Update on us & any help would be great. | Ledderhose | Forum for Dupuytren's contracture

| Lost password
388 users onlineYou are not loggend in.  Login
Update on us & any help would be great.
 1 2
 1 2
08.05.13 21:56
ellensmum 
08.05.13 21:56
ellensmum 
Update on us & any help would be great.

For those that don't know me I am a mum to an 8 year old with a pf in her foot. It came around following trauma to the sole of her foot when she was 18 months old. Surgery was done when she was around 2.5 because the lump was growing & it was at this time we discovered what it was. Dups & ledderhose is in both sides of our family but not until much later in life.
The years have gone by & although it is there and we have had our ups & downs with it causing pain in her feet especially when they are growing. We have found with her wearing mainly crocs or fitflops things are good and not to many issues in the last year or so.
However she has now got some odd swellings coming up on her fingers over the knuckles. The dr's have said they are just nodules but 4 weeks later they are still there and they are hurting her to the point that she no longer wants to play netball as catching the ball 'catches' her fingers. Looking around I think they are similar to a knuckle pad type thing. So what I am asking is whether anyone who has knuckle pad finds it painful, and if anyone has any suggestions for what could be done to help her. We are due to go back to the dr's next week - I am hoping to see our regular gp who has slightly more of an understanding of Ellen & her problems - the last I saw was a locum who told me outright that she couldn't have a pf in her foot - then promptly read her noted & said oh she has...........

09.05.13 01:31
Vikingorigins 
09.05.13 01:31
Vikingorigins 

Re: Update on us & any help would be great.

I have knuckle pads. It was first diagnosed as arthritis but it is garrod's.
I find that it start with some redness on the knuckles. Then it becomes very painful wheni hit something with the knuckles. And after, when it seems to be growing, the pain decreased significantly. 2 knuckle pads were treated with low dose RT ( 3 x 1 g) for one series which he call anti-inflamatory dose. The skin appeared to soften significantly, but after it hardened again. I think it helped the pain as it isanti-inflamatory.

On my last visit for RT for LD, the doctor treated the other hand 's knuckle pad with a similar anti-inflamatory dose. He mentioned that RT for Garrod's was not as good as for LD or DD. I think the idea is to try to treat then early, when they are in their inflamatory phase. We'll see the results.

09.05.13 09:48
spanishbuddha 

Administrator

09.05.13 09:48
spanishbuddha 

Administrator

Re: Update on us & any help would be great.

It might be an idea to stop the netball for a while, and any other activity that places extra strain on the hands. I'm not sure that an interventional treatment is indicated at this stage, maybe a mix of icing and warm soaks to help sooth the hands. Some finger sleeves might feel supporting, but I don't know if they would fit a child. Search 'finger sleeves' on amazon. I use them when my finger joints play up.

12.05.13 04:19
cschieber 
12.05.13 04:19
cschieber 
Re: Update on us & any help would be great.

I'm sorry your daughter is having these problems at such a young age. I have large, painful dorsal nodules on 5 of my fingers at the PIP joint. I got the first one 5 years ago and the most recent last month. They are all painful. I've had three of them radiated. Maybe it stopped the growth, I can't say, but they didn't soften or become less painful. NSAIDS don't help. They don't hurt all of the time. Just when I bend my fingers or knock them against something. General consensus is don't have them removed because they come back and worse.

Having said all that, I developed a few knuckle pads when I played recreational volleyball in my late 20's. It was definitely related to trauma. They were red and sore for quite a while, a few years at least, but they went away on their own. Interestingly, these aren't the fingers I have problems with now, at age 56. I agree with Spanish Buddha that net sports might not be a good idea right now. Many folks here have said their knuckle pads self resolved so hopefully hers will too.

12.05.13 19:05
ellensmum 
12.05.13 19:05
ellensmum 
Re: Update on us & any help would be great.

Thank you everyone -
her fingers are definitely painful & I think probably you are right she is going to have to avoid netball for the moment.

It is such a nusciance as we were sure things were settling down as her foot had been so good recently.

will let you know how things go - but her dad & I will be very very nervous of her having any surgery knowing the possible results

Zoe

13.05.13 16:15
Seph 
13.05.13 16:15
Seph 

Re: Update on us & any help would be great.

Zoe; I don't know what pf is when you refer to your daughters foot but I developed LD very early in life. I now know that DD is common in many parts of my family but when I was a child the genetic link had not been made and LD was not known in my family at all.

On this web site I relate that I developed LD in my early teens but it may have been a lot earlier than that. In junior school I remember the pain when I tried to run. My right foot was operated on when I was in my early teens but within a short time the growth came back and was replicated on my left foot. Late teens I developed what I now know to be DD in my left hand and after surgery on my left hand it appeared in my right hand. So now LD both feet and DD both. I have had surgery one foot and one hand plus NA 3 times one hand and two the other.

The only purpose of my note is to emphasis that I developed the disease early and while there was pain when I was a child it did lessen over time and eventually disappeared. In my case it was fixed by simply pushing through. Warm up before intense activity, blisters on the LD eventually lead to toughened skin etc. I turn 59 next week and I am active in the gym 3-5 times per week, I play tennis 3 times a week and I now cycle 1-2 hours per week. The last bit is imposed by my wife so that I can deal with a bike trip in France later this year.

So my message is that this is a non life threatening problem that is a pain in the a...... but should not get in the way of your daughters opportunities. Leave the surgery until the last possible moment. My experience is that the pain goes away over time as the body adapts.

