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Options Xiaflex, NA or surgery
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10/24/2013 14:08
Deboragriffith 
10/24/2013 14:08
Deboragriffith 
Options Xiaflex, NA or surgery

I am new to this site but have a need for real life input. I have multiple nodules in my palm and my little finger is about 45% degrees. My doctor recommended Xiaflex as my best option but my insurance denied as they stated that I did not have enough contractures yet. It is crazy. They said I could purchase it myself for $3540. I am still waiting to hear if they will approve NA or surgery. It may be the same answer.

The doctor said that if they don't cover it - I could have NA through his office for $1500.

My question is that does NA worth it? How many of you had the contracture return after NA and how many have had return after surgery?

10/24/2013 14:39
mikes 
10/24/2013 14:39
mikes 
Re: Options Xiaflex, NA or surgery

I've been very fortunate. Had NA done on small finger PIP 90 degree contracture in Nov. 2006 and it's as good now as it was then - maybe 15 degrees or so. Cost about $700. With NA, results may be highly dependent on the skills of the practitioner, amongst other factors.

10/24/2013 14:46
callie 
10/24/2013 14:46
callie 
Re: Options Xiaflex, NA or surgery

The problem that you will learn is that Dupuytren's and procedure recovery are not linear. Everyone is different. My situation was 90 degrees contracture in little finger. I had surgery 12 years ago and the finger is still perfect (zero contracture) and no sign that I ever had Dupuytren's. As you might expect, this is not the same result as some other people. I had very little pain (Tylenol) with the whole procedure and recovery. I would have surgery on my other hand if I need to have a procedure.

I did have RT on the other hand 10 months ago and the technician showed me his little finger which looked normal and he said he had surgery on that finger more than 16 years ago.

I think your choice would be NA to see if that would work and then surgery if it doesn't. I am not sold on Xiaflex as a lasting option, especially with the costs and pain involved.

Edited 10/28/13 23:44

10/25/2013 04:44
Deboragriffith 
10/25/2013 04:44
Deboragriffith 
Re: Options Xiaflex, NA or surgery

Thank you both for your replies. I don't know anyone else who has DC and it is great to have a place to learn about other's experiences.

Deb

10/25/2013 04:54
pia2some 
10/25/2013 04:54
pia2some 
Re: Options Xiaflex, NA or surgery

Callie is right. The only thing predictable about DC is it's unpredictability! Each person is different and how they respond and their outcome with the various procedures really differs. I think that is why it is important to find a hand surgeon that you trust and who is very knowledgeable about the disease. I wanted a doctor who did NA and surgery so he could access my situation and decide which treatment was best for my given situation.

I had Xiaflex 1.5 years ago and it did give me a good result. However, I am 99% sure I won't do it again. The cost is ridiculous. The results are not any better in the long term than NA.

Four weeks ago I had pretty extensive surgery on my right hand. It involved my palm, pinky and middle finger. Surgery was my only option because of the complexity of the disease in that hand. I'm still in recovery but am hoping for a positive outcome and that it will last for a good while.

My left hand is not as complicated right now. So NA is a good option for it. My hope is to have NA done by the end of this year. Even in the same person, different treatments are better options depending on the hand or the finger involved. Personally, if your doctor feels you are a good candidate for NA AND he has a lot of experience doing NA, I'd start with that.

It is tough because there just aren't any cut and dry answers. But learn as much as you can and be informed and then make a decision with your doctor. Ask questions here ... there's a wealth of collective knowledge and experience.

~ dawn

10/26/2013 13:15
Deboragriffith 
10/26/2013 13:15
Deboragriffith 
Re: Options Xiaflex, NA or surgery

Thanks Dawn. I think that the NA is probably my only option at this point anyhow as my insurance is stating that I have not lost enough function or use yet. Crazy as everything I have read is that there are better results if you don't let it go to far. I can still perform my day to day functions but have been experiencing aches and pain due to the contracture and it is hard to do certain exercises that require a flat hand. We will see what the doctor says when I speak with him on Wednesday. The good thing is that he is a specialist in Dupytrens at UCLA and I know that he is very knowledgable which helps a ton.

10/26/2013 14:59
callie 
10/26/2013 14:59
callie 
Re: Options Xiaflex, NA or surgery

Deboragriffith,

There are reasons why you are being told " have not lost enough function or use yet". Many people go their whole lives without a procedure. I am very surprised that you have been told that with 45 degrees contracture however. 45 degrees is in the optimum spread of contracture to have surgery and certainly NA. It is realistic to realize that procedures can stimulate additional Dupuytren's activity so the advice you have been given isn't totally a problem.

10/28/2013 21:27
Valerie304 
10/28/2013 21:27
Valerie304 
Re: Options Xiaflex, NA or surgery

pia2some:
Callie is right. The only thing predictable about DC is it's unpredictability! Each person is different and how they respond and their outcome with the various procedures really differs. I think that is why it is important to find a hand surgeon that you trust and who is very knowledgeable about the disease. I wanted a doctor who did NA and surgery so he could access my situation and decide which treatment was best for my given situation.

I had Xiaflex 1.5 years ago and it did give me a good result. However, I am 99% sure I won't do it again. The cost is ridiculous. The results are not any better in the long term than NA.

Four weeks ago I had pretty extensive surgery on my right hand. It involved my palm, pinky and middle finger. Surgery was my only option because of the complexity of the disease in that hand. I'm still in recovery but am hoping for a positive outcome and that it will last for a good while.

My left hand is not as complicated right now. So NA is a good option for it. My hope is to have NA done by the end of this year. Even in the same person, different treatments are better options depending on the hand or the finger involved. Personally, if your doctor feels you are a good candidate for NA AND he has a lot of experience doing NA, I'd start with that.

It is tough because there just aren't any cut and dry answers. But learn as much as you can and be informed and then make a decision with your doctor. Ask questions here ... there's a wealth of collective knowledge and experience.

~ dawn


[/quote




Dawn

NA scares me! it sound pretty much like a guessing game! Not being able to see what your braking loss.
Valerie

10/29/2013 01:58
Deboragriffith 
10/29/2013 01:58
Deboragriffith 
Re: Options Xiaflex, NA or surgery

I know what you mean about NA scaring you. I watched a YouTube video but couldn't watch it through the first needle. The things I have read that it is not too painful and after a couple of days the pain is gone. I hope that will be true for me.

10/29/2013 02:16
Seph 
10/29/2013 02:16
Seph 

Re: Options Xiaflex, NA or surgery

I have now had NA five times and have been treated by two different doctors. The two doctors have had slightly different techniques and procedures but in both cases they have known precisely where the cords are and, of course, they know where all the nerves and tendons are. While they cannot see they know when they are close to nerves and when it is more straight forward much as a physiotherapist knows what muscles, tendons or ligaments they are dealing with even though they can't see them.

With NA the multiple injections of very local anesthetic can be a bit painful but, in my experience, the rest of the procedure feels weird but is not painful. A bit of discomfort as the anesthetic wears off (easily managed with a glass of wine) and sometimes a bit of bruising for a few days but that's all.

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