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Help and Advice required!
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10/02/2012 05:47
Amarante 
10/02/2012 05:47
Amarante 
Help and Advice required!

Hi There,

I have had DD now for around 6 years, affects right hand (am righthanded), mainly wedding finger, plam is quite disfigured although fingers still staright, but I cant bed wedding finger back at all.

I use computer a lot and play tennis a lot too. I am also Type 1 Diabetic - insulin dependent

4 years ago I went to see Dr Merlusiaux in Paris and he conducted Needle Aponeurotomy on my hand. all that has done is left 2 holes in the palm.

I have also been corresponding with DR bainBridge in Derby, and he said he needs a referral from my GP. My GP refused to say its not bad enough yet and I need to wait until my fingers are locked at an angle.

I am conscioous to try something before I get to this stage, woudl anybody be willing to try Xiapex on me, in France, Spain or UK, without a referral, I am happy to pay!

Thanks

Steve

10/02/2012 06:18
spanishbuddha 

Administrator

10/02/2012 06:18
spanishbuddha 

Administrator

Re: Help and Advice required!

Amarante:
Hi There,

I have had DD now for around 6 years, affects right hand (am righthanded), mainly wedding finger, plam is quite disfigured although fingers still staright, but I cant bed wedding finger back at all.

I use computer a lot and play tennis a lot too. I am also Type 1 Diabetic - insulin dependent

4 years ago I went to see Dr Merlusiaux in Paris and he conducted Needle Aponeurotomy on my hand. all that has done is left 2 holes in the palm.

I have also been corresponding with DR bainBridge in Derby, and he said he needs a referral from my GP. My GP refused to say its not bad enough yet and I need to wait until my fingers are locked at an angle.

I am conscioous to try something before I get to this stage, woudl anybody be willing to try Xiapex on me, in France, Spain or UK, without a referral, I am happy to pay!

Thanks

Steve
Hello Steve.

If your fingers are straight then there is very little or no contracture around the PIP joint. What about contracture in the palm about the MCP joint?

NA and Xiapex are used to sever/dissolve cords causing contracture (usually of 20 degrees or more in the UK) allowing the fingers or palm to straighten. A surgeon will advise whether you are a candidate for either, but from your description it is not so clear.

You are right. UK GP's will not refer until there is a contracture, and then they are referring for NA or surgery or in some cases these days Xiapex. Because NICE now approves RT as an earlier option I would insist on a referral to a hand consultant just so that you can get early advice, monitoring, and plan a course of treatment even if none is done now.

It does sound like RT could be a option at your stage though, have you looked into that? That would still be a referral battle to fight though in the NHS. Where are you?

Edited 10/02/12 09:19

10/02/2012 06:22
wach 

Administrator

10/02/2012 06:22
wach 

Administrator

Re: Help and Advice required!

Hi Steve,

the indication for NA or Xiapex are pretty much the same. If you have no contracture, both procedures won't work. Both work better on base (MCP) than on middle (PIP) joints.

I am in full support of Spanishbuddha that in a pre-contracture stage radiotherapy might be the only option to prevent further disease progression.

Wolfgang

Amarante:
Hi There,

I have had DD now for around 6 years, affects right hand (am righthanded), mainly wedding finger, plam is quite disfigured although fingers still staright, but I cant bed wedding finger back at all.

I use computer a lot and play tennis a lot too. I am also Type 1 Diabetic - insulin dependent

4 years ago I went to see Dr Merlusiaux in Paris and he conducted Needle Aponeurotomy on my hand. all that has done is left 2 holes in the palm.

I have also been corresponding with DR bainBridge in Derby, and he said he needs a referral from my GP. My GP refused to say its not bad enough yet and I need to wait until my fingers are locked at an angle.

I am conscioous to try something before I get to this stage, woudl anybody be willing to try Xiapex on me, in France, Spain or UK, without a referral, I am happy to pay!

Thanks

Steve

10/02/2012 06:27
Amarante 
10/02/2012 06:27
Amarante 
Re: Help and Advice required!

spanishbuddha:
Amarante:
Hi There,

I have had DD now for around 6 years, affects right hand (am righthanded), mainly wedding finger, plam is quite disfigured although fingers still staright, but I cant bed wedding finger back at all.

I use computer a lot and play tennis a lot too. I am also Type 1 Diabetic - insulin dependent

4 years ago I went to see Dr Merlusiaux in Paris and he conducted Needle Aponeurotomy on my hand. all that has done is left 2 holes in the palm.

I have also been corresponding with DR bainBridge in Derby, and he said he needs a referral from my GP. My GP refused to say its not bad enough yet and I need to wait until my fingers are locked at an angle.

I am conscioous to try something before I get to this stage, woudl anybody be willing to try Xiapex on me, in France, Spain or UK, without a referral, I am happy to pay!

Thanks

Steve
Hello Steve.

If your fingers are straight then there is very little or no contracture around the PIP joint. What about contracture in the palm about the MCP joint?

NA and Xiapex are used to sever/dissolve cords causing contracture (usually of 20 degrees or more in the UK) allowing the fingers or palm to straighten. A surgeon will advise whether you are a candidate for either, but from your description it is not so clear.