14.05.13 03:37
Tusk 
14.05.13 03:37
Tusk 
Re: Update on us & any help would be great.

pf = plantar fibromatosis also known as Ledderhose disease

19.05.13 21:32
ellensmum 
19.05.13 21:32
ellensmum 
Re: Update on us & any help would be great.

Seph:
Zoe; I don't know what pf is when you refer to your daughters foot but I developed LD very early in life. I now know that DD is common in many parts of my family but when I was a child the genetic link had not been made and LD was not known in my family at all.

On this web site I relate that I developed LD in my early teens but it may have been a lot earlier than that. In junior school I remember the pain when I tried to run. My right foot was operated on when I was in my early teens but within a short time the growth came back and was replicated on my left foot. Late teens I developed what I now know to be DD in my left hand and after surgery on my left hand it appeared in my right hand. So now LD both feet and DD both. I have had surgery one foot and one hand plus NA 3 times one hand and two the other.

The only purpose of my note is to emphasis that I developed the disease early and while there was pain when I was a child it did lessen over time and eventually disappeared. In my case it was fixed by simply pushing through. Warm up before intense activity, blisters on the LD eventually lead to toughened skin etc. I turn 59 next week and I am active in the gym 3-5 times per week, I play tennis 3 times a week and I now cycle 1-2 hours per week. The last bit is imposed by my wife so that I can deal with a bike trip in France later this year.

So my message is that this is a non life threatening problem that is a pain in the a...... but should not get in the way of your daughters opportunities. Leave the surgery until the last possible moment. My experience is that the pain goes away over time as the body adapts.


Thanks so much for all your replies - since the first post on here she has what suspect another knuckle pad appearing on her left hand (she is left handed). We are off to see her dr tomorrow and I suspect they will refer her back to her consultant which will be another couple of months before we get to see them. In the meantime she has agreed to wear some finger splints for netball which I hope will help a bit - she really doesn't want to give up as she has been asked to play in the team for the first time - karate from now on will be sparing with gloves on so hopefully protecting her hands but still allowing her to do what she enjoys. Will let you all know how we get on
Zoe

16.06.13 08:06
Jaci

not registered

16.06.13 08:06
Jaci

not registered

Re: Update on us & any help would be great.

Zoe, I had PF diagnosed in my feet when I was very young too - not quite as young as 8 but still very young for the disease. I was told not to do sport, and was advised to only do cycling or swimming as they are not weight bearing and don't involve flexing of the foot.

I am now 34, and have played netball up to 5/6 times a week since then, choosing to ignore this doctor's advice. I also run marathons and have to say that my feet have been no issue. The lumps have grown in size somewhat but never really give me any trouble. I had a course of steroid injections back when I was diagnosed. Don't know if that helped. From what I can understand, though, LD is less aggressive than DD. I have modified the way I play netball.

Have also developed DD in the right hand, but again, continue to play. I've just changed my shooting style (I play GA) to compensate for the DD, preferring to catch with the fingers of the right hand and then steadying the ball with the left. I play A grade netball so I don't think DD has limited my abilities. I'm still just as competitive as anyone else of the court, despite my hand limitation.

I just want to put out a different perspective for you - if I had of listened to the advice given early on, I would have stopped sport. There is no reason to. The hand/feet might deteriorate anyway, so you may as well do what you love. Your daughter will adapt her play naturally to compensate for the pain.

There are far more benefits to sport than no sport - Dupuytren's or no Dupuytren's (same goes for LD).
Again, just wanted you to see a different perspective.
Jaci

Edited 06/16/13 08:10

13.07.13 01:07
ellensmum 
13.07.13 01:07
ellensmum 
Re: Update on us & any help would be great.

Jaci:
Zoe, I had PF diagnosed in my feet when I was very young too - not quite as young as 8 but still very young for the disease. I was told not to do sport, and was advised to only do cycling or swimming as they are not weight bearing and don't involve flexing of the foot.

I am now 34, and have played netball up to 5/6 times a week since then, choosing to ignore this doctor's advice. I also run marathons and have to say that my feet have been no issue. The lumps have grown in size somewhat but never really give me any trouble. I had a course of steroid injections back when I was diagnosed. Don't know if that helped. From what I can understand, though, LD is less aggressive than DD. I have modified the way I play netball.

Have also developed DD in the right hand, but again, continue to play. I've just changed my shooting style (I play GA) to compensate for the DD, preferring to catch with the fingers of the right hand and then steadying the ball with the left. I play A grade netball so I don't think DD has limited my abilities. I'm still just as competitive as anyone else of the court, despite my hand limitation.

I just want to put out a different perspective for you - if I had of listened to the advice given early on, I would have stopped sport. There is no reason to. The hand/feet might deteriorate anyway, so you may as well do what you love. Your daughter will adapt her play naturally to compensate for the pain.

There are far more benefits to sport than no sport - Dupuytren's or no Dupuytren's (same goes for LD).
Again, just wanted you to see a different perspective.
Jaci


hi Jaci, sorry I haven't got back to you sooner we have been away. I just wanted o say thank you for sending me such a positive post - we have decided that Ellen needs to be ayoung girl & do anything that she feels she wants to.
Since posting she now has a lump on the palm of her hand but no finger distortion & we see her consultant on the 16th August so will post & let every one know how we are doing then

 1 2
 1 2
recreational   disappeared   netball   opportunities   interventional   eventually   Dupuytren   understanding   Surgery   developed   significantly   diagnosed   isanti-inflamatory   fingers   compensate   perspective   Interestingly   knuckle   fibromatosis   anti-inflamatory