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age of diagnosis
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03/19/2014 12:51
dgmcivor 
03/19/2014 12:51
dgmcivor 
age of diagnosis

I'm 31, had surgery last year, and unsuccessful Xiaflex and Radiation treatments prior to that. Since surgery (june 2013) my finger has started to bend in again, and the finger next to it is following suit. I have noticed a new lump in the palm (right next to my new lightning bolt scar) which is, i assume, the source of the issue.

Has anyone on this forum had a relapse, or been affected at a younger age?

-Doug,
Washington, DC.

03/19/2014 18:49
GaryBall 
03/19/2014 18:49
GaryBall 
Re: age of diagnosis

dgmcivor:
I'm 31, had surgery last year, and unsuccessful Xiaflex and Radiation treatments prior to that. Since surgery (june 2013) my finger has started to bend in again, and the finger next to it is following suit. I have noticed a new lump in the palm (right next to my new lightning bolt scar) which is, i assume, the source of the issue.

Has anyone on this forum had a relapse, or been affected at a younger age?

-Doug,
Washington, DC.

Hi Doug,

I am sorry to hear of your situation. It seems that you are very young to be going through this. I would look through the forum and search the postings by Seph....he has bilateral LD and DC that started back in his teens. Although his situation is aggressive he has maintained an active lifestyle for 40 years. In general he has avoided highly invasive treatments.

Wishing you the best

Gazza

03/19/2014 23:50
Seph 
03/19/2014 23:50
Seph 

Re: age of diagnosis

dgmcivor; As Gary has said I have had bilateral DD and LD for more than 40 years. I have a strange handshake from time to time as my fingers curl over but that's all. It doesn't stop me from doing any physical activity. And nearly every year I get a finger or two straightened using NA.

From your description its sounds like you have DD in only one hand. By 31 I had it both hands and both feet. I have had surgery once on one of my little fingers and I might get it done on the other as the knuckle has fused and NA can't straighten it any more. I will stay away from surgery for the rest of my hands.

My suggestion is that you think of the disease in terms of maintenance and management rather than a search for a cure. You fix it somewhere and it just pops up somewhere else. And given your age it will probably appear in your other hand before too long.

There is another guy in the gym that I attend who has bilateral DD. He is a little older than me (I am 60 in a couple of months). He has had surgery 6-8 times and he is happy with that approach. He seems to be still active in the Gym so I guess it is working for him.

For me I will stick with NA. Its quick, cheep, only painful during the procedure and can be repeated as often as required. And almost no down time. Hand needs to be kept clean and dry for 3 days, no heavy weights for 10 days then back into it.

03/20/2014 11:53
ellenpao 
03/20/2014 11:53
ellenpao 
Re: age of diagnosis

Agree with Seph - I also have bilateral DD and LD - onset in my 40's. I have had successful NA (about 5 times, but have actually lost count) and unsuccessful Xiaflex. I also consider this a disease that has a lot of maintenance and no cure. I call my NAs my 50,000 mile checkups, and will continue to have them as long as I can. My mother had the open hand surgery, and basically really never had use of her hand after that - and the Dups came back anyway. I would never even consider an operation on either my hands or feet.

03/20/2014 12:02
dgmcivor 
03/20/2014 12:02
dgmcivor 
Re: age of diagnosis

Thank you for all of the information. I do have it in both hands, right hand had the small finger curled in at 90 degrees (before, and now after surgery) and a bump in my palm under the middle finger. This instance was the first I noticed of the disease about 10 years ago. (Again, I'm 31) This finger never turned in. I also have it on my right foot, since I was a teenager, which was only diagnosed when my fingers started to curl inwards. On my left hand i have swollen and painful knuckles.

The doctor I went to tried the Xiaflex, but then opted for surgery since the "cord" that ran up my finger was so thick. the cord is gone, but the bending returned within 9ish months.

Why would so many people on this forum opt for the NA vs Surgery? Is the NA procedure 100% effective in correcting the issue for a short time without spurring the disease elsewhere?

I suppose since I have an aggressive case, I just want to know how others have dealt with it? i do appreciate all the feedback!

