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Any advice
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01/24/2014 07:17
KatherineG 
01/24/2014 07:17
KatherineG 
Any advice

Can members give some advice.

I started with Dupuytren's in 2008. While sightseeing in another country I stepped into a pot hole and broke my elbow and ankle and imo, that triggered Dupuytren's as there is nothing in my family.

I have it in both hands. My right hand is beginning to really contract and I do not know what to do. I live in London, but do not have 100% confidence that doctors here are the most up to date re treatment.

They still seem to be going for open surgery and N/A has only recently been acknowledged. Xiaflex does not seem to be really in use yet.

I would travel to another country if necessary and noticed the post Re Dr Denkler, that he uses N/A and Xiaflex too which seems like a good idea to me.

Do people still travel to France where N/A originated from. I am worried about RT.

Any thoughts would be appreciated and ideas on cost would help.


What a strange disease it is. Also I should add that I was taking cod liver oil plus collagen (I think) and wonder if that triggered DD.

With thanks.

K

01/24/2014 08:36
wach 

Administrator

01/24/2014 08:36
wach 

Administrator

Re: Any advice

People from the UK used to travel to Paris for NA but since the endorsement of NA by NICE and several clinics in the UK doing NA, I guess that kind of tourism became less popular. Why not having NA in the UK? The combination of NA with Xiaflex is a specialty and certainly not useful for every treatment.

Wolfgang

01/24/2014 08:54
spanishbuddha 

Administrator

01/24/2014 08:54
spanishbuddha 

Administrator

Re: Any advice

There are established and experienced NHS clinics in, for example Nottingham/Derby and East Grinstead, that could advise a treatment including NA, Xiapex or surgery. Your local CCG should help you with this, either a search or referral. The BDS site list some more.

Having said that, I myself will/would take the Eurostar to Paris and have NA done there privately.

01/24/2014 20:58
KatherineG 
01/24/2014 20:58
KatherineG 
Re: Any advice

spanishbuddha:
There are established and experienced NHS clinics in, for example Nottingham/Derby and East Grinstead, that could advise a treatment including NA, Xiapex or surgery. Your local CCG should help you with this, either a search or referral. The BDS site list some more.

Having said that, I myself will/would take the Eurostar to Paris and have NA done there privately.


Thank you for your reply. I actually do have private healthcare insurance. What I do not have is 100% confidence in having treatment here.

The NHS is usually about 15 years behind in any kind of medical treatment and if we go privately, they have still all been trained in the NHS. One if the private doctors here is a dermatologist, yet I would have thought speciality in hand surgery should mandatory.

If Dr Eaton were still practicing, I would get on a plane to Florida.

The combination of Xiaflex and N/A together as Dentler practices appears to help with re-occurrence.

Who would you contact in Paris?


Thank you very much for helping me. I am really worried as I am single and live alone and do not want to end up with my fingers crippled or amputated.

K

01/24/2014 21:00
KatherineG 
01/24/2014 21:00
KatherineG 
Re: Any advice

wach:
People from the UK used to travel to Paris for NA but since the endorsement of NA by NICE and several clinics in the UK doing NA, I guess that kind of tourism became less popular. Why not having NA in the UK? The combination of NA with Xiaflex is a specialty and certainly not useful for every treatment.

Wolfgang

Wolfgang thanks for the reply. The real appeal for me is the doctors attempt to do their best, whereas British Doctors are always very slow with new ideas.

With thanks

K

01/24/2014 21:48
spanishbuddha 

Administrator

01/24/2014 21:48
spanishbuddha 

Administrator

Re: Any advice

In Paris I would contact one of the doctors on this list http://www.dupuytren-online.info/NA_list..._countries.html.

If you search on this forum you get some posts with feedback from people who have been to see Dr Manet-Chopin or Dr Lermusiaux. The teaching hospital is within walking distance of the Eurostar station, but I would plan a small extended weekend holiday trip and possibly stay in Central Paris, as it's so easy to get around by Metro (just like London tube).

