I had two rounds of radiation on my enormous knuckle pads about a year and a half ago in Virginia. Can't say for sure if it was successful. The two worst fingers seem to have progressed, but the two not so bad ones haven't become worse.

Had one round with Prof S in Hamburg in April. I had about 5 new, active nodules from an NA procedure I had in January and the radiation seems to have worked on all but one of them. I didn't go for the second round because I know I'll be needing more NA. I have rather aggressive DD and Prof S thought it would be best to wait since the next surgical procedure will probably trigger another flare which we will want to treat with another round. It's a very curious disease being so unique to the individual. It's not possible to predict what will work for you or what won't work. I'm not sorry I had the radiation as it seems to have helped a bit but I wasn't as lucky as those who have had RT put them into remission.

Hi Jolene,

This is my first time to this forum, and you are the first person I am interested in responding to. I am pursuing the possibility of RT within the next month or so. My first question to you is where are you having your treatments done? Secondly, regarding your comment about "radiation is radiation." I don't know if that is true or not. I am finding out as I contact clinics all over the world that everyone seems to have a different protocol for RT. Along with a different opinion as to how successful the treatments may or may not be based upon that protocol. One thing I am finding is the variation between treatments being from 8 weeks to 12 weeks. Along with the amount of area treated. In your case it appears that a lot of area was treated.
I hope that things only improve for you! I know exactly how you feel when you say you wish this nightmare would end! And I have only begun.

Nan

Hi Jolene,

Thank you for your reply! I have been hitting the research hard for about a month now. Reading as much as I can. Trying to not get too optimistic about the RT, nor discouraged. It's been hard. Perhaps a bit harder for me in that I have had one very miserable year or more of painful health problems. I'm sure they have contributed to the Dupuytren's, especially my rotator cuff surgery. I think in one week I was diagnosed with a tear in my rotator cuff, nerve blockage which was causing extreme muscle atrophy in my shoulder, mild carpal tunnel, and the Dupuytren's. Needless to say that was not a good week!
While focusing on recovery for my shoulder my Dupuytren's diagnosis got sidelined for a while. It's been challenging to work hard at my shoulder recovery while at the same time seeing the DD progress and add to my pain. Several weeks ago feeling completely discouraged I got on-line to see if there were any answers out there to treat this disease. That's when I came across the Dupuytren Society site that discussed the RT. I have learned a lot this past month, with much more to learn I'm sure.
I began by contacting Prof. S in Hamburg regarding treatment. He has been very good about responding. I also drove down last week from Dallas to the Austin Cancer Centers where they do RT. I have called and spoken to a few other clinics as well. Seems that everyone has a different protocol, along with costs.
I thought it was great to see that your Florida doctor is open to and following Prof. S protocol of 12 weeks between treatments. The Dr. in Austin was not open to that though I asked. Just think that someone who has been doing this a long time probably knows best.
As I slowly put this all together the best that I can I'm discovering that: the technology for RT seems to be very similar, especially with the electron beam, and simplistic compared to other forms of radiation therapy. That the actual treatments can vary as to how much, how long, and the time between treatments, but they don't vary that much. The main difference I am seeing is how qualified the Dr. is in evaluating and identifying the nodules and cords.
It is the latter that is my highest priority. If I cannot find someone I feel completely confident with I will be headed at some point to Hamburg. This is not the type of thing you get a lot of shots at!
In general, however, my biggest fear is the treatment itself. I was told by doctor in Austin that they never hear of problems with the radiation causing any kind of burning, or excessive dryness, or skin discoloration. That is not what I gather to be true by reading throughout this forum. So still doing my research!
Please continue to post how your recovery and treatments go. Hoping the very best for you!
Nan

Hello,

It has been 13 days since the 1st round of RT on the hands. The crawling burniing, tingle sensation has calmed down at least 50%.

Shoulder pain:
2 to 3 weeks before I had RT on the hands I began to experience shoulder pain. Fear that this was turning into 'Frozen Shoulder' I went to an arm/shoulder specialist Aug. 29 2013. He diagnosed me as having rotary cuff tendonitis. He wrote prescription for physical therapy. Since I was leaving for Florida for RT the following week. I decided to put off the physical therapy on the shoulder until I return home.

About 10 days after RT I notice the arm/shoulder pain subsided tremendously. I think the pain had to do with the Dupuytren disease. I think the radiation has calmed the hands down and this has somehow calm the shoulder down as well. I wanted confirmation that all was back to normal in the shoulder. I did go to the physical therapist yesterday just to find out about 'frozen shoulder" & "rotary cuff tendonitis" exercises. The physical therapist was surprised at the movement without pain. He did show some suttle exercises to do to strenghten the shoulder area.

Regarding RT on my foot.
I just completed round 2 of radiation. Right before round 2 of RT I began to experience major swelling, tingle numb sensation in the ankle and foot. I thought I had a 'new' nodule forming. That was not the case. I saw the podiatrist today. I was diagnosed with tarsal tunnel syndrome.The radiation has been working on the ledderhose/plantar fibroma. The Tarsal Tunnel Syndrome is the tibia nerve. This greatly impacts the quality of life. It limits the normal chores of grocery shopping.

To Nan, I am so sorry you have had to deal with all that. Shoulder surgery, physical therapy on the shoulder and DD. I agree, that was a very bad week.

I have shed many tears. I have spent many hours in research. I too, have been in contact with prof S. He always returned emails also.

Now I am stumped over this new diagnoses 'tarsal tunnel syndrome' Does not look to hopeful in regards to ever having a normal active life style I once use to enjoy.

Edited 09/27/13 04:10