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Confession of an NA Zealot
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01/24/2013 00:38
Randy_H 
01/24/2013 00:38
Randy_H 

Confession of an NA Zealot

After some years if inactivity on this site I recently returned and wrote: "I have never heard a good argument put forth as to Xiaflex's superiority over NA." But then, realizing that I’ve been out of the loop for some time, I contracted Dr. Dr Keith Denkler who has proven to be very innovative and knowledgeable in treatment options. I trust his opinion very highly. His take after 400 procedures with Xiaflex:

NA is easier on the patient as more can get done in just one visit. NA is far less expensive unless your insurance makes up the difference.

Xiaflex however is slightly safer, as the very small risk of nerve damage associated with NA is essentially eliminated. And because it actually destroys Dups tissue Denkler's expects rates of recurrence to be less than with NA. It also can be administered through existing scar tissue (as has been pointed out by hammer and amplified by Denkler)

So my years as an NA Zealot have come to an end. Xiaflex is at least somewhat superior and I stand corrected. I think all those years of fighting for NA's superiority over Open Surgery blinded me to the idea that something else could be preferable. While Eaton is still into "NA and then more NA", Denkler has broad experience with both so carries considerable weight. It’s true that Wolfgang backed me up recently reporting that the Germans did not see Xiaflex as having benefit over NA and essentially tossed it out of their country. As he did, I suspect that cost has a lot to do with that as NA is dirt cheap in Europe. Denkler can largely rule out cost as US insurance companies are happy to pay to avoid the price of OS.

So, if you are in North America and have a complex contraction and your insurance covers it, looks like Xiaflex is definitely the route. But if it's not complex, you have a trained NA guy and Xiaflex would cost you a lot more, NA is still great. But the thing is, going forward the number of US MDs offering NA will be forever limited, and limited to those who got into NA before Xiaflex came on the scene. Xiaflex removes the motivation to learn NA.

So NA or Xiaflex. Either way very few new Dups patients will ever go under the knife. And that has always been the goal since the days of the BioSpecifics Forum. All Hail Xiaflex. You succeeded BioSpecifics!

01/24/2013 02:45
zinkadoodle 
01/24/2013 02:45
zinkadoodle 
Re: Confession of an NA Zealot

Thank you for this. I've been leaning towards Xiaflex specifically because the nerve damage risk is all but eliminated. NA always holds that possibility, albeit slight if done by a competent hand surgeon. I do not want to risk nerve damage. The money thing, however, is still an issue, and if I don't get into the multi-cord clinical trial, I may go the NA route just because of it. That out of pocket expense of having to do it three times for me is formidable. It may turn out to be a lot of money. I'll find out Friday which way I'm going. ~Diane

01/24/2013 05:49
Randy_H 
01/24/2013 05:49
Randy_H 

Re: Confession of an NA Zealot

Diane,

You must take into account that Eaton did over 2,000 NA's (and please anyone correct me if I'm wrong) but I believe he did so with no nerve damage at all. While he was working on a PIP of mine I did need to report to him that at one time I felt what was like electrical tingling. That's what happens if they get just close to a nerve. He simply removed the needle and came at it from a different angle. Higher instance of this on a PIP than an MCP because of the higher concentration of nerves at that point in the finger, especially in the pinkie. You would really need to work hard to hit a nerve in the palm he told me. What makes NA safe is this kind of patient feedback. Personally, with my $5,000 deductible, I wouldn't hesitate to have NA done again with a hand surgeon who Eaton had trained or who had decent experience.

Apparently Xiaflex takes your feedback and the skill of the practitioner off the table.

All the best to you.

Randy

Edited 01/24/13 07:52

01/24/2013 11:46
hammer 
01/24/2013 11:46
hammer 
Re: Confession of an NA Zealot

Hey Randy,"
When I had NA with Doc Bourland I had a Couple of "Zingers" as he called them.Pretty wild feeling when they shoot all the way up your arm to the elbow.The first one surprised the heck outa me!! Dave

01/24/2013 12:01
zinkadoodle 
01/24/2013 12:01
zinkadoodle 
Re: Confession of an NA Zealot

Thanks Randy. If I do end up going for NA, I will be searching out the most experienced, best doc I can find. Having said that, the fact that the Xiaflex removes that need for such intricate skill may not be such a bad thing, as long as the Xiaflex is properly administered. It seems to me that it could possible remove that human error possibility, even if remote, from the equation. I'd rather have a lesser capable technician administering Xiaflex than one doing NA. My present hand doc has administered hundreds of Xiaflex injections, and has never experienced a single case of nerve damage. That's a plus in my book.

