Posted by Dr. J. Cucuzzo on June 24, 2002 at 20:00:35:
For those who read my posting on the Dupuytren.org web site discussion forum, I called for an educational campaign to help people outside of Europe to make an informed choice between surgery and needle aponevrotomy. I discovered that many Dupuytren sufferers throughout the world were in the dark about treatment choices and did not feel they knew enough to make a choice among the treatments available. Many had questions they could not get answered because of language barriers and lack of access to consultants. They had important questions, such as "How does needle aponevrotomy avoid nerve damage?"
You may also recall that I interviewed a French hand surgeon, Caroline Le Clercq, MD, a critic of needle aponevrotomy who represents the other side of the story presented on web sites created by proponents of the procedure. I took scrupulous notes during my discussion with Dr. Le Clercq and converted her criticisms into questions, which I e-mailed to every Rheumatoligist I could find who performs needle aponevrotomy in France, Belgium, Italy, and Switzerland. My original questions and the responses appear below. Responses from one doctor were omitted to protect his confidentiality.
After conducting my research, I have decided to pursue needle aponevrotomy in Paris. Although I am not yet convinced that this treatment is superior to surgery, I had to make a quick decision, and will complete my research when I return to New York. But it is clear to me that the empirical data supporting needle aponevrotomy is stronger than the data supporting surgery. And it is also clear from the responses I received to my questions (below) that the surgeons who criticize the European treatment have a distorted and poor understanding of the treatment.
After you read these responses, I would appreciate hearing from as many of you as possible as to whether you think an educational campaign is warranted. The initial swarm of e-mail I received from Dupuytren sufferers communicating their anxiety and indecision suggests to me that it is.
One French Rheumatologist wrote to me and suggested that public education is unneccessary because there are ample data available on web sites. I was surprised and disappointed by this e-mail. Clearly, the flood of responses from people indicating that they do not know enough to make a decision suggest otherwise. Web sites represent only the point of view of propenents. The outcome data presented on these sites do not include sufficient information on the research methodology used to produce these data. The large number of people in the US who chose surgery without any knowledge of needle aponevrotomy further supports the need for public educations. Surgeons in the US presented criticisms that I would have accepted had I not pursued my unusual strategy. And many people do not have access to the web.
Public health education utilizes all media, not just the Internet, and includes seminars and other means of disseminating information, including fact sheets to counter those available now in the US that state surgery is the only option. Would the Internet alone be all that is necessary to educate the public about the dangers of cigarrette smoking and alcohol? If surgery is not only a poor choice, but a dangerous one, as the European Rheumatologists claim, then it is incumbent upon all of us who care about the welfare of the larger community of Dupuytren sufferers to act.
I have made connections with Frence speaking individuals who can translate, including one Frence Internist. I would like one day to translate articles on needle aponevrotomy into English and other languages. If enough individuals come forward willing to provide financial support for this endeavor, it might one day be possible.
I would also like to arrange for European Rheumatologists to be interviewed on the radio and quoted in newspapers and magazines. I would like to make fact sheets on needle aponevrotomy available. I know of many alternative medical practitioners who would be interested in this procedure.
Please, again, write to me at janettnc@aol.com and let me know if you believe a public health education campaign is necessary. Please also let me know if you can commit even a small amount of time to support this effort.
If I do not hear back from anyone, I may reconsider my plans. Such a project should only be pursued if there is ample support from Dupuytren sufferers.
My Original Questions
I am speaking for a group of patients outside of France, who need to make a decision about whether to pursue needle aponevrotomy treatment or surgery. In my case, this decision must be made very soon. We are all very much in the dark because of language barriers and lack of access to studies and other information about needle aponevrotomy in our countries of origin. This could cause one or more of us to make the wrong choice and suffer serious consequences. I have reviewed the web site data exhaustively, which is not adequate. What would be adequate, however, is the use of as little as several minutes of your time answering even one of the questions posed below? I hope you will consider the serious ramifications for all of us in deciding whether or not to provide a brief response to the this e-mail.
I can supply the names of others in my group, if you insist, many of whom came from the Dupuytren.org discussion forum, but the group prefers to remain anonymous and let me speak for them.
