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Xiaflex injection
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07/02/2012 17:07
bstenman 
07/02/2012 17:07
bstenman 
Re: Xiaflex injection

callie:
Does Dr. Denkler do surgery (fasciectomies)?


Dr. Denkler is a certified hand surgeon and has done fasciectomies and released a paper regarding the problems from the use of full limb tournequets at last years conference. There are several problems with fasciectomies that surgeons fail to disclose. There is at least a 6% chance of permanent loss of the use of the hand as a result of the damage caused by no blood flow through the hand for more than 90 minutes, and direct damage to nerves. The outcome after 5 years is only marginally better than for NA. The physical rehab adds months to the process.

With NA the procedure is over in under and hour and a day later you have full use of your hand. With Xiaflex my experience was that it took more than two weeks to get my treated hand "back to normal" and the skin healed after all the swelling and extensive skin cracking caused by the Xiaflex.

A vial of Xiaflex only treats one area. With NA I had multiple areas treated and I had both hands treated. The insurance company will only cover a single dose of the Xiaflex which is only enough to treat a single digit.

There is evidence to support the benefits of XRT to retard the progression of the disease and to use NA and or Xiaflex to treat the effects of the disease.

NA is more effective in some respects and the cost is much easier to cover if you have to pay out of pocket ($1100 versus $4000 for Xiaflex in total - cost for vial plus doctor visits). I had NA performed by Dr. Denkler and then a couple months later got the XRT in Germany. 4 years later I needed another procedure and Dr. Denkler, based on the location of the contracture, recommended Xiaflex as being safer and less likely to damage a nerve in the finger. I trusted his judgment as at the time he had performed more than 100 Xiaflex treatments and many hundreds of NA procedures.

07/02/2012 20:20
callie 
07/02/2012 20:20
callie 
Re: Xiaflex injection

bstenman,

You paint a pretty dismal picture of fasciectomies by discussing worst case scenarios. Most people are happy with the outcome of fasciectomies, and they are the most common procedure for Dupuytren's. I would have another one without any question.

I am glad that there are other procedures available for those not wanting the surgery, but having a fasciectomy for most people is not a "big deal". It is a pretty minor surgery compared to most. Having said that, the quality of the procedure is very important and should be done by an experienced (in Dupuytren's) surgeon.

07/02/2012 20:50
bstenman 
07/02/2012 20:50
bstenman 
Re: Xiaflex injection

Before getting the NA procedure in 2007 I did a great deal of research on the outcomes of fasciectomy surgeries. There are published studies involving as many as 4000 patients that are easy to find and accessible by the general public. Hand surgeons downplay the risks and the amount of physical therapy involved, including the one I saw who teaches at Stanford Medical.

I spoke with physical therapists who dealt with post surgery patients. The surgeons do their surgery and never see the patient again and the outcome is not a concern for them. The minimum amount of physical therapy required to get use back of the hand after surgery (a common test is the ability to squeeze a tennis ball) was 30 days and many people reported recovery times of many months or no full recovery at all.

When I had the NA done by Dr. Denkler, a board certified hand surgeon who had performed many fasciectomies over the years, he said a good part of the problem was the use of a full tourniquet during the 90 minute plus surgery and that he was writing a paper based on his review of thousands of such surgeries and he was pushing for surgeons to use a different procedure using arterial clamps. Dr. Denkler said that surgeons were very slow to adopt new procedures and he personally found this frustrating, hence his using his personal time to do the research.

I see anything that could lead to someone not being able to use their hand for months or possibly ever again as the last choice on a list of possible ways to deal with Dupuytren's but most hand surgeons have only experience with performing a fasciectomy and that is all they recommend for their patients. Look at the tens of thousands and hand surgeons and how even after NA has been performed for decades in Europe there are still only dozens of surgeons providing this procedure in the USA.

I am glad when anyone has a positive outcome but for people trying to decide what to do a fasciectomy needs to be considered very carefully and alternatives which are less costly and less invasive and less risky and have much shorter recovery times should also be considered in that light.

07/02/2012 21:22
callie 
07/02/2012 21:22
callie 
Re: Xiaflex injection

I guess we will just have to disagree. Naturally, there are downsides to every procedure and you emphasize them for surgery. I did not need any hand therapy other than what I did on my own (my finger was over 90 degrees contracted). My surgeon saw me after my surgery. Most people do not need to see their surgeon following the one follow-up appointment after surgery. It is normally not the "big deal" that you have presented and believe.

You said, "I am glad when anyone has a positive outcome but for people trying to decide what to do a fasciectomy needs to be considered very carefully and alternatives which are less costly and less invasive and less risky and have much shorter recovery times should also be considered in that light". I agree.

You said, "The surgeons do their surgery and never see the patient again and the outcome is not a concern for them".

I think that is a grossly unfair statement, especially with your limited experience with fasciectomies. What is the basis for that statement? Every person I have known who has had a fasciectomy had at least one follow-up appointment with their surgeon. But, you are saying there is never a follow-up appointment?

From this website, "Surgery is the most common treatment of Dupuytren's contracture. Surgery is usually considered when fingers are already bent by more than 15 to 20 degrees and the use of the hand has become restricted. In a very progressed stage, when the finger is already bent inwards, surgery is the only proven therapy that we know of that can make your hand straight again".

Edited 07/03/12 00:38

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