Interview with Dr Spilken, Cryosurgery specialist for plantar fibromas

Today I have another interview with a specialist, Dr Terry Spilken.

Dr Terry L. Spilken earned his doctorate in podiatric medicine in 1979 at the New York College of Podiatric Medicine. He did his residency training at Kingsbrook Jewish Medical Center and Community Hospital. Within a decade, he was back at the College as a member of the adjunct faculty, climbing the podiatric stairway to the position of Dean of Graduate Medical Education and then Dean of Student Services. He has obtained the rank of Associate Professor in the Division of Medical Science.

He has also worked with the International Dupuytren’s society in the production of the book “Dupuytren’s Disease and related hyperproliferative disorders” where he was author on a chapter on “Cryotherapy and other therapeutic options for plantar fibromatosis” where here covered not only several of the options for the treatment of plantar fibroma’s including cryosurgery and surgery but also the associated risk factors, symptoms and inheritance.

You can find more information here

All information above is provided with permission and is available from the above link.

Here I have questioned him on the above subject of plantar fibromatosis / Ledderhose disease:

1) Do you often come across plantar fibroma’s? How common would you say they are in the USA?

Plantar fibromatosis is a very rare condition.  We see it quite often because of our specialization in treating this condition.

2) What are the risk factors for this disease and do you see these in patients, in particular what percentage of patients tend to have a family history of the disease?

The cause of plantar fibromatosis is still unknown.  There is thought that it is an inherited disease.  The necessary genes may remain dormant in the family over many generations.  Besides family history, there is a higher incidence in males.  Patients with these conditions have a higher risk factor: Dupuytren's disease, Peyronie's disease, epilepsy, other seizure disorders, diabetes mellitus, chronic liver disease and hypothyroidism.

3) I understand that every case is different but what course of treatment do you recommend for early stage Ledderhose?

Patients respond to cryosurgery very successfully the earlier in the course of the condition we get to do the procedure.  Cryosurgery has proven to be a very good option for patients and they seem very happy with the results.

b) Other options I have heard of being used early on include physio and verapamil. Do you know of any cases where these have been successful or the success rate? I ask as I have visited 2 physiotherapist who both said this could not be used to help with this condition and have heard poor results about verapamil.

I have not had success with verapamil.  Research is still being done on this treatment but so far the patient comments have been negative.  I don't think physical therapy is an option at all.  I have not come across any success rate doing PT.

4) I see on your website that you perform cryosurgery, what is this and how does it help with plantar fibroma’s? What sort of success rate does it have and can it be repeated?

Cryosurgery is an ambulatory procedure done in the doctor's office.  It involves freezing of nerve cells performed through a small incision, no sutures are required.  An autoimmune response is created with a change in the protein antigenic properties.  We have about an 80% success rate when the fibromas are in the early stages.  For advanced cases, we repeat the procedure several times until we receive the desired effect.

5) What is the procedure and recovery times for cryosurgery?

A small incision is made on the side of the foot under local anesthesia.  A trochar is used to cut into the fibroma.  The probe is then inserted into the fibroma and ice balls are created to destroy the fibroma.  Patients need 24 hours to elevate and foot and keep the bandage dry.  They need to avoid rigorous activity for about 1 week.  It takes 2 months for the full effectiveness of the procedure but the patient is ambulating fully within a few days.

6) I have also seen on the site that you performed ESWT, I have seen reports linking this to treatment of plantar fibroma’s, is this something that you do or know anything about?

(I covered it here http://ledderhose.blogspot.co.uk/2012/04/eswt-treatment-option.html)

I have not used ESWT for fibromatosis.  We use it for plantar fasciitis.

7) In the book chapter you cover surgical treatment of the disease, what are the options when it comes to surgery?

Removing the lesion alone does not work.  In fact, it has a 90% failure rate.  The only traditional surgery that has a good success rate is a complete fasciotomy.  We remove the entire fascia band so there is no fibrous tissue available for a fibroma to form.  There is a very long recovery time for this painful procedure.  The patient is left without a plantar fascia that can affect their ambulation in the future.  That is the reason why cryosurgery has been so popular as an alternative to this drastic procedure.

8) Do you have any other advice that you would like to give to patients with this condition?

Patients are very educated and do research on their conditions.  That is a wonderful development of the computer age.  The more knowledge the patient gathers the more options they give themselves.  Most doctors are not familiar with plantar fibromatosis and therefore don't know the best treatment choices to offer.  My advice is to keep as current as possible with the options available to them and follow the latest research.

I would again like to thank Dr Spilken for his answers. 

