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Big Questions About R/T
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04/16/2014 19:37
Lowell 
04/16/2014 19:37
Lowell 
Big Questions About R/T

I have had the two treatment session outlined by the Professor in Germany here in Miami,Fl 12 weeks apart. It has been 4 months since my last treatment in December. I must say that I am quite dissapointed in the results. If anything my hands feel worse and there are new nodules and more pronounced cords that developed.

I don't know if it was just coincidence because the DD was going to progress anyway, all I know is that things are worse. My thumbs now hurt as well, as before they did not. I have DD in both hands and it is very very frustrating to understand what is going on, espcially since most of my nodules are sore 24/7, my whole hand aches all the time when I move my fingers, and burning and sharp sensations happen constantly intermittantly all the time from my palm to my thumbs to my fingers.

Oddly enough I barely if any contracture, if any at all, but I can feel all my fingers and thumbs having a weird uncomfortable rubber band kind of stretch feel when I open my hands. I don't like this feeling at all, I can only assume they are cords all over the place that have formed

So, I guess I am out of options, ....help, if anybody has any suggestions! As apparently DD does hurt, even though most all say it should not!

Alternative therapy, ---has anything worked for anybody? I see all kinds of desperate therapies listed (ultrasound, cold laser, accupunture, wellwave machine, graston technique, etc etc......

I am apparently not a candidate for xillaflex injections or the needle thing, nor do I want to get there! That is why I opted for radiation, in spite of Hand Doctors (every single one I have seen) that were appalled I had R/T done.

I have been to 7 hand doctors, and they are all useless to me and effectively throw me out of their office because I virtually don't have any contracture and all they are interested in is surgery ......yet I have DD all over the place, ----base of thumbs, in-between thumb and forefinger, in my palms, and in my fingers.....I can feel it everywhere, but Doctors are pretty much unsympathetic and uninterested in explorring my condition.

My latest big question is the following; Are my hands supposed to be inflamed from the R/T treatments this far out from my last R/T treatment 4 months ago..... My hand therapist says I have lots of inflamation at the base of my fingers and thumbs and in my palm......and I can feel it, and see the puffyness they are referrring to.

How do you deal with swollen/inflamation? Am I suppose to have my hands swollen foreever.........? what can be done?

I have tried Advil, Celebrex, Aleve, various lotions,.......and nothing helps.

thanks

final note: I am now wondering if having R/T was a big mistake! Could this be causing all this?

04/17/2014 01:49
JohnG 
04/17/2014 01:49
JohnG 
Re: Big Questions About R/T

Lowell:
I am now wondering if having R/T was a big mistake! Could this be causing all this?

I've read the clinical test papers by the Germans.

The treatment doesn't stop the disease for every patient.

The radiation does alter the skin somewhat. But I don't recall reading about side effects like those you mention, four months after treatment. If the alternative is surgery, the side effects for RT are generally vastly preferable.

Sorry that you're having an unpleasant experience.

Edited 04/17/14 04:53

04/17/2014 06:34
spanishbuddha 

Administrator

04/17/2014 06:34
spanishbuddha 

Administrator

Re: Big Questions About R/T

I have posted several times on here that after I had my first hand treated with RT, I was not at all convinced it had helped, until maybe more than 6 months and even up to a year later, when my hand started settling down. I did not have the symptoms you have, but since I play tennis with the treated hand, used to ice it in the evening. Every evening! Also since I play piano, I used to soak it in hot water every morning. Now it has settled down, nodules and cord quite soft, just a couple of odd skin changes and the hint of a new nodule from an OCD examination.

So, not sure what to suggest really. A few others have posted their disappointed that RT has not helped, so it does not always work for all. A little more patience and tackle the inflammation perhaps.

05/12/2014 15:03
Diver 
05/12/2014 15:03
Diver 
Re: Big Questions About R/T

I just completed a course of RT for my right hand and did not experience any skin disruption. The first week I did apply aloe gel each day following the treatment, but did nothing during the next course six weeks later so I don't believe the aloe made any difference. I noticed a modest softening of the nodules four weeks after the first course but no improvement in the moderate inward curvature of my palm. The radiation oncologist said he tends to see gradual improvements over 2-6 months following RT. At present the only problem I'm experiencing is some limitation of my grip as you'd expect since I can't flatten my palm. Unfortunately, I wasn't able to locate a facility in my area that offered RT for DD until two years after my initial diagnosis, so I think the most I can hope for is to halt or limit the progression of the disease. Certainly is disappointing that at least some hand surgeons in this country are not even aware of RT as a treatment option for early stage Dupuytren. I'll post an update at the point I'm seeing the results of my treatment.

05/13/2014 01:20
Jolene 
05/13/2014 01:20
Jolene 
Re: Big Questions About R/T

Hello you are not out of options. Perhaps when you had RT you were not in the proliferating fibroblasts stage. Were your nodules growing at the time of RT? Also I have spoken to Prof. Elizabeth Weiss. She is a German
Oncologist in Virginia. She has stated that there have been times she administered RT a 3rd time with great results after the 3rd round. Perhaps you might shoot her an email. She replies promptly. Her info is in the clinic section of this site. Anyways just a suggestion

Edited 05/13/14 04:21

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