| Lost password
466 users onlineYou are not loggend in.  Login
Radiation Yes or No Doctor states it does not work
 1 2 3
 1 2 3
08/28/2013 19:10
Jolene 
08/28/2013 19:10
Jolene 
Radiation Yes or No Doctor states it does not work

Hello,

Would love your input.

So how do I find out for sure if I am at the stage for treating?

I just return from Dr. Kay Kirkpatrick in Atlanta Ga. She confirmed I am in the very early stages. She stated radiation does nothing for DD. She said the USA is not keen on radiation like the other countries.

When I told her I had the crawling burning sensation she stated no research for DD states that to be a condition. She then x-ray my thumb to rule out carpel tunnel or arthritis. She treats with NA.

I also asked for MRI. She said it would not show anything.

I explained to her that I have LD and have been treated with RT for that. It has been a success and I have 2 weeks left before I get the 2nd round of RT. I also experience the same crawling burning sensation on the LD.

In the end she did right a prescription for me to give to my oncologist in Florida stating that I am in the early stages. I asked if she knew and oncologist in Ga who would do radiation and she said no. She asked me to keep her updated on my treatment plan. She was very pleasant and wanted to out rule anything else.

So my question to everyone is:

1. How am I to determine if I am at the stage for RT? Apparently I am going to have to convince the oncologist. I do experience the crawling sensation. My guess is it is active.

2. Do I listen to Dr. Kay Kirkpatrick and not attempt radiation since she says it does not work for DD?

3. Who out there has had radiation for DD?

4. How successful has radiation been for you? (please provide details)

5. How do you make sure ALL the diseased area is radiated?

Edited 08/28/13 22:16

08/28/2013 19:54
lori 
08/28/2013 19:54
lori 
Re: Radiation Yes or No Doctor states it does not work

So how do I find out for sure if I am at the stage for treating?

I had a crawling sensation in my palm, tingling, achng, pain and a general weakness in that hand. I had a visable nodule that continued to grow. If yours is changing then document the changes. I went to a surgeon that diagnosed DD and I took the diagnosis to the oncologist. I had no problem convincing him. Unless it is visably changing only youwill know. RT is for nodules and early stages.

1. How am I to determine if I am at the stage for RT? Apparently I am going to have to convince the oncologist. I do experience the crawling sensation. My guess is it is active.

2. Do I listen to Dr. Kay Kirkpatrick and not attempt radiation since she says it does not work for DD?

RT definitely works. I was treated 4 years ago and in remission. If you go to my name and look up "from MRI to now" you will see pictures of my hand before and after RT. It has worked so good that there are actually days when I do not even think about my DD and hand. 4 years ago I could not imagine having a day not worrying about it.

4. How successful has radiation been for you? (please provide details)

My nodule stopped growing, the cord recessed into my palm. Over the first year after RT I regained most of the strength back in that hand. I still have problems when I grip something tight for extended periods of time. All my pain went away. I have had no new DD in that hand.

5. How do you make sure ALL the diseased area is radiated?

Dr. Crimaldi did an MRI and was able to see the nodule and cord. He treated that and the surrounding area by a perimeter of about an inch. He obviously got it all since I have not had any new DD in that area or that hand.

Lori

08/28/2013 20:20
callie 
08/28/2013 20:20
callie 
Re: Radiation Yes or No Doctor states it does not work

I still haven't decided whether or not my RT from 7 months ago was successful. I will know better in six months. It feels like the cord in my little finger is continuing toward contraction. The nodules in the web of thumb and forefinger are still there.

08/28/2013 22:33
moondanc 
08/28/2013 22:33
moondanc 
Re: Radiation Yes or No Doctor states it does not work

callie:
I still haven't decided whether or not my RT from 7 months ago was successful. I will know better in six months. It feels like the cord in my little finger is continuing toward contraction. The nodules in the web of thumb and forefinger are still there.

This disease is so darn difficult. Not only does one have to figure out whether RT helped, one never knows at what rate the DD would or would not have progressed without RT. Extremely frustrating. I think it's the same with all other interventions also-- you don't know your disease is aggressive UNTIL it is.

Diane

08/28/2013 22:41
moondanc 
08/28/2013 22:41
moondanc 
Re: Radiation Yes or No Doctor states it does not work

Jolene:
Hello,

Would love your input.

So how do I find out for sure if I am at the stage for treating?

I just return from Dr. Kay Kirkpatrick in Atlanta Ga. She confirmed I am in the very early stages. She stated radiation does nothing for DD. She said the USA is not keen on radiation like the other countries.