This is my right hand we're talking about. My dominant hand. Typing is becoming an issue for me, and I spend significant amounts of time on a keyboard at work, and at home. I now have to move my entire right hand to type this, rather than just stretch my finges, as I am doing with my left hand. I am also a photographer, and I need my hand to be really functioning and steady. That's becoming more difficult, too, though not so much right now. I"m sure the same need for really good functioning hands is up upmost importance for all of you here. We need our hands. I just have this fear of nerve damage.

Interestingly though, I had open surgery on my left hand for DC over ten years ago. My hand is 100% functional, albeit a bit scarred, has just two completely unbothersome nodules, one at the base of my thumb and the other at the base of my index finger. They've been that way for almost ten years, and I have never sought any medical assistance for them. And I won't now. They don't bother me. But my point is, when surgery was the only option, I underwent the knife because I had to take that risk. Today, I don't. So, if insurance will cover the costs of the Xiaflex, or I get into the clinical trial, I'll definitely go that route. If not, then I need to see what kind of out of pocket expense I will be looking at. If it is too high, then I will risk the very remote possibility of nerve damage with the NA, assuming of course that NA is an option for me. I think it is, judging from all the comments here and the multitude of You Tube videos I have watched.

01/24/2013 12:09
zinkadoodle 
01/24/2013 12:09
zinkadoodle 
Re: Confession of an NA Zealot

And one more thing. One of my three cords is located on the pinky side of my ring finger, along with a significant nodule at the bend of my ring finger PIP joint. That PIP is now 35% contracted, as is the MCP joint at the same finger. That will make NA more of an issue for me, for sure. As you said, there are more nerves bundled there than on the palm, which is where my other two cords are located. That's definitely going to be a driving force in my treatment selection.

~Diane

01/24/2013 14:19
wach 

Administrator

01/24/2013 14:19
wach 

Administrator

Re: Confession of an NA Zealot

Hi Randy,

Xiaflex, like any drug, has side effects, too, and the long term and rare side effects are possibly not yet known. I guess we need further studies to clarify this and head to head comparisons of Xiaflex and NA. A review of what is currently available and known is e.g. on http://slm-respiratory.com/uploads/media...linical_Use.pdf

Wolfgang

Randy_H:
Diane,

You must take into account that Eaton did over 2,000 NA's (and please anyone correct me if I'm wrong) but I believe he did so with no nerve damage at all. While he was working on a PIP of mine I did need to report to him that at one time I felt what was like electrical tingling. That's what happens if they get just close to a nerve. He simply removed the needle and came at it from a different angle. Higher instance of this on a PIP than an MCP because of the higher concentration of nerves at that point in the finger, especially in the pinkie. You would really need to work hard to hit a nerve in the palm he told me. What makes NA safe is this kind of patient feedback. Personally, with my $5,000 deductible, I wouldn't hesitate to have NA done again with a hand surgeon who Eaton had trained or who had decent experience.

Apparently Xiaflex takes your feedback and the skill of the practitioner off the table.

All the best to you.

Randy


Edited 01/25/13 09:53

01/24/2013 17:10
spanishbuddha 

Administrator

01/24/2013 17:10
spanishbuddha 

Administrator

Re: Confession of an NA Zealot

Just as there is a risk of nerve damage with NA there is a risk of tendon damage with Xiaflex. There are other reported risks associated with Xiaaflex that do not exist with NA. Also, as Wolfgang says we have no idea of possible long term consequences. My personal view is that my next treatment will be NA and not Xiaflex, but we all have to make our own decision, and not overstate the risks or oversell a treatment.

01/24/2013 19:12
flojo 
01/24/2013 19:12
flojo 
Re: Confession of an NA Zealot

Dr. Denkler is my doc. When I had NA the first time in my palm, I did feel something and told him. He said he was getting close to s nerve, removed the needle and moved over a hair. He said he does not want the hand deadened to no feeling at all because patient feedback helps.

At my second NA, he suggested that Xiaflex would probably be effective more long term. My disease on my right hand appears to be under control since I've been wearing a night splint since my 2nd NA. I had RT shortly after the 1st NA. Left hand - had RT at nodule stage but cords were there first. Had minimal tightness. Have night splint being made. I think that will keep contracture and cord tightening at bay. Watching it like a hawk!

01/25/2013 03:07
pia2some 
01/25/2013 03:07
pia2some 
Re: Confession of an NA Zealot

I did have a Xiaflex treatment last spring. It was effective in straightening my ring finger on my right hand. After having the injection, the more I thought and read, the more I realized it really concerned me that there is no long term information on this drug. It is a foreign substance that is going into your body and who's to say what may show up 10 years or 15 years after these injections. That makes me pause and say I'd rather not go that route.

~ dawn

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Xiaflex   procedure   pharmaceuticals   Complications-of-Treatment   minimal-invasive   slm-respiratory   BioSpecifics   complications   experience   because   procedures   Confession   contracture   Wolfgang   International   patients   Denkler   scientifically   recurrence   Surgery