I am also in contact with two leading surgeons in the United States who reported some openness to learning more about the procedure. I admit, though, that they are starting with a bias. But they at least expressed openness.
I just completed a phone consultation with Caroline Le Clercq, and from my discussion with her, compiled the following five questions. If your time is limited, you can simply answer the first two or three questions. If it is very limited, a response to the first question, alone, would make a great difference in the lives of at least several people. A response at your earliest convenience would be greatly appreciated since, at least in my case, a decision needs to be made very soon.
I will gladly pay for your time responding to this e-mail as a paid consultation. If you wish payment in advance and do not accept credit card payment, please give me your address as soon as possible and I will send payment to you Federal Express.
Questions
1. With PIP contractures, particularly in the small finger, where nerves wrap around the cord, how can a blind, closed cut result in minimal risk of nerve damage? The Needle Aponevrotomy studies suggest the risk is small. But could you explain the logic as to why it is small to a group of us who greatly fear damage to a nerve?
2. The data show complications to be rare, including flexor tendon ruptures and severe collateral nerve damage occurring in approximately 1 in 2000 hands. But Dr. Le Clercq states that you cannot be aware of serious complications, because dissatisfied customers more often go to a hand surgeon, instead of returning to needle aponevrotomy specialists. To back this up, she conducted a survey in which 200 French hand surgeons reported 48 tendon cuts. Can you use scientific data or, if not, sound logic to reassure us that these complications are highly unlikely?
3. Dr. Le Clercq said that "rheumatologists do not know anatomy, particularly the complex anatomy involved in Dupuytren's." Can you provide reassurance that you do know the anatomy or that such specialized knowledge is not necessary? Also, why are rheumatologists treating Dupuytren's?
4. In a follow-up of needle aponevrotomy patients at the last meeting of the French Hand Surgery Society, a paper presented by two hand surgeons showed that 100% of patients had recurrences. There are also questions about how soon the condition returns. This is of only practical concern to those of us who must finance and manage the disruptions to our businesses by frequently traveling to Europe. But it is a health concern if there is any question about serious or even moderately serious complications, particularly when multiple aponevrotomy procedures are often required at the time of treatment. Unfortunately, you cannot know about recurrences in cases where people go to hand surgeons instead of you. But any comments you can make to counter these concerns would be appreciated.
5. Specifically on my case, so I can decide: Dr. Le Clercq and other hand surgeons I've consulted admitted that serious complications can occur in very difficult cases. But in a case like mine, with a 30 degree PIP contracture in the small finger, a 5 degree PIP contracture in the ring finger and a skin adherence, all serious complications are highly unlikely, particularly given the fact that I am 41 and otherwise healthy. The claim is that even though I have bilateral disease, with the diathesis (i.e., father has the condition; confirmed diagnosis of Peyronie's and probable Ledderhose's Disease; bilateral Dupuytren's), my likelihood of a recurrence is low. Although an extension is likely to occur in my case, a repeat operation on even the same hand with an extension of the disease produces no additional complications, according to the surgeons. Additionally, the doctors claim that repeat operations are not very likely in my case, particularly if skin grafts are used. Please give your opinion of a likely long term picture for me with Dupuytren's using surgeries versus needle aponevrotomy.
Thank you so much for any of the above questions you can find time to answer.
Dr. J. Cucuzzo
Dear Sir,
Thank you for your interest in our non-surgical procedure.
I apologize for the delay of this e-mail, but you got a complete reply yet, from my colleague....
Just a point to focus on is your fear of a nerve damage... the answer is that the needle used for our method is thinner than a palmar or digital nerve (26G or 25G) and the local anesthesia is pretty light, so that a simple touch of the nerve is toughly felt by the patient and the position of the needle edge changed at once.
Best regards.
Dr. Badois.
Dr. J. Cucuzzo
Very difficult questions ! I think that some hand orthopaedic surgeons are against aponevrotomy because the Dupuytren's surgery is very lucrative... Of course, we see patients whom surgery failed, and surgeons see Needle fails.
1) I have got any nerve damage at 5th finger ; It's right thate the 5th finger is small, it seems that nerve (and vessels) "run away" the needle/rheumatologist know every case because tendon cut = action in law! A patient says to me that his neighbourg had Dupuytren disease, surgery, infection, septicemia, death .. Of course, every technic schoud be complicated.
