Forum for Dupuytren's contracture

Re: Cords

wach — Sat, 31 Jul 2010 10:32:56 +0200

callie,

that's certainly true. NA does not stop the activity, though it might interrupt it for a while.

Removing the diseased tissue has always been the reasoning for surgery. Yet on an average recurrence also happens after surgery. You have been lucky having no recurrence for 8 1/2 years and no surgery induced extension into other areas. A thorough and experienced surgeon certainly helps but as long as we don't know how the disease starts he can't be sure that he removed all diseased tissue. The disease might e.g. still be in the skin and would then require transplanted skin from elsewhere. But for the time being nobody knows that.

I myself had surgery 10 years ago and still no recurrence, which is good, but I had massive extension into other areas. That sure doesn't happen to each and everyone, probably only to a minority, but's it's a risk and might start a series of surgeries.

Wolfgang

callie:
wach,

That is interesting. Could it be said that NA does not arrest the activity of Dupuytren's, but interrupts the activity? The diseased tissue is still in the hand and continues to grow.

I think about this because of my situation with my limited fasciectomy and the micro surgery techniques used. My surgeon felt fairly confident that he removed all of the diseased tissue. It has now been 8 1/2 years since surgery and there is zero indication of Dupuytren's in my hand.

Re: Cords

flojo — Sat, 31 Jul 2010 05:21:24 +0200

Cindy850, You are right. There is so much information because every hand is different. The hard part is deciding what you need to do for your hand. At some point, I think it will come together for you and you'll be able to make a decision.
Even after I made my decision about NA then RT, I still wondered. I do now believe it was the right thing to do, but I don't think you can be absolutely positive about what is the right thing - 99.44%, but 100% sure. This disease is too weird. I just knew that I didn't want to wait for extreme contracture and then do surgery.

paraffin wax

cindy850 — Sat, 31 Jul 2010 04:20:01 +0200

Okay if the grip ball is out -how about paraffin wax treatments that you can do at home. This sounds like it might make our hands feel better. Has anybody tried this yet? We are looking for comfort because unfortunately there is no cure so we shoot for the next best thing.

Re: Grip ball

cindy850 — Sat, 31 Jul 2010 04:10:04 +0200

Yes David you are right they don't want you to stretching your fingers backward- that is a no ,no. For awhile he talked about rolling your hands on a dowel and then he also changed that. The reason i thought about the grip ball is it is small and it comes in different resistances so you could make your hand stronger and there is no backward stretching. You can find different kinds on Amazon. I never pull my fingers backward. If i am wrong please someone tell me so i don't go and buy these. It was just a wild thought and i could be wrong.

Edited 07/31/10 04:13

Re: Xiaflex for Ledderhose

David26 — Sat, 31 Jul 2010 03:42:59 +0200

someone with more expertise can answer better but my understanding of what I've read is that Ledderhose disease is more about nodules and less about contracture, that is a little different than DD. Xiaflex is a treatment for cords and the related contractures, so I'm thinking it would not be considered for nodular treatment. If you had contractures of the toes, it might be an option.

Re: Grip ball

David26 — Sat, 31 Jul 2010 03:33:18 +0200

click on the "new thread" field towards the top of the forum page
http://www.dupuytren-online.info/Forum_E...en/index-0.html

on the stretching this might be of interest, Dr. Eaton says there is evidence this might provoke contracture, something to consider anyway
http://dupuytrenfoundation.blogspot.com/...blasts-and.html
and read the last paragraph here http://www.dupuytrenfoundation.org/Why-Dupuytrens

Edited 07/31/10 03:34

Re: Grip ball

paradise — Sat, 31 Jul 2010 02:01:45 +0200

Aloha

Haven't tried a grip ball, but since my last posting on this forum - my DD has gone ballastic in both hands and the little finger on my right hand has started to bend down from the top joint. Seems mine is aggressive? In April I found the first tumor in my left foot and through July? It is in both hands and both feet.

Sooooo...........I do hand stretching exercises every morning and I mean, I really stretch the fingers and palms. Just a bit of pain at first and then I am fine. It seems to help me throughout the day. Also, I get deep tissue massages in both feet and hands and have to tell you that it just helps the flexibility and pain control, also.

Need to figure out exactly how to post without answering to an existing post on this forum - because I have questions and thoughts that I would like to throw out to all of you.

My best.

Grip ball

cindy850 — Fri, 30 Jul 2010 23:02:42 +0200

Was wondering if anybody has ever tried something called a grip ball. I know it won't cure and it won't stop contractions but i was just thinking along the lines of just keeping the hands and grip moving.

Re: NA in Minnesota

quinnt01 — Thu, 29 Jul 2010 23:14:53 +0200

Dr. Nicholas Meyer, from St. Croix Orthopedics (http://www.stcroixortho.com/Staff-Detail...54-5ced5fed2cf7) is another Twin City physician who studied with Eaton. I've had him examine my hand, but have not yet done the NA procedure. I plan on going to him when I do.

Edited 07/30/10 18:48

Xiaflex for Ledderhose

SamA — Thu, 29 Jul 2010 19:12:29 +0200

I am interested in any information on Xiaflex as a enzyme injection for the treatment of Ledderhose It was recently approved by the FDA for the treatment of dupuytren contracture and it is my understanding that dupuytren and Ledderhose are very similar. The reports I have been reading indicate favorable results for dupuyren when treated with Xiaflex.

