| Lost password
757 users onlineYou are not loggend in.  Login
R/T Vs. Hand Doctors
 1
 1
08/31/2013 16:41
Lowell 
08/31/2013 16:41
Lowell 
R/T Vs. Hand Doctors

I have been to three hand doctors who use alternative treatments besides surgery. None of them had anything good to say about the effectiveness of radiation. I.e. , don't waste your money on it!.......ONe of them said don't do anything, you are not at a stage for treatment (and you may never need it possibly),.....another one said come back in 4 months and will see how they look. My conclusion about hand doctors is that none of them want to deal with you until you have an actual contracture, and any other treatment before that will do more harm than good.

Is that correct, about hand doctors, and what they say?

Also....I have been to two radioligists who have said it will help, from a little to perhaps a lot. I have had several nodules in both hands for 4 years but were stable, and not much of a problem.....but just this past 3 months though, they got worst, and one got harder and larger. There are some cords starting to develop and one finger I feel a distinct uncomfortable stretch (my right hand ring finger)....I don't like how it feels at all, and at the base of that finger in the palm I have a harden nodule and it hurts.

Both my hands can still lay flat on a table , though uncomfortable (and I have no contracture yet). The radioligist said, that he thinks I am still at a stage where the radiation will do good. I just don't know about all of this, but I have to do something I feel before it gets even worse.

He also said that he hopes I do not have any finger involvement because that will be harder/tricker to treat with radiation. He is going to do a non-contrast and constrast MRI to see what is going on and where....and then marry a cat scan (as he puts it) to the MRI for mapping out a treatment.

Does this sound like I am going down the right road?

Concern Point 1 as the doctor states: There may be a chance of cancer of my hands down the road, 1% I think he said, and he added, hands don't generally lend themsevles to cancer.

Concern Point 2 as my doctor states: The tissues of my hand will probably be altered and may get thinner in my palm


NEED FEEDBACK, HELP, this is too confusing: Doctors telling me don't do anything, you might make matters worse, wait till it gets worse, other Doctors telling me, treat it as soon as possible or it will get worse.

08/31/2013 20:30
lori 
08/31/2013 20:30
lori 
Re: R/T Vs. Hand Doctors

Lowell,

That is the problem with DD. It's not like a broken leg. Treatment isn't obvious. I went to a hand surgeon for diagnosis who said not to do anything until I "couldn't take it anymore" Then to come back for surgery. In some ways I was lucky. My DD was aggressive and my hand was changing every week. I went from red spot to a nodule in a few months. I then developed a 4 inch cord in less than 2 months. This all happened in less than 6 months. With it changing so rapidly I felt like I was in a race against my hand. Would it have stopped progressing? Maybe...maybe not. When my middle finger began to look and feel like it was beginning to contract I felt like I could not wait anymore to debate treatment or no treatment. My window for using RT was diminishing. I felt like if RT did not work I had not lost anything. If it did not work then I could then play a waiting game and see if my finger contracted. If it contracted I then had other treatments that might work. What I did not want was to feel like I had blown the opportunity for RT treatment. RT was the least intrusive, least painful, and had the best chance of working at my stage.

Each of us is different and seems to have a totally different progression of RT. We all had to make the best decision for ourselves. There is no right or wrong decision, only the one that is right for each of us. I personally would choose RT and stop the progression. I did not want to wait and see if my finger would stop contracting. I felt since my hand was changing so rapidly that it was not going to stop and contraction was going to occur.

RT stopped the progression. My nodule disappeared, the cord retracted into my palm and is hardly noticeable. All my pain and discomfort went away. My middle finger contracture stopped where it was at the time or RT. For me it was the right decision and it worked.

I was slightly concerned about cancer, but felt like 1% was nothing to worry about.

I have not had to my knowledge thinning of the skin in that area. I have a little dry skin in the treated area and that is all.

Edited 08/31/13 23:33

08/31/2013 21:39
Lowell 
08/31/2013 21:39
Lowell 
R/T Questions

thank you Lori: I feel exactly as you had, feeling a race against time before the R/T window closed. I am concerned about my fingers too (don't know if I have any nodules but if I do, the Doctor said that will be hard to treat).

I am going to get R/T, but not sure when. The Doctor wants to do a Contrast/non contrast R/T and cat scan first. That is not until Sept 10 and 12. I can only do one hand at a time because they can't put enough contrast dye in me to do two hands at once....(not happy about that).....but anyway I am just hoping my condition does not get any worse over the next 3 weeks or so before I start radiation because I feel at the end of my window I think. I don't know what to do with myself, except wait. I am at the mercy of the institution's scheduling at Univeristy of Miami. I hope The Doctor knows what he's doing, I am his first patient ever with this condition and subsequent treatment plan....it looks like he is going to use the protocols from Dr. Seeg.....in Germany----he printed them out for me.

