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Xiaflex approved by FDA today
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02/10/2010 20:19
SusanInVA 
02/10/2010 20:19
SusanInVA 
Re: Xiaflex approved by FDA today

Thanks Randy for your reply. I will research NA, but not sure my doctor does that because he never mentioned it. It seems people have to drive a ways to get it done. Not sure about my insurance covering that, but I'll research that too. NA is small incisions made to cut the cord. What happens to the nodules? Do they eventually get smaller or go away. My doctor did say that scar tissue would be as bad as the nodules.

02/11/2010 03:48
flojo 
02/11/2010 03:48
flojo 
Re: Xiaflex approved by FDA today

They don't do an incision in NA. They poke the cord with a needle to weaken it enough so that it will snap when they stretch it. I had about 4 cords snapped. It was a piece of cake. After numbing my hand, the NA procedure took about 20 minutes. After it was bandaged, I drove myself from the office for about an hour drive. I'm sure I could have gone farther. I kept it elevated for 72 hours, then took the original bandage off. After that, I only kept Bacitracin and bandaids on the punctures for about 10 days. You can wash your hands, take a shower, etc. but no tub bath, no washing dishes. I didn't even need physical therapy, but it will undoubtedly be needed for months after surgery. Surgery also creates many incisions that may develop into lots of scar tissue.

Surgeons around the country for the most part have no clue about NA or RT, or they don't want to know about it. They stick with the "traditional", and in my opinion, unnecessary treatment for most Dupuytren's Contracture/Disease. You probably know more about the treatment options than your surgeon. Ask your doctor/surgeon how long it will take to do the surgery. Guaranteed it will be hours, not 20 minutes. Also, ask how long it will take before you can use your hand.

I recommend that you research the options, NA for sure, and seriously consider that before you go for surgery.

02/11/2010 04:13
SusanInVA 
02/11/2010 04:13
SusanInVA 
Re: Xiaflex approved by FDA today

Thanks for your input. I have been researching it all day long and NA sounds like something I should at least try before surgery. The problem is finding someone closeby that I can go to for the procedure w/o having to go on a long trip. I did find a listing of a doctor in Richmond that does it and I'm going to call tomorrow. Everyone was closed today due to the weather. The Hand Center in Florida has a lot of good information. So, it sounds like you were happy with NA. No reoccurrence? I'm hoping I can get the NA and then get cortisone shots for the nodules to reduce their size.

My doc did mention Xiaflex, not by name but said FDA was approving an injection. I'm surprised he didn't mention NA. It

02/11/2010 04:18
SusanInVA 
02/11/2010 04:18
SusanInVA 
Re: Xiaflex approved by FDA today

He said the surgery would take 1 and half hours and in 10-14 days I would be o.k. for typing, etc. and have physical therapy for a few months.

02/11/2010 04:59
Randy_H 
02/11/2010 04:59
Randy_H 

Re: Xiaflex approved by FDA today

Susan,

10-14 days. No so says I.

"I'm surprised he didn't mention NA."

Get used to it. It took me a long time to accept the fact that MD's are not necessarily all that interested in the Latest & Greatest. Their conservatism can be glacial. On the other hand, as you can see, there is a growing list of sergons that are now doing NA.

If you have to go to Florida, it's worth it.

02/11/2010 05:25
LubaM. 
02/11/2010 05:25
LubaM. 
Re: Xiaflex approved by FDA today

In 2006 I consulted with three different hand surgeons regarding my 40 degrees PIP contracture on small finger...

The first surgeon I saw was ready to do Open Hand Surgery after a very quick consultation... a week before my scheduled surgery... because of all the positive posts that I read on this forum... I cancelled the surgery and opted for NA....initial results were very good, the procedure was very easy and quick.

In my case...contracture came back and I'm ready to re-do the NA on the same finger, .......but I would do repeated NA's rather than having surgery.

The second surgeon I consulted, clearly indicated that the contracture had a 50% chance of coming back....then why go through the ordeal of an open hand surgery, long recovery and still the same chance of recurrence.

I agree with Randy...Give NA a try before having surgery...if you are lucky you can have good long lasting results...you can always opt to do surgery down the road after you have tried NA once or twice... if you live close to Florida, Dr. Eaton would be a great choice...

Best of luck.

02/11/2010 07:51
Randy_H 
02/11/2010 07:51
Randy_H 

Re: Xiaflex approved by FDA: "Dooooo"

"Give NA a try before having surgery...if you are lucky you can have good long lasting results...you can always opt to do surgery down the road after you have tried NA once or twice."

Right on LubaM!

Given the fact that Open Surgery (OS) does not have significantly lower in rates of recurrence, and the fact that NA does not eliminate later OS, what do you have to loose?

One more item: The scar tissue from such an invasive approach as OS can render NA impossible (unless you see Dr. Denkler). Once you move to OS it's hard to go back to NA.

As I stated, Xiaflex and NA are very similar in their non-invasive approach. Ask yourself, why is Xiaflex such a big deal with hand surgeons? Why spend *millions* on Xiaflex to get FDA approval? Could it be that surgeons know full well that they need a non-invasive approach compared to OS? Could there be *any* other reason? I'd like to know.

Nope.

Now, consider this. So far, NA has held it's ground in terms of safety and effectiveness against it's Xiaflex rival. They are almost the same procedure insofar as their basic approach. Personally I've had OS and NA. So far I see no reason to go for Xiaflex over NA. None. Does anyone have data to prove me wrong?

Bring it on. We'd like to know.

The investors in Xiaflex did not do their homework on NA. I can hear Homer Simpson now: "Dooooo

02/11/2010 11:16
jocond 
02/11/2010 11:16
jocond 
Re: Xiaflex approved by FDA today

Randy,

My personnel experience proves you right. I've had NA done in both hands and had the injections on my right. The Xiaflex was painful and it took 3 to 4 weeks to have close to full strength. Never again!!! After having NA done, each time I was back to work full strength in 5 days. I'm not talking pushing pencil's either, I'm an electro-mechanic working on industrial machines.

Joe

02/11/2010 14:17
lori 
02/11/2010 14:17
lori 
Re: Xiaflex approved by FDA today

Susan,

I had the cortisone shots before I had RT and it did not reduce, soften or change my nodules. All it did was take away my pain and give me my flexability back. It did slow the progression of my DD because mine was growing and changing weekly. I am glad I had the shot, but be aware the shot is painful. My hand felt fine for about 3-4 hours, I went back to work and by 4pm it had curled up into a claw and really hurt. It scared me but by midnight my old hand was back, and my flexability improved over the next week.

I have not had NA but from what I have read from others on this site, some have flown down and back in either day trips or overnight trips and felt it was worth the flight to have the NA done in Florida. A day of inconvenience is better than weeks to months of recuperation.

Just my opinion,

Lori

02/11/2010 16:47
LubaM. 
02/11/2010 16:47
LubaM. 
Re: Xiaflex approved by FDA today

Susan,

Re: your comment "I'm surprised he didn't mention NA"....
____________________________________________________________
I'm not surprised. One of the surgeons I consulted in 2006 was totally opposed to NA as well as to RT... (this was a well-respected and renown hand surgeon in one of the biggest hospitals in Los Angeles).... he said the "only" possibility was open surgery (OS) which he admitted had high chances to recur....

I did both, NA on right hand and RT on the other hand and foot. Both these procedures have been done for years in Europe and the list of doctors doing NA in this country is growing every day...and now more and more people on this forum are having RT as well.... I am so happy I didn't do the OS and opted to try the "easy" procedures first.

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