Thursday, 5 April 2012

DD and LD radiotherapy patient- ChristL

So today I have an interview with another patient that I contacted on the Dupuytren's online forum called Christl. They suffer from both LD and DD and have had radiotherapy for the DD and also a family history. See below for the experience they had.  

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

A: LD and DD

2) Do you have a family history of the disease? If yes how prevalent is it?


A: Yes, mother, sister and her son. All have nodule without progression or contracture.

3) How long have you been symptomatic? 
A: Had small nodule for many years -thought it was a callus- below right ringfinger, had cycling accident, hurt right wrist, 6 month later noticed small contracture on ringfinger with nodule getting big, 2 month later nodules appeared on left hand, nodules appeared very fast, very aggressive. By the time I had RT I had 5 nodules on left hand, no contracture.

Checked my feet - read on Dupuytren site sometimes people with DD can have LD -and sure enough, each foot has a nodule. Had no problems then, now I have intense burning and tingling after walking, nodules appear to have grown a bit, are somewhat harder, after long walks my feet go crazy, very intense burning/itching. Nodules are 20mmx10mm each, , nodules do not hurt, but I can feel some tightening in my soles. Sometimes I get this sharp, short stab in my heel, and when I walk seems the balls of my feet are stinging. Had some very intense painful stab in the ball of my foot for just a few seconds happening 3 x so far. I also feel that my tendon above the nodule is getting harder, not sure what that is. Maybe it's just my tendon that I feel. Feet sometimes appear to be red. No pain at rest. Feet do not like shoes any more, prefer to be barefoot.


There is also a new nodule growing out of the side of my foot, above my heel. Not sure if that is LD, assume it is. 

4) What treatments have you received? 


A: RT both hands
None feet

5) How successful were these treatments? 


A: Progression in both hands has stopped -it has now been 4 month since last RT treatment.

6) You said you had radiation treatment, what was this experience like? 


A: Positive experience, 5X3Gy, 2 X. Each hand got 30Gy, 3 month apart.


Cost self-pay, @ $ 3,800 per trip -includes treatment, lodging, travel, food - Travel USA to Germany
No problems, dry skin after RT, no strange feeling in hands any more after RT, my hands felt like they were invaded by aliens -crawling, tingling, severe itching -. Pain gone after RT. Nodules are very small after RT. Cord still present and no change.

7) Are you currently satisfied with the treatment that you have received?


Very satisfied. Are in wait and see mode with my feet. 


Thank you Gary for all you do. 
Christl