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dupuytrens / Ledderhos - Mayo Clinic Advice
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05/24/04 02:03
andy

not registered

05/24/04 02:03
andy

not registered

dupuytrens / Ledderhos - Mayo Clinic Advice

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 (pyrones?). 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

05/24/04 02:20
Frances

not registered

05/24/04 02:20
Frances

not registered

Get a second opinion

Hi Andy,

The doctors comments, particularly about cancer, make me think you require a second opinion. Contact Dr Eaton in Florida for an appointment and explain all that was said. Yes, you will be speding more money; it will be worth it.

The Mayo Clinic most certainly has an excellent reputation, however, NA for DC *is* an option other then surgery and *should* have been explained. It has been around long enough in North America DC patients *should* be given this as an option. For a doctor to not mention that NA is available makes me question how up-to-date they are with their information.

Having said that, I am not sure if NA is used on the feet as well but would definately investigate it.

Take care,
Frances


05/24/04 02:29
Frances

not registered

05/24/04 02:29
Frances

not registered

Disregard

Hi Andy,

Shoot, I read your message wrong. Please disregard my comments about how you should have been informed about NA, - one of those days I guess - I would however still get a second opinion about your feet from Dr Eaton though....

Take care,
Frances


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