Welcome

Welcome to the Ledderhose disease (plantar fibroma) blog.

My name is Gary and I am the author of this blog. I am a ledderhose patient from the UK. I am an ex-scientist and hold a degree in Molecular Genetics and I try and put this experience to good use exploring this condition.

I have pages here about the treatment options, patient experiences including my own, insights from medical professionals, explanations of the science and whatever else I think may be useful for fellow patients. Through the blog I have made contacts with many patients, professionals and charities and now work as a trustee for the British Dupuytren's Society.

Hopefully you can find the pages you want using the navigation menu above or use the search box to look for specific information.

Hope you enjoy reading the blog and please contact me at ledderhosedisease@gmail.com or leave a message on here to get in touch. All information will be kept private unless you tell me otherwise.

Thank you for visiting.

Wednesday, 23 August 2017

A patient story

My name is Mike Andrews, I am from Gainesville, Georgia, and I've had Plantar Fibromatosis since 1994.  I first noticed it in January and was referred to an orthopedic surgeon for surgery in late February or early March (so long ago, I can't remember) of 1994.  Surgery was performed on my left foot and after several weeks in a cast to just below my knee, I started walking again without crutches.  
Like you, I used to be quite active.  I would bike about 12 to 15 miles a day and run 3 to 6 miles a day.  About a year after my first surgery, I was able to slowly start running again, but still had a bit of post-surgical pain in my left foot.  The removal of the lesion, along with some of the surrounding fascia tissue to obtain clean margins affected the mechanics of my left foot.  Also, being in a cast over my thigh, though only for about three weeks, resulted in a noticeable loss of muscle mass.

Then in late 1999 or early 2000 the lesion returned on my left foot and I noticed one on my right foot.  My GP referred me to a podiatrist this time. After examining me, he suggested conservative treatment of cortisone and lidocaine injections.  I had one in April, but was impatient and decided to not continue that course of treatment.  I wish I had not been so impatient as you will soon discover.

In April or May of 2000 I had bi-lateral surgery.  I took time off from work (teaching in Atlanta) starting in April to have both surgeries done and allow enough time for recuperation before returning to classes starting in August.  

The first surgery was on my left foot, then about two months later I had surgery on my right foot.  I was mostly unable to walk and when I did, it was on crutches.  I was unable to drive, so I relied upon the help of my roommate and a good friend who came to stay with me to take care of me.  I ended up sleeping mostly on my sofa and my friend used my bed.  Without the aid and support of my roommate and my friend, I don't know what I would have done as having bi-lateral surgery, even a couple months apart, really limited my mobility.  Needless to say, I gained a lot of weight at this time, too.

Everything seemed to be back to normal, but as a result of the second surgery on my left foot, even more surrounding fascia tissue was removed to get clean margins.  The lesion on my right foot was larger than on my left and a large amount of fascia tissue surrounding the lesion was removed - again for clean margins.  Needless to say, the mechanics of both feet were altered much more.  My arches had fallen and my feet became much wider.  My mother commented that I had "Hobbit feet."  I was unable to wear shoes of the same size as before.  Previously I had been a size 8 to 8 1/2.  Now I wear a 10 to 10 1/2 to provide extra space in the toe area for my wider feet.

I thought everything was back to normal and I left the US and moved to Korea for two years before moving to China.  Then about in 2005 I noticed the lesions began to return.  First on my right foot and then on my left.  The lesions were not as big as before, but were noticeable.  Knowing this to be a rare condition, I suffered in pain for more than 10 years as the lesions continued to grow and become more and more painful.  The pain became so bad, I had been "self-medicating" with booze.  Any day when I did not work the following day, I would drink at least a liter of any type of alcohol available.  That meant on my summer and winter vacations, I would drink a liter of gin every day starting in the afternoon and going well past 2 or 3am.  The following day it was rinse and repeat.  Back here in China when working, I would drink the "local hooch" (anywhere from 40% to 60% alcohol) on the weekends.  Self-medicating with booze was not working out for me.  

Finally I could not take the pain and booze any longer.  In June of last year I finally got a translation for plantar fibromatosis in Chinese – 足底纤维瘤病or zú dǐ xiānwéi liú bìng in pinyin.  I wrote it down on a piece of paper and went to the local hospital.  I showed it to someone at the check-in desk and they called a translator from the "VIP Office" of the hospital that deals with expats.  I explained my condition and said since I already had three prior surgeries, I was not interested in entertaining any surgical procedure in any way.  I asked to see a podiatrist for my condition and only wanted to start a series of lido/cortisone injections.  I had done quite an extensive amount of research, read several papers, and came to the conclusion the best course of treatment would be to start with three injections of Triamcinolone with lidocaine, spaced a month apart, then wait for three months, and go in for another round.