3) Very stupid assertion... We are 2000 rheumatologist in France, and about 60 to know Needle aponevrotomy. Rheumatologists are treating Dupuytren because 1) hand is "bone and joint" and 2) Dr. Lermusiaux is a Rheumatologist;
4) A 50% recurrence rate with surgery and needle aponevrotomy is right (about 100 aponevrotomy/week in Lariboisiere hospital)
5) You are probably a good indicatin for aponevrotomy, if you are afraid you can see Dr. Lermusiaux (who is the "father" of needle aponevrotomy).
Last question, how do you have my address?
Dr. Agnes Chabot
Dear Dr. J Cucuzzo,
Sorry for the delay answer, but I was in a meeting out of Switzerland.
Nothing am I writing is confidential
1) With PIP contractures, particularly in the small finger, where nerves wrap around the cord, how can a blind, closed cut result in minimal risk of nerve damage?: There is no answer concerning the nerve but only statistical results. One hypothesis should be that the very small needle use for the procedure cannot go through the nerve but push it. Concerning the tendon, the explanation is easier. the Patient is ask to mouve regurlarly the finger without mouving the needle in the same time. It is 14h00 and I have to start with the first patient. You will have further answer at 16h30.
Best regards
Georges Rappoport, MD
Dear Dr J. Cucuzzo
Let me go on with the others questions
2) ...But Dr. Le Clercq states that you cannot be aware of all serious
complications, because dissatisfied customers more often go to a hand
surgeon, instead of returning to needle aponevrotomy specialists.To back
this up, she conducted a survey in which 200 French hand surgeons
reported 48 tendon cuts. Can you use scientific data or, if not, sound logic
to
reassure us that these complications are highly unlikely? What is your
reaction
to her survey?
Dr C. Leclercq has observed 6 cases in a center of hand surgery and with a
questionnaire she sent to the 236 french hand surgeons 105 came back with
the mention of 65 non controled ruptures which as far as I know have never
been non published . Between 1972 and 1999 5 cases of ruptures of tendon
upon 60 000 needle treatments have been mentioned to the doctors doing
needle treatment. In 1995 1 rupture upon 3672 treatments by Dr J.L.
Lermusiaux
and 2 cases in a multicenter prospective study in 1995 upon 3736 treatments.
In France 4 cases have conducted to a civil reclamation.
Finaly if I can understand dissatisfied patient going to hand surgeon for a
rupture
I do not understand why surgeons do not send any comments to the doctor
having done the needle treatment.
I personnaly have 2 ruptures upon 2700 neeedle treatments in 8 years. One
patient want back do very hard manuel work the day after despite my
recommandation. This very important complication is very rare and as rare
as the the doctor has a long practice.
3) Dr. Le Clercq said that "rheumatologists do not know the anatomy of the
hand, particularly the complex anatomy involved in Dupuytren's?
It is well known that rheumatologists cannot read and therefore do not know
the
anatomy. Let be serious. If a rheumatologist do not know the anatomy of
Dupuytren's
disease and do needle procedure it is not a doctor but a butcher. She should
remind that we are the specialists of medical treatments of the hands doing
a lot
of injections in joints and near tendon for tendinitis of all ethiologies.
4. In a follow-up of needle aponevrotomy patients at the last meeting of
the
French Hand Surgery Society, a paper presented by two hand surgeons showed
that 100% of patients had recurrences. I have read the French data
indicating a 50% recurrence rate with surgery and needle aponevrotomy...
For recurrences I have the same data as yours of 50% of relaps after surgery
or fasciotomy. And by the way 100% of relaps showed by surgeons do not
mean 100% of relapses after all the needle treatments.
I am the only rheumatogist doing the needle procedure in Switzerland. And
many hand surgeons are still again this treatment. It was there real
pleasure to
informe me on my 2 ruptures ( that I knew by the patients themselve). It is
there
same pleasure for recurrences. At five years my relapses are much less than
the
50% mentioned above but I start 5 years ago to practine fasciotomy. I have
to
begin my onwn statistic.