BAD PAIN

Oh the pain. Today was a BAD day for my foot, in fact it is the worst day that I have had in a long time. The pain was bad by 11am and nearly had me in tears by 12 and to be honest that state didn't really change from 12 onwards I was in a lot of pain and a lot of discomfort that was eased somewhat when I was able to sit down which annoyingly was not for that much of the day.

I also had some pain again in my right arch that intensified as the day went on. I think it is a disgrace that the only option left to me (as far as I am aware) in the UK is to have surgery. From what I have seen the other options are not necessarily better despite what people  have said radiation treatment and collegenase treatments both have the complications and drawbacks even if they are often not to the same scale as having surgery but both have said to be much more successful when administered early. The pain today did however reach a point at which at which I now know I need to get this seen to again and I am going to call the doctors on Monday and get myself seen to asap.

I am not sure what else I can do, my job means that I am not able to stay off of my feet and I have tried everything that everyone and anyone can think of to try and ease pain and I just don't know what else I can do, maybe I should try and I don't know where to go now....

But I was very happy to see this amazing post by my wife, the pain has motivated her to do a charity raising event for a relevant cause (assuming that we can find a good one) I will be sure to keep you updated on her progress and here it is .

Steroid injections for the treatment of Plantar Fibromas

Steroid injections for the treatment of Plantar Fibromas / Plantar Fibromatosis / Ledderhose Disease:

So my first blog posts on the kind of treatments that are available comes in the form of the steroid injection. The idea here is that the injection will help reduce any swelling and hopefully will be able to decrease any pain to a more tolerable level. Note that I am not a doctor or a specialist and that everything on here is just my experience with the disease and some information from on-line resources and that you should trust what your doctor tells you. I am not responsible for what you chose to do so please don't make your choice based on what you see here and blame me.    

How and why do steroid injections help a plantar fibroma / ledderhose disease?: 

Steroids such as cortisone are released into the body from the adrenal gland after periods of stress. Their effect is normally short lived and can be weak due to delivery through the blood stream. The actual role of steroids in the body are not as specific as their use here but they do aid the reduction of inflammation (1). Their role in the healing process that they are trying to get with plantar fibroma's, is at least in my understanding to try and reduce inflammation that is being caused by the presence of the lump. It has also been shown that steroids added to cultured cells from Dupuytrens patients have increased levels of apoptosis, for those without a science background this is the process of programmed cell death and means that the addition of the steroids is targeting the abnormal cells and causing them to chose to die (2). 

Results?: 

I have tried to access research articles that cover this but have had no luck so I am restricted a bit in what I can say. For what happened with me see the end bit of this post. The only other account that I have is from someone on the Plantar Fibroma Support forum  (3). She had a very difference experience to me. She found that the steroid injection made the lump worse and was not at all helpful. I guess that the usefulness of these injections comes down to the stage, size and type of lump and the only way to know it works is to try. 

Side Effects: 

Well as you heard from the above case of a plantar fibroma being injected with a steroid it can make it more aggressive and do nothing useful at all. I think a fairly common problem is the one that I had (see below). I was fine when I had the injection but when the local wore off I was in agony and it felt like the bottom of my foot was covered in bruises and it was really unpleasant for 24 hours or so but gradually got better. As far as I am aware there are no serious side effects. Side effects are particularly worrisome in Ledderhose as the injection can cause loss of fat cells which will mean a lack of padding in the feet and potentially increase pain (4). 

My Experience: 

I had a steroid injection into my Plantar Fibroma in July(ish) 2010 and it was the second form of treatment attempted by the specialists after initially sending me for physio which was a know go from the start. I am not sure how this procedure it performed elsewhere in the world but in my case it was performed with the use of ultrasound to ensure that the steroid was delivered to the correct site and it was done under a local to ensure that I was not in too much pain. 

The process started with them having to find the lump under the ultrasound and this only took a minute and I was quoted as having one on the larger side. Next I was given the local to the surrounding area, this was quite painful and although it hurt it was not as bad as some of the reports I have read on-line and I guess this is because they were having the injection without the local but that is just a guess. I was then fine for the next few hours but then the pain became unbearable and I was hardly able to walk at all, this lasted about 24 hours and then gradually dissipated. I then felt an improvement in the lump as there was both a decrease in size and pain which lasted a couple of months before things returned. 

This picture is actually from much later when I was having radiotherapy but it shows nicely the area in which the steroid injection was applied - picture added 05/06/2012.

