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I need more information about Dupuytren's Contracture
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09/14/2007 13:24
stephie200 
09/14/2007 13:24
stephie200 
I need more information about Dupuytren's Contracture

Hi everyone! My name is Stephanie, I am a health educator currently conducting a research project on Dupuytren’s Contracture. I would love to get a better understanding of what it is like to live with DC and how it affects your daily life. What kind of limitations, if any, do you experience? What type of emotions, if any, do you experience regarding the appearance of your hand(s)? Where do look for information and what type of information are you looking for? How were you diagnosed? What was the process like? What type of conversations do you have with your doctor? Have you heard of the new drug Collagenase that is currently in trials?

Any information you can provide about your experience with DC is greatly appreciated. Thank you so much for your time!
Stephanie

09/14/2007 14:19
Wolfgang

not registered

09/14/2007 14:19
Wolfgang

not registered

Re: I need more information about Dupuytren's Contracture

Who do you work for? Auxilium? Please disclose.

For questions and emotions: how about reading posts in this forum? There are many, many questions and emotions!

Wolfgang

09/14/2007 17:19
Sandie1141 
09/14/2007 17:19
Sandie1141 
Re: I need more information about Dupuytren's Contracture

Hi Stephie, I'll be more than happy to help you out. My husband's father passed away in January of 2000. The couple of times we saw him before he passed, he showed us his fingers (ring finger and little finger) that were pulled to his palm and he couldn't straighten out. He never went to see a doctor. The men in my husband's family are know to be tough and it takes a lot of pain for them to see a doctor. Since he was in no pain, there was no reason to see a doctor.

My husband started getting the nodules in 1993. He went to the doctor for a vasectomy and while there asked the doctor about the lumps in his palm. The doctor's response was " we came from apes and we all walked on our knuckles at one time". Not only was it a stupid diagnosis, but it planted a seed to my husband that it wasn't a big deal.

His fingers started curling over in 2002. At about that time I came across a newsletter from the Mayo clinic which described the condition and gave me a name for it. Dupuytren's.

My husband is a project manager for a large office furniture company. He has always been very strong. In fact, his forearms look just like Popeye's. Even though he wasn't suppose to do the physical work, like using a drill or helping to carry a 1000 lb granite table, he would jump in and do it, just to make sure it was done right.

After the contracture started, it moved quickly. My husband never shared his feelings with me at the time, but since having the NA he has shared a lot with me. His biggest embarassment was the inability of shaking hands. If he did shake hands other men were shocked that his had such a "sissy" handshake, since he would shake with only his first two fingers and thumb. We live in Colorado with a lot of cold and snow in the winter. The last year before the NA he couldn't put a glove on that hand. He couldn't grasp anything, ie, open a jar, shovel snow, lift, grip, etc. What bothered me is that when we hold hands while watching movies or whatever, he would have to minipulate his fingers to fit with mine.

Since I had a name for the condition, we went on the internet and looked up whatever we could find. Being able to see others with the condition helped to convince my husband to seek help. He went to our family doctor, who referred us to a hand surgeon. Before going through surgery, I researched alternative treatments. That is how I discovered NA and all the wonderful people in this forum.

My husband had NA the end of June and is very happy with the results. The nodules are gone and his fingers are probable 90%. Unfortunately, he waited too long to get a 100% result. He wears splints as much as possible. He says that it makes his fingers feel better. He is going to give it a few months, then if Dr. Kline thinks that another NA procedure will be helpful, my husband says he will absolutely do it again.

I hope this answered some of you questions. Sandie

09/14/2007 18:29
Randy_H 
09/14/2007 18:29
Randy_H 

Re: I need more information about Dupuytren's Contracture

The single biggest problem with having this disease is the misinformation regarding treatment within the medical community. 99% of patients are told that full Open Surgery (OS) is their *only* option. This causes many to delay treatment. Auxilium, having picked up the torch from BioSpecifics is betting millions of $$$$ that Dups patients and their surgeons will welcome a noninvasive treatment. They are betting that many feel that OS is something to be avoided.

Meanwhile a safe and effective noninvasive treatment is *already* available, but "NA" has largely been ignored by the medical community. The facts about NA were presented to the annual meeting of the American Society for Surgery of the Hand last year. Still, 99% of patients are directed only to he knife. This is a sad commentary on the head-in-sand rigidity of most Certified Hand Surgeons.

