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Dorsal pads and finger nodules, nothing on palms
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03/13/2017 09:53
VSP 
03/13/2017 09:53
VSP 

Dorsal pads and finger nodules, nothing on palms

Hello,
I wanted to ask if anyone else out there has a similar development of Dupuytren's. I have absolutely no cords or anything in my palms. Just finger nodules. One on my pinky of the right hand which has contracted significantly (and seems to have stopped) and 2 nodules on my left hand (1 on index and 1 on my middle finger). At the same time, though, I have knuckle pads on 6 fingers, including all three with the nodules. The pinky with the advanced contracture (with a pad on the back) looks like it's getting cemented at the back for want of a better word. Are these Garrod's pads? My doctors described them as such but on this very website, it says they are DD related (I compared my pads with the pictures) and that Garrod's may not be the correct term. How do we determine what they are? Is it just semantics? My problem is that one of these pads is quite large and still growing - it sticks out like a tumour and has a round shape. It affects movement a little, especially as I have growths back AND front. Clearly, this is a holistic problem - 10 fingers, back AND front, that's 20 problems. I don't want to have injections/surgery for the rest of my life. I don't know what to do. I've read quite a lot of the recent literature and I think the less intervention, the fewer the problems. Yesterday I read the results of a clinical trial of the enzyme injection - 1 patient got colon cancer! I can live with the way things are at the moment, but obviously I have no idea how the condition will develop. I am 40 and female.
A related question - I had a lump on my foot a few years ago. It was not Ledderhose, I don't think. It was squidgy, on the outside part of the sole, nowhere near the toes. That was removed surgically, leaving no scars. Now I wonder if its removal may have triggered DD in my hands. It didn't bother me that much, although it was quite big, but I could have lived with it.
Final question - sorry - I also had a thyroidectomy, because of a number of cysts in my thyroid, about 10 years ago. I'm on hormone replacement therapy. Are there tests I can do? Could there be any connection here? I'm looking for a more holistic solution, clearly things are related, even though Western science likes to treat things separately. I am also the only member of my family, more or less, who doesn't have Diabetes. But, clearly, it has a solid genetic presence in me.
Sorry for all the questions. I have absolutely no idea what to do. I keep reading and getting depressed.

03/13/2017 12:11
spanishbuddha 

Administrator

03/13/2017 12:11
spanishbuddha 

Administrator

Re: Dorsal pads and finger nodules, nothing on palms

Hi VSP

It's difficult to know without seeing a photo, but nodules in hand and lumps on the back of the finger joints, does sound like DD. You really need a doctor to confirm the diagnosis and rule out other possibilities. Garrods pads are essentially the same fibrotic material as nodules in the palm, and although they can get big and quite ugly they usually don't cause much trouble. Occasionally they might flare and feel sore, just the same as nodules palm side. It is not normal to treat them, although some have had surgery to remove them, they came back. Wait and see is an option for early slow developing DD, keep a photo log of your hands, add notes of symptoms and from that you will see how fast or slow things are progressing. The only established early treatment for DD is RT although some people have reported a particular type of massage helps in the early stages. Some doctors will use a steroid injection for troublesome nodules, but the results are mixed.

I'm not sure about the report of someone getting colon cancer after Xiaflex, do you also check the patient leaflets of otc or prescription medicines you take for the side effects, or look at the reports for those medicines from the clinical trials? My point is to keep some perspective and context. Same caution with RT of course, educate yourself and make an informed decision.

Perhaps a blood test is in order too given your other concerns?

03/13/2017 17:57
Luciferette 
03/13/2017 17:57
Luciferette 
Re: Dorsal pads and finger nodules, nothing on palms