References: 

(1) Macmillan - http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Supportivetherapies/Steroids.aspx accessed 20/01/2012: 

(2) Meek et al, 2002,The effect of steroids on Dupuytren's disease: role of programmed cell death, J Hand Surg Br. 2002 Jun;27(3):270-3.accessed 21//01/2012

(3) Plantar Fibroma Support Forum - Post by peekaboo64 http://plantarfibroma.freeforums.org/injections-t9.html

(4) Dupuytren Online, Steroid Injections - http://www.dupuytren-online.info/dupuytren_steroids.html accessed 21/01/2012

Blog is posted in association with Plantar Fibroma Forum

A painful birthday

Today things have not been good. My birthday which is great but we decided to go for a lab lunch. The place we decided to go to was about a ten minute walk away and then of course ten minutes back when the place was full. The meal we ended up having was really nice but by 2pm my feet we really killing me. I was struggling to stand for long periods of time and there was a lot of grimacing, I changed to my insoles and things were not much better but I kept them on for a bit to see if they would help. Things were not helped by me being busy in the lab, I needed to use the centrifuge a lot which is annoyingly on the other side of the room so I was up and down like a yo yo getting bits and pieces. 

Most of the pain was coming from the location of the plantar fibroma. One thing that was nice today though was that on the way back from the initial place that we tried to get food someone actually said we should go to the closest place because they were worried about my foot. I guess this kind of concern is something that I need to get used to and something to appreciate and is something that more people with Ledderhose would get if we could raise the awareness of it even just a little bit. I think that there are lots of ways of doing this and we just need to get round to implementing them but the thing is timing and money. Timing not just the right time but also finding the time to do it and then money well who has any of that and is willing to contribute any to a thing like this? (Sure I am repeating myself from previous blogs) 

Anyway back to my feet, the pain did seem to ease a little bit after putting the insoles on, still not to the point that I was happy standing or walking for any length of time but any improvement is better than no improvement. Only a week Monday  now until I get to look at my MRI results. I find it hard to believe that it is going to show anything other than Ledderhose but at the same time I can only imagine that it would be a good thing if it did as it is so hard to do anything about it otherwise. 

I am hoping that these orthotics will make things easier as I increase the amount that I am wearing them and that the MRI results will clear things up either way. 

Just an update...

Right this is all done on my phone so any mistakes might not be my fault for once. I had some spare time on a train today and thought I could write a blog post.

The first thing that I wanted to cover was my Orthotics which I got on Monday and today is Thursday. I know they will not work for everyone but I'm beginning to have some hope that they will work for me. Over the past three days I have not worn them much and then today I was a little bit naughty as I used them for three hours in a row although I was seated for Quite a bit of this. The difference when I put the trainers on is subtle I can feel that there is extra support and like to think that over the course of a few hours I can tell the difference. I tried standing for a little bit today, just standing still as this is what was one of my most painful things and at the moment it still is and I could feel the pressure building. Not wanting to push the limits of them too much I took them off and switched to my normal running trainers before heading for the train. Apart from the insole containing trainers being much warmer and drying which was to be expected there was no difference, ok so actually there was.

Anyone who had read this blog will know that I not only have problems with pain in the foot but also that I twist my foot right over to protect from the pain and have a bad ankle on the other foot.

1) The ankle - this was ok, despite going up and down stairs it felt good, hopefully this will continue to be the case and that'll be one problem dealt with by the inserts.

2) The twisting - wow, after wearing the insoles I sure notice the difference that they make. After taking my feet and placing them in the running trainers everything felt unnatural, it seemed normal again after a few minutes but I guess this is why I have to break them in and hopefully they can adjust my walking completely but perhaps for this to happen I would have to get some for my slippers and never walk barefoot.

3) the plantar fibroma - It is hard to tell from such little use. When wearing the insoles the lump was again not too bad and when switching back to the running trainers I started to get the odd twinge. I'm not saying that insoles are the right way for everyone, they might not even be right for me but as a minimum I am now hopeful that they will at least help delay the disease getting to the point where it runs walking life and the next step is to try then in shoes to see if I have to get some new ones fire the wedding.

I have also been thinking about rare disease day as it is something that interests me greatly. I have mentioned it to my partner who was encouraging and as the special day coincides with her last day at work we're thinking of serving cake with a helping of Ledderhose information. I have also mentioned it to my best man who said we should at least do something, do with those encouraging comments behind me I'm thinking of implementing something.

