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DC
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05/16/2000 23:17
kathy

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05/16/2000 23:17
kathy

not registered

DC

On February 8th I had surgery on my left hand correcting the two contractures and removing the nodules. It is almost the end of May and my left hand is still swollen and not at 100% use. Also, my pinky could not be straightened due to the degree of the contracture. I have surgery scheduled for my right hand on June 13th and I am talking to a lot of people who have DC. (I actually thought it was just "me".) Web friends are suggesting I go to Paris and have a needle procedure. I know nothing about the procedure and I am scared. However, I do not like what my left hand looks like. I have pictures I can e-mail to anyone who would like to see my hands.

I look forward to hearing from someone who may be in a situation like mine and I am open to anyone's opinion.

Thanks - kathyh7@hotmail.com

05/16/2000 23:34
Jim H

not registered

05/16/2000 23:34
Jim H

not registered

Surgery versus Needle

I had surgery on one hand about a year and a half ago.

Don't be depressed by the way your hand looks today. Full recovery takes a year - they told me that right up front, and they were right.

My surgery was reasonably successfull and I got back darn near 100% of normal motion. The affected fingers are still a bit stiff and probably always will be, but it's a good tradeoff.

The swelling will subside, steadily but very gradually. Do those exercises! They make a big difference in the outcome.

I know about the needle procedure, but what I haven't seen are the statistics for recurrence. The surgeon told me that it was very important to remove all the bad tissue to prevent recurrence.

05/17/2000 23:00
Kathy 
05/17/2000 23:00
Kathy 
DC

Jim H.,
Thank you for you ropinion I think we fee the same way. I received an e-mail from a women who has almost the same problem as I do. Stay in touch Jim.

05/17/2000 23:02
Jim H

not registered

05/17/2000 23:02
Jim H

not registered

needle procedure

Please post a message if you decide to try the needle procedure. I have to suspect that the rate of recurrence is very high. On the other hand, it might be safely repeatable as often as necessary, without the side effects and long recovery period of surgery. The problem is, the needle procedure seems to be done only by one doctor, in France. The obvious question is, why?


05/18/2000 23:03
Kathyh7@hotmail.com

not registered

05/18/2000 23:03
Kathyh7@hotmail.com

not registered

Needle Procedure

Jim,

I sent a picture of my right hand (via the internet)to the doctor in France and I just heard today that the needle procedure would not be a good idea. The doctor would need to perform the procedure many times. Surgery is set for June 13th and I am content. I also have great support from my therapist. A person on the web told me that the needle procedure may be in the US in about 6 months and my therapist is going to a seminiar on the procedure. You never did tell me how DC has affected your hands.




05/19/2000 23:42
Jim H

not registered

05/19/2000 23:42
Jim H

not registered

needle procedure

Thanks for that information. It looks like we'll have more options in the future.

I had surgery for a contracture in my right palm that was pulling in the 3rd and 4th fingers - it was getting fairly advanced - and to remove a knuckle pad on the 2nd finger of the same hand.

Both hands are functioning ok right now, but I have some other spots where contractures have begun: PIP joints of 1st and 4th fingers of left hand, base of thumb on right hand. I also have knuckle pads on the 3rd and 4th fingers of the right hand (the fingers that were pulled in by the contracture). These are small problems and aren't causing me any difficulty, but I have to keep stretching the affected fingers to maintain range of motion.

I also have a small lump in the arch of my left foot, and this worries me the most because I've read that it can become quite disabling.

It all depends on how the condition progresses, which seems to be unpredictable. You might be interested to know that the first sign for me was a large knuckle pad on the 1st finger, right hand - which went away after a few years. My mother claims she had a lump in her palm, just like mine, which also disappeared in time. I've heard similar stories, although my surgeon and therapist seemed surprised when I told them mine.

How about you?

05/20/2000 23:19
Kathyh7@hotmail.com

not registered

05/20/2000 23:19
Kathyh7@hotmail.com

not registered

DC

My first sign was in 1994 when my palms formed what I now know as nodules. I went to my primary and he told me to hold my hands like I was praying and push. Well, it only got worse and when I saw two other doctors they had no help or advise. My primary finally told me in December of 1999 that it was DC.

It is interesting that your mother had a lump in her palm. I have heard and read that DC is hereditary. No one but "me" has the problem and there are 8 children in my family. I suspect it may have skiped a generation.

I also have a lump on my foot, right in the arch. I found a special brand of shoes that are comfortable and of course I no longer wear heels. My surgeon told me not to worry about it because the nodule on my foot may never pull my toes down.

Fill me in on what knuckle pads are - OK?

05/20/2000 23:44
Jim H

not registered

05/20/2000 23:44
Jim H

not registered

DC

My GP recognized the contracture as DC, although he had to look up the name. To be fair, it's considered a "rare" disease by some criteria. He referred me to a hand surgeon who told me a little about it, but most of what I know I learned from various Web sites.

A knuckle pad is just a hard lump on the top of a knuckle. They are commonly associated with DC. They're ugly, but seem to be harmless.

From what I've read, DC is strongly hereditary, but I don't have enough living relatives to recontstruct the history in my family.

The nodule on the foot is known as "plantar fibromatosis" or Ledderhose disease. If if gets large enough and/or becomes painful, it can be a real disablilty, but I can't find any statistics on how likely this is. The rate and speed of recurrence after surgery is apparently very high.

The collagenase injection treatment seems really encouraging. I know Biospecifics has it somewhere in the clinical trial and approval process but there hasn't been any news for quite a while. Does your surgeon know about it, and if so does he have any comment?

05/20/2000 23:40
Kathyh7@hotmail.com

not registered

05/20/2000 23:40
Kathyh7@hotmail.com

not registered

DC

My therapist is aware of the collagenase injection . She plans to attend a seminar on the injection. I see a surgeon in two weeks for my pre-op visit and I plan to discuss the injections with him. I really feel the injection will be the answer to future problems. My doctor said it never will go away.

I also could not get a good family history on DC. My grandparents died before I was born and I have three Aunts and have not seen them in 30 years.

Stay in touch!

06/13/2000 23:58
D Beason

not registered

06/13/2000 23:58
D Beason

not registered

Non-Surgical Cure ?

Hope you can help!

I’m new to the Dupuytren's Forum, but not to Dupuytren's that showed up about 10 years ago. Had surgery on my left hand 2 years ago but Dupuytren's is now back in the L hand worse than ever. So I know from experience surgery is only a stopgap.

I know about the French Needle so I am very interested in info about non-surgical cures. Question:

1) Are there any legit non-surgical cures? Who and where?
2) Is the SUNY Stony Brook cure near going public? Any info on the status?
3) Are there any doctors (or anyone else) doing injections? Who and where?

Please help with any info you have. I don’t want any more surgery!

Thanks.

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straightened   recontstruct   contractures   procedure   surgeon   Non-Surgical   unpredictable   injection   contracture   recurrence   knuckle   grandparents   Biospecifics   disappeared   fingers   fibromatosis   surgery   procedure--little   therapist   collagenase