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Newbie --diagnosed today
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02/07/07 02:39
Monica 
02/07/07 02:39
Monica 
Newbie --diagnosed today

HI, I just posted this on the old site a couple of hours ago but just saw you moved so I copied over my post from the Biospecifics site. It appears below. Glad to see there is a new forum!

I was just diagnosed with Dupuytren's today after going back and forth between several doctors. I had two "knuckle pads" develop on one hand last year, then one on the other hand, over the course of about 3-4 months. I was a little concerned because it seemed to be spreading and is painful when making a tight fist or doing tight motions like tying things, slipping on pillowcases, etc. Also waking up in pain from clenching hand in sleep. Could deal with this and cosmetic issues if I thought it wasn't going to get worse. At about the same time, I noticed that my left index finder was becoming gradually bent, with little tough lumps and tight skin pulling on the front of my finger between the palm joint and the first knuckle (PIP?). I didn't know what that was (thought it was a bad cut that healed wrong or something). I never thought the two things were related at all. Anyway, after hearing that diagnosis I did an internet search and found this forum. I was happy to see there are others out there with these issues (I really don't mean that the way it sounds).
I am a little concerned because I am only 31 years old and female, both of which are apparently unusual for this disease, and it also seemed to happen fairly quickly and is getting worse. Also the doctor said it is a little unusual to develop on the index finger, rather than the ring or little finger. I don't have anything on either palm though, just half my finger, which is about 20% bent now according to my doctor. Anyone else had this happen a) relatively young and b) involving the index rather than ring/pinkie finger(s)? The doctor is going to check in a few months and see if the finger is worse, then probably do surgery. He didn't discuss surgery for the knuckle pads, which are actually more painful than the bent finger. Is that an option? Thanks

02/07/07 10:24
Wolfgang

not registered

02/07/07 10:24
Wolfgang

not registered

Re: Newbie --diagnosed today

Hi Monica, typically it is men in the 40s or 50s who get Dupuytren and women a little later. I myself acquired it with 35 but there are reports of people in their 20s and even kids can have it.

You don't have to be overly concerned about it, it is not lethal, more of an inconvenience. But strongly bent fingers can be quite inconvenient and it sure maks sense to slow down the progression and/or correct the already existing contracture.

Surgery is a very common therapy for Dupuytren but it might have severe side effects (many surgeries go well though!). You can find an overview on therapies and side effects on this web site (www.dupuytren-online.info) and additional comments in this forum.

Probably the majority of patients of this forum will recommend NA (needle aponeurotomy) as first line fo defence. NA is an established therapy and available in the US, though not yet wide spread. If you look through our web site you will find other therapies that are not as readily available or still experimental but might also help to slow down progression.

It is difficult to predict individually which therapy helps or which has severy side effects. One of the characteristics of Dupuytren is that patients react quite differently to specific therapies. The best advice is to not get scared, to not let this disease spoil your life, to get informed as well as possible, to always consult with your MD, and to finally decide for the therapy that you and your doctor consider best.

Good luck to you!

Wolfgang

02/07/07 16:40
Elinor

not registered

02/07/07 16:40
Elinor

not registered

Re: Newbie --diagnosed today

I was diagnosed with Dupreyton's disease last week and appear to have now two knuckle pads which seem to have come overnight. The only option I have been given is surgery but not until I can no longer do the table top test.
I hope you get on alright, best wishes.

02/07/07 22:38
ellenpao 
02/07/07 22:38
ellenpao 
Re: Newbie --diagnosed today

Monica -I too have knuckle pads (AKA Garrod's pads) on my index and middle fingers of both hands. My ring and pinky fingers are not invoved either - although in the last 5 years or so I have developed cords and pits in my palms. I am female, age 58, and have had 7 NA procedures.

My first knuckle pad appeared when I was about 35 - and stayed small for years, so don't worry - you may not progress too much for a long, long time. When you do, NA is a miraculous option. I go every 50,000 miles or so for a tune up!

02/08/07 02:52
Mark_D 
02/08/07 02:52
Mark_D 
Re: Newbie --diagnosed today

Quote:



HI, I just posted this on the old site a couple of hours ago but just saw you moved so I copied over my post from the Biospecifics site. It appears below. Glad to see there is a new forum!