Although the above has the potential to raise money if we sold the cakes who is there to give the money to? In a post yesterday I talked about the rare diseases and I also did a search on the official site of all UK charities to see what was out there. Looking for Ledderhose or plantar fibroma(tosis) gives no results so if I did raise any money then there would be no relevant group to give it to. The chance to start a charity is there but that requires start up money and the time to manage it of which I have neither. But lets assume that there was a charity, who would that charity give the money to? With no research really going on into this you can't even give the money to them so you would only be able to use it to give support to those who have it and can't afford what they need to get round. Although helping these people would be great it would not get us any closer to a cure which is what some people are waiting for. I have to say that I think I am lucky to be living in the UK, as although I have find that the NHS is slow getting things done I do get them done and I don't have to pay. I have had physio for two conditions, the steroid injection, the Orthotics and an MRI. That's not too bad considering I only went to my GP with this 25 months ago.

Fingers crossed that we can raise awareness, even raise funds and who knows help people get on the path to help and wanting to find a cure. After all I hope to raise awareness in a scientific research building.

I'm thinking of doing a few posts covering all the different treatment options in as much detail add I can and maybe I'll find something new and useful in the process.

Raising Awareness of Plantar Fibromatosis

Raising Awareness of Plantar Fibromas / Ledderhose Disease:

If someone comes up to you and says they have something like asthma you go ok fair enough. Someone comes up to you and say they have a Plantar Fibroma (or Ledderhose disease) you go "eh!". Almost everyone who I have had to explain what I have to has not had a clue what it is, I also think that some of the so called specialists that I have seen have not been up to scratch with what I and many others have.

The problem with Ledderhose is that although it is debilitating to those that suffer it is not life threatening and how many do you know that have it? In all likelihood you are looking at this page because you are the only person you know who has it and are looking for others or you've come to the wrong place but I don't know anyone other than myself that suffers with this. So how do you convince people that it is something that needs to be looked into? Why should people research this little known and rare disease? I guess the answer is that they should not, I mean with disease like cancer out there why bother wasting your time on something like this? Well I think that the pain that those of us that have it have to go through means that it deserves some attention and in some cases it leads to depression, it leads to people being unable to work and with the related diseases that could also benefit from the research surely it is worth a shot? I also think that this is a disease which, if studied correctly, could be cured in a relatively short space of time whilst something like cancer I don't think we will develop a way to properly stop it and being in the cancer research field I should know.

So I think that the only way  anything can happen is to raise awareness but with our numbers so little and the numbers of people that have the internet and are connected and suffer pain enough to want to do something about it being even less what can we do? The answer is that I don't know and I wish I did, it is frustrating for people like me and those on the forum - Plantar Fibroma Support Forum that we have this and we want to do something about it but where do we start?

I think I have made and start and that brings a smile to my face. How many of my family, friends and work  colleagues knew 3 years ago what a Plantar Fibroma was? None, whilst now they all have at least heard of it and some have tried to get a better understanding of it and certainly an understanding of the different types of treatment that have been tried on me so that if someone else was to come up to them and ask they would know and this might provide relief to them. I also hope that the above mentioned forum, if it gets enough members, can have an impact as it can be a place where everyone who suffers with this can get together and we can talk, discuss and arrange to do things that help us and everyone who has the condition.

Earlier today I came across this Rare Disease Day 2012 and I am wondering if it is something for me.

It seems that this is a day that takes place pretty much across the entire globe to raise awareness of rare diseases. I wanted to check and see if Ledderhose / Plantar Fibromas were on this list so I went to http://www.raredisease.org.uk/ which directed me to Orphanet which came up with the following entry Plantar Fibromatosis Although there is nothing there at the moment this seems to confirm to me that this is on the rare disease list and took me to the US version which also had this on the list NIH - Plantar Fibromatosis (though this does state that - ORDR lists rare diseases for information purposes only and does not guarantee that a condition is rare.) 

One this that came from this is that it list research projects on this disease, the result for Ledderhose is equal to zero at the moment so I think it is fair to say that something should be done and that I should do something for Rare Disease day even if it is just to put up a poster.


On other news my foot has been hurting again today and the pain did really ramp up as the day went on. Interestingly and hopefully promisingly I am sure that at about 4pm when I stuck on the trainers with the Orthotics in my foot did hurt a bit less, whether this is actually due to the Orthotics or whether this is just a fluke I do not know but fingers crossed that they are going to help me. I am finding the adjustment hard, not wearing running trainers is odd as normal trainers are not as springy but are much warmer and dryer given the current weather conditions in the UK and as my lump hurts more when it is cold this is hopefully a good thing.

I am also looking forward to celebrating my Birthday on Friday, it will be my only birthday with a fiancée so have to make sure to make the most of it by being at work all day.