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Almost Three Years
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08/26/06 02:57
Jim

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08/26/06 02:57
Jim

not registered

Almost Three Years

Almost 3 years ago I had surgery on my right hand to relieve contracture in two fingers that had progressed very fast and had reached almost 90 degrees. I was, and remain impressed with how well the surgery went. The followup care was good and I cannot praise the staff enough.

I have read many threads in the forum and I am always amazed at the number of postings that describe uncaring or uniformed doctors and medical staff. I think many of these post are from people who would complain about anything or may be inclined to think that they more than others. I was amazed at well informed my doctors were on Dupuyten's and how knowledgable they were about the treatment options. The other recurring theme in many messages and that doctors only understand surgery. Well, I don't think that is true.

As for my case: the disease advanced very quickly and while I was a candidate for less invasive treatment, I was advised to have the open surgery and after three years my fingers remain straight, I have nearly all the flexibility I had before. Not 100% to be sure, but close. The only reminder is the scar, which does not bother me.

This is a simple thing to say, but if you are a candidate for surgery, be sure to check out your doctor and just as shopping for something, get some references. There are lots of good doctors and medical technicians out there to help you. No-one rushed me into this operation and I was actually surprised at how long I was advised to wait. But, once I had the operation it went well. I was in and out in less than 6 hours and while my hand was bandaged up for 10 days I quickly regained use of my hand. Most surprising was not that I experienced very little pain.

Fortunately, I had not seen any recurrance and so far so good with my other hand. If you are a candidate for surgery, I can attest that it works. I would be very interested in hearing how others have fared after surgery.

Regards,

Jim

08/27/06 02:19
Sean 
08/27/06 02:19
Sean 
Recovery from surgery

My recovery was similar to yours. It has been about five years since my surgery. Still, there is no hint of contraction returning to my finger. I was lucky in that scar tissue is almost nonexistent. My finger was at about 85 degrees contracted prior to surgery. Surgery is a fine option, among other options. I, also, had very little pain. There are very few people complaining on this forum about surgery, considering the thousands of procedures a year.

08/27/06 02:13
Wolfgang

not registered

08/27/06 02:13
Wolfgang

not registered

surgery

Jim,

I welcome your post because, at least from time to time, an advocat for surgery is good! This forum is to a large extent dedicated to NA and does a marvelous job in establishing NA in the US and world wide. But there are also many people, like you, who had surgery and are satisfied. It is sure worth while and fair to mention this from time to time.

My own experience is similar to yours: I had surgery on my left hand about three years ago. Since then I have no recurrence, my finger is still straight and 95% percent functionally (occasionally I drop a fork and that coordinational problem accounts for the 5 %). My surgery was straight from PIP to MCP and then zig-zag through most of the palm. The scar is very minor. I believe I had an excellent surgeon and I also believe you better have a good one (I saw several bad results, fortunately not on my own hands).

Having said all this I personally still would be somewhat reluctant to recommend surgery. That has several reasons: different to you my hand was painful after surgery and it took about six months to recover (but is an example to not give up hope). After three years it is still not as it used to be prior to surgery. I don't suffer from it but I feel some blockage when making a fist (though I always succeed). My worst side effect probably was that I had just a single cord that was operated on and immediately, i.e. within just four weeks, Dupuytren extended to six other areas and there it grew rapidly (someone wrote in this forum "it came back with vengeance", I can relate to that). I had that rat pack radiated, some vanished, the rest grows slower.

In a more generalized view I think that surgery has - on an average - considerably more undesirable side effects than NA. In the forthcoming ASSH conference statistics on NA will be presented and Keith Denkler will present an extensive overview of surgery data as well. The higher percentage of side effects of sugery by no means excludes it as a valid therapy. About 80 percent of the people after surgery have no side effects and are satisfied which is pretty good (and you are obviously one of them). Surgery can help in progressed stages where radiotherapy or even NA can't help anymore.

I think it is not in our interest to line up therapies against each other. We should understand their values and drawbacks and then make the best choice, in cooperation with our MD. But we should have a fair view of all options and your post helped in that respect (at least hat's my opinion).

Besides that it is always good to hear a story that ends well!

Wolfgang

08/27/06 02:47
Mark D.

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08/27/06 02:47
Mark D.

not registered

Balanced Views - Great

Jim & Wolfgang:

It's good to read well-reasoned posts shedding light on different aspects of DD treatment.

I had NA 11 days ago, & am very happy I chose that route.

But, I'm also pleased to learn that folks like Jim have had good experiences with Open Surgery.

This is not an either/or debate.

This is about adding as many treatment modalities as we can, so as to enhance our chances for leading lives with functional hands.

In my case, I consider myself blessed that my team of Docs (Denkler & Benhaim) gave me an alternative to regular surgery.