When I told her I had the crawling burning sensation she stated no research for DD states that to be a condition. She then x-ray my thumb to rule out carpel tunnel or arthritis. She treats with NA.


I probably would stay away from this doctor.
1) She told you that radiation does nothing for DD-- that simply is not true
2) she told you USA is not keen on radiation--perhaps not as keen as Germany but as more and more patients in the US find out about RT and educate themselves AND their doctors, RT is bound to become more widespread
3)she essentially told you the crawling burning sensation was not a DD symptom--want to ask a few people here on the forum about that?

Just because a doctor is not aware of research or cutting edge use of certain protocols (and RT is hardly cutting edge even in the US) doesn't mean she's right. I would look elsewhere. Do you have any idea how many patients she has treated with NA or where she trained? You say you are in the very early stages-- what are your symptoms--nodules? cords?

Diane

08/29/2013 01:54
cschieber 
08/29/2013 01:54
cschieber 
Re: Radiation Yes or No Doctor states it does not work

Hi Jolene. I had radiation on knuckle pads last year which didn't improve my condition but may have stopped progression. However, after I had NA on two fingers, the DD was activated and I developed 5 or 6 new nodules which were large and painful. I went to Germany and my palms and fingers were radiated past the PIP joints. At first my hands were stiffer and sorer but after about two months, the new nodules had all but disappeared and are no longer painful. I really don't believe they would have resolved without treatment. I didn't go back for the second round because I will be needing NA again in the near future and and would like the option for another round of RT should the disease flare again.

The evidence for RT is anecdotal and maybe many who were treated wouldn't have progressed anyway but based on my experience and that of others on this forum, I believe it does work in some cases.

08/29/2013 02:15
callie 
08/29/2013 02:15
callie 
Re: Radiation Yes or No Doctor states it does not work

It is unfortunate that RT is so expensive in the U.S. It sure isn't much of a procedure.

08/29/2013 02:39
pia2some 
08/29/2013 02:39
pia2some 
Re: Radiation Yes or No Doctor states it does not work

Dr. Kirkpatrick has been my hand doctor for a while now. She was trained personally by Dr. Eaton and sits on several committees with him now. She is considered one of the experts on DC in that Atlanta/N. Georgia area.

When I last saw her we talked about radiation some. She was mainly saying that it is not really a recognized treatment for DC in the US like it is in other countries. She had not seen a lot of research and scientific proof that it had a great impact on DC. She was willing to let me pursue it if I so chose. But I know very well that my hands are well past the point of RT being effective.

I told her about the extreme itching in my palms when the disease was active and also about how they hurt. She prescribed a gel to put on my hands at those times. She didn't seem fazed when I talked about the tingling and itching. Interesting that she discounted it today.

I have seen several 'experts' in DC in the Atlanta area and Dr. K is definitely the one who seems most up-to-date and experienced. The other experts all seem to be pushing Xiaflex and aren't even doing NA. Dr. K has been doing NA after training with Dr. Eaton over 10 years ago.

~ dawn

08/29/2013 02:53
pia2some 
08/29/2013 02:53
pia2some 
Re: Radiation Yes or No Doctor states it does not work

I emailed with a cousin who has DC. Everyone on that side of the family does. He had RT in California a few years ago. He said that at first it seemed to have helped. The nodules did soften and didn't change for a few months. But within a year he had several prominent cords and quite a few nodules. So how do we know that it is really that effective? Xiaflex helped for about six months and now that finger is worse than before.

Some people are helped by RT, some by Xiaflex and NA. While someone is treated with one procedure and has good results for years, another person can receive the same treatment and have it return within months. It's really difficult to know which option to go with, you know?

If you do RT very early on, are you then limited to how many more times you can use RT? Just curious.

~ dawn

08/29/2013 03:04
callie 
08/29/2013 03:04
callie 
Re: Radiation Yes or No Doctor states it does not work

Dawn,
You point out what I have thought all along. It is difficult to know for sure if a procedure is effective because the Dupuytren's might have gone dormant on its own. I had nodules at the exact same time on both hands. One hand contracted to 90 degrees in about 18 months, while the other hand went dormant for over a decade.

My doctor said I could repeat RT a year later if needed, but that is controversial in some circles.

 1 2 3
 1 2 3
Radiation   treatment   treated   nodules   successful   radiologist-oncologist   Kirkpatrick   dupuytren-online   disease   symptoms--nodules   experience   patients   sensation   progressed   effective   Dupuytren’s   crawling   contraction   radiation--perhaps   oncologist