I was informed there are really not many podiatrists in China, so dermatologists deal with my type of conditions.  I was taken to a dermatologist.  My translator from the hospital explained my condition, but the doctor refused to even look at me or my feet.  I then suggested going to an orthopedic surgeon.  He agreed to look at my foot and that's all he did - look.  He then refused to provide the treatment I was requesting as he said it would be ineffective.  He wouldn't even discuss any other treatment options.  Finally, I saw an older doctor and asked the translator what kind of doctor he is.  My translator said he is a general surgeon.  I went to see him.  My translator explained my condition and she told me the doctor would examine me.  I took my shoes and socks off and this time the doctor actually took the time to examine the tumors.  He felt them, listened to both me and the translator, but finally said the Triamcinolone and lidocaine treatment would be ineffective.  He suggested surgery and quoted a price - 5000 rmb. That is only about $745 US!  Far cheaper than the $14,000 I was charged for my first in-patient surgery and the $20,000 for the two out-patient surgeries in the US.  But, I digress....

I asked the translator to take me to one other doctor, another dermatologist, and again the doctor refused to even consult me.  Finally, we hear the older surgeon calling me back to see him.  He finally agreed to the treatment I suggested, though he still said, for the record, he did not believe it would be effective.

I waited a few minutes outside a procedure room while my translator went to obtain the meds.  About 15 minutes later I was in the procedure room and Dr. Piao mixed the meds according to my instruction.  The Triamcinolone he used was 5ml = 50mg and the lidocaine was a 2% solution without epi.  I said he should use a 3:1 ratio of Triamcinolone to cortisone, then inject each lesion with 15mg to 30mg of Triamcinolone  

After the procedure, I paid the hospital fee of about 350rmb ($52 US) and left.  A month later I returned on my own and decided not to use the "VIP Office" services.  I got in the line to pay 2rmb (30 cents!!!) for my doctor consultation fee.  I went to the second floor and waited for my number to be called, but upon seeing me, Dr. Piao called me in ahead of other patients.  He examined me, and agreed to do another treatment.  I went to pay the pharmacy fee of 120rmb ($18) for the meds, picked up the meds from the pharmacy, and returned to the procedure room.  I waited a few minutes, and was then led into the procedure room where I was prepped.  A few minutes later Dr. Piao arrived and he did the procedure.  Once finished, I was bandaged, I put my socks and shoes back on, and was free to go.  What?  I didn't need to pay anything extra?  Nope.  Total this time was only 122rmb - just over $18 dollars for my treatment.  

I came back about three weeks later as my boyfriend and I were taking a trip to Thailand for several weeks and we'd be away when the third treatment should take place.  Repeat the steps above and I was done.  I came back in September for a fourth, and final, treatment - just for luck.  All was done in less than an hour and again for the same low, low price as before.

I should also note that during my first and second visits, I was slightly drunk and likely smelled of booze.  My boyfriend went with me for my second visit and explained I had been self-medicating for pain.  Dr. Piao prescribed Oxycontin for pain.  Now, I understand the epidemic of abuse of Oxycontin in the US.  The Oxycontin Dr. Piao prescribed me came with a VERY low dose of Oxycodone.  The meds were 5mg Oxycodone with 325mg acetaminophen.  These were very helpful and due to the low dose of Oxycodone, I don't feel any danger of becoming addicted to the meds.

I'd make periodic trips to the hospital during the intervening autumn and winter months for refills on my pain meds and just general check-ups on my condition.  I was no longer self-medicating with booze as I had done before.  The pain meds were instrumental in causing me to restrict my intake of alcohol.  I believe this to be a beneficial side-effect of taking the meds I was prescribed.

In March of this year I returned and met with Dr. Piao again.  He was quite impressed as he could see upon visual examination the lesions had become noticeably smaller.  He was being shadowed by a young med student and she spoke some English.  I explained to her my history she took notes.  As many will know from research, plantar fibromatosis is very rare in the Asian population.  Dr. Piao and I were quite familiar with the routine at this point.  He logged on the computer the meds I needed from the pharmacy and I went to pay the pharmacy fee and pick up the meds from the pharmacy.  Again, less than an hour after I had entered the hospital, I was done.  

The second round in April went as expected and was as all other treatments.  

In May I returned, but Dr. Piao was not working on the day I went, so was referred to the ER for treatment.  I didn't want to do that, so I got a refund of my 3rmb (more expensive this time as I was visiting the ER instead) and went home.  The following day I returned to the hospital, paid my 2rmb fee and went upstairs.  Dr. Piao again was not working that afternoon as he was working over-night shifts in the ER as the surgeon on-call.  I met with another doctor and we discussed my condition and I showed him my treatment book.

Here is a brief explanation of the treatment book I mentioned.  All patients are given a treatment book that contains the treatment history and doctors notes.  Patients receive it when they first check-in and register.  It contains a bar-code which is scanned and is linked with the patient's records stored on the hospital's computer network.