You are right. UK GP's will not refer until there is a contracture, and then they are referring for NA or surgery or in some cases these days Xiapex. Because NICE now approves RT as an earlier option I would insist on a referral to a hand consultant just so that you can get early advice, monitoring, and plan a course of treatment even if none is done now.

It does sound like RT could be a option at your stage though, have you looked into that? That would still be a referral battle to fight though in the NHS. Where are you?


HI there thanks for that! NO have never looked into RT, the finger is actually fine, a lot of disfigurement in my plam though, sometimes it gets painful too.
I am British but live in Moscow, I still see my GP in the UK, but also spend a lot of time in Barcelona and Cannes, I was thinking of scheduling an appointment with somebody in Cannes, but I really want to avoid surgery as I know a colleague who ahd surgery in the UK and since then his hand is a complete mess....

10/02/2012 06:28
Amarante 
10/02/2012 06:28
Amarante 
Re: Help and Advice required!

What does RT involve, maybe I could do it here in moscow?

Amarante:
spanishbuddha:
Amarante:
Hi There,

I have had DD now for around 6 years, affects right hand (am righthanded), mainly wedding finger, plam is quite disfigured although fingers still staright, but I cant bed wedding finger back at all.

I use computer a lot and play tennis a lot too. I am also Type 1 Diabetic - insulin dependent

4 years ago I went to see Dr Merlusiaux in Paris and he conducted Needle Aponeurotomy on my hand. all that has done is left 2 holes in the palm.

I have also been corresponding with DR bainBridge in Derby, and he said he needs a referral from my GP. My GP refused to say its not bad enough yet and I need to wait until my fingers are locked at an angle.

I am conscioous to try something before I get to this stage, woudl anybody be willing to try Xiapex on me, in France, Spain or UK, without a referral, I am happy to pay!

Thanks

Steve
Hello Steve.

If your fingers are straight then there is very little or no contracture around the PIP joint. What about contracture in the palm about the MCP joint?

NA and Xiapex are used to sever/dissolve cords causing contracture (usually of 20 degrees or more in the UK) allowing the fingers or palm to straighten. A surgeon will advise whether you are a candidate for either, but from your description it is not so clear.

You are right. UK GP's will not refer until there is a contracture, and then they are referring for NA or surgery or in some cases these days Xiapex. Because NICE now approves RT as an earlier option I would insist on a referral to a hand consultant just so that you can get early advice, monitoring, and plan a course of treatment even if none is done now.

It does sound like RT could be a option at your stage though, have you looked into that? That would still be a referral battle to fight though in the NHS. Where are you?


HI there thanks for that! NO have never looked into RT, the finger is actually fine, a lot of disfigurement in my plam though, sometimes it gets painful too.
I am British but live in Moscow, I still see my GP in the UK, but also spend a lot of time in Barcelona and Cannes, I was thinking of scheduling an appointment with somebody in Cannes, but I really want to avoid surgery as I know a colleague who ahd surgery in the UK and since then his hand is a complete mess....

10/02/2012 06:40
spanishbuddha 

Administrator

10/02/2012 06:40
spanishbuddha 

Administrator

Re: Help and Advice required!

See the Treatment->Overview from the links at top of page. http://www.dupuytren-online.info/radiation_therapy.html Typical treatment consists of 5 days for about 2 minutes with a dose of 3Gy, repeated several weeks later. It is only done if there are signs and symptoms that the condition is active and progressing. Some hospitals in the UK are doing it on the NHS since it is approved by NICE, but very few. A lot of people in Europe go to Hamburg privately, see the personal stories page on this site.

Edited 10/02/12 09:40

10/02/2012 06:47
Amarante 
10/02/2012 06:47
Amarante 
Re: Help and Advice required!

OK will check it out, Hamburg could be easy for me to get to!

Muchas Gracias!

spanishbuddha:
See the Treatment->Overview from the links at top of page. http://www.dupuytren-online.info/radiation_therapy.html Typical treatment consists of 5 days for about 2 minutes with a dose of 3Gy, repeated several weeks later. It is only done if there are signs and symptoms that the condition is active and progressing. Some hospitals in the UK are doing it on the NHS since it is approved by NICE, but very few. A lot of people in Europe go to Hamburg privately, see the personal stories page on this site.

10/02/2012 08:41
Amarante 
10/02/2012 08:41
Amarante 
Re: Help and Advice required!

I see that its states R is less effective on cords, on my palm I have large lumps and then to the rightof them , longer elongated lines, does that sound like cords?

spanishbuddha:
See the Treatment->Overview from the links at top of page. http://www.dupuytren-online.info/radiation_therapy.html Typical treatment consists of 5 days for about 2 minutes with a dose of 3Gy, repeated several weeks later. It is only done if there are signs and symptoms that the condition is active and progressing. Some hospitals in the UK are doing it on the NHS since it is approved by NICE, but very few. A lot of people in Europe go to Hamburg privately, see the personal stories page on this site.

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righthanded   disfigurement   pre-contracture   fingers   something   bainBridge   conscioous   surgery   Aponeurotomy   contracture   referral   dupuytren-online   Spanishbuddha   wedding   Merlusiaux   required   corresponding   disfigured   description   treatment