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09/26/2014 01:40
kimmiehg 
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09/26/2014 01:40
kimmiehg
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newbie
Hello everyone, I'm new to the site and just want to tell a little about myself and family. Back in the 1970's my mom started getting the nodes in her hands. In the 1980's she had an operation on her hands and it didn't help at all. If anything it made it worse. She has it in both hands and she also has Garrods pads. This has effected the ring and pinky fingers of both hands. My sister and our moms cousin have the knots in their feet. About 3 years ago I noticed my 3rd finger right hand was getting a "callous" on the knuckle. My finger is not bent to the point that I cant straighten it yet. I have noticed the left ring finger is starting to get a pad on the knuckle also. I've read quite a few articles about Garrods and most of it says there is no pain with it. Not true in my case. I always have to be different. Mine hurts constantly. I know my moms hands hurt her very bad and I think back to when I had my youngest child and I reached out and mom put her hand in mine and I squeezed the devil out of it. I felt so bad afterwards because I knew they hurt her and that I had added to that. Sorry sometimes I start talking and don't know when to stop. With what I've read about Dupuytrens, Garrods, & Ledderhose, they are not definite on whether it is hereditary or not. It seems to run in our family. I haven't gotten up the nerve to ask my brothers if Peyronies has effected them or not. My mom also always called this "DUTCH DECENDANTS DISEASE." Has anyone else heard this name before? If anyone has any info or an opinion about anything I have written, I would very much appreciate it...THANKS, KIM
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09/26/2014 02:59
Tusk 
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09/26/2014 02:59
Tusk
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Re: newbie
Hi Kim, welcome to the board. These diseases are clearly hereditary though sometimes they may skip a generation or two. Some folks have DD and don't know anyone else in their family with it. There can be several reasons for that (might be mild cases, some people don't get it until their 70's or later, etc.) Others folks have many family members that are also afflicted.
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09/26/2014 06:33
spanishbuddha  Administrator
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09/26/2014 06:33
spanishbuddha Administrator
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Re: newbie
Welcome Kim,
Explore the whole of the website, and not just the forum, answers to most of your questions are there.
Best wishes
SB
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03/25/2015 10:04
massatab
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03/25/2015 10:04
massatab
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Re: newbie
Hello Kim,
Nice to meet you here ! I'm also a newbie.
I'm very sorry to hear about your family. You should search for massage or physical therapy. Hope these informations will help your family members. 
Regards,
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04/26/2015 14:23
sportsmeddoc
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04/26/2015 14:23
sportsmeddoc
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Re: newbie
I am newbie also and an Orthopedic surgeon- early 50's who is now developing Garrod's nodes. Luckily I know a few world renowned hand docs so I have had the most up to date info BUT still it is a very poorly researched area. Developed plantar nodules a decade ago- they stopped growing (1 in each foot) after I used a blue laser light a friend of mine sent me from Denmark (not legal in US). Don't have it anymore. 6 months ago developed first garrisoned and now a few more popping up- Glad to know this forum exists!!
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04/27/2015 04:30
wach Administrator
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04/27/2015 04:30
wach Administrator
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Garrods pads
Welcome to the Forum! Why not try the laser for your Garrod's pads? There doesn't seem to be an established therapy for Garrdod's pads http://www.dupuytren-online.info/knuckle_pads.html. If you try laser, please let uns know the outcome.
Wolfgang
sportsmeddoc:
I am newbie also and an Orthopedic surgeon- early 50's who is now developing Garrod's nodes. Luckily I know a few world renowned hand docs so I have had the most up to date info BUT still it is a very poorly researched area. Developed plantar nodules a decade ago- they stopped growing (1 in each foot) after I used a blue laser light a friend of mine sent me from Denmark (not legal in US). Don't have it anymore. 6 months ago developed first garrisoned and now a few more popping up- Glad to know this forum exists!!
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04/28/2015 05:28
Cherise
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04/28/2015 05:28
Cherise
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Re: newbie
sportsmeddoc:
I am newbie also and an Orthopedic surgeon- early 50's who is now developing Garrod's nodes. Luckily I know a few world renowned hand docs so I have had the most up to date info BUT still it is a very poorly researched area. Developed plantar nodules a decade ago- they stopped growing (1 in each foot) after I used a blue laser light a friend of mine sent me from Denmark (not legal in US). Don't have it anymore. 6 months ago developed first garrisoned and now a few more popping up- Glad to know this forum exists!!
Hi ,
Having hand arthritis plus DC, GN is a challenge for treatments.
In my case every treatment made my DC worse. After each treatment my hand flares was called the Keobner effect!
I tried surgery first by a well known hand surgeon on one pinky slightly curved & experienced a major flare. The surgeon said that happens sometimes with DC left me on my own with no referrals. The flare made all 4 fingers curve and the pinky that had the surgery, ended up at a 130' closed to Palm position.
Later tried NA & that made all the nodules in my palm bigger and the pinky didn't budge. Some here have had good results with NA, RT. and steroid injections. As usual timing is the Holy Grail depending on what stage your hand is in. This factor has a better outcome with DC Specialists knowing what treatment is best for each stage. Yet everyone reacts differently. It's still like betting on a horse race at the track.
This is an autoimmune disease closely related to others which involve the INTERLUKEN ....IL-17 &. IL-23 Pathways. Sometimes TNF factor comes into play inhibiting the body from sending out antibodies to attack certain areas of the body, thereby inhibiting the build up of collagen. As in this case of DC in this referral.
Then tried a bio drug called Xiaflex very painful. Side effects made the lymph nodes in my arm pit extremely sore and elbow for weeks. It will be a long time before I will consider it on another finger. It was the only shot left to open my finger. That I would consider.
The upside to the bio drug was a enzyme that attacks the collagen that causes the fingers to contract toward the palm. It also eradicated all the scar tissue made up of collagen from the surgery. That was a big release. Two weeks after 3 injections in one finger the doc manipulated the pinky from a 130'- 80' which finally opened the pinky finger.
The downside, I have to wear a splint on the pinky for a year at nite and the other 3 fingers are continuing to contract slowly from the flare from the original surgery which were never contracting from the beginning. I also was injected with cortisone which shrank the enlarged nodules in the palm from the flare. Helped with the palm pain, the nodules have not returned to the original size since the cortisone injections. The DeRoyal LMB spring splint is so easy and effective on each finger. Better than a hard shell splint.
This whole process was over a 3 year period. I have learned to just leave it alone. Now that my pinky is open. My GP has DC and he has decided to leave it alone and he continues to monitor the disease. He has nodules yet no contracture or thickened tendons started.
You may check with the Xiaflex web site for trained surgeons in your area there is a zip code system to locate a trained plastic surgeon in your area . Also for info on desolving the Garrod's nodes.The bio drug Xiaflex is currently in a study to remove scar tissue from burn victims and more. It literally dissolved all the scar tissue from the surgery on my pinky which was quite thick and long thru to the palm.
Since you have dorsal Dupuytren nodules, this may be another alternative treatment to consider. There are many treatments listed on this forum also describing what stage works best with each treatment process. Sometimes it's best to leave things be!
Hope things work out for you. This is a difficult disease to manage.
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