DD in young people (2 | Dupuytren | Forum for Dupuytren and Ledderhose Disease

| Lost password
353 users onlineYou are not loggend in.  Login
DD in young people
 1 2 3 4
 1 2 3 4
04.08.10 00:13
Mike

not registered

04.08.10 00:13
Mike

not registered

Re: DD in young people

Im 25 and was diagnosed when I was 22

I had surgery when I was 23 on my little finger DIP joint on my right hand and have just been diagnosed with a 2nd case on my lenf hands index finger.

No idea if age is related to the early re-occurrence

04.08.10 12:56
newman 
04.08.10 12:56
newman 

Re: DD in young people

Hi Mike Australia Calling. I have to tell you the bad news that the younger you are diagnosed the longer term prospect is generally not good. It is suggested that to have this disease at a young age is an indicator that the disease could be aggressive. Signs of knuckle pads are also a indicator. Keep an eye on any change to your feet particularly in the arch any signs of nodules consider low dose radiotherapy. The problem with surgery it can be the trigger for the next surgery with the time span getting shorter and shorter and the results dimish . This is one reason to consider NA and radiotherapy. I've had 15 hand surgeries and the in 07 radiotherapy on both hands and both feet. Regards.

04.08.10 15:53
PhilipHa1 
04.08.10 15:53
PhilipHa1 
Re: DD in young people

Newman,

Since having RT in 2007 has your DD progressed? And, if not, would you have expected it to have done based on the average time you have had between surgeries?

Thanks,

04.10.10 11:55
newman 
04.10.10 11:55
newman 

Re: DD in young people

Hi PhilipHa1.Austalia Calling.
I was diagnosed with Morbus Ledderhose in 2000 and was advised against Surgery . In 07 after a repeat surgery on my right hand I developed numerous nodules adjacent to the surgery. That is when I found the Dupuytren Society. Every person is different so it is difficult to predict what will happen to another sufferer. In my case I was diagnosed at 35 yr with Dupuytrens and had no surgery until 50 yrs of age. As I was going to Germany I decided to meet Prof. Seegenschmiedt as I was advised back then the Germany was the world leader in the treatment of Non Malignant Disorders using low dose radiotherapy and they were ahead of OZ by 15 years in this type of treatment. When I met Prof.Seegenschmiedt he raised suggestion of treating the Ledderhose in both feet. ( I thought it was only in my left arch.) At that point in time I was having to wear orthodics in both shoes. The treatment has been so successful that I no longer wear orthodics, the nodules in the left arch have dimished that I have difficulty to find them. The cords under normal circumstances cannot be felt. I had a large lump which developed in the ball of my right foot which did cause me problems in walking. That has soffened and I am rairly aware of it. I do wear the Birchenstock or Rohde type of slip in sandles which have a good innersole and a hold of the toes . I did notice whislt in Germany many of the nursing staff wore these sandles. I found Ecco lace up shoes with very good innersoles also are great. To put you at ease whilst in Germany that were treating a 12 yr old for Ledderhose with low dose radiotherapy. Hope this might answer some of your questions. Regards from Down Under.

04.10.10 17:40
kellyjo731 
04.10.10 17:40
kellyjo731 
Re: DD in young people

I am a 25 year old female who was just diagnosed last week.... the whole thing is feeling a little overwhelming. in the last month i have gone from nothing wrong to a finger that is already contracting.... what should i be looking for in my feet... in case it is starting there too... i have an appointment with an OT and a surgeon next week and am going to acupuncture today in hopes of getting some pain relief. any other advice? i feel like i am having a lot of pain and in the morning my finger is much much more contracted. any advice`or ideas i get are welcome... feeling a little scared a stressed but trying to remain optimistic....

04.10.10 17:40
kellyjo731 
04.10.10 17:40
kellyjo731 
Re: DD in young people

I am a 25 year old female who was just diagnosed last week.... the whole thing is feeling a little overwhelming. in the last month i have gone from nothing wrong to a finger that is already contracting.... what should i be looking for in my feet... in case it is starting there too... i have an appointment with an OT and a surgeon next week and am going to acupuncture today in hopes of getting some pain relief. any other advice? i feel like i am having a lot of pain and in the morning my finger is much much more contracted. any advice`or ideas i get are welcome... feeling a little scared a stressed but trying to remain optimistic....

04.10.10 18:30
LubaM. 
04.10.10 18:30
LubaM. 
Re: DD in young people

to kellyjo731...

The decision is yours in the end...but do NOT go through surgery before exploring the possibility of NA (Needle aponeurotomy)...lots of information on this forum, listed on the left side of the page.... and on the website of Dr.Eaton www.handcenter.org.

For your feet look for nodules developing in the arch of the foot (Ledderhose disease)...in which case you can inform youself about radiation therapy which also works for Dupuytrens in the early stages.

Surgery should be your last choice...

04.11.10 03:29
flojo 
04.11.10 03:29
flojo 
Re: DD in young people

Kellyjo731, I totally agree with Luba. Explore all other treatment options before surgery. Take pictures of your hands, email them to one of the NA doctors listed in the left column of this page under Needle aponevrotomy (NA). I know some will respond for sure and probably any of the NA docs will communicate with you via email after seeing pictures of your hand. Email questions to them. Do you live near any of those listed in Needle aponevrotomy list?

04.11.10 15:34
lori 
04.11.10 15:34
lori 
Re: DD in young people

Kellyjo731,

I got some relief from the pain with a cortisone shot and it also slowed down my DD so I felt like I could make a decision concerning treatment without being in a race against my hand. The shot is quite painful but I got about 6 weeks of relief.

Do not be surprised if the surgeon only recommends surgery and to wait for treatment until your hand is totally contracted. I tried OT and that did not help and in fact made it more painful. I had mild puckering and was starting to contract when I had RT, check that out as am option. I agree with Flora and Luba, use surgery as your last option.

Lori

Edited 04/11/10 15:35

04.11.10 20:30
Mike S

not registered

04.11.10 20:30
Mike S

not registered

Re: DD in young people

Kelly Jo,

Since you are in Northern CA, I highly recommend that you consult with and/or visit Dr. Keith Denkler in Larkspur, just north of SF. He is one of the world's leading experts in this disease and one pf the most experienced practitioners of Needle Aponeurotmy (NA). I had NA done by Dr. Denkler in November of 2006 and it was one of the best decisions that I have ever made.

 1 2 3 4
 1 2 3 4
==========================   information   Seegenschmiedt   radiotherapy   glucosamine   diagnosed   Denkler   contracture   something-or-another   overwhelming   surgery   dupuytren-online   Dupuytren   excruciatingly   pictures   different   anything   mis-interpreting   contracted   treatment