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dupuytrens / ledderhose

Posted by andy h on 5/24/04 at 12:50 (151120)

Hi

About 4 years ago I had surgery in Canada on my ring finger to remove a Dupuytren's cord that had closed up my hand. During the surgery I was warned that this could jump into my other fingers, my feet (ledderhose) and penis (Peyronie's). The surgery in my left hand was successful and I regained full use of my hand.

I then developed cords in my left pinky and in both feet. The one in the left foot was the worst so the same surgeon (the one who operated on my left hand) advised surgery on August 7th for my left foot and November for my right foot ... a 3 month waiting period in between.

The August 7th surgery (2003) was painful and I decided not to proceed with the right foot due to the dubious results of the left foot surgery. It appears that I have another ridge in my left foot that is not unlike the ridge I felt before the surgery. It is not clear whether this is another cord or scar tissue from the surgery. Given my great concern for this surgical result in my left foot, I was able through a friend, to attend at the Mayo Clinic in Rochester, MN. I was able to visit with their Orthopaedic surgeons and the one I visited is the best orthopaedic surgeon in the world today.

The Mayo Clinic advised that I had cancer in my feet where the cells in the fascia of the skin are dividing too fast and creating this fibrous tissue (Ledderhose and plantar fibromitosis was mentioned) It is not a malignant cancer .. won't spread throughout the body ... this is the good news!!

The advice I received from the Mayo Clinic was as follows and hopefully of benefit to those reading these posts so they do not have to spend the money (approx $5,000 CDN)to get this information:

1.) Delay surgery for as long as possible. There is no guarantee that all the cells can be removed during surgery and if even one cell is missed the growing starts all over again. Delaying surgery also provides for the possibility that another cure can be discovered.
2.) The foot surgery is risky and bloody. One doctor there advised that he would have to be crippled and unable to walk before he would allow anyone to operate on his feet ... he had seen too many bad surgery results.
3.) If the pain becomes too great to bear, the Mayo Clinic will do the surgery. 90 day waiting period.
4.) Take Aleve as a pain killer. It is non-addictive based on studies. There are some cheaper substitutes that are also OK.
5.) I asked about injections and they will not perform them. The danger of injections is that they can destroy the fatty cells in the feet which serve as a cushion. Do not take injections ... they do not work.
6.) I asked about insertion of a mesh during the surgery to replace the missing fascia and they would not do that since it would be very risky to increase infection (another doctor I had recommended this).
7.) The only solution is surgery. There are 2 choices. One choice is to remove all the skin on the bottom of the foot and elminate the cancer from recurring. It is in the skin. The Mayo Clinic will not perform this surgery since it is very painful and has a long recovery period during which time the skin regrows. The second choice is a curved cut on the bottom of the foot through which the cord and cells are removed ... this is the only surgery they are willing to perform at the Mayo Clinic. This surgery has a 30% failure rate and the surgeon must be very skilled at removing ALL the cells. This is not something for a plastic surgeon or similar. The reason for failure is that one cell left behind can start dividing again and the fibrous tissue can then regrow.
8.) Inserts in the shoes are OK if they provide some remedy prior to the surgery. Lots of choices here but I have gone to a podiatrist and had the best inserts made ($400 - 500 for one pair) and you are probably better off buying these off the shelf. I actually found better results with these off-the- shelf ones than the customized ones where they use computers to measure the stress points on your feet. One Mayo Clinic doctor agreed with me by the way. He said ... use your head in these things ... if it makes sense then it probably is good sense.

That's what I can remember from my 2 visits there. I had every test possible and XRays etc. XRays do no show this condition and are a waste of money.

They advised that there has been some links of this disease to epilepsy, diabetes, alcoholism, genetic links to northern Europe, etc. ... but the bottom line is that there is nothing definitive at this point. By the way ... all the tests done at the Mayo did not reveal that I had any of the diseases often cited as being linked to this hideous disease. All the tests revealed that I was very healthy ... blood pressure was 110 / 70 and my only problem was that my HDL (Cholesterol) was too low and they advised exercise to bring it up (lol ... I bought an exercise bike).

I hope this information helps those searching for a cure / remedy to their feet problems.

Best of luck in your efforts.

