| Lost password
104 users onlineYou are not loggend in.  Login
(Non)diagnosis of early stage Dupuytren's?
 1 2
 1 2
07/21/10 03:01
Creosote 
07/21/10 03:01
Creosote 
(Non)diagnosis of early stage Dupuytren's?

Hello all,

A few weeks ago I decided that the nodules I thought I had been imagining in my right palm were definitely for real, and as one of them approached the size of a lentil I idly googled "lumps in palm", and of course right away discovered what I might be in for.

So I visited my primary care doctor, who gave me a diagnosis of likely Dupuytren's disease, but referred me to a specialist. Today I had my visit with the specialist, an experienced hand surgeon at the hand center associated with my university's medical school. Her P.A., who did the intake on me and palpated the palm, basically said "ah yes, Dupuytren's" and handed me a brochure to look at while I waited for the specialist.

The specialist palpated my palm and said hmm, she thought the P.A. might have jumped the gun a bit, that it wasn't unquestionable Dupuytren's but could be a cyst or something else benign (she explicitly ruled out malignancy when I asked). I had come to the appointment hoping for a clear diagnosis so I asked "You don't want to do any sort of imaging?" and she said no: recommendation was for me to sit back and see where things go. If it's Dupuytren's, from her point of view there's nothing to be done so long as there's no contracture.

I'm not totally opposed to doing that--the larger of my two nodules is rather sore these days but not really interfering with anything. But if it is Dupuytren's I'd like the option of considering an early-stage treatment such as radiation.

So my question: is it in fact difficult to provide an unequivocal diagnosis of early-stage Dupuytren's? What would the gold-standard test be? Should I look for a second opinion, or just take the specialist's advice to be patient?

07/21/10 06:03
flojo 
07/21/10 06:03
flojo 
Re: (Non)diagnosis of early stage Dupuytren's?

Sounds like you already have but you might do more research, research, research using the links in the left column. Ultimately we all have to make the decision about what to do because everybody, even every hand, is different. The more you know, the better. It will help you be in a position to know what makes sense as far as treatments for your hand.

I suggest that you take pictures at least once a month and date them to see if there is progression - more nodules, nodules getting larger, any cords developing, etc. Take a picture of your hand palm down as well and somehow measure the span of your hand and see if that changes. Most of this that I'm suggesting, I did not do and wish I had. Others did and they have/had a clear record of what was happening.

Do you have itchy/crawly feelings down in the tissue of your palm? Any aching at night or other times? Any sensation that is letting you know that something is going on in your hand? Those are some of the "awareness" sensations that might go on to let you know that your Dupuytren's is active. The pictures and measurements will let you document just how fast (or not) it is progressing.

Be sure to come back and ask questions. People on this forum will help.

07/21/10 07:20
LubaM. 
07/21/10 07:20
LubaM. 
Re: (Non)diagnosis of early stage Dupuytren's?

Cresote,

I agree with everything that Flojo said....she made excellent suggestions.

I don't agree with the surgeon saying that "there's nothing to do, so long as there's no contracture"... I would look for a second opinion to make sure that you are dealing with early-stage Dupuytrens. If you have DD I would seriously consider Radiation Therapy (RT) to stop the progression of the disease before any contracture occurs.

I know from my own experience, that I should not have listened to all four surgeons I consulted in the course of the last ten years, all of them said to wait and when I finally wanted to deal with a badly contracted PIP joint of the small finger in the right hand, it was too hard to correct even after doing Needle Aponeurotomy (NA) twice on same finger.

On my left hand and left foot, where I have Ledderhose, I opted for RT...So far, excellent results...the progression of the disease has stopped. I wish I had done the same on my other hand.

Edited 07/21/10 07:27

07/21/10 17:08
cindy850 
07/21/10 17:08
cindy850 
Re: (Non)diagnosis of early stage Dupuytren's?

You need second opinion. I don't think i would trust any hand surgeon because of the title. Hand surgeon. I read and read and read on the internet and diagnosed myself and then made a appointment with a orthopedic doctor and he took one look at my hands and said you have DD. Even these doctors tell you to wait but not as pushing. He just said when i start getting contractions he will refer me to hand surgeon. And my reply was i will never have surgery on hands. In the end had RT and very glad i did. You owe it to your self to go for second opinion. Take pics and put them on here and that way we can take a look. We are very good at looking at this type of disease.

07/21/10 21:14
lori 
07/21/10 21:14
lori 
Re: (Non)diagnosis of early stage Dupuytren's?

I first saw my GP who had no earthly idea what it was. She referred me to the hand surgeon who took one look and said DD. He also said to wait until "I couldn't take it any more" - meaning pain and contractin and then come see him for surgery. Not liking that answer I also found this website and began looking into RT. My nodules were sore and I had an crawling sensation in my palm. My arm then began to ache clear up to the shoulder. In less than a month I began developing a cord. Knowing my DD had to be "active" I chose RT and it stopped the progression in its take over of my hand. It has been abut a year and I would do it all over again.

I took photos of my hand on a timely basis and kept a log of the progression. Your mind quickly forgets what it looked like 2 weeks ago, if you feeling any new symptoms, is that nodule begger today than yesterday?. By keeping the log I was able to determine how fast mine was developing. Since my hand went from a sore spot to a cord in less than 6 months, I felt like waiting to see if it got worse was not an option. It was clearly getting worse. I also did not like the idea of it taking up residence in my hand. By that I mean getting used to being there and maybe spreading. That might be in my own mind and not a reality as for how the disease progresses, but I did not like watching my hand change and losing my hand grip and dexterity.

Keep us posted and if you have any questions, ask.