I have one hard nodule I am worried about that just developed with the last 2 months, and I feeling and seeing a couple of cords developing along with a uncomfortable streching feeling.

However, I thought this might be good, because I thought I read that if the disease is active (if this is considered active), then R/T will be more effective.......IS THAT RIGHT?

ANOTHER QUESTION: Assuming I just caught the window right, is it a case that I must complete two sessions 8 to 10 weeks apart to catch the window or is it suffiencent that I at least started the first treatment?

thanks

09/02/2013 15:44
lori 
09/02/2013 15:44
lori 
Re: R/T Vs. Hand Doctors

However, I thought this might be good, because I thought I read that if the disease is active (if this is considered active), then R/T will be more effective.......IS THAT RIGHT?

From my understanding RT is only effective as a treatment when DD is active.


ANOTHER QUESTION: Assuming I just caught the window right, is it a case that I must complete two sessions 8 to 10 weeks apart to catch the window or is it suffiencent that I at least started the first treatment?

When I refer to a window of time, I mean that your DD is active and that contracture has either not started or is just beginning to occur. RT is mainly for active DD which includes nodules and the beginning of DD. RT might not help cords. It did with mine but that is not always the case. As long as you start the treatment while your DD is active then you would be what I call inside the window of time that RT is effective.

Lori

09/02/2013 17:07
wach 

Administrator

09/02/2013 17:07
wach 

Administrator

Re: R/T Vs. Hand Doctors

Hi Lori,

defining a "treatment window" is not trivial. If one could define a treatment window for RT then it would be probably +/- 1/2 year anyway. So don't worry about it. The rule is that early treatment is more effective than late treatment and and treating within a year after the nodules started or the disease became agressive again is best. Maybe within 1/2 year would be even better? But there are no data beyond the those one http://www.dupuytren-online.info/radiation_therapy.html. So you can only make rough guesses anyway.

The same holds for the type of equipment used for RT. There are no data which is better or worse for Dupuytren's. So why not use those that are available?

Wolfgang

lori:
However, I thought this might be good, because I thought I read that if the disease is active (if this is considered active), then R/T will be more effective.......IS THAT RIGHT?

From my understanding RT is only effective as a treatment when DD is active.


ANOTHER QUESTION: Assuming I just caught the window right, is it a case that I must complete two sessions 8 to 10 weeks apart to catch the window or is it suffiencent that I at least started the first treatment?

When I refer to a window of time, I mean that your DD is active and that contracture has either not started or is just beginning to occur. RT is mainly for active DD which includes nodules and the beginning of DD. RT might not help cords. It did with mine but that is not always the case. As long as you start the treatment while your DD is active then you would be what I call inside the window of time that RT is effective.

Lori

09/02/2013 18:44
Metzie 
09/02/2013 18:44
Metzie 
Re: R/T Vs. Hand Doctors

Hello,

The truth of the matter is, there is no-cure for either DC, or LD. Many people go with different treatment, however, regardless of how you treat it, the disease just comes back, sometimes slower, sometimes faster. There are several different treatments for the disease, but the end result, unfortunately, is always the same. and it returns again. I had surgery for Plantar Fibroma (Ledderhose Disease) on my right foot, but it is coming back. I haven't had anything done to my hands yet, but they are becoming worse as time goes by. I haven't decided what treatment I will do for my hands yet, but I don't think I will have surgery on my foot, despite having a pleasant experience with the Surgeon, and surgery. Being this Disease reoccurs, it's a matter of how you want to go about it, and how many times you want to do it. Just go with your gut, and what you feel the most comfortable with, because there is no-way to rid yourself of the Disease, once you have it, unfortunately. Best wishes to you, and best of luck to you....Metzie.

09/02/2013 20:32
Jolene 
09/02/2013 20:32
Jolene 
Re: R/T Vs. Hand Doctors

Lowell:
I have been to three hand doctors who use alternative treatments besides surgery. None of them had anything good to say about the effectiveness of radiation. I.e. , don't waste your money on it!.......ONe of them said don't do anything, you are not at a stage for treatment (and you may never need it possibly),.....another one said come back in 4 months and will see how they look. My conclusion about hand doctors is that none of them want to deal with you until you have an actual contracture, and any other treatment before that will do more harm than good.

Is that correct, about hand doctors, and what they say?

Also....I have been to two radioligists who have said it will help, from a little to perhaps a lot. I have had several nodules in both hands for 4 years but were stable, and not much of a problem.....but just this past 3 months though, they got worst, and one got harder and larger. There are some cords starting to develop and one finger I feel a distinct uncomfortable stretch (my right hand ring finger)....I don't like how it feels at all, and at the base of that finger in the palm I have a harden nodule and it hurts.