So, the new surgeon referred to my treatment book, but did not see accurate notes on the dosage of Triamcinolone and lidocaine.  He went ahead and logged the meds on the computer so I could go pay the pharmacy fee and pick-up my meds from the pharmacy.  Once in the procedure I tried to explain to the doctor the dosage, but he wanted to ask Dr. Piao, instead.  He called Dr. Piao and was told exactly the same thing I had told him.  This third and final treatment was completed and I was sent on my way.  Again, having paid less than $20 for my treatment.

Meanwhile, I visited a large pharmacy in my neighborhood and took my treatment book with them and asked if they sold the Oxycontin Dr. Piao had prescribed me.  They did.  I could obtain it from there and at the same price as at the hospital.

It's now July.  The lesion on my left foot is completely gone.  I still have a lesion on my right foot (later I will provide the history of measurements) and Dr. Piao suggested there is no need for me to continue visiting him for treatment.  He advised me it would be acceptable for me to continue my treatment for maybe one or two final rounds.  I am able to order Triamcinolone online, as well as 2% lidocaine.  Each treatment costs me about 9rmb for Triamcinolone, 2rmb for the lidocaine, 2rmb for sterile latex gloves, and 1rmb for the syringe.  Cotton balls, and betadine I purchased bulk, so the cost is a fraction of a yuan (rmb).  My total at-home treatment is 14rmb or just over $2.

I hear you screaming about doing an invasive treatment at home is not safe or the ethics of a doctor allowing this type of procedure to be done by he patient.  I hear you and understand your concerns.  I can only counter with two arguments.  The first argument I would offer is the fact that I have been living with this condition for over 20 years and FINALLY have found a treatment that appears to be working well for me, albeit slowly.  The comfort of being able to do this at home in a much less stressful environment than the chaos experienced in a Chinese hospital far outweighs any minor risks associated with a minimally invasive procedure as injecting steroids and lidocaine into a lesion on the bottom of my foot.  The second argument I would offer will likely never be understood by anyone who has not lived in China.  The second argument is simply TIC (This is China).  Things are done a bit differently here.

There are many more things I could address here, such as the chaos of Chinese hospitals I mentioned above.  That alone would deserve a blog post of equal length as this.  Again, the pros and cons of each system could be debated ad nauseam, but again, that is not the purpose of this post.  With that said, the system is quite efficient and is far cheaper and time-consuming than the health care system in the US – as detailed in my experience.  

So, you've read this far and you are probably wondering what the results have been.  I will be using standard millimeters (feel free to do the conversion on your own) for my measurements.  Also, I only took measurements of the lesion on my right foot as it was the larger of the two.  Last, not all measurements coincided with a treatment with Dr. Piao.  
21 September 2016 – 21mm x 17mm
22 October 2016 – 21mm x 20mm
1 March 2017 – 17mm x 15mm
10 April 2017 – 17mm x 13mm
18 July 2017 – 13mm x 12mm

So, while these results show the lesion to definitely be decreasing in size, the rate is slow.  This is an on-going process and not a quick-fix.  Still, if I had it to do all over again, I would not have opted for surgery.  Though it is relatively quicker in removing the lesion, the pain of recovery, the time of recovery, the weight gain in my case, and the negative effect on the mechanics of both my feet, I would chose the much more conservative treatment of intralesional steroid injections.  It should be noted there has been some debate on the efficacy of the use of lidocaine in treatment.  For people who have experienced painful lesions, the effects of lidocaine only last 90minutes to a few hours.

And one last thing about me personally, I have mostly given up drinking and my liver thanks me!  Since about March of this year, I can probably count on one hand the number of times I've consumed anywhere close to what I used to drink.  That in itself has been a GREAT benefit in seeking this treatment.  

Over the next few months, I will take more measurements of my right lesion and post the updates here.  
I hope this has been helpful.  If anyone has questions, you can post them here and I will try to check back periodically.

Finally, please be aware I am not a doctor and this is not in any way to be considered as any type of medical advice.  I only offer my experience as a guide to assist any readers in making a more informed decision regarding their medical care and treatment of plantar fibromatosis.  As always, be sure to consult a properly educated and licensed health care provider.  Though this should go without saying, it is still necessary to include, just in case.

-Mike
 

Monday, 24 July 2017

RIDD Trial Recruiting Dupuytren's Patients

Anna and I had a phone call today with Prof Nanchahal and the progress that is being made on the RIDD trial. It was good to hear that part 1 has gone really well and they are moving onto a larger study for part 2. Hopefully this trial could led to a new treatment for Dupuytren's and potentially Ledderhose. 

For part 2 of the trial they need over 100 patients with early stage Dupuytren's. Currently they have a centre in Oxford, soon to have one in Edinburgh and then are looking to introduce one in Europe. We have been told they are covering travel costs so don't worry too much about being in the area near the treatment centres.

My understanding is that for 1 year you will be treated with injections every 3 months followed by a 6 month follow up so you will need to be able to get to the centre on several occasions. 

If you have early stage disease and are interesting in learning more and potentially participating in the study then please here to this link. It includes more information on the trial and what they are doing. 

The results of part 1 are being worked on and will be published soon and the protocol being used is available here.