| Lost password
553 users onlineYou are not loggend in.  Login
Dupuytren's on palm between thumb and index finger
 1 2 3
 1 2 3
02/08/2012 08:32
Marvcus 
02/08/2012 08:32
Marvcus 
Dupuytren's on palm between thumb and index finger

Hi all.

I'm new to Dupuytren's as I am 12 days out from surgery on what the doctor suspected as a ganglion or inclusion cyst. I am 25, so young for Dupuytren's. In fact, following surgery when the doctor could not positively identify the mass though could rule out the aforementioned cysts, he mentioned Dupuytren's as a possibility though he exclaimed I would be the youngest case he's ever had. Several days later when the lab reports came in, I was informed that it was confirmed Dupuytren's. Of course, researching here and elsewhere I've discovered that I'm not alone in developing Dupuytren's at this age.

My surgery went well and at day 10 when my sutures were removed, after using stretching exercises upon removal of my cast/splint on day 4, the doctor suggested that I need not attend hand therapy due to the already recovered flexion in my hand and thumb. I am still doing the exercises and now attempting scar massage, which I'd appreciate any advice on if anyone can offer any. I'm scheduled for my followup visit in 3 weeks.

It was a relatively quick process from when I noticed the pain, and later formation of a lump/nodule at the top base of my thumb on my palm, to the surgery. An entire period of no more than 5-6 months. I experienced a deep pain in the area when performing tasks like opening the lid on a jar or an act requiring squeezing directly on the area. I found it quite peculiar but I really thought nothing of it as it was only in these specific instances that I noticed it. A couple months later is when I noticed the nodule and steadily the pain and debilitation grew worse, to the point where I would actively avoid gripping with my right hand, including shaking hands, which had become a painful endeavor. As I said, the doctors believed it to be a cyst, requiring excision. The doctor informed us after surgery that the mass was right up against a nerve requiring him to "scrape" the nerve, I suppose explaining the degree of pain it was causing me.

From what I have learned in my research so far, early onset of Dupuytren's is not a good omen for my future relationship with this disease. Also, I've noticed that it is rather rare for Dupuytren's to appear in the area of the hand in which mine occurred. The doctor told me the likelihood of recurrence varies and is hard to gauge, but that I would likely have another incident at some point down the road, hopefully long down the road.

Considering the probable long period of time I will have to acquaint myself with this disease, I figured I'd introduce myself to this forum and learn from many of you the ins and outs of managing life with Dupuytren's, what kinds of things to expect down the road, and how to manage post-operative recovery as that is the stage I am currently in.

I've read some pretty tough stories on here already about others who have gone through difficult recoveries or have experienced serious debilitation from the disease, so I feel fortunate regarding my surgery and how well the recovery has thus far gone. Any information or advice anyone can offer me would be greatly appreciated. How important is early treatment in any recurrence in regards to increasing the success rate and recovery process in any kind of treatment? My father and grandfather also have Dupuytren's though my dad's is on his center palm under his ring finger and causes him no pain. He has been reluctant to have a procedure since he has no finger bending or pain thus far. My grandfather is very elderly and has a hand severely debilitated by it but has decided that he does not wish to put himself through a surgery at his age. Both of them began showing at post 60. Thanks in advance in for any responses.

02/08/2012 09:09
wach 

Administrator

02/08/2012 09:09
wach 

Administrator

Re: Dupuytren's on palm between thumb and index finger

Hi Marvcus,

welcome to our forum! It assembles a lot of experience, just keep asking questions. I myself have been struggling with this disease for 30 years and I am still doing well. So yes, the bad news is that there is no cure for Dupuytren's available (yet?) but the good news is that there are means to maintain your hand and fingers in a good condition. The above menu section on Treatment gives an overview.

As you are still young, radiotherapy might not be the ideal option but it is able to slow down disease progression. Maybe it is at least good to know that this option exists. If you can avoid or postpone hand surgery I would personally advocate that and try something minimal invasive first. Surgery may work well (and callie on our forum is a strong advocate of it) but it may, in certain cases, also trigger growth of new nodules (and of course have other side effects). Minimal invasive techniques, like needle fasciotomy or collagenase injection, are better in that respect. They are suffering from faster recurrence but can be repeated and offer quick recovery. So therapies all have their trade-offs and benefits. The best thing is to become an educated patient and otherwise not worry too much about Dupuytren's but keep enjoying life.

From the day time that you are posting I guess you are located in the UK. Are you aware of the British Dupuytren's Society http://dupuytrens-society.org.uk/? Its a charity with patients and doctors cooperating. Maybe you want to join them.

Wolfgang

02/08/2012 14:37
callie 
02/08/2012 14:37
callie 
Re: Dupuytren's on palm between thumb and index finger

The problem I have with this situation is whether this surgery was sufficient to control the Dupuytren's. If the surgeon was just concentrating on the nodule and not surrounding tissue, there could be a remaining problem. In my surgery, I feel it was very successful because there was surrounding tissue removed.

