Friday, 12 July 2013

Interview with Steve Crabtree an experience Dupuytren's and Ledderhose patient

Today I have an interview with Steve Crabtree, this is someone who has posted a lot of information on the International Dupuytren's Society and was happy to do a very detailed post for me, he is happy to help patients. Read on to see his interview, he has strong opinions about the treatment choices but he does have a lot of experience with these conditions. 

 To anyone reading this - I've had 30+ years of Dupuytren's Contracture and then Ledderhose after, now my primary issue.  Hope my answers help and feel free to email me about anything concerning my 'journey' with these problematic (and costly) diseases - and yes, they are both a DISEASE!

1) Ledderhose is a part of a group of related conditions, which of these conditions do you suffer from?

A:  Dupuytrens on the hands, primarily on the 'pip' (knuckle pads) on both hands and twice on the bottom of my right index finger, and now on the bottom of my left pinkie near the palm (it's NEW, but will be watching it closely.

2) How long have you been suffering with these conditions and how have they developed over the years?  

A:  I have had DC for over 30 years and Ledderhose for over 20 years.  First DC on both hands, then LD on both feet (bilateral nodules primarily on the tendon leading to the big toe and a few under the toes, big toe, and now one on the SIDE of my right foot, near the small toe.  (This area was not radiated during my RT treatment, so it found a spot, about the size of a small grape.  The DC started first, then the LD developed over a number of years, mostly adding more nodules and some extra growth in some of the bad ones.

3) These conditions are often genetic, do you have a family history of these conditions? (Do you have a family tree showing this? If not do you have the details and I can make one if you like, anonymous like this one:

A:  My father and all of his brothers (5) had Dupuytren's at one time or another, all of them with the 'pulling down of fingers into the palm'.  I did not have this issue, except with one right index finger AND the knuckle on that finger (note:  Had surgery top and bottom, then had to have it again - they came right back soon after first surgery.  So far, they haven't come back.

4) What treatments have you received? (stating where you received them would be a great help)

a) For Dupuytren's?

A:  Surgery by hand surgeon(s) excising the large pip (knuckle) bumps on three fingers on each hand, with three requiring a 2nd removal.  With a different hand surgeon, large pip nodule and bottom of finger nodule that was slowly pulling my finger down.  Again, both came back, requiring a 2nd surgery.  Left me with some numbness in finger, still functional, but cannot straighten finger all the way up.  I can live with it, as long as they don't come back.  It's been 3 years, so far so good.

b) Ledderhose? 

A:  Now the LD on both feet started coming up on the bottom of one foot, painful burning is the first sign of a nodule, then continued growth.  I have about 7-8 different size nodules attached to the main tendon and underneath the toes on the big toe pad and middle toes (large growth under middle toes, appears to be like a bunion, but it is a nodule.  Now, I have researched extensively, and I have been to about 14-15 doctors about my feet.  ONLY ONE Dr. had heard about DC and LD, but even he had never SEEN a case.  All the others had never even heard of Ledderhose, but knew a little about DC.  IMPORTANT!!  After a lot of research, SURGERY on the bottom of the feet IF you do have Ledderhose is NOT recommended.  I have NEVER read or heard of a successful surgery on the feet, only HORROR stories about the infections, rate of recurrence before healing! and, damage to nerves, tendons and some ending up losing the entire plantar fascia.  DON'T CHOOSE THIS OPTION!  

Instead, the answer is RT (Radiation Therapy).  I had RT in Oklahoma City at OKC Oncology with Drs. Herman and Mathison.  Locations in Europe on Dupuytrens International website (the moderator is Wolfgang) and for US, as to the Dr. and location that performs RT for ledderhose.  I had a week of 7 treatments - it is painless, quick and SAFE - only some redness and tingling that goes away.  RT for me was done on all of the bottom of both feet.  It was explained to me by Dr. Herman that the nodules of LD are similar to tumors in the way they replicate (get bigger, add new nodules).  RT 'kills' a chromosome in the nodule, preventing the growth current nodules and (IMHO) preventing 'new' nodules to appear.  It has been 4 years since I had RT and only one new nodule has appearing on the SIDE of my right foot.  Being on the side is not as bad as the bottoms of feet.  However, Dr Herman said if the current nodules stop growing, become a bit softer, and no new ones appear?  Then the RT was a success.  Sometimes, they will go completely away, but not in my case.  Before RT, I had injections, creams, and cortisone shots that didn't do much of anything - I think they all aggravated the nodules!  NOTHING but RT worked good for my LD.  Surgery for the hands is OK & safe - but a big NO for surgery on your feet.  Never.  It's a tough situation, but the BEST you can do as of today, is Radiation Therapy for LD. 

5) Are you currently satisfied with any of the treatments you have received for either 

A:  Yes.  Surgery for my hands has been successful and my hand surgeon(s) explained the DC could come back.  It sometimes does.  That's just how it is.  As for Ledderhose, yes I am satisfied with the outcome.  I still have pain in both feet (dependent on what activity and how much stress I put on my feet), but the RT STOPPED any new ones (except the one on the side of one foot) and stopped the growth of the current nodules I still have.  I go to a Pain management Dr. and am prescribed Schedule III pain medication (USA rating for pain meds).  In Europe, I believe you can get codeine or some equivalent to take when you have done activity that still creates sharp pain during, or pain the morning from the activity and stress you put on feet (like hiking, running, etc) the day before.  Keep in mind - the RT really helped, as I am positive that the nodules would have gotten bigger and, maybe, more of them!  Not pain free, but MUCH better to take pain meds than the other option of losing a foot!  So, yes, I'm satisfied with my treatments.

6) Have you found any resources that have been helpful for with understanding and getting treatments for these conditions? (e.g. IDS forum)

A:  The International Dupuytrens Forum is the most accurate and correct.  It led me to finding Dr. Herman and getting Radiation Therapy.  There are other sites and medical journal findings, but most of them end up with the same conclusion:  Not sure why it develops, except the DC and LD are HIGHLY Genetic in nature.  Almost 100% of people who get these are of Northern European descent.  That is about all that is known.  Forget the suggestions to alcoholism and other testing being associated with these.  I do not find conclusive evidence on alcohol or any other associative activity causing the development of these diseases.  

So, if you get DC on your hands, IMHO, get surgery by a good hand surgeon.  The sooner, the better.
If you get LD on your feet - DO NOT EVER - elect to get surgery.  RADIATION THERAPY is HIGHLY recommended.  In Germany, their is a Dr. you can find on the Dupuytrens Intl. website.  He, I believe, pioneered the RT for LD and is reasonable with the cost of his treatment there (MUCH cheaper in Europe than in the US!!!!).  Then, after LD, if you still have pain, go to a pain Dr. and get prescribed some pain medication so you can continue ALL of your activities like golf, running, all sports, rock climbing, whatever you like to do.  Then, you don't have to worry about the pain before, during or after stressing your feet.

I hope I have helped answer some questions here.  If you want, you can email me anytime - I'll give the most accurate answer I can, and to help you from my extensive (and current) journey as a sufferer of both Dupuytrens and Ledderhose diseases.

Steve Crabtree