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Some reassurance please!
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01/14/2009 00:09
jonni 
01/14/2009 00:09
jonni 
Some reassurance please!

Hi all,hope all is well & all treatments & frames of minds are in a good place.

Unfortunately my mind isn't in a brilliant state. I've read many of the posts & replies & have found a huge amount of information in a very short space of time, so thank you for being so honest & informative. However nothing is really making me feel positive about my situation.

If i go on a little,i do apologise but it's just begun to sink in what i potentially might face.Also i don't want to sound self pitying,i'm absolutely sure people have this condition far worse than i do,but we all have our own circumstances,situations & futures to deal with,so please bear with me.

I'm 30 yrs old & was diagnosed about a year ago.I was given the'watch & wait' by the Dr i saw but after the initial nodule grew,went to another Dr who booked an appointment with a muscular-skeletal specialist.My experience was a frustrating one,as the Dr made it very clear that he was the Dr & that my condition was not progressive & that again,i should just 'watch & wait'.Well that appointment was mid November & low & behold,my condition has progressed to the extent that it is really effecting my everyday life.

My main concern is a cord that has surfaced,leading from my little finger down towards the centre of my palm about 5cm.This is causing me a lot of pain,especially with pressure exerted on it.A cord has also appeared leading down from the nodules but presently not causing me pain.The nodules are painful & are annoyingly positioned about 2cm down from my middle finger- prevents me from being able to truely grab hold of things.Contracture is occuring with my middle finger but isn't huge,probably around 20 degrees & there's no contraction with my little finger despite the cord.A side effect of this is that i'm now getting pains in my forearm which is really beginning to hinder me.

I'm finding this all very difficult because i'm an aspiring music producer/ composer.I've played the piano all my life & anyone that knows me,know that being successful in music is what drives me day to day.I get on average 2-3 hours sleep a night during the week,due to a full days work & then working on my music til the birds sing & toasters pop-start the day job at 9.30am.I'm finding it more difficult to play the piano & beginning to find it increasingly difficult to use the mouse on my pc.Trouble is,when composing on the pc,probably 90% of the time i'm using the mouse-this is definately beginning to effect my forearm.The cord is a big problem because a bike is my form of transport & is becoming a painful experience.It's also making it difficult to write & has stopped my regular playing of squash-the list goes on.

I've a 2nd appointment with the muscular-skeletal Dr & i'm not sure what to do,all i know is that if i leave this, my hopeful future career might be at risk.I've read about Poole hospital but not sure if i'm too far gone & is surgery drastic but the most permanent?

Thanks for reading, much appreciated

01/14/2009 01:19
JAnnRunner 
01/14/2009 01:19
JAnnRunner 
Re: Some reassurance please!

Jonni,

I would not only get a 2nd opinion I would get a third! When you start to operate there is a risk of relapse and to progress the disease. I know you said you have 20 degree contracture in you pinky, that is not too bad.. is there in nodules in the knuckles of the pinky or just the palm cord pulling down on the pinky?? if it is in the finger I would not operate I had to failed surgeries of the same pinky and it is almost 80 degrees. if it is in the palm it sounds like NA would work best for you. My first surgey was when I was about 30 I am 40 now
J Ann

01/14/2009 18:34
Mary 
01/14/2009 18:34
Mary 
Re: Some reassurance please!

Jonni, I agree, ask your GP to refer you to Poole, it can't hurt just to go for another opinion. I went to my GP in November to ask for a referral, I had a letter from Poole in December for a January appointment so things happen very quickly (surprising for the NHS!!)

Dr Goode is very nice and he will tell you if you are a good candidate for the treatment and will talk you through the process.

Let us know what you decide.

Best wishes

Mary

01/15/2009 03:53
jimh 
01/15/2009 03:53
jimh 
Re: Some reassurance please!

Don't let anyone talk you into surgery at this point. Start reading about needle aponeurotomy (NA) and injectable collagenase, soon to be marketed as Xiaflex by Auxilium. These are the best current and future treatments. Surgery, the traditional treatment, can create as many problems as it solves. NA and Xiaflex are far less invasive and far more repeatable. At the age of 30 you want to avoid surgery at all costs until even better treatments come along.

I've had this for over 20 years and have had 2 surgeries - which I would not repeat today.

01/16/2009 00:08
jonni 
01/16/2009 00:08
jonni 
Re: Some reassurance please!

Firstly i want to say thank you all for replying to my post, it is reassuring to get some good honest advice from people who have real experiences with the condition. As you all probably know, there aren't that many people who have ever heard of DC and the doctors so far haven't exactly been a fountain of knowledge- hopefully that will change with my appointment on Monday.

