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Some reassurance please!
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01/18/2009 19:00
petersmith 
01/18/2009 19:00
petersmith 
Re: Some reassurance please!


Hi Wolfgand
Thats quite interesting article as Id got the impression from UK surgeon I saw they didn't like it in the UK at all, as the surgeon told me that NA is "dangerous and experimental!". Ha Ha!

I think in the UK that the knowledge of alternertives to surgery varies from region to region. I understand Poole hospital do Radiation and in Derby they do NA and I have been told there may be a doctor in London who does NA too, so while there is knowledege perhaps it depends maybe where you live whether you will be told about different treatments to make an informed decision....which is why this site is so good.

Be G8 if NA became more widely known about so that people can make informed choices early on as the NHS link you posted sugests and more UK doctors were aware of it.

The first I heard about NA was when I discovered this website 24 hours before I was due to have surgery last summer and after an hour thinking about it (in turmoil)I grabbed the phone and cancelled that surgery at my local hospital, and I felt real bad at the time about cancelling at such short notice. But at same time I feel real good later on that I made a better decision for me. I did for one hour after finding out about NA seriously consider going ahead with the surgery that day so that the hospital didnt think I was impolite or rude in cancelling it

At the same time I figured that as Id not been told about any other method which might work I felt it reasonable to investigae NA further. and Im very glad I did as my NA worked so well even though it was quite a severe case and a tricky position on the little finger

I know that for me I made the right choice but I shudder to think that I could have had needless surgery with general anaesthetic and skin grafts if Id not been curious to look on the internet and found this site the day before I was due to have surgery last summer. Phew! That was a near miss!

For me cancelling that surgery in the UK and having NA in Paris instead was the best decision I ever made. If it came back I loved Paris and be happy to go again as its such a small procedure that it doesnt spoil a stay in Paris. I still cant believe how close I came to getting such an invasive procedure as surgery done in the UK when it was made perfect in 15 mins in Paris without any surgery

01/19/2009 00:06
jonni 
01/19/2009 00:06
jonni 
Re: Some reassurance please!

Tricky business this DC. As many of you would probably agree, it's really hard to know exactly what to do. In response to my swelling, unfortunately it continues and i think it is directly caused by my DC, because the cords and the nodule are now causing me pain. I'm also getting some sharp pains when i press my fingers down e.g with a remote control.

As you can imagine i'm really quite worried. My hand has deteriorated so quickly and it's really worrying me about the future implications, epsecially as playing the piano requires such dexterity. I have my 2nd appointment with the last doctor i saw tomorrow. He actually has DC himself but in his case he's had his for years with no progression, so hopefully he'll see how mine's progressed and maybe have some useful suggestions. Unfortunately the only options he spoke of when i last saw him, was surgery when my hand could no longer lie flat on the surface. Well my hand doesn't do that anymore so i assume he'll suggest surgery.

I'm really desperate for as many positive results from either NA or surgery as possible. Thank you to the advice that has already been given to me, believe me it's all been absorbed, i just need some more as there are still differences in opinion, which i'm sure will continue, so please, if you so happen to read this and haven't given your opinion already, it would be greatly appreciated as i know that i'm going to have to act pretty quickly as i'm already beginning to struggle to use my hand.

I live in Bristol, UK, so if anyone knows of any relevant hospitals or doctors that would be worth speaking to reasonably near by, then please pass me on any information concerning them. I know Poole isn't too far but i'm not sure how long it would take to get an appointment- i really need something to happen quite quickly, which makes me think NA would be the best option.

Thanks again and i'll let you know how my appointment goes tomorrow.

01/19/2009 06:46
wach 

Administrator

01/19/2009 06:46
wach 

Administrator

Re: Some reassurance please!

Jonni, the UK based doctors listed on http://www.dupuytren-online.info/NA_list_UK.html offer NA and are experienced with Dupuytren's disease. Regarding pros and cons of NA, surgery, or radiotherapy you might also have a look at the according pages of our web site, e.g. for potential side effets on http://www.dupuytren-online.info/NA_side_effects.html, http://www.dupuytren-online.info/dupuytr...ideeffects.html and http://www.dupuytren-online.info/radioth...de_effects.html .

Wolfgang

01/19/2009 06:50
wach 

Administrator

01/19/2009 06:50
wach 

Administrator

Re: Some reassurance please!

Hi Peter, I am glad you found our web site just in time! Seeing Paris definitely is an upside of getting treated in France! I have been there twice (for business, not for NA) and loved it. Although one time it was in November it was still fun.

Wolfgang

Quote:




... That was a near miss!

