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no more surgery
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10/06/2008 11:44
mariejeanne

not registered

10/06/2008 11:44
mariejeanne

not registered

no more surgery

my husband has had DC for 20 years. The doctor said he had the worst case of DC he had ever seen. All fingers but the pointers and thumb on both hands are bent almost 90 degrees.
13 years ago he had surgery on his left hand. No problem said the prominent professor who operated on him.
He contracted golden staph infection in the wound. Numerous antibiotics did not cure it.
After the amputation of his little finger, the only way to get rid of the infection, he then suffered the beginning of RSD. Reflex Sympathetic Dystrophy. He has had continual, non-stop serious pain from the left hand for almost 13 years.
At no time was he told about the existence of RSD, and the high potential of this terrible, debilitating disease which has absolutely no cure. Even on this website, its simply mentioned as an afterthought, and isn't explained as it should be.
Also, sufferers of this condition can never have any other surgery, due to the risk of the pain being transferred to other parts of the body, as RSD is actually a form of brain damage.
I urge anyone with Dupuytrens who is considering surgery to fully understand the possible side effects including the worst scenario, of having to live with Reflex Sympathetic Dystrophy for the rest of their life, as my husband has to. It isn't a terminal illness... but many times has my husband wished it was.

10/06/2008 19:09
TrevB 
10/06/2008 19:09
TrevB 

Re: no more surgery

I’m very sorry that your husband has RSD marie jeanne. There’s nothing that one can say, that’s terrible. DC is bad enough in itself.

To be fair to this website it does mention side effects of surgery and as with most things medical you still have to research further. I did RSD last night and was quite honestly depressed just reading about the condition,

If you are unfortunate enough to need surgery though, what do you do? Isn’t the outcome of surgery a gamble anyway with RSD being the very worst possible outcome?

I agree that you should try every other option first. As an analogy, I badly broke a collar bone a year ago. The first doctor I saw said my displaced break would require surgery. The consultant decided to wait because of the risks of surgery. The upshot is that I still have a large bump on my shoulder from the break but I’m fine otherwise and was better off without surgery which was the usual route for my condition.


Cambidgeshire, UK.

Edited 10/06/08 23:12

10/06/2008 20:16
Randy_H 
10/06/2008 20:16
Randy_H 

Re: no more surgery

What makes me and quite a number of informed individuals so rabid and crazy is that their certainly is an alternative to surgery but the vast majority of hand surgeons will not tell their patients about it. I have been told that I probably have a mild case of RSD since my Open Surgery 5 years ago. We find the CHS with the best reputation and then we trust what they say. Other than a few articles in print, the only other source of information is the Internet. I did some research before my surgery but every site I found all said the same thing: Surgery is the only option.

We have change that now to some extent, but not nearly enough. Still, the vast majority of new patents having surgery have no clue that an option exists. None. At least we've made a dent in this seemingly immovable wall, and time is on our side. At the very least Collegenase will eventually help put a stop to this madness because CHS seen to accept that as the alternative.

10/07/2008 15:13
TrevB 
10/07/2008 15:13
TrevB 

Re: no more surgery

Is there always an alternative to surgery though Randy H? I'm sure that I've read, on UK sites at least, that NA is not suitable for everyone. If your hand is becoming seriously disabled then what options are there?



Cambidgeshire, UK.

10/08/2008 15:16
Wolfgang

not registered

10/08/2008 15:16
Wolfgang

not registered

NA an advanced stage of Dupuytren's

Hi TrevB, NA can be useful even in advanced stages of Dupuytren's contracture: http://www.dupuytren-online.info/needle_aponeurotomy.html . I am not claiming that NA can replace surgery for each and everyone, sure not, but it might be worth a try for many.

Wolfgang

Quote:



Is there always an alternative to surgery though Randy H? I'm sure that I've read, on UK sites at least, that NA is not suitable for everyone. If your hand is becoming seriously disabled then what options are there?



Cambidgeshire, UK.