Is there reason to believe that Xiaflex will become a successful 'off lable' treatment for Ledderhose? It will definitely be "off label" because the expense of getting FDA approval will not justify the maker of Xiaflex getting it approved.

Thanks

Re: Advanced Dupuytrens & Needle Aponeurotomy (NA)

wach — Thu, 29 Jul 2010 17:27:00 +0200

Phil, there are several experienced ones in the UK, probably more than we are listing on http://www.dupuytren-online.info/NA_list_UK.html, but I don't know which of them would treat a stage 3 contracture with NA. Maybe it would make sense to call them upfront explaining that the contracture is already progressed to x degree, a surgery is not desired, and whether the doctor has experience in treating stage 3/4 patients with NA.

Good luck!

Wolfgang

philwaite:
Good advice - as always - thank you for the help - much appreciated.

Will now confidently raise the topic with our friend (in terms of definitely worth giving it a try) & then set about locating an experienced, UK based, NA surgeon.

If anyone already knows of one or two, then that would be brilliant & thanks in advance.

Re: Advanced Dupuytrens & Needle Aponeurotomy (NA)

philwaite — Thu, 29 Jul 2010 16:03:35 +0200

Good advice - as always - thank you for the help - much appreciated.

Will now confidently raise the topic with our friend (in terms of definitely worth giving it a try) & then set about locating an experienced, UK based, NA surgeon.

If anyone already knows of one or two, then that would be brilliant & thanks in advance.

Edited 07/29/10 16:05

Re: Advanced Dupuytrens & Needle Aponeurotomy (NA)

wach — Thu, 29 Jul 2010 15:53:15 +0200

Phil, the age won't be an issue because this is a minimal invasive technique. Actually, it is specifically suitable for elderly people who do not want to go surgery (again). For the rest, the doctor has to decide after looking at it. No way to do that via the Internet or pictures.

Wolfgang

Re: Advanced Dupuytrens & Needle Aponeurotomy (NA)

philwaite — Thu, 29 Jul 2010 15:22:01 +0200

Hi Wolfgang,

1. Do you think that his age (79 or 80 but in a very good general state of health) would be a barrier to treatment?

2. It is several years since his operation and with zero treatment (or advice) in between.
Several of his fingers show no sign of mobility at all - pretty well 'locked-down'.
Is this now maybe past the point of no return?

Many thanks in advance,
Phil

Re: Advanced Dupuytrens & Needle Aponeurotomy (NA)

wach — Thu, 29 Jul 2010 13:23:17 +0200

Some doctors have used and are using NA also for advanced stages of Dupuytren's (see eg at the bottom of http://www.dupuytren-online.info/needle_aponeurotomy.html). I would recommend a doctor who is experienced with NA is severe stages, not a newcomer. Don't expect the finger to fully straighten again but very signifiant improvements are possibly.

Using a splint afterwards has sometimes helped to further straighten the finger (Mainel presented that at the Miami conference http://dupuytrensymposium.com/Abstracts/Meinel1.pdf).

When the finger has been severaly contracted for a longer period of time usually the skin has adapted and might tear when the finger is straightened. That's normal and can be easily fixed.

Wolfgang

Advanced Dupuytrens & Needle Aponeurotomy (NA)

philwaite — Thu, 29 Jul 2010 12:50:17 +0200

A close family friend is in his late 70's and has very advanced DD.
He had open surgery on his right hand but this was never a success and DD came back very quickly (18 mths).

His right hand now has extremely limited usage due to severe finger & thumb contractions and his left hand is rapidly catching up. Pretty soon, he will have significant problems with everyday life.

Despite the bad situation, he will not consider repeat open surgery (bad memories of the operation & a long recovery period). Frankly, it sounds like he had a particularly poor or inexperienced surgeon & the post-operation aftercare and advice was minimal. I am sure that things have improved significantly since.

Considering the very advanced state of the DD & his age, is NA a realistic option to pursue?

His GP has absolutely nothing, in terms of advice, worth listening to.

Thanks

Re: Cords

cindy850 — Wed, 28 Jul 2010 17:08:08 +0200

Got up the morning and my right hand was aching nothing new because they both ache most of the time. As i'm sitting there drinking my cup of hot tea i looked at he palm of my hand. That stupid cord in the palm was red - looked like a red line in my hand but it was the cord. What's up with that! IS THERE ANY END IN SITE FOR THIS?

Re: NICE Initial Consultation Response on approval for RT for DC

philwaite — Wed, 28 Jul 2010 10:24:27 +0200

handhurt1:
Have posted my comments, and asked that info on where we could get RT on NHS close to home would be very useful.

Very good point to make & ties in very well with the proposal that all relevant medical contacts (starting with GP's) need to have an urgent educational refresh on treatment options for Dupuytren patients.

Re: Curious

@Issleib2 — Tue, 27 Jul 2010 21:39:02 +0200

Yes I have Alopecia Universalis, Vitaligo, and had autoimmune reabsorption in a tooth. I didn't know you could DO autoimmune in a tooth. But It could have been something important like a kidney so I'm OK with that

Re: NA in Minnesota

jimh — Tue, 27 Jul 2010 21:35:00 +0200

Dr. Marco Rizzo at the Mayo Clinic, in Rochester, does NA and received training from Dr. Eaton. I had an NA procedure from Dr. Rizzo a year ago. It was only partially successful, but I had a difficult and unusual contracture. I will probably go back for more treatment of other areas of my hands.