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Teenager With Dupuytren's...Help?
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07.09.08 07:57
allhailthesporks 
07.09.08 07:57
allhailthesporks 

Teenager With Dupuytren's...Help?

I'm a seventeen-year-old female, and I was diagnosed with Dupuytren's disease on Friday by my hand surgeon. I've had a steadily growing, hard lump near the base of my left thumb for approximately two years. When my pediatrician first examined it in 2006, she said it was probably a cist which could go away on its own, but that I should see an orthopedist. My mother didn't make the appointment, as it wasn't causing me much pain (unless it was hit or force was applied to it) and the doctor had all but brushed it off. A few months back, the lump was beginning to cause me more discomfort because I could not fully extend my thumb, and if I tried, there was pain. My thumb would also twitch at times, though I'm not sure if the two occurences were related. Finally, my mother called an orthopedist to make an appointment, but they referred us to a hand surgeon instead. The surgeon identified the lump as a soft tissue mass upon examination, but assured us that it was probably not malignant. We scheduled an MRI and the surgery to have the mass removed. The MRI, curiously, showed the 'mass' to be some kind of cist, which we were told the day of my surgery. Afterwards, however, the surgeon stated adamantly that it was a tumor, and he didn't know what had happened with the MRI. My hand was in a splinted cast for two and a half weeks, with my thumb in a partially contracted position at the base joint. When I went to have the cast removed on Friday, the surgeon gave us the new diagnosis. He hadn't considered it until the pathology results had come back. He was very vague about it, and my mother and I both left somewhat confused. What I understood at the time was that it was rare for a teenager to get Dupuytren's disease and that there was about a twenty percent recurrence rate, overall. My mother found out on the way home that my family has a small history of the disease, though it hasn't been proven to be hereditary. At home, I began doing research, and what I found was a bit disturbing. Apparently, taking all my factors into account such as my age, rate of progression, location of diseased tissue, family history, etcetera, what I have is considered Dupuytren's Diathesis- a more aggressive form of the disease with a higher rate of recurrence and extension. I also found one study that showed a twenty-four percent increase in risk for cancer, and increased mortality rate in general. I haven't been able to find much information about DC in the thumb, specifically, and also I'm seeing differences in information from site to site. I'd like to know how severe my condition actually is. Will I have this disease for the rest of my life or was it just a one-time thing? Since my surgeon did not know what he was dealing with at the time of my surgery and short-term recovery, how will my continued recovery and prognosis be affected? How controllable is this disease long-term? Any answers would be greatly appreciated. Thank you.

Edited 09/07/08 08:42

09.09.08 23:49
Megan Lyden

not registered

09.09.08 23:49
Megan Lyden

not registered

Re: Teenager With Dupuytren's...Help?

I'm sorry you are dealing with this, especially at such a young age! It sounds like you have been reading a lot about it. I don't know where you live, but it might be worth your while for a consultation with a doctor who is really knowledgeable about this and could examine your hand, etc. I did not feel that the doctors I saw in Seattle were willing to discuss with me some of the treatments I was reading about on this website, so I went to Boise for a consultation with Dr. Kline.

I'm not a medical person so I can't answer any of your questions...but people on this forum have noted that it differs from person to person.

I believe I know the study you are referring to; I was a little freaked out when I found it on the internet, but I want to assure you that I know 5 people who have this, and they are all in the 60s and doing very well and have had no other significant health problems!

Megan L

10.09.08 10:22
newman 
10.09.08 10:22
newman 

Re: Teenager With Dupuytren's...Help?

Hi Jess. Australia Calling, welcome to the forum, where are you calling from?. You should not think the worst, the good news, I read was ,that you did not have a malignant tumour. Be thankfull for that. Duputrens and Ledderhose( feet) are Non Malignant disorders. I am in my late 60's and have full use of my hands and feet having had some 15 odd surgeries including 4 skin grafts. I was concerned ,that your surgeon did not identify Dupuytren's . Did you have a bi-opsy or surgery. I have never had a plaster cast . If I could give you a tip for the future ,I always get a copy of blood tests or any medical reports. You stated that both you and your mother were confused, when you left the surgeon. Not the way to go. Try and find a hand surgeon ,who is also a plastic surgeon. You mention' Dupuytren Diathesis ' and your predisposition as you posted it not that. No knuckle pads No dupuytrens in both hands nor in the feet. You could be in the 10 % where the disease never progresses. I have had and involuted nodule at the base of my middle finger ,that has not done anything for 15 years .At your stage of life, you should not allow this to effect your life. If you have dupuytrens. I believe it is very important to stretch the hand everyday and exercise.
Finally ,have a look ot the article written by LUCK .Click on the literature under Dupuytren's disease.This gives an excellent understanding of dupuytrens.I have found in life, that the more informed you are the better.
Regards from down under.

11.09.08 21:04
allhailthesporks 
11.09.08 21:04
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

Thank you so much, newman. I'm from New Jersey, actually.