Both my hands can still lay flat on a table , though uncomfortable (and I have no contracture yet). The radioligist said, that he thinks I am still at a stage where the radiation will do good. I just don't know about all of this, but I have to do something I feel before it gets even worse.

He also said that he hopes I do not have any finger involvement because that will be harder/tricker to treat with radiation. He is going to do a non-contrast and constrast MRI to see what is going on and where....and then marry a cat scan (as he puts it) to the MRI for mapping out a treatment.

Does this sound like I am going down the right road?

Concern Point 1 as the doctor states: There may be a chance of cancer of my hands down the road, 1% I think he said, and he added, hands don't generally lend themsevles to cancer.

Concern Point 2 as my doctor states: The tissues of my hand will probably be altered and may get thinner in my palm


NEED FEEDBACK, HELP, this is too confusing: Doctors telling me don't do anything, you might make matters worse, wait till it gets worse, other Doctors telling me, treat it as soon as possible or it will get worse.

Lowell,
what oncologist are you going to? Where are you located?
Personally I think it is awesome your doctor is going to do a non-contrast and constrast MRI to see what is going on and where....and then marry a cat scan (as he puts it) to the MRI for mapping out a treatment.

That is the type of doctor I want to treat me. This is a tricky disease. Therefore the more information your doctor gathers on you regarding what is going on in the hands and feet will help aid in the treatment and radiation.

One person I know just return to the states from Germany. She began RT with Prof S. He was able to detect the disease in her foot just by touch. It has not become visible to the eye yet. She stated she has had the tingle sensation and was not surprised. Prof S. did radiation on both her feet and hands. The hands are in such an early stage that is not visible to the un trained eye.
Unfortunate for me I don't have anyone to travel out of the country with to be able to be treated by prof S. My goal is to have MRI done 1st on hands and then be treated.

09/02/2013 21:10
spanishbuddha 

Administrator

09/02/2013 21:10
spanishbuddha 

Administrator

Re: R/T Vs. Hand Doctors

Metzie:
Hello,

The truth of the matter is, there is no-cure for either DC, or LD. Many people go with different treatment, however, regardless of how you treat it, the disease just comes back, sometimes slower, sometimes faster. There are several different treatments for the disease, but the end result, unfortunately, is always the same. and it returns again. I had surgery for Plantar Fibroma (Ledderhose Disease) on my right foot, but it is coming back. I haven't had anything done to my hands yet, but they are becoming worse as time goes by. I haven't decided what treatment I will do for my hands yet, but I don't think I will have surgery on my foot, despite having a pleasant experience with the Surgeon, and surgery. Being this Disease reoccurs, it's a matter of how you want to go about it, and how many times you want to do it. Just go with your gut, and what you feel the most comfortable with, because there is no-way to rid yourself of the Disease, once you have it, unfortunately. Best wishes to you, and best of luck to you....Metzie.
For many people, perhaps the majority, DD and LD may be asymptomatic, and even those who get some symptoms most will not progress for DD to a contracture, and so no treatment is needed.

09/03/2013 12:14
jrguettler 
09/03/2013 12:14
jrguettler 
Re: R/T Vs. Hand Doctors

Lowell,

Your experience mirrors mine very closely. My Duputrens was identified my my sister-in-low who is a hand occupational therapist in early June. I have one node in my left hand currently that has shown up in the last 6 months.

I went down the path of visiting my doctor and then a hand specialist. The hand specialist (surgeon) said there is nothing to do but wait until it gets worse. I then asked about RT. He said it wouldn't be worth the risk of developing cancer later in life. So he was explicitly opposed to it.

Given than my grandfather had it and my uncle has had surgery on both hands for it, I wasn't willing to wait until it gets worse. I contacted Dr. Crimaldi in Charlotte, NC and set up an appointment. He was awesome. He referred me back to a colleague (Dr. Anderson) in Raleigh, NC where I live. Dr. Anderson was at Dr. Crimaldi's practice for 1.5 years and then moved to Raleigh.

Dr. Anderson had treated one patient previously so was very willing to take me as a patient. He scheduled an MRI with contrast on my hand before treatment to make sure they understood the affected area. The radiologist then requested an ultrasound to view the hand better. With the ultra sound he was able to align the sensor and see the node and where it was extending down to attach to the tendon in my palm. It was very interesting to see!

Based on the MRI and ultrasound Dr. Anderson set up the RT sessions last week. I have completed the first 5 day protocol and will return in October for the 2nd week. I haven't noticed any side effects with my palm after the first week.

 1
 1
surgery   contracture   non-contrast   treatment   different   disease   treatments   anything   unfortunately   dupuytren-online   radiation   suffiencent   Germany----he   uncomfortable   understanding   effectiveness   because   effective   Doctors   progression