Interview with DD and LD patient treated with Tissue Plasminogen Activators for LD

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. 

Australian Ledderhose surgery patient

Today I have another patient interview. This was sitting in my IDS forum inbox for a month without me realising. It is with a surgery patient from Australia. 

Where are you from? 

Adelaide, Australia

Do you have Ledderhose and Dupuytren's? 

Yes, I have Both conditions and have had so for approx. 8 years

Do you have a family history of this condition?

 None that I am aware of.

How did you find the medical awareness of these conditions? 

I was misdiagnosed for approx. 4 years as having Ganglion's and it was only by sheer luck that my new GP had heard of Ledderhose from a fellow practitioner a week before I presented myself to him

You had surgery, were you made aware of the risks of having this? 

I was told "As with any surgery there are risks". But it was never explained what those risks might be.

What condition were you in when you had the surgery? 

At the time of my initial surgery I was what I believe to be as Stage 4. Some days I could barely place any weight on my feet and I would often wake in the night screaming as my feet contracted on themselves.

Could you please describe the surgery process and recovery? 

I underwent the Ankle Block procedure and an S shape incision was made, then as much of the Mass was removed as possible. I was then instructed to stay off my feet and keep them elevated for at least 4 weeks.

How successful would you say the surgery has been? 

Completely unsuccessful, the Mass had already begun to return within the 4 week period of elevation immediately following the surgery.

What other treatment options are you looking into? 

At the moment I am awaiting an appointment with an Oncologist to discuss Radiotherapy. It disgusts me that this was not the first option given to me. I don't believe that because the condition was largely prevalent in my feet that an Orthopaedic Surgeon was the right option. Based on the information on this site a Specialist with this condition should have been the first step, so that I could then be advised of all treatment options.

For example, while I was in the later stages of Ledderhose and surgery may well have been my only option it should have been part of my treatment regime to have undergone Radiotherapy immediately after surgery.

It is interesting to hear of this patients experience, especially with regards to the lack of information they were provided with before undergoing surgery. As this patient said there is no reason why other options (such as radiotherapy) could not be offered before surgery was attempted.