Regards

Andy

Re: dupuytrens / ledderhose - Mayo Clinic advice

Dorothy on 5/24/04 at 16:38 (151132)

Andy ~ How kind and thoughtful of you to share all this informtion about this disease with us here. I was unfamiliar with it and I wish YOU were unfamiliar with it, too - meaning, I wish you did not have to deal with it. It must have been difficult information to receive, yet it seems there is some reassurance from having top-notch advice and advisors/physicians. There is often some comfort from simply knowing what is going on and having a plan in mind. Your doctors there sound like they have good heads on their shoulders and common sense - that's refreshing! I hope your pain is minimal now and in the future and I hope that a cure or new treatments are found before you must have them. In the meantime, we will give thanks that there is a Mayo Clinic with that expertise, that you were able to go there, and that there are options and maybe even more options to come as time passes. We will keep you in our prayers and hope that you will keep connected here as you need and want to - and we'll all keep in touch with our optimism and hope, when it's strong and when it flags a bit - ok?!

Re: dupuytrens / ledderhose - Mayo Clinic advice

Ed Davis, DPM on 5/24/04 at 18:57 (151155)

Andy:
I am a bit confused by your post. It sounds like you are describing plantar fibromatosis but mention cancer. What type of cancer? How was it diagnosed? Was a biopsy done? Plantar fibromatosis can look a bit like certain types of cancer but it is not. I am uncertain as to exactly what your diagnosis is.
Ed

Re: dupuytrens / ledderhose - Mayo Clinic advice

andy h on 5/24/04 at 19:00 (151156)

i don't have the diagnosis in writing yet but expect it shortly. this information is based on my memory of what was discussed and i thought to simply pass it along for what it might be worth. No biopsy was done but the words 'cancer' and non-malignant were mentioned based on what i can recall.

Regards

Andy

Re: dupuytrens / ledderhose - Mayo Clinic advice

Pauline on 5/25/04 at 14:38 (151220)

It's sounds like plantar fibromatosis cells can spread like cancer throughout the tissue where it occurs, but they are not malignant type cells that spread throughout the body causing life threating disease.

I've heard before that treating plantar fibromatosis is difficult at best and usually not very successful.

We've got to remember folks we're talking Mayo Clinic here and if I remember correctly from a past post the training provided there in foot and ankle was considered less than average even though the entire world thinks otherwise:*

My guess is they have probably hit the nail on the head and given Andy the best course of treatment for his condition. No frills, no magic, no promises, just the honest truth.

Thanks for sharing your treatment experience with us. I'm sure it will help others.

Re: dupuytrens / ledderhose - Mayo Clinic advice

Ed Davis, DPM on 5/25/04 at 16:14 (151234)

andy:

The word 'non-malignant' means no cancer.
Ed

Re: dupuytrens / ledderhose - Mayo Clinic advice

Ed Davis, DPM on 5/25/04 at 16:16 (151235)

Pauline:
It does sound like he is talking about plantar fibromatosis. Treatment of that is largely non-surgical and via injections of hyaluronidase and triamcinolone acetonide.
Ed

Re: dupuytrens / ledderhose - Mayo Clinic advice

Pauline on 5/25/04 at 21:17 (151256)

Dr. Ed,
From the looks of things Mayo doesn't agree with your form of treatment.
Here is # 5. from Andy's post.

I asked about injections and they will not perform them. The danger of injections is that they can destroy the fatty cells in the feet which serve as a cushion. Do not take injections ... they do not work

Re: dupuytrens / ledderhose - Mayo Clinic advice

Dr. Z on 5/25/04 at 22:11 (151257)

Pauline,
I think what they were saying was specific to her case. I do agree that too many injections and or improper place ment will or can cause fatty cell destruction but that is with any steriod injection given.
I still remember when my mother-in-law went to the Mayo Clinic and their opinion for a very serious disease was don't have surgery just take aspirin. I think if she had taken their advice she would be alive today.

Re: dupuytrens / ledderhose - Mayo Clinic advice

Ed Davis, DPM on 5/26/04 at 14:02 (151322)

Pauline:
They are simply wrong. Yes, they can destroy the fatty cells if the injectable material is placed in the fat pad --- that will occur if too much is used at once so there is leakage or if the injection is misdirected. If it is true plantar fibromatosis the injection is dircted directly at the center of each nodule -- there are no fat cells there.
Ed

Re: dupuytrens / ledderhose - Mayo Clinic advice

Dorothy on 5/26/04 at 15:49 (151329)

Dr. Z - Pardon me, but this post doesn't make sense to me. Are you saying that you were PLEASED with what Mayo Clinic told your mother-in-law? Or are you saying that you think they gave her bad advice?
Please write this as a clear statement.