Mark

08/28/06 02:29
Diane

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08/28/06 02:29
Diane

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Surgery vs NA

Its good to see more discussion comparing OS and NA. I had two traditional surgeries performed in different parts of the country. Both surgeons were board certified hand surgeons and both did excellent work and were kind gentlemen and the entire experience was with little pain, good immediate results and excellent follow up. I can't complain about any of it. I would see either surgeon again and recommend them under the right circumstances. One of them did a carpal tunnel release on both my husbands hands with perfect results. The second surgery was a lengthy procedure with two surgeons and every single scrap of dups tissue removed and somehow I thought that this thorough procedure would give me a long term fix.

But the PIP bend started back within a year though the distal joint has stayed where it was. For those of us for whom surgery seems to make this condition worse, having OS as the first treatment is probably not the best choice. But you don't know this until after the fact. And since surgeon # 2 told me that eventual amputation might be required, I decided to try NA when the bend came back. I have learned alot about this disease since it started in 1998, the most important being that i have to be proactive in keeping informed on the disease and treatments and getting treatment before the contracture gets too bad.

So my thoughts are similar to Wolfgang's. I would tell anyone to at least consult an NA practitioner before proceeding with OS. I need to use this hand for about 30 more years and it just seems that if i needed an OS every two years, pinkie would not last as long as i need it. But I can envision having NA all those times. Or perhaps collagenase or radiotherapy.

I am so glad that the ASSH presentation is going to cover all the new options and can't wait to hear the follow up.

08/28/06 02:24
Mark D

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08/28/06 02:24
Mark D

not registered

Good Post

Diane:

Thanks for the thoughtful post.

Mark

08/31/06 02:13
John

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08/31/06 02:13
John

not registered

Surgery Does Work

It is encouraging to see some messages that address surgery where people can tell of their experiences. I had surgery a couple of years ago and it was OK. I don't understand why I got this disease and can only guess it is due to family history, but I had the operation and it worked.

My recovery was a little longer than I would have liked as I had some swelling that lasted about three weeks before it subsided. But after a couple of weeks, I was back to my normal routine. My fingers remain straight and I would recommend surgery. My surgeon was just great. A real gentleman.

09/06/06 02:53
Edward

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09/06/06 02:53
Edward

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My Operation

This message string is interesting to me and I would like to share my experience.

My operation was over three years ago and compared to other operations, it was surprisingly easy. I had about a week of serious recovery where it was hard to manage around the house, but I was able to go back to work after four days and it was OK. I was back to my normal routine (mostly) after about two weeks.

I have very fond memories of the medical staff. Very nice people. Very knowledgeble and most of all, showed great concern for my post operation care. Finally, I believe in being involved in treatment and care and found that working with the staff with followup care for physical therapy to be the most important part of the process.

10/17/06 02:43
David S

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10/17/06 02:43
David S

not registered

Surgery

Hello all,

I had surgery about 1 and 1/2 years ago and would like to say that I would not hesitate about doing it again. I am in my early 50's and watched the disease advance over about six or seven years.
I had not much experience with any kind of surgery before(knock on wood), but it went just great. Recovery was effectively over in about a month and you would never know I ever had surgery. Even the surgical scar is hard to notice. The only thing I did not like was waiting to get the stiches out. They were uncomfortable.
I don't what's best for others, but I wanted to let people know about my experience.

10/18/06 02:58
Diane

not registered

10/18/06 02:58
Diane

not registered

Surgery perspective

Its good to hear that there have been good and long lasting results for some from traditional open surgery. I don't think anyone here takes the position that surgery is always a bad option.

My own experience was a traditional surgery in 2002. I was pretty naive and assumed it would fix the problem forever though i was warned it could return. It did come back big time in less than a year. Had another big surgery in 2004. Part of this has held pretty well but the pip joint began to bend again. Both surgeons were well qualified and did great work and i had excellent function after completion. But the disease just wouldn't stay away. Thats when i decided to go to Dr. Denkler. He performed the combination procedure described in the thread"Treatment by Dr. Denkler" and did a great job. Pinkie isn't perfect but it functions quite well.

The problem with starting right off the bat with surgery is that if you are one of the unfortunate people who has rapid recurrance (like me) your hand is already scarred and each successive surgery makes a subsequent NA more difficult as well as accelerating the scarring that is part of the disease. And you don't know if you are one of these people until after the surgery. Your hand can only take so many surgeries. Two surgeons mentioned the possibility of eventual amputation because of this. No Thanks. I would rather repeat the NA every year or even more often than have a big open surgery every year or two because the NA is less traumatic for my hand. So thats why some of us discourage open surgery as a first treatment without at least consulting one of the NA practitioners.

Last time I saw Dr. D he said he thought collagenase might be generally available in about 3 years and it will be a very good thing so I am trying to keep my pinkie together until then. I hope i can get away with maybe one more NA until then.

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professional   circumstances   operation   well-reasoned   Unfortunately   disease   Recovery   traditional   experience   treatment   invasive   out-of-network   practitioners   straight   uncomfortable   fingers   coordinational   surgery   potassium-chloride   surgeon