For me cancelling that surgery in the UK and having NA in Paris instead was the best decision I ever made. If it came back I loved Paris and be happy to go again as its such a small procedure that it doesnt spoil a stay in Paris. I still cant believe how close I came to getting such an invasive procedure as surgery done in the UK when it was made perfect in 15 mins in Paris without any surgery



02/08/2009 14:10
painter

not registered

02/08/2009 14:10
painter

not registered

Re: Some reassurance please!

Hi Jonni, I have Dupuytren's in both hands. My palms ache and many things that cross the cords, such as a steering wheel or a bucket, hurt. My father and sister also have it and don't have any pain. I had not read of anyone else complaining of this until reading your post. Thanks.

02/08/2009 17:43
myway53 
02/08/2009 17:43
myway53 
Re: Some reassurance please!

I too have been experiencing much pain in my palms when driving or lifting. I was told to take an over the counter anti-inflammatory such as motrin or aleve. I've noticed it also when driving and since it's winter in NY I've taken to wearing gloves when driving to cushion my hands.

02/08/2009 19:54
TrevB 
02/08/2009 19:54
TrevB 

Re: Some reassurance please!

Quote:



There are thousands of surgeries done every year around the world for Dupuytren's. There are very, very few who have complained about the results. You can bet that they would be on this forum complaining in droves if the fear presented here was accurate on a wide scale.



That may or may not be true but the fact remains that in the UK you're told to sit and wait for a surgical solution if you get contracture. Surely surgery should be potentially the last option and not the first. Thanks to this website and personal experiences you're made aware of other options. The options are few but I was only told of one, why? At the end of the day the choice is still yours if you don't like them and think that surgery is the best first step

Cambidgeshire, UK.

Edited 02/08/09 21:56

02/12/2009 15:16
Mary 
02/12/2009 15:16
Mary 
Re: Some reassurance please!

I too have pain, it is getting better now but my pain was on the back of my hand, following the cords route from knuckle to wrist. It stopped me typing, knitting or doing anything that required dexterity but as I said, It is getting better albeit slowly.

02/12/2009 18:34
Jonni Kent

not registered

02/12/2009 18:34
Jonni Kent

not registered

Re: Some reassurance please!

Hi all, hope all is well.

I had an appointment with a surgeon last week- £100 for about a 5 minute meeting, who unfortunately confirmed that they couldn't do any procedures yet as the cords weren't prominent enough. This means that the risk is too great due to being unsure of any nerves inbetween the skin and the cords. Unfortunately that means that i'm going to have to just wait until it gets worse which is frustrating, however permanent damage would be a millions times worse. The positive thing is that the pains in my forearm and wrist have almost gone and i'm still able to play the piano almost freely and i can now operate the computer mouse without any pain. I still have pain with pressure on the cords though, so cycling and playing squash is still painful.

A slightly frustrating thought, is that i wished the Radiotherapy procedure had been tested further and that GPs would know about it and be able to suggest it as a possible preventative, therefore avoiding the waiting until it gets worse, which no doubt it will. I do understand though, that testing would cost tax payers money, however i imagine most people on this website pay tax and would be more than happy for some of it to be spent on this disabling disease, as it not only affects the person who has the DC but others around them as well, may it be with loved ones or fellow workers.

Anyway good luck with all your dealings with DC, i'm trying to get on with things as normal, just wish mine was pain free.

Jonni

02/12/2009 21:40
TrevB 
02/12/2009 21:40
TrevB 

Re: Some reassurance please!

Quote:



A slightly frustrating thought is that I wished the Radiotherapy procedure had been tested further and that GPs would know about it and be able to suggest it as a possible preventative, therefore avoiding the waiting until it gets worse, which no doubt it will.


I tend to agree. The problem is that there does not seem to be too much data out there and certainly nothing from the UK. I'm half way through my treatment and my GP was initially supportive but when I went to see him after the first phase I felt that he was disappointed by the lack of feedback to both me and him and the lack of what he would consider reliable data about RT for Dups. I'm not sure what information will be forthcoming after phase two but I can't really see him recommending it for anyone else unless they suggest RT themselves. I said to him that RT was suggested to me on here about 3 years ago when my first ring finger nodule appeared but he totally disagreed with that was very much wait and see at that stage.

My main gripe (albeit minor if RT does the job) is having to travel so far for NHS treatment and paying 5% or more of my annual salary on travel and accommodation costs when the equipment, and I would imagine the expertise, is available locally. I have trouble understanding the reasons for that but thankfully we have someone somewhere willing to provide the service. Dr Goode did mention that one of his colleagues (in Carlisle I think he said) could possibly offer RT so it might be worth following that lead if you live up that end of the country

Cambidgeshire, UK.

Edited 02/12/09 23:52

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