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RECENT DD DIAGNOSIS
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10/18/2015 17:51
staxman 
10/18/2015 17:51
staxman 
RECENT DD DIAGNOSIS

First off...I discovered this site yesterday and have read many threads. I really appreciate all of you and your stories/guidance.

My background: I'm 61 years old and generally speaking in very good health. My dad died of prostate cancer when he was 70 (diagnosed at 60). That was a huge blow to me in my mid thirties and as a result have carefully watched my health. I'm a vegetarian, exercise regularly and don't mind a beer or glass of wine. My mom is still alive(94 years old). No DD in the family.
About the time of my father's death, I thought I had arthritis in my knuckles but I'm pretty certain it's Garrod's pads. I have flare ups from time to time but have learned to live with them. I say that, but as a guitarist it has definitely affected my mobility.

Current: About six months ago I noticed a nodule directly below my middle finger on my right hand. (I'm right handed). After a period of time, it appeared to shrink. At the beginning of the summer, two more nodules appeared on the same hand directly below the ring finger. One is small, the other, larger than the original one. Interestingly, I experienced a flare-up on the knuckle of the ring finger in question. Knocking on wood, my left hand has been unaffected by nodules.

Doctor Visit: At the beginning of summer I went to see a hand specialist. He immediately diagnosed it as DD. Said it was mild. I can place my hand flat on a table with absolutely to problem (he said, knocking wood again.) This doctor had terrible bedside manner. I was dumbfounded when he uttered the diagnosis hearing the word disease without a proper explanation. He said to come back when contraction is present. He mentioned cutting the cords with the needle or surgery. Didn't mention radiation or Xiaflex. His office does administer Xiaflex so that was weird.

Future: Going to set up another visit with new, trusted doc in same practice to plan a strategy. Can any of you who have had more than one Xiaflex treatment let me know how much time passed between the first and need for the second? I'm wondering what percentage of people treated with the drug haven't needed followup treatment and how long it's been since the injection....
Sounds like I'd be a good candidate for the radiation. So many things to think about. And I'm a worrier and overthink.

If you feel like responding I'm interested in what you have to say. Best wishes to all. Thanks...

Staxman

10/18/2015 19:00
spanishbuddha 

Administrator

10/18/2015 19:00
spanishbuddha 

Administrator

Re: RECENT DD DIAGNOSIS

Hi staxman

As a fellow (amateur) musician I can empathise with the shock of the diagnosis. It sounds like it's still quite early, and a hand surgeon saying come back when you have a contracture is probably accurate, although not helpful, and his manner sounds quite insulting.

But, you may never need any treatment!

But again, RT is a possibility to slow or prevent contracture if the symptoms indicate activity with progression. Find and plan with someone who would do that, and maybe wait a bit more. Keep a record whilst waiting with photos of changes including symptoms so you have an objective view of the rate of progression, but don't be too obsessed about it.

Also, consider and plan whether you would have Xiaflex or NA if you do develop a contracture. You do not have Xiaflex for nodules without contracture so it's too early for that. A discussion on all these aspects with the new doc would be good, but be prepared if they don't know about or agree with RT.

Best wishes
SB

10/18/2015 19:54
staxman 
10/18/2015 19:54
staxman 
Re: RECENT DD DIAGNOSIS

Thanks for responding SB. Means a lot that you took the time to offer your thoughts.
Will try to avoid obsessing. x

10/18/2015 23:16
Cherise 
10/18/2015 23:16
Cherise 

Re: RECENT DD DIAGNOSIS

Hello Staxman,
The doc is right. If you have no contracture leave it alone. This disease is known to flare or worsen considerably if any treatment is done. It tends to set of the process of tissue thickening with collagen build up and the cords contract faster as more nodes becomes evident & larger.

Leave it ALONE . Until you start to see a contracture to 30 % or more. Then see a dr for check up. Then try RT when the cords are small. RT works on the nodes then Xiaflex and surgery as the very last resort. Every treatment you have before you require intervention will cause this disease to advance. It's called the Keobner Effect. Many people I know have just left it alone and never see enough contracture to begin treatment.

