Stage 4 - advice | Dupuytren | Forum for Dupuytren's contracture

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Stage 4 - advice
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30.10.09 10:31
Donna 
30.10.09 10:31
Donna 
Stage 4 - advice

Until yesterday I never heard of NA, now my eyes are crossed reading everything I can on it.

If some of you more experienced people could offer some advice;

- I was told by my hand doctor in Portland Oregon (15 years ago, 10 years ago and again 3 years ago) that surgery was the only option and that I should wait until the finger (pinkie finger, left hand) was virtually atrophied before having surgery. I am now a Stage 4 with no pain and slight movement in the finger.

- I live in Northern Italy but still maintain medical insurance in the U.S. with access to the medical systems (and free places to stay) in Washington D.C., Boston and Portland, OR. It is a convenient train ride to Paris.

- I have decided too proceed with NA.

- Based on the amazing base of experience in this forum, what would you advise I do - Go to Paris, try to find a doctor in one of the cities I mentioned, or try to find a doctor here in Italy?

Thank you in advance and thank you to the group who maintains this site.

Saluti
Donna

30.10.09 11:42
wach 

Administrator

30.10.09 11:42
wach 

Administrator

Re: Stage 4 - advice

Hi Donna,

maybe you want to read also the pages of this web site (left menu, Needle aponevrotomy). The page http://www.dupuytren-online.info/needle_aponeurotomy.html shows NA on progressed stages of Dupuytren's, including stage 4.

The typical application of NA is stage 1 and contracture of the base joint (MCP). Very few doctors will be able and willing to treat stage 4 with NA. Dr. Denkler who provided us with the pictures on our web page is one of them.

Dr. Lermusiaux in Paris has decades of experience with NA and so have several others on the list (our web site lists doctors who do NA). In Italy Dr. Cataldi in Rome, a member of Dupuytren Society, offers NA but I am not sure whether he has experience with stage 4. In Germany Dr. Meinel in Wurzburg has experience and good success in treating progressed stages of Dupuytren's contracture.

Wolfgang

Edited 10/30/09 11:42

30.10.09 12:28
Donna 
30.10.09 12:28
Donna 
Re: Stage 4 - advice

Wolfgang,

Thank you! I have sent an inquiry to Dr Lermusiaux's office in Paris and Denkler in Larkspur. At this point my gut tells me Dr. Denkler may be the best option since he has done a number of these procedures on Stage IV patients. I am intimidated about the language issue with the Paris/German Doctors, also since I do have insurance in America, it seems a better way to go if there are complications, etc.

30.10.09 14:12
wach 

Administrator

30.10.09 14:12
wach 

Administrator

Re: Stage 4 - advice

Both, Dr. Lermusiaux and Dr. Meinel. speak English though certainly not as well as Dr. Denkler ...

Wolfgang

30.10.09 21:44
callie 
30.10.09 21:44
callie 
Re: Stage 4 - advice

You said, "I was told by my hand doctor in Portland Oregon (15 years ago, 10 years ago and again 3 years ago) that surgery was the only option and that I should wait until the finger (pinkie finger, left hand) was virtually atrophied before having surgery."

That is a remarkable statement. Did this "hand doctor" have a medical degree? I have never heard that kind of advice anywhere. You overpaid for his services if you paid anything.

30.10.09 21:57
Donna 
30.10.09 21:57
Donna 
Re: Stage 4 - advice

Callie,

I honestly don't know what to tell you, my research tells me this is pretty common advice.

I found this on Dr. Kline's web site:
"I was given the standard advice that nothing could be done until the disease progressed and my contractures were more severe."

I am at the same time frustrated (that I could have had NA sooner) and relieved (that I didn't have surgery) that I have waited this long.

When I figure out what I will do, I will certainly pass along my choices/observations.

Thanks
Donna

30.10.09 22:40
callie 
30.10.09 22:40
callie 
Re: Stage 4 - advice

Donna, You said, "I was given the standard advice that nothing could be done until the disease progressed and my contractures were more severe." That is not uncommon advice whether talking about NA, or surgery.

That is completely different than the advice you said your hand doctor told you.

So what degree of contracture do you have at this time? The standard advice for surgery is between 30 and 45 degrees contracture. I had surgery 7 1/2 years ago for 90 degree contracture on my little finger. The finger is still as good as it was prior to Dupuytren's (0 degrees contraction).

05.11.09 10:54
Donna 
05.11.09 10:54
Donna 
Re: Stage 4 - advice


I have decided to have NA procedure done by Dr. Keith Denkler in Larkspur in late December.

Now, I need to start researching physical therapy options.

Again I would like to thank the people who put this web site together. It is an unbelievable source of information and support. I'll let you know how it goes.

Donna

05.11.09 11:55
Wolfgang

not registered

05.11.09 11:55
Wolfgang

not registered

Re: Stage 4 - advice

Donna, my advice is to do what Keith Denkler tells. He has alot of experience. The only thing where I would take exception is having NA radiated to avoid recurrence. I don't think there is a a real good target for RT in this situation. Another thingthat is ceretialy helpful is wearing a night splint for 3-6 months untilthe finger has stabilized. The splint should be comfortable and easy to put on and take off, e.g. like the fixxglove on http://www.dupuytren-online.info/dupuytr...techniques.html.

Wolfgang

07.11.09 00:24
LubaM. 
07.11.09 00:24
LubaM. 
Re: Stage 4 - advice

Just as a matter of advice to Donna......Dr. T. at Scripps in La Jolla is a firm believer that NA, IMMEDIATELY followed by radiation therapy is recommended to reduce the probability of re-occurence, wearing a night brace as suggested, is also a very good idea....you might want to consult with with Dr. Tripuraneni in LaJolla. I am having radiation treatment on my left hand and left foot beginning next Monday.

In addition I have a pinkie finger in my right hand that is bent, (I had had NA done on it a couple of years ago by Dr. Denkler), that I plan to re-do next year with Dr. D., followed by radiation treatment by Dr. T.

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