I just gave you the cost of my RT and noticed that I mistyped Dr. Tripuraneni's name. My hands were full of nodules. I had cords released by NA before RT. I notice a significant difference in the nodules with less tightness across my thumb-pinky span. I also don't feel the itchiness anymore that, to me, indicated active Dups. RT is most likely to be effective IF the Dups IS ACTIVE. I am pleased. I believe I make up part of the % of success with RT for Dups. If I had known about RT and gotten it a year earlier, I probably would not have needed NA. Flora
Image of my hand before radiation. As you can see I have a nodule and cord in the middle of my hand going towards my middle finger.
Thanks, Lori, for posting the pictures of your hand prior to radiation. I fear mine are about 20 times worse, sigh. The first picture below is of my right hand--just 6 weeks after my second NA procedure and look how bad it is. This is the hand I'm going to start with for RT hopefully within a week or two.
The next two pictures are of my left hand on which I've never had any treatment. I'm going to have NA and then hopefully, 3 days after that-- to get a better chance at stopping the DD-- start RT. The picture from the back doesn't really show how bad the contractures are or that it's now affecting 4 fingers (two of them in just the last month).
After reading Lori's comments in another thread, I came back to this one which I had not read before....Moondanc...I look at your pictures and the third one shows that my hand is almost identical to yours...I wanted to upload pictures but I have to find a way to do it. Did you have your RT treatments since you posted here? If you did....can you post more pictures?
I had RT in November with Dr. Tripuraneni in La Jolla and so far the results are good and I think it continues to slowly improve...I did however have so many nodules that any improvement is good. Half of my nodules are smaller and softer, but one very large nodule in the middle of my palm remains hard. I can definitely say that I can stretch my hand better and the span between thumb and small finger is much bigger. I have a follow up appt. with Dr. T. on the 30th of this month and I'll see what he says...
Has anyone had a second round of RT on the same hand? Dr. T. said that he did for a couple of his patients. I'm going back to him in March to do RT on the other hand (as follow up to NA), so I could do it then...
Hi Luba, I'll try to remember to post more pictures one of these busy days. Since that picture was taken I had NA--about two hours of it--on my left hand on 10/19 and then I had RT for 5 days starting 10/26. I'm not due back for an evaluation on the left hand for a couple more weeks. I did have a somewhat severe reaction to the RT on this hand (I also had RT on my right hand but it was a couple months after the RT--I just postponed my appt. for an eval. on that hand until the first of the year). My radiation burns--or "reaction" as the docs like to say, were most severe in the "lower" or sunken areas that remained on my palm. They were very , very red, itched so much I could hardly stand it for more than a week and a half and then the itching finally stopped and my hands starting peeling in layers over the next month just as I suppose you would with any burn. Because my RT was SO extensive on my left hand, I haven't decided whether to do a second round. I also had two NA procedures on my right hand this year--approx. 3 months apart, same finger--it didn't work the first time--I'm also not sure whether I'll have RT again on that hand. (Dr. Chang)
Attached are pictures of my hand from July 2009 before any RT and now 6 months after my last RT in August. This 2nd picture was taken today. Hopefully you can see the differences and the vast reduction of the cord and nodule. My only side effect has been a little skin dryness that you maight be able to see in the second picture.
Has anyone that had rt wish they hadn't did it or has anyone had rt and it didn't work and ended up having na after you had rt. I'm very curious because i have a doctors appointment in the morning who does rt. So i need all the info i can get
I DO NOT regret getting RT at all. NA before RT to flatten hand, but not after. It is conceivable that I would have to have NA in areas not radiated because that may start developing nodules or cords. I watch the unradiated areas and my other hand like a hawk and will get RT on those areas if I need it, BEFORE it starts to contract to the point of needing NA.
It seems consistently recommended that RT be done on areas of "active" Dupuytren's. How do you know it is active? It's a little different for different people. For me, it was itchy and weird sensations in the tissue. I just knew. For others, they take pictures or measure nodules and cords to see that it is progressing. I wish I had that documentation just to see the progress, but I didn't.
I got a very low radiation dosage that worked for me - electron radiation, 1.8gy for 5 consecutive days and the next week another 1.8 for 5 days for a total of 18gy. I don't expect that I will need it again, but, with that low dosage, I could get RT on the same area again if needed. I would opt again for the lowest dosage that is anticipated to work.
Email me if you have specific questions about what to ask the radiologist. Where are you going for your RT consultation?
Thanks flojo for the info because every little bit helps. Well i went to my appointment today and it went very well. I was there for a hour and i had loads of questions for him. I had already spoke to this doctor on the phone twice before my appointment. He has agreed to do rt on both of my hands and i am so excited. This doctor has never did this before on dd but he did alot of reading and calling other doctors that has treated dd in other states. It felt very strange being in a doctors office that only does rt on cancer patients. But anyway he says it looks good to do this treatment because i have only had dd for 7 months and no contraction. He will be doing the whole palms so hopefully this will do the trick. This forum has helped a whole lot in making my mind up on what to do. I knew from the very beginning i did not want surgery. So i thought i would do na but with no contractures i just kept reading everyones good luck with rt. Had a hard time finding someone in my area but started to call around and there he was. So i go in Monday for the map drawing on hands so they can make something for my hand for rt . And somewhere about the first of March i will do 2 weeks -5 days each time. HE will be using 1.8gy or aliittle more. The doctors name is Dr. Scott Cozad and the clinics name is Therapeutic Radiologists Inc. and he is in Liberty Missouri. I hope this might help if anyone else is in this area and needs to check into rt. Take care
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