Re: dupuytrens / ledderhose - Mayo Clinic advice

Dr. Z on 5/26/04 at 19:17 (151338)

I was very pleased with the Mayo Clinics advice. My point was that when it comes to very serious diseases they are tops. With feet. ?????

Re: dupuytrens / ledderhose - Mayo Clinic advice

Ed Davis, DPM on 5/27/04 at 20:40 (151423)

Yes. They have some big name people that have earned them a good reputation. Nevertheless, many if not most patients will not see those 'top guns' and when it comes to treatment of many 'routine' or more mundane things, if you will, such as PF they are not outstanding.
Ed

Re: dupuytrens / ledderhose - Mayo Clinic advice

Dorothy on 5/27/04 at 20:48 (151426)

I don't know about PF (where on earth IS it treated very successfully, really?) but Mayo Clinic's care and treatment plan extended my father-in-law's life with end-stage kidney disease from the predicted (at most) five years to a precious fifteen. Their care in that area was excellent.
Kidney disease, by the way, from a severe reaction to sulfa drugs...

Re: dupuytrens / ledderhose - Mayo Clinic advice

andy h on 5/31/04 at 22:17 (151663)

Hi folks

I am pleased that you are getting some information from my visits to the Mayo Clinic. I thought it would be of interest to you to know that I saw the best foot surgeon in the world at the Mayo Clinic. This is of course information provided to me by people at the Mayo Clinic. Perhaps they are a bit biased. (hehe) Nevertheless, I continue to search like all you folks out there for qualified advice on this hideous disease. I am planning to visit other specialist surgeons as well and will keep you posted.

I recently talked with a local man who has had 14 hand surgeries. He is travelling to Toronto Canada for some of these and recently had the skin graft approach where the palm is replaced by skin from the forearm. He is planning to have his other hand grafted in October due to the success of the first operation. I am planning to visit this surgeon in Toronto as well.

Fotunately I have access to funds to be able to do this and will keep you posted on what I find out.

Regards

Andy H

Re: dupuytrens / ledderhose - Mayo Clinic advice

David Adams on 6/05/04 at 20:24 (152132)

Here is a new link for Lederhose disease

http://health.groups.yahoo.com/group/plantarfibromatosis

Re: dupuytrens / ledderhose

Dan M on 12/08/04 at 10:53 (165353)

This is extremely useful information. My plastic surgeon was honest enough to refuse an operation on my foot sole for all the reasond you have quoted.

Re: dupuytrens / ledderhose - Mayo Clinic advice

Deb W on 3/01/05 at 02:16 (170191)

Wow, thanks Andy, for taking the time to share your experience. I was just diagnosed with a plantar fibroma, and you just saved me hours more research to find out the precise details of the disease and treatment that you relayed. You mentioned that it is considered a disease of the skin. I thought it was a disease of the plantar fascia, although I do know it can adhere to the skin. Can anyone clarify this? Is this disease ever known to progress into anything else? Interestingly, I am of Northern European descent, and understand this is a possible risk factor. Also, I recently read about cryosurgery as a remedy for this disease. Any info on current treatments, or those under experimentation, would be appreciated. I am in a lot of pain even thoug the fibroma I have is relatively small (about 1 cm).

Re: dupuytrens / ledderhose - Mayo Clinic advice

michelle r on 3/03/08 at 18:03 (244062)

i have been diagonosed with ledderhose diease and have seen a foot dr. but to no evail, i have til not had any relief. i tried foot pads as well as exercises...my mother also has dupuytrens and has had surgery on them as well.. they tell me that this runs in the family? well i guess what i am asking is there any specialist out there in florida that deals with ledderhose ?.... please i am hurting and the other night i fell flat on my facee tring to get up in the middle of the night cause my feet hurt so bad ....please let me know thanks

Re: dupuytrens / ledderhose - Mayo Clinic advice

Gary C on 3/14/08 at 09:41 (244540)

Andy, I have this disease in both of my hands, and it is getting progressively worse. You did not state whether or not the dupuytrens was an issue in your penis?.

Should I consider having surgery on my hands? Also, do you think that just any Ortho doc would know about dupuytrens?