5). Because there is no criteria of recurrences it is impossible to assure
that
you wont have it.
You have a grade 1 DC which the easiest to treat but could be less efficacy
because of bthe adherence. Surgeon are right when saying that to avoid
relase
you shoud have skin grafts
I should be able to give you more precise information of the the future of
your
hand with digital photos you could mail me.
Logicaly I would propose needle treatment first because it is easy to do
surgey
in a second step. On the contrary needle treatment is much more difficult
after
surgery because of adherences.
I shall be on holidays from June th 22th to july the 15th. You can call me
on
0041244230202 (or 07) this tuesday, Wednesday and friday or 0041794391300
mobile phone) every day even during my holidays.
Best regards
Georges Rappoport MD
sorry for my english
Anser to question 1.
By using a minimal dose of anesthesia( the patient has no pain during the
intervention, but usually feels the movement of the needle), the patient can
tell the doctor who is performing the Needle Aponevrotomy that he is near to
the nerf( specific irradiation).
For that, the experience of the doctor is important.
Answer to question II
The Needle Aponevrotomy is far as drastic as a surgical intervention and it
is for that logic that the complications are less.
I have the personal experience that my patients who discovered the Needle
Aponevrotomy are very pleased and at the same time surprised about the good
results of this technic. They all are very grateful and will not longer
consider surgery in case of recurrences.
This concernes my personal experience in Brussels, Belgium.
If you need references of my Canadian patients who speak english, just tell
me. They do not come as far just for looking into my beautiful eyes ....
Answer to question V
The results of Needle Aponevrotomy in stade I or II are very good to
perfect: a loss of extension of 30° is a perfect condition to Needle
Aponevrotomy. You can comparing this intervention with a visit to the
dentiste.
In case of recurrence, usually between 5 to 10 years, this simply
intervention can simply be repeated.
Cher Monsieur,
Je n'ai pu répondre rapidement à votre mail étant donné qu'il fallait
d'abord faire la traduction.
En réponse à vos différentes questions :
Tout d'abord, il est sûr que les complications proviennent d'une
non-expérience avec des thérapeutes qui ont fait peu d'aponévrotomie à
l'aiguille. Pour ma part, j'en ai traité plus de 4000 cas différents depuis
1988. Je n'ai jamais eu de rupture de tendon fléchisseur.
En ce qui concerne le nerf collatéral, comme il s'agit d'une technique "à
l'aveugle" il est évident que nous ne sommes pas à l'abri d'une irritation
de ce nerf, mais si elle arrive (très rarement) il ne s'agit jamais d'une
section complète mais d'un contact qui provoque, en général, un courant
électrique nous permettant de modifier la position de l'aiguille. C'est
pour cela qu'il m'arrive de commencer par le doigt avant de traiter la
paume de la main (pas d'anesthésie au-dessus du doigt).
Si par hasard le nerf était touché, des paresthésies peuvent persister 8
jours à 3 semaines et ne durent jamais plus de 3 mois.
Ce n'est pas parce que nous ne sommes pas chirurgiens que nous ne
connaissons pas l'anatomie de la main !. Il existe des livres très bien
faits sur l'anatomie et notamment il en existe un qui ne parle que de
l'anatomie de la maladie de Dupuytren et des différentes anomalies qui en
découlent sur le trajet du nerf.
En ce qui concerne les récidives, il est vrai qu'en 5 ans la moitié des
patients récidivent mais nous pouvons recommencer indéfiniment les séances
d'aponévrotomie percutanée à l'aiguille sans aucun inconvénient, ce qui
n'est pas le cas de la chirurgie.
Tous les contacts que vous avez eus avec les chirurgiens qui vous parlent
des complications de la technique ne m'étonnent pas car ils ont réuni tous
les cas traités par des médecins non spécialistes de la maladie de
Dupuytren.
Pour votre cas personnel, vous représentez le cas habituel et le plus
simple qu'on puisse rencontrer et il serait dommage de ne pas tenter cette
technique alors que la chirurgie représente beaucoup plus de risques.
Docteur BOULLIER de BRANCHE
spécialiste Médecine Physique, Traumatologie du Sport, Ostéopathie
3 avenue Bugeaud
75116 PARIS