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Advice please
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11/03/18 14:13
spanishbuddha 

Administrator

11/03/18 14:13
spanishbuddha 

Administrator

Re: Advice please

I can't offer a personal recommendation, but Dr Manet Chopin comes up regularly on the forum with good feedback.

11/04/18 01:40
GailSusan 
11/04/18 01:40
GailSusan 
Re: Advice please

I just had surgery on my left hand on Monday, October 22. I was able to drive three days after surgery. I just had the big surgical cast taken off on Thursday. I'm able to do just about everything I did before. It wasn't painful. I didn't take any painkillers afterwards. I do have a bandage on my left hand, but that's about it. I get the stitches taken out next week and begin physical therapy. I've written about the surgery and am updating everyone on my progress on a separate post. The surgery was successful - full extension of pinkie finger and only 5% angle on my fourth finger. The Xiaflex completely failed in my instance and made my hand worse.

Surgery was really not a big deal. They used twilight anesthesia. I was out for the count, but came to quickly and didn't spend much time in recovery. The surgeon made two incisions. One of them goes down my palm into the pinkie finger and the other one is just on my palm. To me, it was much less of an ordeal than the Xiaflex, which was painful and interrupted my life. I'd choose surgery over Xiaflex any day.

I had surgery on my right hand 20 years ago and physical therapy afterwards. My right hand is fully functioning and all fingers have full extension. There is a faint scar on my palm and pinkie from that surgery.

11/04/18 08:03
Seph 
11/04/18 08:03
Seph 

Re: Advice please

Allan; I have been seeing Dr Manet Chopin for the past 7-8 years. She is very good and is getting more skilled each time I see her. If you send her and email with photographs she will respond. mariepascalemanetchopin@sfr.fr

She does NA for Dupuytrens on Friday afternoons. You can make an appointment by email and she will see you at a precise time with consultation and NA on the spot. For one hand you will be in and out in 20 minutes.


Seph

01/08/19 01:03
Cathy88 
01/08/19 01:03
Cathy88 
Re: Advice please

I am brand new to this whole thing. Had no idea what was going on with my little finger until last Thursday. Figured it was just a little easy to remove cyst. So surprised. Never heard of this. Doctor said very little; just scheduled surgery for 3 weeks. I came home and read about it, called his assistant, and found out it IS a big deal. I have nobody to do the things I do; take care of 4 dogs and parrots, plus I live in a bi=level house. I am a journalist and need to type. Write a weekly column, plus don't want a painful hand, full of scar tissue. I have the beginning of another one between the pointer finger and one by it, on my right hand. I suffer from anxiety anyway, and have other health issues. Am scared to death. I read there is the option of injections; where is this? I am in Indiana. If I do nothing, what is the worse thing? I am 74
Can it be just an easy thing and I am back to normal after healing? Have had bad experience with doctors so I am not ready to just get my hand cut open and regret it later.

01/08/19 08:28
spanishbuddha 

Administrator

01/08/19 08:28
spanishbuddha 

Administrator

Re: Advice please

Cathy88:
I am brand new to this whole thing. Had no idea what was going on with my little finger until last Thursday. Figured it was just a little easy to remove cyst. So surprised. Never heard of this. Doctor said very little; just scheduled surgery for 3 weeks. I came home and read about it, called his assistant, and found out it IS a big deal. I have nobody to do the things I do; take care of 4 dogs and parrots, plus I live in a bi=level house. I am a journalist and need to type. Write a weekly column, plus don't want a painful hand, full of scar tissue. I have the beginning of another one between the pointer finger and one by it, on my right hand. I suffer from anxiety anyway, and have other health issues. Am scared to death. I read there is the option of injections; where is this? I am in Indiana. If I do nothing, what is the worse thing? I am 74
Can it be just an easy thing and I am back to normal after healing? Have had bad experience with doctors so I am not ready to just get my hand cut open and regret it later.
Hi Cathy, welcome to the forum. Have you had a confirmed diagnosis of Dupuytren’s? Do you have a bent little finger that cannot be straightened even with the other hand, a contracture? There’s more info on the web site. https://www.dupuytren-online.info/dupuyt...ontracture.html.

Many people who develop Dupuytren’s do not get a contracture, but for those who do there are treatment options. Our website covers the treatment options too. https://www.dupuytren-online.info/index.html#. Surgery is usually not advised except for severe cases of a contracture, certainly not for removing nodules (lumps). In summary treatment ranges from Radiotherapy, at early stage before contracture, NA or needle aponeurotomy to release modest contracture, Xiaflex/Xiapex which is a collagenase enzyme injection as an alternative to NA, then surgery.

At your age, if diagnosisis confirmed, there’s a good chance of slow progression with the disease, possibly little or no contracture. If there’s none you could wait and see or consider Radiotherapy RT, if modest look into NA or Xiaflex. Leave surgery as a last resort.

In the meantime protect those hands, keep a photo journal of them to monitor progression, do some reading and let us know more about your hands and diagnosis.

Best wishes SB

01/08/19 15:21
GailSusan 
01/08/19 15:21
GailSusan 
Re: Advice please

Cathy,

I would not rush into any treatment. You need the opinion of several hand specialists. Not every hand surgeon is qualified to use Xiaflex. Most won't mention NA or radiation.

I tried Xiaflex, but it just made my DC worse. Two friends had it using the same hand surgeon and their hands were fine. They didn’t even have hand therapy and didn’t need to wear a splint.

I have had surgery on my right hand, which is my dominant hand, 20 years ago with no reoccurrence. Just had my left hand operated on in October and still wearing a splint and going to hand therapist 2X week.