Lori

07/21/10 22:43
Creosote 
07/21/10 22:43
Creosote 
Re: (Non)diagnosis of early stage Dupuytren's?

flojo:
Do you have itchy/crawly feelings down in the tissue of your palm? Any aching at night or other times? Any sensation that is letting you know that something is going on in your hand? Those are some of the "awareness" sensations that might go on to let you know that your Dupuytren's is active. The pictures and measurements will let you document just how fast (or not) it is progressing.

No symptoms other than intermittent soreness where the nodule is. The suggestion to document progression/growth with photos is a good one, and I'll do that.

Is most diagnosis of Dupuytren's done just from looking at and feeling the nodules/bands? Or do doctors use x-ray, ultrasound, or other imaging to verify?

I'm thinking I'll go back to my primary care physician to see whether he thinks it's reasonable not to have a solid diagnosis at this point.

07/22/10 00:02
flojo 
07/22/10 00:02
flojo 
Re: (Non)diagnosis of early stage Dupuytren's?

Because my hand did not hurt, I had quite a few nodules before I asked about it. When I did, I simply held my palm up and my dermatologist, my GP and my husband's orthopedist immediately said, "Dupuytren's contracture." They also palpated it to feel the nodules. While it was easy to diagnose, they only knew to wait until it contracted a lot and then have surgery by a hand surgeon or plastic surgeon.
BTW, they all now know about NA and RT because I made sure that they know. They are very pleased to have other options for their patients who come it with Dupuytren's.
Maybe yours is something else, but I don't know what that might be.

07/22/10 02:49
LubaM. 
07/22/10 02:49
LubaM. 
Re: (Non)diagnosis of early stage Dupuytren's?

Creosote:
Is most diagnosis of Dupuytren's done just from looking at and feeling the nodules/bands? Or do doctors use x-ray, ultrasound, or other imaging to verify?

I'm thinking I'll go back to my primary care physician to see whether he thinks it's reasonable not to have a solid diagnosis at this point.

I've had DD and LD for about ten years...In the ten years, I've seen four hand surgeons, a podiatry doctor for my LD (and plantar fasciitis), and of course a GP doctor through the years...All of them confirmed the diagnosis of Dupuytrens and Ledderhose just from looking and examining hands and feet, no x-ray, ultrasound or imaging were ever used.

All four hand surgeons suggested to wait until contracture became more pronounced and were ready to do surgery. I knew all along that I didn't want to do surgery and didn't want to wait for the contracture of my right hand small right finger to become worst.

I opted for NA on my small finger (twice)... I could have avoided the NA had I opted for RT when I only had nodules, before the contracture occured.

I'm so glad I had RT on my other hand and foot, to treat just nodules ....the RT has stopped the progression of the disease, so far...its been almost nine months.

08/02/10 05:39
Biff 
08/02/10 05:39
Biff 
Re: (Non)diagnosis of early stage Dupuytren's?

Hi,
I wanted to insert the original message as a reference but don't know the method.

My left hand is showing early signs of DD and as a result of a search for more advanced cures, I came across this furum. What I can provide in respect to early stage symptons are only my own observations; perhaps they may be of use to you in some way.

I was an amateur pianist and about 6 years ago noticed that I sometimes missed notes when playing a span of nine or ten. This prompted me to make some more detailed observations of my right hand. Here is the sequence of events observed:-

Right Hand
1. For some time I had been getting extremely annoying itching to the palm of the hand.
2. I noticed a small 'v' shaped indentation in the centre of the palm (where the itch was) directly in line with the fourth finger.
3. I started to get tingling in the ring and little finger - as you do when you hit your elbow funny bone - but it lasted for weeks.
4. The tingling then became painful and the affected fingers felt numb and cold.
5. GP inspected the hand and advised that I must have a spur on my elbow that was irritating the nerves to the fingers.
6. The finger pain subsided somewhat.
7. The 'v' indentation deepened noticeably to over 2mm.
8. Large nodule developed in the palm affecting the ring and finger small - diagnosed with DD.
9. By then I could only reach an octave on the piano (8 notes).
10. The area on the back of my fingers started becoming painful and nodules formed in the area above the last joint.
11. The palm of the hand had become painful, arm muscles ached and the skin at the wrist pulled towards the fourth finger.
12. The ring finger is now noticeably constricted and to a much lesser extent the index and little fingers.
13. I no longer feel any pain.
14. Development period - appeoximately 6 years

Left hand
1. Itching palm of the hand.
2. Small 'v' indentation in the palm.
3. Module formed on back of little finger above last joint. (Before the palm nodules this time)
4. Painful tingling to ring and little finger.
5. Nodules developing rapidly on ring and little finger.
6. Development period - less than 6 months; a much more agressive onset than the right hand.

Other information
1. Current age - 63 yo.
2. Maternal grandfarther suffered severely in both hands.
3 Prussian (Germanic) descent.
4. Can no longer play piano - too limited mobility in both hands.
5. No intentions of having surgery.

My thanks to contributors to this forum; the amount of information available has assisted me greatly in my research. I intend to quickly investigate RT for the left hand if it's not too late.

Kind Regards
Biff

08/02/10 07:20
flojo 
08/02/10 07:20
flojo 
Re: (Non)diagnosis of early stage Dupuytren's?

Sounds like a plan!

Your complete list of symptoms and the development of them will help others. Yours seems as typical as any with this weird disease that is different for every hand. Initially one doesn't know what to do other than watch this stuff just happening.
Yours is a good description of what to watch out for.

 1 2
 1 2
anti-inflammatory   surgeon   disease   fingers   Seegenschmiedt   unquestionable   surgery   Development   observations   painful   developing   information   nodules   diagnosis   progression   Dupuytren   recommendation   indentation   appeoximately   contracture