DD in young people (3 | Dupuytren | Forum for Dupuytren's contracture

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DD in young people
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11.04.10 23:20
LubaM. 
11.04.10 23:20
LubaM. 
Re: DD in young people

Kelly Jo,

Don't want you to feel pressured by all of us who are pushing you into NA. Like I mentioned previously the end decision is yours...but PLEASE don't wait until you contracture is more severe...If your fingers are contracting you should do NA as soon as possible, since it is harder to correct the longer the fingers have been contracted and also depending on what finger and joint is involved...

I agree with Mike S. ...Dr. Denkler in Lakspur, near SF is a great choice since you live in northern CA...he is very dilligent about answering inquiries, just take pictures of your hands and send him an email...he will respond...

I had NA with Dr. Denkler in 2006....mine unfortunately didn't hold for long, and I repeated the NA on same finger with Dr. Eaton in March of this year (because I was in Florida on a vacation)... The recurrence of my NA is totally because the disease is "weird" and no two cases are alike... I'm hoping the second NA will hold longer.

In any case...skip the acupuncture and look into NA as soon as you are comfortable with the idea...the sooner the better....thats just my two cents !!!

12.04.10 06:32
flojo 
12.04.10 06:32
flojo 
Re: DD in young people

I agree with Mike S and Luba. It sounds like yours is progressing rapidly and getting NA sooner rather than later is best. I had Dr. Denkler to do my NA when it was at Stage 1. I'm glad I didn't wait longer.
As suggested, email him pictures of your hand and a list of questions I am sure that he will respond right away. Don't hesitate to pose your questions to him and to this Forum. On this Forum you will get descriptions of lots of different situations with peoples' hands because every hand with Dupuytren's is different. It helps to read what others have experienced because sooner or later, someone will have something similar to yours. It helps you to know what the treatment options are and it will help you to make a decision for what you need to do.

12.04.10 07:46
kellyjo731 
12.04.10 07:46
kellyjo731 
Re: DD in young people

Thank you all for all of your responses and information. I will call Dr Denkler tomorrow and send him pictures as well. I am finding this forum to be so helpful, really one a the few helpful things I have been able to find. I have a family doctor that I have had for years and I had never felt so frustrated when he looked at me and told me I had to wait for it to get bad enough to have surgery, but there was no way to know how long that would take or if it would work.....and I also find it so hard to feel as if i am racing my hand but i dont know if it is progressing slowly or rapidly because I dont have anything to compare it to. my guess is that it is rapid. i dont know how to tell degrees or anything but i know in the last two weeks it went from mild off and on pain to no i cant put my hand flat on the table... but maybe nothing more will happen now...


I find when i wake up in the morning my hand is much much worse. and then it will loosen a bit, does that seem normal?

also, it seems on here people tend to say that when you get this when you are younger, i am 25, that is tends to be 'aggressive' does anyone know of anyone who was younger and it didnt progress much or seemed slow??



thanks again for all the information, it is helping me turn on some lights in what feels very dark and confusing right now.

-kelly jo



Edited 04/12/10 09:03

12.04.10 09:42
LubaM. 
12.04.10 09:42
LubaM. 
Re: DD in young people

Kelly Jo,

Keep us posted after you hear from Dr. Denkler.

I consulted with four surgeons before I did NA and radiation. They all told me to wait until the finger is completed contracted....By the time that happened I had a pinkie finger with a 45 degree contracture in the PIP joint which has been very hard to correct...Two NA's so far on that finger....

Unless you consult with a doctor that is familiar with and does NA and/or radiation, the general practitioner doctors have no clue about either treatment.


12.04.10 17:23
lori 
12.04.10 17:23
lori 
Re: DD in young people

Kelly Jo,

One of the ways I could tell how rapidly mine was progressing was by taking pictures of my hand on a weekly basis. I took a picture of the palm. then at eye level from wrist to the tip of my fingers, to see how much puckering and drawing was occurring, then a sideways picture. After a few weeks of staring nonstop at your hand, it all blurrs together, and the pictures bring clarity.

I know how you feel about wondering what to do. Unfortunately I could not find anyone who could look at my hand and say "Oh, of course you need this type of treatment". I had to become my own treatment specialist for the first time in my life. It is a overwhelming feeling of not knowing what is the right thing to do. My hand was beginning to interfere with my work and I knew I had to do something.

Good luck and take pictures!!!

Lori

13.04.10 06:36
flojo 
13.04.10 06:36
flojo 
Re: DD in young people

I agree with Lori. She took pictures on a regular basis and I didn't. Wish I had, but even so, I felt like you - racing with my hand. I just knew I had to do something soon and I got NA. As it turned out, that was the thing to do, but I really wasn't positive at the time.
Dr. Denkler is a hand specialist/surgeon who used to do surgeries on Dupuytren's hands all the time until he found out about NA. Now he does NA whenever he thinks it will work.
Let us know what you find out and what you decide.

13.04.10 19:40
kellyjo731 
13.04.10 19:40
kellyjo731 
Re: DD in young people

i cant thank you guys enough for the support and advice you have given me. when i feel like i have a better handle on what is going on i promise to pay it forward for other people!

today i sat and made a time line to figure out exactly how things were going... i also made an appt with dr denkler a week from today to see what he says. In one month my finger has gone from not a problem in the world to when i lay the back of my hand on a table and try to straighten it my ring finger is pointing up at the ceiling and excruciatingly painful ... from what i can tell this is progressing quickly and i hope that dr denkler will be able to help me or point me in the direction of help. I will let you guys know after i see him what he says... thanks again.



kelly jo

22.04.10 19:47
daveuk

not registered

22.04.10 19:47
daveuk

not registered

Re: DD in young people

I hope your appointment went well kelly jo. I was diagnosed with DD when 18 and am now 42 and just considering na. I know everyone is different but mine was aggressive like yours and rapidly progressed in both my little fingers but just as rapidly stopped and stayed stable for the next 20 years. It's been a bit awkward with one finger at 90 degrees and the other at 45 but really I don't know any different now. I am probably going for na as now my ring finger is slowly going at the knuckle. Good luck

01.06.10 15:04
stephenie

not registered

01.06.10 15:04
stephenie

not registered

Re: DD in young people

I am 16 years old female, and I was diagnosed with Dupuytren's contracture at 2 weeks of age. i have had 3 surgeries yet it keeps getting worse they don't know what there is left to do.

01.06.10 18:30
LubaM. 
01.06.10 18:30
LubaM. 
Re: DD in young people

My PIP pinkie finger went from 90 degrees contracture to 20 degrees after NA. I believe NA (and radiotherapy when indicated) should be first choice of treatments before surgeries... which should be done when all else fails. Check out all the information on the menu at left side of this page.

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