-Doug

03/20/2014 14:39
callie 
03/20/2014 14:39
callie 
Re: age of diagnosis

Hello Doug,

I am surprised that you would have a return to contracture after surgery without a cord developing. Could that be attributed to the healing process/therapy and not necessarily a return of Dupuytren's?

I had surgery for a 90 degree contracture in little finger 12 years ago. The finger still has zero degree contracture and is perfect. Of course, everyone has different outcomes and age is a consideration. My surgery was at age 55. I did therapy on my own with flexing often during the day.

03/20/2014 20:19
Seph 
03/20/2014 20:19
Seph 

Re: age of diagnosis

dgmcivor:
Why would so many people on this forum opt for the NA vs Surgery? Is the NA procedure 100% effective in correcting the issue for a short time without spurring the disease elsewhere?


Doug; To answer your question. NA is not 100% effective. It seems that surgery can be 100% effective if you do not have aggressive DD. But; if you have aggressive DD or LD it seems the disease will regardless of what you do. And there is anecdotal evidence suggesting that the more you interfere the more it spreads.

The benefit of NA is that it is inexpensive, only takes 20 minutes and you can have it done as often as you like. The disease does seem to return but that's OK you just do it again. The issue with surgery is that for people with aggressive DD the disease comes back as well. Perhaps a bit slower but it does return and there is a limit to the number of times you can have surgery. And then there is the issue with scar tissue.

And with surgery there is the recovery time and the physiotherapy. With NA you can use your hand the same day. Just need to keep it wrapped, dry and clean for 3 days.

Also for me there is the issue of nerve damage. My view is the opposite of what you will hear from most hand surgeons. They will tell you that with NA the doctor can't see what he/she is doing so their is a risk of nerve damage. Trouble is that I know several people who have had surgery and have permanent nerve damage. The difference with NA is that you are awake. Only a very local anesthetic is used so if a nerve is touched both you and the doctor will know instantly - the pain is like an electric shock. The important point is the doctor can withdraw immediately and come in from another angle and avoid any permanent damage.

03/20/2014 21:27
BRIANB 
03/20/2014 21:27
BRIANB 
Re: age of diagnosis

Seph very well stated and accurate in my opinion

03/21/2014 21:43
moondanc 
03/21/2014 21:43
moondanc 
Re: age of diagnosis

ellenpao:
Agree with Seph - I also have bilateral DD and LD - onset in my 40's. I have had successful NA (about 5 times, but have actually lost count) and unsuccessful Xiaflex. I also consider this a disease that has a lot of maintenance and no cure. I call my NAs my 50,000 mile checkups, and will continue to have them as long as I can. My mother had the open hand surgery, and basically really never had use of her hand after that - and the Dups came back anyway. I would never even consider an operation on either my hands or feet.

Did you find your disease got more aggressive after Xiaflex? Have you had any treatments for your LD? Are you happy with you current surgeon for NA and willing to share his/her name?

Diane, another multi-NA patient w/Xiaflex failure

03/26/2014 20:48
bstenman 
03/26/2014 20:48
bstenman 
Re: age of diagnosis

Xiaflex and NA each have their place. NA is more direct as the doctor can repeatedly work an area to get full release but there is greater risk of nerve damage in some areas of the hand. I have been going to Dr. Denkler in Larkspur, CA and he does both and did both during my last two treatments.

The Xiaflex was injected the morning of Day 1 after the doctor numbed my entire hand with licocaine. The Xiaflex is actively dissolving the Dupuytren's affected tissue for 12 hours. On the afternoon of Day 2 the doctor numbed my entire hand with lidocaine and then manipulated it to break loose the affected areas of my hand. On a finger where the Xiaflex was only partially effective he used NA to further release the tissue. The end result was much better than if he had done only the Xiaflex injections or only the NA.

With NA the tissue is pulled apart but nothing is removed as with the Xiaflex which dissolves the tissue. The downside for me with the Xiaflex is that one bottle was not enough and so I had the injections done in July and then done again months later in November of 2013. The upside which was huge is that Dr. Denkler has kept refining his techniques and so each session is markedly better and more effective. When my hand was being treated in November there was an Auxilum company representative present to observe his latest approach.

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