I was just diagnosed with Dupuytren's today after going back and forth between several doctors. I had two "knuckle pads" develop on one hand last year, then one on the other hand, over the course of about 3-4 months. I was a little concerned because it seemed to be spreading and is painful when making a tight fist or doing tight motions like tying things, slipping on pillowcases, etc. Also waking up in pain from clenching hand in sleep. Could deal with this and cosmetic issues if I thought it wasn't going to get worse. At about the same time, I noticed that my left index finder was becoming gradually bent, with little tough lumps and tight skin pulling on the front of my finger between the palm joint and the first knuckle (PIP?). I didn't know what that was (thought it was a bad cut that healed wrong or something). I never thought the two things were related at all. Anyway, after hearing that diagnosis I did an internet search and found this forum. I was happy to see there are others out there with these issues (I really don't mean that the way it sounds).
I am a little concerned because I am only 31 years old and female, both of which are apparently unusual for this disease, and it also seemed to happen fairly quickly and is getting worse. Also the doctor said it is a little unusual to develop on the index finger, rather than the ring or little finger. I don't have anything on either palm though, just half my finger, which is about 20% bent now according to my doctor. Anyone else had this happen a) relatively young and b) involving the index rather than ring/pinkie finger(s)? The doctor is going to check in a few months and see if the finger is worse, then probably do surgery. He didn't discuss surgery for the knuckle pads, which are actually more painful than the bent finger. Is that an option? Thanks




Hang in There, Monica.


Lots of us have Dupuytren's, and many (including me) recommend N.A.

You'll see a lot about N.A. on our site.

Good luck.

Mark

02/08/07 03:50
jim_h 
02/08/07 03:50
jim_h 
Re: Newbie --diagnosed today

The knuckle pad don't appear overnight, what happens is that you suddenly notice them. Like the previous posters said, don't worry about them too much. There seems to be inflammation involved at first, which makes them larger and more sensitive - later on the inflammation goes away and the pads will seem smaller. They don't affect the mobility of the joints as far as I've seen.



02/08/07 15:23
SteveCal 
02/08/07 15:23
SteveCal 
Re: Newbie --diagnosed today

Hi, my name is Steve. I also have recently developed DC at the ge of 40 (now 41). It started in my left hand. I noticed a pea sized lump on the upper line in my palm. a little painful. I had just started back doing karate after 20 something years. I that it was a calus or calcium deposit. Then another one just under ther first. The cord was quickly pronounced (within 6 months). I thought I had tendonitis from all the recent strain of hitting pads push ups and other activities I hadn't done in a long time.

the cord seemed to grow downward from just under the MCP down into the Palm. I went to the doctor who basicly said to do nothing until it gets worse. He said he could give me cortizone injections. I asked him about NA. He wasn't to keen on the idea he knew of someone in Florida but said there are too many risks such as nerve damage.

It has rapidly progressed in my left hand and is starting to draw in my ring finger just effected the MCP. What alarms me most is from what I have read it is supposed to be a painless disease. My hand is always tender. Sometimes I will get a very sharp pain(s) lasting just a second or so but very strong. At night my hand cramps up and is a little stiff in the morning.

In my right hand I have noticed a small nodule mid palm under my ring finger and two tiny ones just under my midle finger. No pain no nothing just tiny lumps.

At what point do you recommend NA?

Thanks,

Steve

02/08/07 20:32
Randy_H 

Moderator

02/08/07 20:32
Randy_H 

Moderator

Re: Newbie --diagnosed today

Steven

Your hand doc apparently still thinks the World is Flat. The data that clearly shows that NA is safer than Open Surgery (OS) was presented to the American Society of Surgery of the Hand (ASSH) at their last national conference. He probably wonders why you complain of pain because he's apparently been taught that it's painless. Another example of his rigid ignorance.

Yes, my frustration with CHS (Certified Hand Surgeons) is showing. Perhaps that's because I have a partially crippled left hand from traditional (OS).

NA is not a cure all. It must be repeated often in some cases. But it is *very* safe and effective. You must have a chord that can be snapped for it to work. The most definitive information of the procedure is found at:

http://www.handcenter.org/newfile16.htm

Yep, its Eaton, that "someone in Florida" your doc mentioned. At least he got the state right :-)

There may be a correlation between your foray back into karate and your Dups onset my friend. Trauma to the hand *is* sometimes related.

02/09/07 01:23
SteveCal 
02/09/07 01:23
SteveCal 
Re: Newbie --diagnosed today

Randy,

thank you for your reply. I am going to follow up with a Dr. Pess In Central Jersey. He is about i hour south of me.

To anyone in New Jersey here is a link.

http://www.centraljerseyhand.com

If it old news here forgive me. I am new and haven't read all the threads yet.

Steve

02/09/07 08:32
Wolfgang

not registered

02/09/07 08:32
Wolfgang

not registered

NA in the US

Hi Steve, you can find a list of NA specialists in the US at

http://www.dupuytren-online.info/needle_aponeurotomy.html

Also SuzieQ has recently been posting an up to date list at this forum. Just in case you want to travel outside NJ!

Wolfgang

Quote:



Randy,

thank you for your reply. I am going to follow up with a Dr. Pess In Central Jersey. He is about i hour south of me.

To anyone in New Jersey here is a link.

http://www.centraljerseyhand.com

If it old news here forgive me. I am new and haven't read all the threads yet.

Steve



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