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Ledderhose / Dupuytren's - Mayo Clinic advice

Posted by andyh on 1/16/05 at 16:35 (167363)


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,2003 for my left foot
November 2003 for my right foot ... a 3 month waiting period in

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. (see photos for a picture of my foot after
surgery) 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 the mitosis but great if
you want to see your foot bones, etc.

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).

Other you need to have a referral from the Mayo to get to see the
orthopaedic surgeons. The longest waiting list at the Mayo Clinic is
for this specialty.

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

Best of luck in your efforts. Here are a couple of articles to read.





Re: Ledderhose / Dupuytren's - Mayo Clinic advice

AmyM on 1/18/05 at 14:29 (167480)

Hi, lots of information and really well explained thanks! I hope your Dupuytrens remits and you get a break, sounds like you're doing eveything you can to live with it/get it under control. Good Luck!