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Treatments/Results/Doctors /HELP
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03/10/2000 23:53
Todd Larson

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03/10/2000 23:53
Todd Larson

not registered

Treatments/Results/Doctors /HELP

I am a 37 year old white male with Ledderhose Disease in both my feet. I have had this condition for over 20 years without too much pain or discomfort. A little over a year ago I had to have these tumors removed from my feet as they had progressed and developed to a state where I had difficulty in walking and standing for any length of time. This I would attribute to the job I held.(working on concrete floors for 10-12 hrs a day 55-60 hrs a week for a year and a half.) They removed these tumors (deep) from my feet and within 2 months they had re-established themselves. They are now bigger and more painful than ever. 1 in the left foot. 4 in the right. Sizes ranging from pea size to nickel and dimes. It has affected my employment and the type of work that I am able to do. Surgery to remove them does not look like an option as they are so aggresive in returning. Skin grafts also offer no guarantees and radiation treatment might be the way I will have to go. HAS ANYONE OUT THERE HAD RADIATION TREATMENT AND WHAT WERE YOUR RESULTS? This condition has changed my life dramatically both financially and physically. ANY INFORMATION ON PERSONAL STORIES WEB SITES TO VISIT, DOCTORS, ETC..WOULD BE GREATLY APPRECIATED. I would like my old active self back and be able to run around with my kids and enjoy my life once again. THANK YOU FOR ANY HELP AND INFORMATION YOU CAN SHARE!

06/13/2000 23:08
D Beason

not registered

06/13/2000 23:08
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 Very Much!

12/04/2000 23:59
Mary 
12/04/2000 23:59
Mary 
Recurring Ledderhose

My first tumor appeared on the bottom of my right foot when I was five years old. A family doctor tried to remove it in his office when I was eleven years old (1967). Very ouch! He had no idea. It immediately reoccurred just like you said, with several massive tumors. I was in the marching band in High School, and I had to have surgery while I was in the 10th grade (1973)to remove the thing. This time, my mother took me to an orthopedic surgeon who knew what he was doing, and he removed the entire plantar facia, with no reoccurance.

In 1996, overnight another tumor appeared on my left foot. It has continued to grow and is very painful, but it normally does not cause pain when walking, and I am reluctant to have surgery again unless i can find an Ortho MD I trust. The first one I visited said "They can come back, you know" which led me to believe that some of HIS patients had reoccurances. If the surgeon is not experienced with this tumor, it will reoccur. Once I find a MD I trust, I will then have to weigh out the amount of time I will be out of work with the benefits. I am a civil service manager for the Air Force,with 300 folks in my realm. My absences do not come easy.

01/25/2001 23:03
sara

not registered

01/25/2001 23:03
sara

not registered

plantar fibroma, both feet

My father has had four surgeries, two on his hands, two on both feet. My nodules showed up on each foot within one year of each other. They have become painful when walking, as they are on the instep of each feet and seem to be growing with use. I live in Northwest Indiana and I am seeking a physician with knowledge of this disease, here or in the chicagoland area, any help would be appreciated. I have checked several hospitals and doctors but no info as yet. Has anyone had success with a non-surgical procedure?? Has Collagense been successful. thanks for the help. My sister had l foot surgery but it has grown back.

09/05/2001 23:31
Chris Stamos

not registered

09/05/2001 23:31
Chris Stamos

not registered

Plantar Fibroma

I have had a painful fibroma in the plantar region of my righ foot for about three years now. I took some cortizone shot therapy which shrunk it and reduced the pain for a while, but it came back. I am not willing to risk surgery given the reoccurance rates as well as the possible side-effects.

But now I am trying Chinese medicine -- a combination of accupuncture, massage (very painful, by the way), and herbal raps. So far so good. They also recommend high quality insoles and soft shoes.