Hello VSP,
You could be me! I won't bore the regulars with the details (if you look at my other posts, you can read them there), but I'm a 41 year old woman who has very similar progression to yours. It started maybe 6 years ago. Mainly fingers only (though the surgeon found 2 small palm nodules too when I went in for the op), and several dorsal nodules/Garrods pads. It was these that first prompted me to visit my GP. They were - and still are - tender when knocked and cause pain when flexing the knuckles.
I've just had my first surgery and, as you'll see from my other posts, it seems to have caused an aggressive flare up of growth/pain in the existing sites. A new nodule has also since appeared since the op on my ring finger, right hand. I'm seeing the therapist weekly; various torture contraptions to wear :) surgery is something I'd be wary of until you really need it. It's a hard call - if you leave it too long (as I did, unwittingly) the Dupuytren's tissue can wrap itself round important stuff like ligaments, thus making the deformity harder to fix.
You can message me on here if you like - you don't say whether you're in the U.K. or not, but I've found a dearth of NHS hospitals who will do radiotherapy for this disease. I think (don't quote me on it) the nearest to me is Nottingham. There are some private clinics, if you can afford it (I can't!) but, again, as SB says, there's pros and cons with all treatment and you must decide what's best for you.
A final word - my surgeon said, very wisely, the day I had my stitches out: "Dupuytren's is in you, it's part of you." I know it feels like a curse (read up on the Curse of the Macrimmons!) when your fingers are under siege, especially when you (we) are relatively young and it's progressing quickly, but unfortunately it IS us...we just have to try and cope with it as best we can as it ain't going away :)
Ps. That last bit wasn't a "cheer up and deal with it" sentiment! I was in tears at the weekend, struggling with the physio and discovered the new lump, but a glass of good red and a gripping film helped :)

03/17/2017 03:15
Emdoller 
03/17/2017 03:15
Emdoller 
Re: Dorsal pads and finger nodules, nothing on palms

My dupytrens started with knuckle pads. The good news for me is they eventually went away. The bad news is it was right after I developed nodules in my palm.

The knuckle pads hurt when I hit them on something hard and prevented me from bending my fingers inward to make a full fist as the pain was high.

I'm glad they are gone!!

Of course I'm dealing with my finger bending in due to the module in my palm.

Best of luck to you!!

Ed

03/23/2017 09:51
VSP 
03/23/2017 09:51
VSP 

Re: Dorsal pads and finger nodules, nothing on palms

Thank you all for your comments! Luciferette (love the name ;), I'm sorry to hear of your surgical story :( I'll message you about the RT. I think that seems the lesser evil. I'm in the UK, yes, London. I can't afford to go private either. I've been reading in the past couple of months - I have access to an academic library; I read all possible medical studies, including how DD develops down to cellular level, how it resembles wound healing in all its stages; the treatments, etc. It's a lot to take in. I put myself on a gluten-free vegan raw diet (I found studies of that helping rheumatoid arthritis as my mum has that), thinking if it doesn't help, at least it gives me the illusion of control. I've abandoned it now :) As to your surgeon telling you that DD is IN you and PART of you, that's very rich, coming from a surgeon in particular. I'd ignore him/her, if I were you - that's not wise, it's arse-covering! To be honest, I think stress levels play a role. I was under severe stress, work/money-related and the diagnosis added to that. The DD started developing at great speed suddenly. It could be a coincidence, but now I've reduced stress, it's calmed down a bit.
Ed, that's reassuring, that the knuckle pads went away on their own, although yeah, palm cords no picnic either. But, on the mysterious ways DD works in, I noticed something bizarre yesterday about the pads. At first I thought they were asymmetrical, a pad (ball-shaped in my case) forming on one side of the joint only, which makes them even more obvious, but then I realised they're perfectly symmetrical, only if you consider both hands! They've formed on the left-hand side of the joint on my left hand and on the right-hand side of the joint in the right hand?!? As if the DD is trying to balance itself out, it's like a mirror image. Very strange. Is it compensating somehow or is it gravitation or something? The surgeon I saw made notes on the fact that I'm right-handed and the first/most severe contracture is there. There must be something in this of interest to medical science, at least to those doctors who truly want to figure this out. The nodules are not symmetrical, but the pads are perfectly so.

03/23/2017 12:28
Emdoller 
03/23/2017 12:28
Emdoller 
Re: Dorsal pads and finger nodules, nothing on palms

I recall my hand dr at Stanford telling me that they might go away on there own. Not sure I believed him but in my case he was right.

As far as left vs right hand, I had them on both. I am ambidextrous so not sure what that means.

They were painful when I tried to make a fist and very painful when I hit them against something.

I hope they go away for everyone!

Ed

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