Thank you so much for the information that you have posted concerning this disease.

Sincerely,
Gary C

Re: dupuytrens / ledderhose - Mayo Clinic advice

Judy on 6/30/08 at 10:35 (248128)

Hi Andy,

I live in Toronto and would love to know the name of the surgeon that you plan to see as I have Dupuytren Disease and am searching for the best doctor in the area.

Thanks
Judy

Re: dupuytrens / ledderhose - Mayo Clinic advice

Jim S. on 12/18/08 at 21:56 (253278)

my name is Jim S aged 63 living in Calgary Canada.I had an operation for Dupuytrens in the right hand 2001.The condition caused my entire hand to assume an inverted v position at approx 45degree angle.The operation took approx 3.5 hours as the middle finger was affected.In 2008 i had another operation for a similar condition on the left hand which lasted approx 1.5 hours.The right hand required approx 4 months of physio.The left hand although also having adopted an inverted v positiion was not considered as serious as no fingers were involved.I have to say i do not appear to have the same 'gripping strength' in either hand although no pain encountered. However i am now encountering a swelling on the sole of the right foot which is a little painfulat times.No precise diagnosis at this time but i am certain it is Lederhose as the Doctors previously made a determination i had a form of 'Schlerosis of the liver' cause unknown but believed to be result of faulty immune system from birth.I understand my ancestors descended from the Vikings.

Re: dupuytrens / ledderhose - Mayo Clinic advice

NPerkins on 2/23/09 at 22:15 (255382)

I know that this is an old post, but in the event that people are still reading it...I want to share my experience with plantar fibromatosis. There was a lot of discussion about injections. While this has been an experimental treatment in the past to help reduce tumor size, it is not recommended. It is felt that the collagen defect that causes these tumors can be initiated by trauma. Injections into these tumors is exactly that...trauma. The result of these injections is only temporary and not worth the risk of encouraging further growth.
Shortly after a car accident, I noticed a mass in the arch of my right foot. I monitored it for several months and eventually went to a podiatrist. He said that it was 'most likely' not cancer but the only way to know forsure was to remove the tumor. Yes, he mentioned the risks of regrowth...blah, blah, blah. BUT after the word 'cancer' I didn't hear anything else. So, I had the tumor removed. Eventually 3 grew back in its place. Although this doctor was a great doctor and very knowledgable about my rare condition, I thought I would seek the opinion of an orthopedic doctor. NOT a good idea. The recommendation was a plantar fasciectomy. I had the fascia removed. I never anticipated the recovery. I was very sick and very weak during my long recovery. The orthopedic doctor seemed to have no idea how to respond to my situation. I had very poor follow up. After the sutures were removed, the wound opened up. There was no concern expressed about this...follow up in 2 weeks....?? So, a physician I worked with helped me pack and debride my foot for months. The ortho doctor ordered PT. PT wouldn't work with me because I had this necrotic gaping wound on my foot. Makes sense. Looking back, I wouldve requested a wound vac, packing the wound with a debriding agent...something. Anyway, after a year and a half..the wound closed.
A few months later a tumor presented in the left foot. For this I tried a Verapamil compound. This is a fairly new treatment and very expensive. I am unsure if this works on newly formed tumors, but I have not noticed a difference personally. I did invest in some insoles made at the podiatrist office and changed jobs. Working a little less on my feet has made a big difference. The unfortunate thing currently is that I now have fibrous deposits on my hands as well. I hope that new treatments become available soon. My advice? Put off surgery until you are literally dragging your feet through the door at the end of the day! I may have to resort to this at some point, but I am waiting it out for the time being.

Re: dupuytrens / ledderhose - Mayo Clinic advice

Anne BC on 6/27/09 at 02:08 (258421)

Hi. Any updates? My son is 24 and has both ledderhose and dupuytren's--just saw a doc at Stanford--seems like there's still not much available in terms of treatment. Thanks for your post and wish you well, Anne

Re: dupuytrens / ledderhose - Mayo Clinic advice

Joyce on 10/15/09 at 15:54 (261310)

Hello Andy,
It is now 2009 and I have come across your posts. Thank you for all your information. Are you (or anyone else) aware of anything new in treatment of ledderhose since your original posts, 5 years ago? I am just starting down this road and am wondering if 'do nothing for the time being' is still the best course of action? I, too, am from Canada.
Good wishes, Joyce