Interview with a UK based Dupuytren's and Ledderhose patient

The following interview is with a Dupuytren's and Ledderhose patient from the UK. He has had surgery, more information can be found here. 

1) Do you have Ledderhose disease, Dupuytren’s disease or both?   

Both. Dupuytren's of my left hand was diagnosed in 2004 at Addenbrooks Hospital, Cambridge. It was causing a lot of pain as it bent up and nodule appeared on the palmar fascia. I didn't really know what it was at first. No surgery was recommended, and it has only slightly deteriorated over the last 10 years. The pain is intermittent, but bad when I catch it on something! I have very limited mobility in my little finger and can’t straighten it. The nodule is clearly visible.

My plantar fibromatosis was diagnosed in early 2009 by Mr Phillip Milsom in Colchester, Essex. He operated on my left foot (the worst of my two feet) in June 2009.

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 father had both hands operated on for his Dupytren's at different times; it reduced pain but increased mobility was very short lived. At a family party, I also noticed my great aunt had it in one hand. I don’t excessively consume alcohol, nor smoke. My paternal grandmother was diabetic.

3) How long had you had Ledderhose before considering Surgery? And what other treatments had you received / were you offered by medical professionals?

My GP nearly tried to lance the nodules on my foot! He believed it to be a ganglion cyst, however, thankfully he referred me to the specialist Mr Milsom. This was in early 2009 when I had chronic pain from my foot and it was starting to affect my work and sporting activities. Despite the the risks associated with surgery, he recommended this as the best plan of action. It was unusual to have Ledderhose at my age, I was 26 at the time.

4) Before Surgery were you made aware of the rate of reappearance after traditional surgery and did this concern you?

Yes, but I needed to do something. I am a teacher and I was having to take my shoes off and teach barefoot as the pain was so great. After playing hockey on a Saturday, I had to rest for most of Sunday.

I was warned that that success rate was variable and that they could easily come back, with more or less pain. It was obviously a major concern, but I was willing to try it.

5) Were you at the stage where you couldn't walk before you had surgery / what sort of pain were you in?

Obviously I was not totally incapacitated but the pain was regular and at times severe. When I woke up in the morning, it was often bad. I had a burning sensation or a dull ache. Walking on uneven surfaces was particularly difficult, the beach was the worst! I had to stop wearing several pairs of shoes as they were just impossible to wear without huge amounts of pain.

6) What kind of surgery did you have and how long did it take?  

A large part of the plantar fascia was removed including the section where the nodules were. This operation was carried out by the consultant himself at Colchester General Hospital, Essex.

I was under local anaesthetic, I had several injections in my foot before being taken into surgery. My foot was elevated and a screen placed across my torso so I couldn't see down to my feet. It was a very odd sensation, it felt like someone was drawing on the base of my foot with a biro pen.

The operation lasted about an hour. After which I was allowed to go home.

7) How did the treatment go? How long did the treatment take and what was recovery time like?

The operation was a success. However the recovery time was long. I had the operation on the 1st June and I was on the sofa for June, July and most of August. I returned to work on the 1st September.

Friends and family were good to me and took me out, however I can see how depression can kick in. I was taking a large dose of painkillers to begin with, but they left me constipated, and so I had to reduce those. I found it impossible to get comfortable and I slept a lot.

8) How long ago was the Surgery treatment? Have the lumps grown back? If yes how long did they take to grow back and are they worse now?

The surgery was 5 years ago (2009), and the nodules reappeared about 2 years after surgery. I actually now have more and bigger nodules, however they are less painful than before. I regard that as a partial success.

However, as I am only 30 now, I do worry that the pain will return to the level it was previously. I still get the burning pain and the dull aches, and after sport it can be very painful. I elevate it when this occurs.

9) Would you say that the surgery was worth it? And would you recommend it to people that have Ledderhose? Would you consider having it again?

For pain relief, yes it was certainly a success. However I do have reservations about it being labelled a cure. Perhaps it is for some people, but obviously mine are now bigger than they were previously!

Since discovering this blog, I am in the process of considering my next step. I am looking at alternative treatments as I do worry that this is only going to get worse. I love to play hockey, and to run; I have managed two half marathons with my Ledderhose.  

10) 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 Surgery?

I would definitely say things are better, and perhaps its current state is the best it ever will be. I think I have come to the realisation that this may be something I need to cope with for the remainder of my life. There are worse discomforts in life, and it is certainly not debilitating. It is an inconvenience though, and I do very much worry that it may get worse at some point in the future.