Unfortunately there has been further development, even since i wrote the last post which was 2 days ago. I now have swelling on my hand, the most noticable area being where the cord has developed below my little finger. I'm also feeling pain around my wrist area now and my forearm feels extrememly tight and causing me pain on both the inside and outside of my arm. This is worrying me because the cord surfaced around the beginning of December and now its got so bad that i'm struggling to use my hand and none of this seems to be directly connected by the contracture but the actual cord itself. I've read about the different procedures but i'm not sure where my own circumstances are going to lead me. I know that i'm struggling and need something to be done quickly.The potential problem i can see with performing NA on the cord, is that although it's very prominent, it's actually not very visible and can only be recognised when feeling my hand. This leads me to believe that it's reasonably deep in my hand and could be quite hazardous.

What do you think and have you experienced or heard about people having swelling and issues with their forearms?

Thanks again for sharing your advice and experiences. Isn't it somewhat comforting to know that people who've never spoken or even met you, care enough about a stranger to spend their free time in trying to help them- i think it's a pretty wonderul thing!

01/16/2009 18:30
jimh 
01/16/2009 18:30
jimh 
Re: Some reassurance please!

Dupuytren's doesn't normally cause significant swelling, or extend beyond the palm and fingers. It does change the way the hand 'feels' somewhat, to the extent that it's actually restricting movement. This can be a subtle thing but may be quite noticeable to a musician (I used to be one). Your brain naturally adapts over time and starts to regard your impaired hand as 'normal'.

There is some inflammation in the earlier or active phases of this condition, but not enough to cause pain.

Don't waste your time on GPs or orthopedic surgeons. Most of them know little about Dupuytren's and will give you a stock reply - wait until you can't put your hand flat on a table, then have surgery. That information is seriously out of date and doesn't take into account the special needs of someone like a musician.

Today's NA practitioners can often neatly sever a cord with so little disruption that you'll be playing again in a couple of days. By contrast, full recovery from surgery takes months to a year and is a bit of an ordeal. Xiaflex is a new, injectable drug that can also sever a cord with minimal side effects. You absolutely need to start reading about these treatments and if possible, I suggest visiting one of the NA specialists soon to get an opinion. Those guys have made Dupuytren's their specialty and can give you good advice.

01/17/2009 00:50
callie 
01/17/2009 00:50
callie 
Re: Some reassurance please!

Jonni,
Your situation sounds like there is something going on that may, or may not be Dupuytren's. Normally Dupuytren's is not close to as fast acting as you describe. Ask questions because I would be surprised if it is Dupuytren's that is causing your problems.

01/17/2009 14:19
Peter Smith

not registered

01/17/2009 14:19
Peter Smith

not registered

Re: Some reassurance please!

Jonni
I think you will find that in the UK the procedures favoured by hospitals is surgery because they simply dont know anything else and are pretty ignorant of the vastly better procedures like NA

Do not allow them to talk you into surgery whatever you do! I cant comment on your wrist whiich may be unrelated or due to strain of using your wrist instead of your fingers as they become uncomfortable.

You may fiind that UK doctors try to presure you into surgery, miy potential surgeon at Lister Hospital in Stevenage wrote to me and my GP (when i cancelled my surgery with him) to say that NA was "dangerous and experimental"!!!! Which pretty much shows how uniformed the UK surgeons are. Part of the problem in the UK is that DC tends to come under the domain of Plastic Surgery departments and the only tool they know is a scapel.

I remember when my DC started I had some big lumps appear very rapidly over a few weeks and went to my local doctor who said she didnt know what it was and let her know if it got worse so I ignored it and it did get worse. The lump of the cord giot quite big very quickly and then the contracture started vafter that.Over 2 years until it got to 100 degrees on the small finger PIP joint which is quite a difficult one apparently

If you are worried I would personally recommend you hop accross the channel and see Dr Badois who is sooo knowledgeable and will be able to fix it Im sure. For 200 euros it will likely be the best money you will ever spend.

01/18/2009 15:19
wach 

Administrator

01/18/2009 15:19
wach 

Administrator

NA in the UK

If your NHS doctor is not aware of NA you might also poiint him/her to

http://www.nice.org.uk/nicemedia/pdf/ip/...infoenglish.pdf

Wolfgang

01/18/2009 18:52
callie 
01/18/2009 18:52
callie 
Re: Some reassurance please!

Peter,
That is quite a leap, You said, "my GP (when i cancelled my surgery with him) to say that NA was "dangerous and experimental"!!!! Which pretty much shows how uniformed the UK surgeons are."

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.

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