What kind of a surgeon did you have? Was he only a hand surgeon?

Wach, how accurate is the diagnosis of Dupuytren's tissue?

02/08/2012 15:25
wach 

Administrator

02/08/2012 15:25
wach 

Administrator

Re: Dupuytren's on palm between thumb and index finger

I wish I knew!

callie:
...
Wach, how accurate is the diagnosis of Dupuytren's tissue?

02/08/2012 21:35
Marvcus 
02/08/2012 21:35
Marvcus 
Re: Dupuytren's on palm between thumb and index finger

Thank you for the replies.

Wach, I am in the United States, making a bit of a late night post. haha

And Callie's concerns are ones that I too am having. I wonder since at the time of my surgery it wasn't expected to be Dupuytren's that maybe all of the affected tissue was not removed. When I asked him about recurrence the other day he said it depends on if he left any residual tissue or not for the immediate future.

It was a hand specialist surgeon, Callie. I would also be interested to know how accurate Dupuytren's is diagnosed through pathology if there is any doubt there. The physician who recommended me to the hand specialist predicted it as a bone spur, the hand specialists posited ganglion initially (though the surgeon was not present for my pre-surgery appointments, only one of his understudies) and then the surgeon believed it was an inclusion cyst when visiting with me just prior to surgery. He seemed legitimately bewildered post-surgery, though he heavily doubted Dupuytren's at the time because of my age.

I still have a small little knot of tissue, it feels, just to the left of my scar which I have assumed is just some scar tissue forming which I have been attempting to massage since the removal of my sutures. The lump removed was roughly 15mm's, if my recollection is accurate, and it was bigger than they had anticipated.

Assuming it is Dupuytren's, I've read that early onset is often an indication of a more aggressive form of the disease. Is there anyone here with experience with early onset of Dupuytren's? Also, how unique or rare is Dupuytren's in the area of the hand I am seeing it? It really was debilitating when it became painful in this location because I was unable to grab things. I had to stop working out and playing sports all together and writing would become an uncomfortable process as well.

02/09/2012 00:13
callie 
02/09/2012 00:13
callie 
Re: Dupuytren's on palm between thumb and index finger

Normally, Dupuytren's is not painful. That would be one of my suspicions. Most of the time it is just a little different feeling rather than painful. For me (little finger at 90 degrees contracture) there was no pain. Normally, a person wouldn't have surgery until the contracture was 25-50 degrees.

02/09/2012 01:03
LubaM. 
02/09/2012 01:03
LubaM. 
Re: Dupuytren's on palm between thumb and index finger

Hi Marvcus,

You have come to the right place...welcome... this is a wonderful Forum with many caring people who will answer all your questions and share their personal experience.

Wolfgang has given you the right advice. Read all you can here under "Treatments" on the top of the page, and use the "Search" option to research what others have written before... This is a "weird" disease and is very different from one person to another....even different from left hand to right hand in the same person.

02/09/2012 01:56
hammer 
02/09/2012 01:56
hammer 
Re: Dupuytren's on palm between thumb and index finger

They were recruting for Xiaflex on the the thumb at Indiana Hand and Shoulder Institute.Might be worth checkin into.Good luck Dave

02/09/2012 02:10
Tusk 
02/09/2012 02:10
Tusk 
Re: Dupuytren's on palm between thumb and index finger

Marvcus, like you mentioned you could have several indicators of Dupuytren's diathesis (more aggressive biology) but who knows what that really means for anyone. Perhaps the surgery took care of it and you have no further issues. Perhaps any future issues are years down the road.

Some of the diathesis indicators are:
immediate family with disease
early age onset
bilateral (both hands)
more fingers involved
disease on radial side of hand (index, thumb)
other presentations of similar disease (feet, knuckles, shoulder, etc.)
degree of nodularity
rapid progression of disease

I didn't have early onset, age 58 for me, but I have aggressive disease and many of the other indicators. I'm a little surprised your surgeon didn't suspect DD but with your young age and the only nodule being by the thumb rather than the more typical spots. Plus you mentioned pain but not contracture. It probably threw them off.

02/09/2012 14:29
txmike 
02/09/2012 14:29
txmike 
Re: Dupuytren's on palm between thumb and index finger

Hi Marvcus!
I have a cord at the base of each thumb. On the left hand there is also a nodule, it goes toward my wrist, on the right it goes toward my middle finger. The nodule on the left was quite painful, since my RT it's not so bad. The cord on the right hand is painful if I grip something tight and it is contracting my thumb toward my ring finger slightly. I did not have RT on the right hand.

Best of luck to you!
Michael

 1 2 3
 1 2 3
dupuytrens-society   aforementioned   recurrence   treatment   Dupuytren   dupuytrens   contracture   because   debilitation   post-operative   dupuytren-online   Aponeurotomy   Practitioners   disease   concentrating   between   experience   uncomfortable   surgeon   surgery