: The website of Mayo clinic is certainly a good source of information. I would have more doubts about dupuytrens-contracture.com, which is a commercial page selling "natural" remedies for Dupuytren's, backed by no reasonable studies. The numbers about recurrence probabilities that you are citing are probably from the manufacturer of Xiaflex. These data were collected under different conditions. So far there is no study available comparing Xiaflex, NA, and fasciectomy on an equal basis. Rather, the paper by van Rijssen at al. explains that the Xiaflex data on recurrence were collected under favourable conditions and van Rijssen et al. then re-calculate their data (which compare NA and and fasciectomy) using the Xiaflex method and find that then NA and surgery provide equally or better recurrence data than Xiaflex. This is only an indication, no proof. But it at least shows that you need to be very careful in comparing reported data from different studies using possibly different ways to measure.
Regarding "picking the right patients". That was meant to be a joke. That surgeon is an excellent hand surgeon who, of course, would help anybody. The point that he wanted to make is that even an excellent surgeon can't assure that there is no recurrence because this disease is so unpredictable. You need to be lucky by picking the right patient. I should have explained that better.
Our disease is, unfortunately, not so rare after all. Nearly everytime I talk to people and explain what it is, someone has friends or relatives who suffer from it. Overall maybe 30% of the people over 50 show some symptoms of DD http://www.dupuytren-online.info/dupuytr...stribution.html. That doesn't mean they all need to be treated but it shows that this is a fairly wide spread disease, at least in the USA and Europe. The reason why it is not attracting much research is that it is not lethal and the treatment so far has been mostly surgical. The advent of Xiapex changed this picture because now a pharmaceutical company offers a treatment option.
Wolfgang
Brian_PDX:... This website is also useful to connect to data and dupuytrens-contracture.com. The recurrence rates I see are 19.3% for Xiaflex, 34% for fasciectomy and 85% for NA.
Doctors should provide access and options for all of these options and the patient make the decision. The comment that a doctor "picking the right patient" is the key is PR nonsense. The Hippocratic oath requires the doctor to treat the patient in front of them. ...
The disease is simply rare and not life threatening. My conclusion has been research began in earnest after Ronald Reagan and Margaret Thatcher contracted the disease. When a former President and Prime Minister are affected it gets people's attention. ...
Wolfgang; The saying that "a good surgeon picks good clients" or words to that effect is not really a joke and I have heard it a number of times in the past. What it really says is that a good surgeon knows when to operate. That is he/she picks the clients that should be operated on and does not operate on clients that should not be operated on.
I think a really important point as too many surgeons choose to cut when other options are available. The good ones suggest other options first - when other options exist. Of course, in many situations, no other option exists.
Regarding comments about recurrence of DD following NA. My experience is that it does come back more frequently that with other treatment but the key point is that there is no limit to the number of times NA can be done. I see it as being like a trip to the dentist every 18 months or so but a lot less painful.
Good comparison! NA can easily be repeated, that's definitely an advantage over surgery. Van Rijssen at al. report in their 5-year results "None of the patients in the limited fasciectomy group who presented with recurrent disease chose limited fasciectomy again.
Twenty-six of 45 patients with recurrent disease in the percutaneous needle fasciotomy group chose to undergo a second treatment with percutaneous needle fasciotomy. Seven patients preferred limited fasciectomy. The remaining 12 patients did not opt for treatment of recurrent disease."
Although the recurrence rate after limited fasciectomy is much lower than after NA (see attached picture where NA is labeled as PNF) patients didn't want to have surgery again.
Wolfgang
Seph:Regarding comments about recurrence of DD following NA. My experience is that it does come back more frequently that with other treatment but the key point is that there is no limit to the number of times NA can be done. I see it as being like a trip to the dentist every 18 months or so but a lot less painful.
Good comments from all. I agree the dupuytrens-contracture.com site is more "selling" than "informing" and one must be careful. I left him a note on specific data and information and look forward to see his response. One point, I grew up raising horses and we used DMSO often on a wide variety of musculoskeletal issues and the results were amazing. I would have no problem trying it on my hands.
Seph:Tami1962; I see your note about looking for NA with sedation. It seems to me that this would significantly increase the risk of nerve damage. Remember the doctor is working by feel and needs to know if a nerve is touched. Awake you will know instantly as it will feel like an electric shock shooting out the end of the finger.
Most of the time nerves are not touched but that does depend on the location and size of the cord. Assuming no issues with nerves I am surprised that you report so much pain. I have now had NA 3 times on one hand and 2 on the other and the only painful bit was the initial injection each time but this quickly subsides as the anesthetic take effect.
Perhaps you should try a new doctor. If you leave it too long you risk the knuckle fusing and NA can't fix that. You then need surgery.
The sedation that I am talking about is not a pain killer, it is something to reduce the anxiety for the patient while they undergo a short painful procedure. http://en.wikipedia.org/wiki/Lorazepam You can still talk, respond and feel. If you feel pain you are not bothered by it. Therefor, you will be able to tell the doctor OUCH if you need to.
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