December 26, 2018
Michele from Wisconsin – My
Ledderhose Story
Dupuytrens, Ledderhose and related conditions support
Hello, I'm new to this community and
I've read member questions about lumps on the bottom of their feet
and was diagnosed with plantar fibromatosis or Ledderhose disease.
I've have had this condition, on both of my feet for 15+ years, and I
have it in my hands as well where they call it Dupuytren's disease.
Mine happens to be hereditary, although other causes are possible. My
ancestors were from Europe and I found an interesting article about
the hand disease that talks about it originating all the way back to
the Viking era https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305903/
which is basically the same information I found about Ledderhose
disease.
I could go on and on, but it took me
years and tears and lots of pain before I found a combination of
things to help me with the pain from my lumpy feet. Most times I
seemed to know more than the doctors and physical therapists about my
condition, which I found terribly annoying! But with persistence, a
lot of internet research, I found a great family physician and
podiatrist that have helped me tremendously. This disease is not
curable, because it is in my DNA, but there is help to manage it.
1. Custom orthotics for me DID NOT
work. I've had two pairs of them at about $1,000 a crack. They make a
model of the sole of your foot and carve out areas where your lumps
are. The problem I encountered was the area where my lumps had less
pressure on them, but the harder type insoles they use just caused
hurting in other parts of my feet. They also want to try and correct
your gate, which at this point I don't need correction I need pain
relief. My podiatrist agreed other patients noted they just caused
other areas of the feet that ended up hurting. I feel the material
they used for the insoles was never soft enough.
2. A Pedorthics shoe store helped me
create soft flat insoles to use in my shoes and I myself used a
dremel tool to carve out the areas with lumps to off-load some
pressure from them. The rest of the insole was nice and soft for my
feet and this has been a reasonable solution for me.
3. My lumps cause me serious pain and
I'm managing that pain by using a combination of prescription drugs
and topical lidocaine cream on the lumps. First for chronic pain I
use Cymbalta or generic is Duloxetine. It is approved by the FDA for
chronic nerve pain often caused by diabetes, but it helps my nerve
pain as well. It's not only the feet that hurt, but my entire legs
too. The other prescription is an anti-inflammatory drug called
Diclofenac Sodium. Your doctors would decide what dosage to start you
on. And last I rub 4% lidocaine cream on my feet lumps to take the
edge off the pain especially when I'm trying to sleep.
4. I will AVOID Surgical Excision of
Plantar Fibromas (https://www.ncbi.nlm.nih.gov/pubmed/18626366) until
my options are either a wheelchair or having the surgery done. Again
what I've read many people go through this very invasive surgery only
to have the lumps return and sometimes with even worse effects than
what they started with.
5. I have had 4 foot surgery with a
much less invasive procedure called Tenex (see
https://tenexhealth.com). This procedure softens the lumps and
reduces their size making them, after recovery, a little less
painful. I have this done every couple of years, because the lumps do
not completely go away, and they do harden again over time. It is
something that helps me maintain a somewhat normal routine so I can
do my housework, shop for the groceries, and be more mobile again. So
again this helps manage my disease, but does not cure it.
Interview with patient who had
minimally invasive surgery (Tenex)
1) Do you have Ledderhose
disease, Dupuytren’s disease or both?
I have conditions, Ledderhose disease
and Dupuytren’s disease.
2) Do you have a family history
of the disease or have any increased risk from other risk factors
such as excessive alcohol consumption, smoking, diabetes etc?
My dad had both conditions as well.
3) How long had you had
Ledderhose before considering Tenex? And what other treatments had
you received / were you offered by medical professionals?
- I probably had Ledderhose for 12 years before I learned about Tenex and had the procedure done to my feet.
- Custom orthotics, which were terrible, at about $1,000 each time (I tried them twice).
- 4% Lidocaine cream – a topical anesthetic.
- Physical therapy to stretch feet, but honestly the PT never saw my type of foot condition before! So it really did nothing for me.
- I was prescribed a T.E.N.S. unit for chronic pain, which can be helpful to reduce swelling and pain.
- I was prescribed Cymbalta or generic is Duloxetine for chronic nerve pain, and Diclofenac Sodium as an anti-inflammatory. These two have helped me a lot to manage my pain. I’d say they actually gave me my life back so I could get out of the house or even just be able to do my housework and be more mobile.
4) Before Tenex were you made
aware of the rate of reappearance after traditional surgery and did
this concern you?
Absolutely, it’s not a cure just a
lesser invasive surgical method to reduce and soften the lumps. It’s
something I’ll continue to have done every few years until they
find a better option or cure.
5) Were you at the stage where
you couldn't walk before you had Tenex / what sort of pain were you
in?
Before I was placed on my meds, I
could walk, but with significant pain. I walked slowly and how much I
walked or stood on my feet. I was horribly depressed from the
constant pain at my young age (early 40’s) with no idea how to help
myself. I saw 3 podiatrists, physical therapists multiple times, and
finally my general family doctor suggested I see a podiatrist I knew.
This is when my pain finally started to become manageable.
6) Tenex is not that familiar to
me, please could you explain the difference between it and regular
surgery?
Tenex uses ultrasound as an imaging
tool to identify the Fibromas and visualize the procedure. A pen-like
device cuts and removes scar tissue on the tendon. One hole is made
in the Fibromas, with the pen-like device, and holes are poked all
over the inside of the Fibromas and at the same time the device
irrigates the wound and extracts the debris, making the Fibromas
softer and smaller. It can be done with local anesthesia or under
general anesthesia. I’ve had both and do NOT recommend the local it
is very painful and you are completely awake.
7) How did the treatment go? How
long did the treatment take and what was recovery time like?
The Tenex procedure can be very short,
or in my case it took the doctor 1.5 hours of work on both my feet
before she was done. My complete arches on both feet are covered in
Fibromas. I was directed to have no weight bearing on my feet for 2
weeks, wore a walking boot for about 4 weeks total, and went through
physical therapy afterwards as well. I found doing both feet at one
time was easier, because it levels out my walking with the books they
gave me.
8) How long ago was the Tenex
treatment? Have the lumps grown back? If yes how long did they take
to grow back and are they worse now?
It’s been two years since my last
Tenex procedure and the lumps are hard again and big as they were
before the procedure, but I expected this to be an ongoing procedure
for me. I do recommend the surgery, because it does provide some
relief. Some relief is better than no relief to me.
9) What would you say your
standard of walking is at the current time and do you think this
would be different had you chosen not to have Tenex?
My standard of walking is better, and
yes if I’d not had the surgery I’d just be dealing with the big
hard lumps, but surgery alone isn’t enough to keep me mobile. My
prescriptions also do wonders for my quality of life.
