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Recommendations?
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01/16/2018 13:48
oceanview 
01/16/2018 13:48
oceanview 
Recommendations?

Hello everyone,


I feel hopeless and helpless. I've learned so much from reading through this forum and thank you to each of you for sharing your experiences. I am a a mom with littles ones and just trying to cope. I have these nodules in both my hands, I think it is early stages. I don't have any comprehensive insurance and when I called it would be $500 - 600 for just a hand examination (not including any images) and from their perspective and from reading through people's experiences I think most likely they would just send me home for a wait and see approach.
I can do a physical and was wondering if anyone knows any family practitioners who may know about DD? Or if they have any recommendations of good hand certified surgeons that they trust?

I don't know what's going on. I have a small circular type growth on my right palm, and directly in line right under my ring finger there's a small patch of discoloration. It is very faint and not a nodule. Curious if a darker pigmentation that looks to be under the skin can turn into a nodule?
I have a bump like structure on my right PIP joint. I've been spending hours just trying to find pictures. I'm sorry if this posting isn't coherent, feeling very scared. Thank you for sharing and helping. I hope I can do the same.

01/16/2018 14:00
Stefan_K. 
01/16/2018 14:00
Stefan_K. 

Re: Recommendations?

Hello Oceanview, welcome to the forum.

Don't despair, if it is Dupuytren the good news is that you will not die from it and probably won't suffer significant pain or inconvenience. There are many much worse things that can happen to someone. While there is no cure, it can be managed.

The best course of action seems indeed to be to get a firm diagnosis from a knowledgeable practitioner, but if you can upload a photo or two, perhaps we can give a first opinion. Where do you live?

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]

01/16/2018 19:29
spanishbuddha 

Administrator

01/16/2018 19:29
spanishbuddha 

Administrator

Re: Recommendations?

Hi oceanview

Did you see our list of hand surgeons in NA including couple in Minnesota? https://www.dupuytren-online.info/NA_list_North_America.html

Stefan is right, let’s get a diagnosis and although we are not Drs a photo or two would help.

Let’s say it is Dupuytren’s, it usually progresses slowly, and most never get a contracture. But it is variable and may depend on other factors including health, age and certainly genetics.

01/19/2018 15:49
oceanview 
01/19/2018 15:49
oceanview 
Re: Recommendations?

Thank you so much for your advice and from the photos I've seen, it is unlikely it is anything else. I am in Minnesota, and so thank you for the list. I sincerely appreciate all the support. I've been massaging with bio-oil.

I'm reading more about radiotherapy. It is so hard to know when the right time is for radiotherapy because I read that nodules can grow overnight, I think I read that cords can too. If anyone did RT, how long did you wait before you had it done?

I cannot understand why there hasn't been much research - is it because the institutions can't make enough money from a cure? What can we do to help others? I found that it is carried on 4 or 5 chromosomes and it is autosomal recessive.

Thank you again for sharing.

01/19/2018 15:59
Stefan_K. 
01/19/2018 15:59
Stefan_K. 

Re: Recommendations?

Nodules and cords don't normally grow overnight, but the speed of progression varies widely. In my case I waited too long (ten years) with my right hand as like too many I wasn't aware of the RT option. However I caught it just in time for additional nodules that were still small. For my left hand I waited about a year before I had the impression that the nodule and cord in the pinky were growing, and that has stopped progression and even lead to some shrinking. My newest cord between thumb and index finger of the left hand, which I caught very early, has keep growing after the first RT series, but Series #2 will hopefully take care of it starting next Monday.

01/19/2018 16:07
allanbconway 
01/19/2018 16:07
allanbconway 
Re: Recommendations?

I thought you could only have RT once. Can you have RT on different parts of your hands at different times?

01/19/2018 16:18
wach 

Administrator

01/19/2018 16:18
wach 

Administrator

Re: Recommendations?

Hi oceanview,

you are probably right that it is difficult to make money with treating Dupuytren's. Needle fasciotomy (NA) and surgery really depend on the skill of the doctor, radiotherapy requires very long observation of a large number of patients, which is very expensive and nobody is willing to pay for. Likely the only companies making really money are those involved in collagenase (xiaflex). They can afford research and marketing.

So patients need to act themselves. Of course we can't fund research but we can support it by participating in trials and we can support each other. If you want to contribute (which would be great!!), stay with this forum and help newbies. And you might consider supporting the International Dupuytren Society, which runs this website and forum and promotes research, for example by hosting conferences https://www.dupuytren-online.info/dupuytren_conference.html and giving out the annual Dupuytren Award https://www.dupuytren-online.info/dupuytren_award.html. You can support the IDS by joining it https://www.dupuytren-online.info/address.html or by donating https://www.dupuytren-online.info/donations.html. Whatever you decide for will be very welcome and helping other patients!

Wolfgang

oceanview:
...
I'm reading more about radiotherapy. It is so hard to know when the right time is for radiotherapy because I read that nodules can grow overnight, I think I read that cords can too. If anyone did RT, how long did you wait before you had it done?

I cannot understand why there hasn't been much research - is it because the institutions can't make enough money from a cure? What can we do to help others? I found that it is carried on 4 or 5 chromosomes and it is autosomal recessive.

Thank you again for sharing.

01/19/2018 16:21
wach 

Administrator

01/19/2018 16:21
wach 

Administrator

Re: Recommendations?

You can have RT only once in the same area. No problem to irradiate another area if it doesn't overlap with the first one. Obviously, if the full hand is irradiated at the first time, then this hand is done but you then still can have RT on the other hand.

allanbconway:
I thought you could only have RT once. Can you have RT on different parts of your hands at different times?

01/19/2018 16:39
Stefan_K. 
01/19/2018 16:39
Stefan_K. 

Re: Recommendations?

I would clarify and nuance this a little:

From what I have seen, in the typical protocol you have two series of radiotherapy treatment, each with 3 gy (Gray) per session 5 days in a row, for a total of 30 gy with typically 6 - 12 weeks between the two series.

Most doctors won't go beyond 30 gy per treated area, as that is the dosis which is considered safe. But it is not completely excluded to go beyond, if you find a doctor prepared to do so in your particular case, should that be necessary. That should be a well justified exception though.

01/19/2018 23:04
scumble

not registered

01/19/2018 23:04
scumble

not registered

Re: Recommendations?

allanbconway:
I thought you could only have RT once. Can you have RT on different parts of your hands at different times?
Yes, apparently. If you go to 'Treatment' at the head of this page, then 'Radiotherapy' then 'Overview' the 2nd para. stresses the importance of a physician in identifying the precise sites on either hand to be irradiated, partly in order that undiseased areas are not irradiated and so may be treated later if the disease occurs there.

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