This will save you from a lot of DD progression of this disease. I had to have Xiaflex treatment due to a uneducated hand surgeon unfamiliar with DD. he recommended surgery with a slight curve of my pinky. I activated the DD disease in all 4 fingers and thumb. The pinky contracted to fist and ring finger half way. Xiaflex did straighten my fingers out. It was a painful experience but worth it. I will need to do it again in the future. I had it done in February of 2015. It took weeks of painful swelling, healing and therapy. However was well worth it. I wear the Fixxglove as a nightly splint to prevent contracture from the relaxed state of sleeping. During the day I wear silver ring splints these are great for musicians. The recommendation of my hand therapist and spring splint worn when needed, and use therapist measurements to order. These ring splints help if you are a musician can hold the the fingers in place and not restrict your movement. Great support before the DD becomes active and helps prevent disfigurement of the fingers as the cords thicken.

Xiaflex was the only alternative I had at the time, and now I am grateful to have useful fingers again. They are stiff and week but that's the risk with this disease. Some people get RT ASAP as it did not help me. My pinky was slightly contracted and surgery caused the DD to advance so quickly in my whole hand. RT was tried after surgery.didnt work as the fingers were to far advanced and thickened .

Good luck and take care of your hands use massage on the nodes and don't stress the hands & fingers lifting heavy objects etc.

Kind Regards,
Cherise

10/19/2015 00:06
staxman 
10/19/2015 00:06
staxman 
Re: RECENT DD DIAGNOSIS

I appreciate your input. Heat on my hand makes it feel so much better. Is this ok?

10/19/2015 01:51
Cherise 
10/19/2015 01:51
Cherise 

Re: RECENT DD DIAGNOSIS

That's nice to say. I hope it helps with any decisions you make down the road. DD is such a fickle disease.
Sure, heat is a good idea! I use a home hot wax spa . Softens nodes and hands.

Cherise.

10/19/2015 05:53
wach 

Administrator

10/19/2015 05:53
wach 

Administrator

Re: RECENT DD DIAGNOSIS

Hi staxman,

I would recommend not only reading posts of this forum but also the tnformation provided on this website. For an overvoiew on this disease you might have a look at
http://www.dupuytren-online.info/dupuytrens_contracture.html

Treatment options are described on
http://www.dupuytren-online.info/dupuytr..._therapies.html

From what you are posting you seem to be a good candidate for radiotherapy, so you might also have a look at
http://www.dupuytren-online.info/radiation_therapy.html

Radiotherapy usually does not activate Dupuytren's but slows it down or stops it. It is most effcicient in the first year after nodules appeared. But as Spanishbuddha wrote, there is also a chance that progression stops without any treatment. That happens occasionally but unfortunately unpredictably.

Wolfgang

staxman:
First off...I discovered this site yesterday and have read many threads. I really appreciate all of you and your stories/guidance.

---
Current: About six months ago I noticed a nodule directly below my middle finger on my right hand. (I'm right handed). After a period of time, it appeared to shrink. At the beginning of the summer, two more nodules appeared on the same hand directly below the ring finger. One is small, the other, larger than the original one. Interestingly, I experienced a flare-up on the knuckle of the ring finger in question. Knocking on wood, my left hand has been unaffected by nodules.

---
Staxman

10/19/2015 09:56
staxman 
10/19/2015 09:56
staxman 
Re: RECENT DD DIAGNOSIS

Thanks, Wolfgang. A lot to consider. I had read the pages you recommended but it was good to revisit.
Will diss all options with my doc. RT sounds like the way to go but I worry about radiation dose. Thanks so much again and as I've told everyone else, I'll keep you in the loop along the way.

10/19/2015 10:38
spanishbuddha 

Administrator

10/19/2015 10:38
spanishbuddha 

Administrator

Re: RECENT DD DIAGNOSIS

staxman:
Thanks, Wolfgang. A lot to consider. I had read the pages you recommended but it was good to revisit.
Will diss all options with my doc. RT sounds like the way to go but I worry about radiation dose. Thanks so much again and as I've told everyone else, I'll keep you in the loop along the way.
You saw the IDS calculation on the risk of RT causing cancer?
http://www.dupuytren-online.de/downloads...20Dupuytren.htm
RT for DD or LD is done of course on an extremity, with very little penetration, and if I may say so, as one of similar age, but only IMHO there are other things more pertinent to worry about

10/19/2015 10:50
staxman 
10/19/2015 10:50
staxman 
Re: RECENT DD DIAGNOSIS

I asked the question because I needed you to say what you did.
I'm a worrier. I need to stop worrying.

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