Best wishes and please let us all know your plans and come back with your success story.

01/25/2014 04:11
Seph 
01/25/2014 04:11
Seph 

Re: Any advice

KatherineG; A couple of points:

1) You say "One if the private doctors here is a dermatologist, yet I would have thought speciality in hand surgery should mandatory". In my view this is not a task for a dermatologist but does not need to be a surgeon. In Paris the doctors that I have found performing NA are Rheumatologists. Surgeon tend to want to do surgery while the Rheumatologists in Paris try to avoid surgery but they do work with hand surgeons when they think it necessary.

2) I still travel to Paris for NA as I would rather see someone who has done thousands of procedures than a trainee who may or may not fully believe in NA. For me it is a slightly bigger exercise as I live in Sydney but it is cheap and simple. Cost per hand is 300 euros and the procedure takes about 20 minutes.

3) The Paris doctors perform NA in their consulting rooms not in the hospitals. No referrals required. Simply send photographs direct to the doctor and make an appointment. Dr Manet-Chopin's rooms are next to the train station at Place d'Italie so you can stay anywhere in central Paris and get there in 10-15 minutes. Dr Badois is out of Paris at Soisy sous Montmorency but still not a big deal. 20 minutes by train from Gare du Nord.

4) In the past I have seen both Dr Badois and Dr Manet-Chopin and I have no hesitation in recommending either. My understanding is that Dr Lermusiaux is now retired.

Good luck.

01/25/2014 17:56
KatherineG 
01/25/2014 17:56
KatherineG 
Re: Any advice

Seph:
KatherineG; A couple of points:

1) You say "One if the private doctors here is a dermatologist, yet I would have thought speciality in hand surgery should mandatory". In my view this is not a task for a dermatologist but does not need to be a surgeon. In Paris the doctors that I have found performing NA are Rheumatologists. Surgeon tend to want to do surgery while the Rheumatologists in Paris try to avoid surgery but they do work with hand surgeons when they think it necessary.

2) I still travel to Paris for NA as I would rather see someone who has done thousands of procedures than a trainee who may or may not fully believe in NA. For me it is a slightly bigger exercise as I live in Sydney but it is cheap and simple. Cost per hand is 300 euros and the procedure takes about 20 minutes.

3) The Paris doctors perform NA in their consulting rooms not in the hospitals. No referrals required. Simply send photographs direct to the doctor and make an appointment. Dr Manet-Chopin's rooms are next to the train station at Place d'Italie so you can stay anywhere in central Paris and get there in 10-15 minutes. Dr Badois is out of Paris at Soisy sous Montmorency but still not a big deal. 20 minutes by train from Gare du Nord.

4) In the past I have seen both Dr Badois and Dr Manet-Chopin and I have no hesitation in recommending either. My understanding is that Dr Lermusiaux is now retired.

Good luck.

Thank you for your fantastic help you have really lifted my spirits. I will come back again and best wishes.

Katherine

01/25/2014 21:37
GaryBall 
01/25/2014 21:37
GaryBall 
Re: Any advice

[quote


What a strange disease it is. Also I should add that I was taking cod liver oil plus collagen (I think) and wonder if that triggered DD.

With thanks.

K

I have been taking cod liver oil for 25 years....I have since stopped...I know of know scientific link between DC and cod liver oil.....

Glucosamine and condroiton come up a lot in DC patients...although the evidence is just anecdotal...

If you are considering NA from the uk I would take a long look at Seph posts on the forum.....there is a lot of expertise in France for this procedure....

Wishing you the best

Gazza

01/26/2014 10:30
KatherineG 
01/26/2014 10:30
KatherineG 
Re: Any advice

Thank you all who have replied. It really is reassuring to have people come back and try to help.

I am considering going the Paris way and will read through the comments here.

Regards

Katherine: smile:

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