10/09/2008 07:27
Randy_H 
10/09/2008 07:27
Randy_H 

Re: no more surgery

Trevb

The range of NA effectiveness in regard to severity of deformity varies to some extent by practitioner. The more aggressive US experts such as Eaton and Denkler seem not to have met a hand they don't like. Sometimes more than one session may be required, but in most cases NA can yield the same or better correction than OS regardless of severity.

There is one exception. Scaring from previous Open Surgery seems to be the biggest obstacle. The skin must be playable for NA to work. Denkler, however, has pioneered a combo of minor Open Surgery with NA to get through scared skin and then perform NA

The main drawback to NA is not effectiveness. It's that it's recurrence rates higher than OS. However, most people can still avoid OS for the rest of their lives simply by having repeated NA. Beyond that, the best fire break we have is OS + skin graft.

So, the ladder of treatment goes from NA to Open Surgery to OS + graft. The next step up the ladder is only taken when the previous fails. Again, Eaton is of the opinion, along with his French counterparts, that NA will be sufficient for > 50% of new patients. It's about disease aggressiveness not progression.

10/22/2008 20:16
Luba M.

not registered

10/22/2008 20:16
Luba M.

not registered

Re: no more surgery

I am among the fortunate ones to have found this forum two weeks before my scheduled OS. I cancelled surgery, and had NA with Dr. Denkler in 2006. Unfortunately my DC returned after six months but I would (and probably will) have repeated NA's and maybe Xiaflex in the future before ever considering open surgery.

I went to a second opinion to another (very reputable) surgeon, who was honest enough to tell me that in my particular case OS would have a 90% recurrence and that he had high hopes for good results with Xiaflex when it comes out, he is totally opposed to all other non-surgical procedures (including NA and radiation).

OS might be the only solution for some, but all other possibilities should be explored...we are all grateful to this forum, all the wonderful doctors who are doing NA in this country and all the information we now have available on the internet that can help us make informed decisions.

10/22/2008 20:30
TrevB 
10/22/2008 20:30
TrevB 

Re: no more surgery

Quote:



he is totally opposed to all other non-surgical procedures (including radiation).



Why? I'm all for people having an opinion but what reason was given for this opposition?

Cambidgeshire, UK.

10/29/2008 20:01
Luba M.

not registered

10/29/2008 20:01
Luba M.

not registered

Re: no more surgery

because he says NA goes in blindly and can cause nerve damage...not true, since NA procedure relies on patient input and sensation during procedure...I just think most surgeons are just from the "old school" and cannot accept changes....besides with all the possible side effects of OS, including nerve damage, how can they say that? (I know someone that this happened to with OS).

10/29/2008 22:18
Randy_H 
10/29/2008 22:18
Randy_H 

Yes, TrevB, Why Indeed

The hard data is that as of July 2008 Eaton has done well over 2,700 NA procedures. His rate of nerve damage is much less than the national average with OS.

Eaton: "Infection, nerve injury or tendon injury are possible with any procedure, including NA. The risk of these specific problems with NA as performed at The Hand Center has been less than 0.2%. Statistically, these problems are over ten times more likely to occur with open surgery than with NA."

If Eaton had done just a few hundred NA's the above comment could be discounted. However, as he approaches 3,000 procedures his sample set is now highly statistically significant and irrefutable.

All the hard data supports NA as safe and effective. Nearly all CHS (Certified Hand Surgeons) now know of Eaton work. To date there has been *no* challenge coming from his fellow surgeons. None. However, the fact remains that 99% of practicing hand surgeons still oppose NA, exposing their trusting patients to needless risk. This absurd circumstance creates the most damaging and eye opening look at the medical profession I have ever witnessed. There are theories to explain the stubbornness of CHS, but no excuses.

Needless expensive and dangerous Open Surgery of the hand without a first attempt at NA must stop. I did not say Open Surgery must stop, just the presumptuous assertion that OS remains the only option.

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