11)  What treatments have you tried since surgery?

None to date.

12)  What treatment options are you considering now?

I plan to visit my GP in the area where I now live and start the process from scratch to see what is offer in my new area (Upminster, Essex) on the NHS. However I realise that I may need to seek private treatment either here or in the US. If something closer to a cure is available, the cost will be insignificant compared to the freedom it would offer.

That is the end of my interview with Andy Lewis. He has given some great answers and it is interesting to hear that at the moment his surgery is sort of successful as he isn't suffering from the same degree of pain as he was before. It will be interesting to know what treatment he is offered and what treatment option he goes for. There are certainly still some available whether it be Radiotherapy, Cryosurgery or an enzyme injection.

A patient experience of Cryotherapy and Verapamil

About 5 years ago, I developed a bump behind my big toe on my right foot.  I had no idea what is was.  I mentioned it to my doctor, who is a very well connected Dr, in Philadelphia.  (I drive 2 hours to visit him from my home town).  He referred me to Dr. Robert Cohen.

http://www.paolifootcarecenter.com/staff.html

I really had no idea what to expect, and sort of assumed that as long as it was not cancer, it was going to be no big deal.  Well, it was not a cancer, and Dr. Cohen confirmed it.  At this point, I had no real discomfort, but was worried about the bump.

He put me on Verapamil as the initial treatment, and it did not really do anything. 

Dr. Cohen subsequently did a cryosurgery on it, and I really expected it to be broken up and dramatically shrunken after the procedure.  I revisited a few weeks later, and the Dr. was quite happy with the change in size and shape.  I personally really did not notice any significant shrinkage, but it had become a bit elongated.

Over the next 2 years, I did the procedure 2 more times, with nominal results, that were duly noted by Dr. Cohen after he ran an ultrasound each time.

After the 3^rd treatment, I stopped going.  I really did not feel any great change, and I had not really had any significant pain anyway. 

I had been given a pair of orthotics to lengthen my arch, with a small shaping around the fibroma to remove some of the impact on it as well.

I went through the next 2 years, with no real concern about the fibroma, and I felt like the cryosurgery was pointless.

I have recently changed my mind.  The fibroma has gotten a little bit larger, and is much more painful.  I get the burning sensation that others describe.  In particular, each morning when I first put weight on it.

I will be going in February to have it evaluated again, and have a new cryosurgery.  I am hoping it will disrupt the fibroma enough to set it back to where it was just an annoying bump without the intermittent pain and burning.

The Cryo process: 

The surgery is really simple.  They numb the foot, cut a small (size of a drinking straw) hole in your foot, and insert a tube that forces cold (like a dry ice) into the fibroma. They continue this insertion until the point where the cold my damage other tissues.  You are wrapped in a sterile bandage, and your foot is wrapped in a hard paper boot, that diverts weight around the arch, and you walk out.

After 3 days, you take the bandage off, and put anti biotic on twice a day like a normal cut, and go about your business.

Cryosurgery is NOT a cure.  Not even close.  It may not even reduce the fibroma.  But, my instincts tell me that it did delay any increase in size, prevented pain within the fibroma, and was a good thing.

I would like to emphasize that my final thought in cryo is that it is a tool to reduce pain, nominally shrink and reshape the fibroma and slow the process down.

An interesting read on Dupuytren's contracture

I came across this yesterday and thought it was a very interesting read on Dupuytren's http://www.dupuytrens.me.uk/dupuytrens.html

To quote their title...

I am not going to copy what they have said because well that would just be copying but I am going to look through it and try and pick out some key points, unfortunately as far as I can tell the author has left no contact details so I can't get hold of them to ask them some questions or even whether they mind me posting about their story which is why I am going to try and do my best and try and draw things from their experience rather than copy their information (a lot of which I already have here on the blog anyway). In fact I just urge you to read it and I am only going to give a summary below to hopefully get you interested. A lot of time and effort has clearly gone into this one long post and it is almost a bit like my blog all chucked out in one go. 

Summary: 

Male that has Dupuytren's in both hands. He had both hands operated on by different surgeons at different times, the hand operated on later had recurring Dupuytren's and this person thinks it is the fault of the Surgeon. They go on to talk in depth not only about their experience but about the hand, Dupuytren's, Collagen, Fibroblasts, growth factors and some of the alternative treatments, any of that sound familiar?