I had surgery to remove what they thought was a tumor, but the biopsy showed that the mass was made up of thickened fascia, which, obviously, suggests Dupuytren's. I'm getting very frustrated with my hand surgeon, Dr. Decker, because he isn't directly answering my questions, and he keeps brushing me off. I am only seventeen, after all. I know that my condition doesn't necessarily have to be serious (and I don't want it to be), but I also don't want to write it all off, either, as it seems he's doing. It's just a 'wait and see' kind of thing, I guess.

12.09.08 19:47
nmrsme 
12.09.08 19:47
nmrsme 
Re: Teenager With Dupuytren's...Help?

A noted hand surgeon in NYC that may be of help is Dr. Edward Athanasian at the Hospital for Special Surgery. In NJ I went to the NJ Hand Surgey at 385 Morris Avenue, Springfield,NJ . I found that the coomunication baout the disease from hand surgeons is very vague which I think is because they cannot predict the development of the disease and will tell you that to come back when you need surgery.

Neil

12.09.08 21:46
Jon 
12.09.08 21:46
Jon 
Re: Teenager With Dupuytren's...Help?

You might have your mother try and make an appointment with Dr. Gary Pess in Eatontown, NJ. He works with DC patients.

13.09.08 05:55
newman 
13.09.08 05:55
newman 

Re: Teenager With Dupuytren's...Help?

Hi Australia Calling,
You were probaly unlucky with your Dr. some of them are poor communicators. I must admit I went to four surgeons before I made my choice. I note Dr Pess was mentioned he and others are listed on our web page under NA-USA/Canada. Central Jersey Hand Centre. Is it a coincidence they have a Dr.G.Decker Jr.
Dont forget to exercise your fingers and apply some enriched Vit.E creme on the scar tissue to reduce restrictive movement in the future as the scar heals . I believe only about 20% of patients have DC in the thumb. We are told it starts in the little finger=not always. I have had surgery on both thumbs and skin grafts to the joint adjacent to the palm to facilitate movement. This was done after repeat surgery on the thumb.

Edited 09/13/08 05:58

13.09.08 06:31
allhailthesporks 
13.09.08 06:31
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

I was supposed to begin applying lotion today... That didn't happen, unfortunately. Tomorrow. I'm thinking now that one thing that could be potentially bad for my recovery is the fact that I only began physical therapy on Thursday, three weeks after my surgery. I've heard that Dr. Decker is a highly qualified surgeon, but that he's not so good with bedside manner. I love my physical therapist, Dr. Schwall. He's very helpful and knowledgable. He doesn't know if he'll be able to completely fix my contracture; I didn't mention before, but it's gotten much worse since the surgery, and he says that he can still feel a lot of tissue underneath the swelling in my hand. He mentioned something I already knew- that Dupuytren's could be aggravated and progress faster with surgery/therapy, so he's moving slowly with stretching. I'm still experiencing numbness also, though I'm told that's normal. My movement right now is very restricted. I assume that it was made worse because I couldn't move it while it was splinted in the cast...

13.09.08 06:43
allhailthesporks 
13.09.08 06:43
allhailthesporks 

Re: Teenager With Dupuytren's...Help?

!!!!!!!!!!

I just checked the Central Jersey Hand Surgery website, and, yes, that Dr. Decker is my surgeon. Like I said, I've heard he's very good, but not great at communicating with patients.

I still wonder how much of a difference it's going to make that he didn't actually perform a fasciotomy, and that my postoperative measures were carried out according to the removal of a tumor that didn't exist.

Oh, how I wish he would answer my questions.

13.09.08 12:43
newman 
13.09.08 12:43
newman 

Re: Teenager With Dupuytren's...Help?

Hi Jess Australia Calling,
There are things you can do yourself, first thing in the morning try stretching your hand in the hand basin filled with as warm water ,as is comfortable. With your palm facing down exert a down pressure ,using the shape of the basin to exert a reverse force back on your fingers. Then slowly make a clinched fist. Relax the hand and with the other hand try forcing the thumb towards the palm. Try touching the thumb nail to the nail of the little finger. The thumb is more difficult to exercise.Make circles and move all the fingers as though playing the piano. If you still have swelling try and keep your hand above the heart line and when relaxing rest your hand on the shoulder. At this stage it would be difficult to say that the surgeon has not removed the nodules. It can take up to 6 months to get back to so called normal. You will have to work on it and in my case I exercise and stretch my hands a couple of times a day. In my case, I found that the movement I had at 6 weeks was the best I was going to get. When I was in Germany Prof Seegenschmiedt examined my hands and commented ,that we should examine the palm regularly, by running the thumb across the hand in the direction of index to little finger ,then move down towards the palm to identify any change. This is done gently like running over the surface of soft friut. I will be off line now for 4 weeks as I am returning to Germany to see the Prof. Regards.

Edited 09/13/08 12:51

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