Take your time. See how fast your DC is progressing. Then after you investigate your options make your decision.

I live alone as well and work on my computer. I was driving my car three days after surgery. If you live alone you do have to plan ahead as you can’t open pill bottles right after surgery or do other fine motor tasks. I was at my computer the day after surgery. Typing was slow as I could only do hunt and peck with one hand, but I did it.

I wrote up my experience with the surgery on this site and my progress in healing. If you have hand surgery find a surgeon who is highly recommended. It’s all about the skill and experience of the surgeon.

01/11/19 02:01
rockinroller 
01/11/19 02:01
rockinroller 
Re: Advice please

My father's Dupuytrens progressed to the point that he underwent surgery--ultimately on both hands--and paid the price of the contractures reoccurring in both hands and leaving horrible scars in the process. Four years ago, what I thought was a callous at the base of my little finger on my palm was the first evidence of this horrible, degenerative disease. Within a year, sub-surface cords migrated their way up each of the two smaller fingers on that hand, resulting in the pinky being pulled inward, almost to the point of touching my palm. Being a pianist plus typing a lot on a computer keyboard, I was especially affected by this condition and sought out as much information as I could in order to develop the "right" treatment plan. 3 of the 6 specialists I saw (all in Michigan) promoted surgery as my option. A 4th said he wouldn't even touch my situation due to the concentration of cords in the little finger alone, being fearful of cutting a valuable nerve or tendon. The Xiaflex website had a link to view doctors in my area based on a zip code search that had administered the chemical "at least 12 times" in the recent year. I proceeded to define the top 3 and decided I would visit each, to determine who I would choose to proceed with this treatment. I ended up with Dr. Gregory Sobol in Beverly Hills, a Detroit suburb, although he was not (by far) the closest to me, nor was he the most experienced (#3 in the list actually). However he seemed to exude the type of confidence you'd want from a doctor, plus he was young (mid 40s?) and extremely intelligent. I underwent two separate procedures last year--one reserved for the little finger alone due to the delicate nature of treating a small area filled with this disease--and as of this writing--approximately 5 months after the most recent procedure--I am happy to report that I continue to have at least 90% restoration of my normal function. The only caveat is that because the pinky was so mangled by the cords that had ultimately enveloped around tendons and nerves, it appears to have suffered some permanent deforming, in that its knuckle is the only part of that finger--looking at it sideways when all of my fingers are erect, from the backside--that aligns with the rest of the fingers. I have a sort of "ski slope" shape that drops on either side of the knuckle. Handshakes, piano playing, wrapping my fingers around a golf club handle, etc. all seem to be fine and "normal". There's just that bit of visual deformity, however I'd have to mention it to someone for them to notice. Based on all the research I've done--reading reviews included--the Xiaflex option is a "love-hate" There's hardly a patient review that's not passionate about it--good and bad. For me: I'd do it again I think, in the absence of anything else that may present from here on out as viable option. To me, it's the lesser of the available evils. My summary of Xiaflex is: The GOOD: It works, and it's relatively low impact (I was fully operational within 30 days and could use the fingers within a few days); The BAD: It's costly (after Medicare covered their share, each session cost me approximately $800 out of pocket), and the procedure is very painful, as far as the injections themselves, and particularly the "breaking of the cords" session which occurs 2-4 days after the injection session.

Edited 01/11/19 02:11

01/12/19 19:59
Else 
01/12/19 19:59
Else 
Re: Advice please

I am new to this forum. I thought I had hurt my right hand as my finger next to the little one was behaving in a strange way, not sore but had difficulty moving it up. Off I went to my doctor as I thought maybe I'd hurt it gardening, she said some thing that sounded like a foreign language, so she write down dupytrenes contracture and said to go home and check it out on the internet so here I am. I wonder how I got this! And it is starting in my left hand little finger as well, I wonder if exercising helps it but read some where! It doesn't help. Just need some advise on how to cope with this complaint, ( or is it known as a disease?)

01/13/19 09:18
wach 

Administrator

01/13/19 09:18
wach 

Administrator

Re: Advice please

Hi Else,

first of all, welcome to our forum! I am sure you will find good advice and answers to your question here.

It might be good to familiarize yourself a little with this disease (it is indeed called a disease) and a start might be this page https://www.dupuytren-online.info/dupuyt...ontracture.html . If you are interested, you can continue with https://www.dupuytren-online.info/dupuyt..._therapies.html and then move on to the various therapies.

Should you have questions, this forum is a good place to ask them. Exercising is usually not recommended but you can just wait and watch how your fingers develop. If you feel that nodules and cords in your hand are aggressively growing (meaning e.g. a noticable change within a month) then you might consider radiotherapy. If your fingers contract, minimally invasive treatments like needle fasciotomy or collagenase injection might be the first line of defence. But most people with signs of Dupuytren's never need any treatment, so no need to panic!

Wolfgang

01/13/19 20:06
Else 
01/13/19 20:06
Else 
Re: Advice please

Oh thank you so much, what a helpful article, feel a bit happier about this disease now, I do a lot of hand sewing and knitting, my usually beautiful hand writing is now shocking, so will continue a on bit more relaxed knowing it is not ' just me!'

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contracture   treatment   recurrence   Dupuytren’s   surgery-failed   radiotherapy   mariepascalemanetchopin   straightening   writing--approximately   fingers   surgery   experience   finger--looking   recommendations   recovery   surgery--ultimately   xiaflex   backside--that   dupuytren-online   recommendation