While we all look favorably to adding Collegenase to our arsenal of options, NA will be far less expensive. This will not matter if the majority of CHS favor Collegenase, which in all likelihood they will. NA will probably become overshadowed by the 99% of patients told to go in that direction just as they currently are herded like cattle toward OS. In the mean time at least 1% of patients have learned about NA over the Internet (like myself) and been able to avoid OS.

09/14/2007 19:29
marhill 
09/14/2007 19:29
marhill 
Re: I need more information about Dupuytren's Contracture

Randy:

I have been very interested in NA since learning about it (over the internet). My approach has been to figure out for myself what is that best treatment, then to find a doctor who does that.

It seems that you are in California. Which part? What doctor did your NA?

Why do you say that NA is cheaper than AA4500 will be?

My contracture is in the PIP joint--what do you know about the relative effectiveness of various treatments on that joint?

Thanks.

Marian

09/16/2007 02:54
Mike S

not registered

09/16/2007 02:54
Mike S

not registered

Re: I need more information about Dupuytren's Contracture

Marian,

PIP contracture is by all accounts more difficult to work with than MCP contracture. That said, after much research, and with much trepidation, I took the plunge and had NA done on my 90-95 degree small finger PIP almost one year ago by Dr. Denkler in Larkspur (SF area) CA. PIP corrected to about 15-20 degrees which is hardly noticeable to most and in most situations. One of the best decisions I ever made. UCLA also has a Dr. Benhaim who perfroms NA as well.

Mike S.

09/16/2007 03:04
Sandie1141 
09/16/2007 03:04
Sandie1141 
Re: I need more information about Dupuytren's Contracture

Mike, Are you wearing splints? My husband is suppose to wear them for a few months to help straighten the fingers. He says that his fingers feel a lot better because of the splints. He has been off for a few days and hasn't taken the time to wear them. I noticed tonight his finger was bothering him a bit. Are you experiencing the same? Sandie

09/16/2007 15:32
marhill 
09/16/2007 15:32
marhill 
Re: I need more information about Dupuytren's Contracture

Thanks, Mike.

By reading a posting in another thread, I see that Dr. Denkler is also a supporter of Xiaflex (AA4500) so would be a good one to tell me if I should think about doing something now or waiting . . . and for which fingers. (I have affected fingers on both hands, with varying degrees of bend--all at the PIP joint.) I am getting the impression that having NA now doesn't preclude using Xiaflex later, if necessary.

Does anyone know if anyone at the Hand Clinic at Stanford does NA? It would be much more convenient for me than Larkspur.

Marian

09/17/2007 02:31
dianeS

not registered

09/17/2007 02:31
dianeS

not registered

Re: I need more information about Dupuytren's Contracture

Marian
I don't know if Stanford has NA, but you won't regret going to Larkspur to see Denkler. He has performed a large number of NA procedures, second only to Eaton in number. He can tell you whether to wait for Xialaflex, but wtih pip joints its often better to get after them because often you can only remove a percentage of the bend. Dr. D fixed my pinkie which was bending again within a year after traditional surgery. He also made an adjustment to the skin with a small incision and removed some dups tissue that was hiding behind the nerve. Really went the extra mile. excellent result that is still holding up 18 months later. He is hopeful I can hold on to this result until Xilaflex is available because it will disolve the nasty tissue hopefully resulting in less chance of return. Those of us who get rapid recurrance have great hopes for Xialaflex. But I would do NA again in a New York minute. I am an artist and need every one of my fingers!

Email or snail mail some pictures of your hands to Denkler and he will comment on whether he can help you. Thats what I did and his response proved accurate. You might email any questions you have as he is willing to answer.

09/17/2007 06:14
Randy_H 
09/17/2007 06:14
Randy_H 

Re: I need more information about Dupuytren's Contracture

Collegenase, AKA Xiaflex, will cost more than NA because with NA all you are paying for is the MD's time. With Xiaflex treatment you have to also pay for the drug which will cost millions to pass FDA approval. The idea is that issuance companies will pay for it so the cost to many will be irrelevant. For some however, NA will continue to be the way to go in many cases.

It will depend on your insurance and the exact problem. MCP with long and slow Dups growth seems a sure bet for NA cost effectiveness.

marhill,

If > 25 degrees, the sooner the better. Collegenase is at least 2 years away. Get this done.

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