Today I have an interview with a patient from Australia. This patient has had an injection of tissue plasminogen activators from Dr Chin. The results for this patient are very good and I am lucky enough to have a very comprehensive interview with this patient.
1. Do you suffer from Ledderhose and or Dupuytren's?
Both - in both feet
and both hands
2. Do you have a family history of the conditions? Or fall
under any of the risk factors?
Ex-smoker from age 12 stopped at age 40 moderate alcohol,
hit it hard like most teenagers when in the British Army, Mum had DD, no one
else in family seems to have it, 4 siblings and to the best of my knowledge no
immediate family (Nephews/Nieces/Cousins) show any signs
3. Where are you based, how old are you and how long have
you been suffering with the condition and how has it developed over time?
Now living in Redcliffe, north of Brisbane in Queensland
Australia. Aged 60 and 7 months. First recollection I had DD which appeared
first on my left hand was around 20 years ago followed shortly by LH on my
feet.
The left hand and feet started first followed shortly by the
right hand and foot.
4. What treatment options have you had?
Left Hand
5 Needle Aponeurotomy 3 in USA with Dr Eaton and two
releases locally in Australia.
1 partial strip to release the very badly swollen ring
finger knuckle, which has kept the finger straight for 10 months now, but some
nerve damage.
Right Hand
3 Needle Aponeurotomy in USA with Dr Eaton The ring finger on the Right hand is starting
to get to about 15 degrees but it is also twisted and the knuckle is swelling
so may look to a release soon.
Left Foot
Tissue Plasminogen Activators injection at the same time as
my left hand was operated on (under General anaesthetic).
5. You have been treated with Tissue Plasminogen Activators,
could you please explain how you found out about this treatment and why you
picked it over other treatment options?
I was informed of Dr. Chin from a contact I met at a meeting
and followed up. The Colleague was very
enthusiastic about it as he was a Biotechnology Consultant who was working with
Dr. Chin and had seen the results.
I was privy to some commercially sensitive information regarding
the treatment and its efficacy and the path Dr. Chin was taking and decided it
was safe enough to try particularly as it is below any dose given for other
clinical reasons for which it is approved.
I have studied the results of other treatments and apart
from some success with RT could not see anything that was successful. I did attend an RT clinic here in Brisbane
but was not convinced they had the experience at that point.
Dr. Chin has treated in excess of 100 patients for
Ledderhose and I am unsure how many for DD.
He has stated that for Ledderhose after 10 years plus there has been no
recurrence, but for DD recurrence has occurred in some patients after 5 years.
There are no significant side effects that have been
reported, there is a very small chance of temporary impotence.
6. Please describe, in as much details as possible, the
procedure to administer the treatment and the recovery period?
The injections were made into each nodule in the foot, (I
think he missed one). For me it was
under anaesthetic as I was having the DD treated, but normally done with a
local anaesthetic.
Pretty sore for two days, walking on the outside of the
foot.
The foot settled after 3 days then the nodules started to
immediately shrink. Massaging was
indicated for helping the TPA work in the nodule.
I was warned the top of the foot would hurt after 3 - 5
weeks, Dr Chin said this is because the foot will flatten and muscles and
tendons would be stretched that had been contracted and sure after about 4
weeks that is what happened. The pain
lasted about a week and since then has not been a problem.
7. How has your condition progressed since you had the
treatment and are you happy with it?
Some 10 months later there is one very small nodule on the
left foot that has been there since the injection (I think this is the one he missed). Cramping has greatly reduced in my left
leg! There is no sign of the original
nodules so I would call this treatment a success. I will be going to Dr Chin possibly early in
2104 to get my right foot treated.
8. Is there any more information you would like to share
with the patient community?
My experience is a positive one, perhaps I have been lucky
but TPA is striking at the very core of the tissue mass and has been utilised
for heart attack victims for many years to break up clots. Dr. Chin is attempting to license the
treatment to recover the cost of his research to date, I hope he gets a sponsor
and makes this treatment more available.
Some of the photos he showed me of before and after have been spectacular
so I feel it is a worthwhile treatment to pursue.
It certainly is a very interesting treatment option and not one that I am aware of being used anywhere other than by Dr Chin (probably because he has a patent). Hopefully there will be a publication soon that show all the results, if they truly are 100% for Ledderhose then that is really very remarkable and perhaps this option can become more mainstream in the future.