I live in Taiwan so that helps in terms of making sure your Chinese medicine doctor is legit (and its so cheap here for treatments... approx. 3$ US per visit!)-- I will report back if they clear it up. My doctors are very confident that they can not only reduce the pain but possibly even cure it. So my advice is to try everything, including 'non traditional' approaches before going under the knife. I use quotes on 'non traditional' because, as my doctors says, the Chinese have been treating and curing this problem for quite a while longer than our Western doctors... I will check back.
--Chris Stamos

10/01/2001 23:03
Sherry

not registered

10/01/2001 23:03
Sherry

not registered

Chinese medicine

Chris,

I read with interest your experiment with Chinese medicine treatment, since I have also lived in Taiwan for many years. I am in the States now, and will eventually move to mainland China. So if you have success with this, I am very interested.

Sherry

10/25/2001 23:47
Michael K. Rambo

not registered

10/25/2001 23:47
Michael K. Rambo

not registered

Air Force Pilot with PF

Hello everyone! I must admit, I was a little suprised to find a forum specifically dedicated to this topic. I have had fibromic tumors on both of my feet for several years now (I'm 27). I am also flat-footed, so I occasionally have pain as a result of walking for long periods. I'm wondering if anyone has had success with custom orthotics to help remove some of the pressure and pain. Surgical excision is not an option for me right now, given my job as an Air Force pilot. Also, I think that if I were to take the weight off of the tumors, I would be much more comfortable. If anyone has any advice, please respond by email.

THANKS!
Capt. Michael K. Rambo

11/10/2001 23:26
Marcia 
11/10/2001 23:26
Marcia 
Plantar Fibromatosis

I have just been diagnosed with this disease. I have one nodule in my left arch and two in my right. So far the podiatrist has injected the left one with cortizone. Big ouch. Seemed to make it hurt more. I am trying accupuncture, but would like to try orthotics. Anyone have any experience with them? I'm really fighting surgery. It doesn't sound like a very good idea from what I've read. In the short term I am ok financially. But with 2 kids in college I'd like to help my husband with the finances. Our insurance doesn't cover accupuncture of course. I am a 44 year old woman.

12/01/2001 23:00
Matt

not registered

12/01/2001 23:00
Matt

not registered

Orthotics

I am 41 yrs old and have ledderhose nodules in the arch area of both feet. Both are about grape sized. They take turns torturing me. This week, it is the one on my right foot... feels like I stepped on a nail and I am not doing a thing, just sitting here!

I had a dupuytrens contracture removed from my left hand this past August... feel a few more on the way deep in my hand.

I went to see a foot surgeon last spring with the intent of scheduling surgery to get the damn things off my feet. I ended up walking out of his office with $200 orthotics and an admonishion to stop drinking alcohol and to wait as long as I could bear it because in more than half the cases of surgery "they come back with a vengeance".

I have come to believe the orthotics make a big difference. By supporting my foot, they seem to minimize the aggravation of the nodules. I often swap the orthotics between various boots and shoes, and sometimes I forget where they are. In these instances, after a day without the orthotics, my feet do feel worse.

There is a discussion group on ledderhose that had a thread about massage sandals if you are interested in trying those...

http://groups.yahoo.com/group/ledderhose_disease/messages

My orthotics were customized to my feet... I had to walk across a sensor pad connected to a laptop. It made a pretty cool image of weight distribution on my foot as I walked.

Orthotics are worth a try if you are hurting and don't have any alternatives.

Matt

12/04/2001 23:43
Cheryl Adams

not registered

12/04/2001 23:43
Cheryl Adams

not registered

Ledderhose

I am currently being treated by an acupunturist for the painful knot in my arches. I am taking herbs twice a day that we hope will shrink the growths like the cortisone shot did for a while. I am also using hot cod liver oil wraps for an hour a day. They have helped relieve the pain but not the size. I am also trying the massage sandals which I saw on the yahoo group about Ledderhose. I am very much interested in controlling this without shots or surgery but am justa a few months into my search.

I hope people like Chris who is trying herbs and massage in Taiwan will continue to keep us posted if anything noninvasive actually gets results.

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Results   Disease   experience   complications   plantarfibromatosis   Fibromatosis   orthotics   fibromatosis-acupuncture-it   Surgery   plantar   nodules   cryotherapy   painful   Ledderhose—Indication   Ledderhose   treatment   podiatrist   radiation   surgeon   anti-inflammatories