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Intro - what next?
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01/19/18 18:12
doctorann 
01/19/18 18:12
doctorann 
Intro - what next?

Hi all --

Just want to introduce myself... First I am not an MD! I have a PhD in psychology (research, not clinical -- now a research support person doing stats and data management) from ages ago and just have kept this username over time.

I've had Type 1 diabetes for 42+ years, doing well *except* for some connective tissue related complications -- frozen shoulders on both sides, treated back in 2000 and close to perfect recovery ever since, trigger fingers, and now DD in both hands.

The left hand is new and very mild; I am going to try the FoxxGlove at night for it, because I am sick of surgery, as you shall see. It's mostly affecting the palm below the middle finger. I had trigger finger surgery on that finger back in 2011, with complete recovery though it took a lot of OT, as one of my special talents is making scar tissue.

The right hand. Well. That is a mess. No fingers are fully contracted, but my hand surgeon and OT say it's one of the most aggressive presentations they have seen. I had surgery for trigger finger in my right little finger last April, and whether it was the trauma from surgery or the trauma of getting my hand yanked pretty hard by a horse about 5 weeks post-surgery, that set off my ring finger and it started contracting. I took a few weeks off from the horse, which didn't help at all.

I was in OT for the little finger, but the OT thought the stiffness in my ring finger had more to do with the little finger healing (or not). The DD wasn't "caught" until late summer. Surgeon told me to come back in October, I did, she didn't like what she saw, and I had surgery on December 6. She didn't try other approaches because the DD was progressing so quickly. She told me after surgery that once she got in, my hand was "a mess" but still said she thought I'd get better.

I went on to night splinting, OT twice a week, OT exercises several times a day, etc. but over the weeks, the finger has contracted rapidly and it's now about as bad as it was before surgery, though a bit more flexible. As with my other hand surgeries, I'm scarring a lot. I have days where my hand is comfortable, and others where it is very achy. I am not riding my horse, just visiting, brushing her -- which is actually really good for my hand -- and so forth.

So I was back at the surgeon's this morning, and she doesn't really know what to say. She did tell me I need to choose straightness vs. flexibility. I think I would choose flexibility, because I don't care about having a cosmetically "pretty" hand as much as I do about having a hand I can use!

Besides riding, I garden a lot and would like to be able to use garden clippers without so much pain, or at all. The weird thing about this DD is that I have had very little pain all along, except for those few activities where there is a lot of pressure required from the whole hand, like using clippers. My husband will step in and do stuff for me if I ask, but the garden has really been "my thing" and I don't like asking all the time. (Of course right now it's winter -- I live in Massachusetts -- so the garden is not an issue yet.)

In any case it is very frustrating right now and I'm glad to have found this forum.

(Photo is from October, and yes my horse is pigeon-toed!)

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leading_15OCT.jpg leading_15OCT.jpg (27x)

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01/19/18 18:41
spanishbuddha 

Administrator

01/19/18 18:41
spanishbuddha 

Administrator

Re: Intro - what next?

Thanks for sharing your story and the photo. Since surgery seems in your case to make things worse I would seek NA to get as good a result as possible followed almost immediately by RT. Start splinting the LH now with a silicone scar sheet, it may help, maybe not. You’re not wearing gloves in the photo, I personally would.

01/19/18 19:01
doctorann 
01/19/18 19:01
doctorann 
Re: Intro - what next?

spanishbuddha:
Thanks for sharing your story and the photo. Since surgery seems in your case to make things worse I would seek NA to get as good a result as possible followed almost immediately by RT. Start splinting the LH now with a silicone scar sheet, it may help, maybe not. You’re not wearing gloves in the photo, I personally would.

RT sounds like an intriguing option. I'd be looking at MGH in Boston; I work for another hospital owned by the same company and our health insurance co-pays are structured to keep us getting treatment "in-house" as much as possible. My surgeon is not "in-house," but it should be no trouble to see someone where I work to get the process started. She would not do NA because of how fast the disease was progressing.

I have scar sheets, of course, and can use them on my left hand.

I normally wear gloves of some type with the horse -- in the photo I had a compression glove on my right hand... This is before the left hand showed any signs of disease. The compression glove was helpful in terms of protection and also keeping swelling down and I was wearing it most of the time pre-surgery. I wear mittens at the barn right now Hand protection is super-important should the horse decide to go somewhere else with no warning! It's easy to get rope burns, though not common with the big thick cotton ropes like the one in the photo. (I am just starting with the compression glove again, but can't tolerate it for long periods of time because of the scars.)

01/19/18 19:12
doctorann 
01/19/18 19:12
doctorann 
Re: Intro - what next?

spanishbuddha:
Thanks for sharing your story and the photo. Since surgery seems in your case to make things worse I would seek NA to get as good a result as possible followed almost immediately by RT. Start splinting the LH now with a silicone scar sheet, it may help, maybe not. You’re not wearing gloves in the photo, I personally would.

Oh ... just for a bit more (I know, I know...) I seem to be one of those people whose disease was triggered by hand trauma, and well, surgery is hand trauma. I went from no disease to Stage 2 in about 4 months in my right ring finger. The PIP joint is the worst but the others are also affected. That is what I mean by "aggressive." So I am feeling a bit stuck WRT treatment as I worry about trauma of treatment making it worse...

01/20/18 09:20
spanishbuddha 

Administrator

01/20/18 09:20
spanishbuddha 

Administrator

Re: Intro - what next?

Wait and see for the LH is ok unless you feel it is progressing fast. Some Drs will try a steroid shot into sore prominent nodules. The feedback we get on here for the efficacy of this is mixed.

01/20/18 09:47
wach 

Administrator

01/20/18 09:47
wach 

Administrator

Re: Intro - what next?

Hi doctorann,

I went throught he same experience as you that surgery related hand trauma triggered new growth of Dupuytren's. In my case radiotherapy was effective in calming down the flare. That was more than a decade ago and those sites are still stable. Actually, someone on this forum went through about 20 hand surgeries, in increasingly shorter periods of time. His palms look bad with all the scarring and patches of skin (dermofasciectomy) in an attempt to slow down progression (he is still a happy camper though). Finally he decided for having radiotherapy and which stabilized his condition. Since then, to my knowledge he only had two PNFs.

Just to make sure: I am NOT advocating irradiating each and every nodule of everyone because most people with signs of Dupuytren's never need any treatment at all (I hesitate calling them patients). But if you have a specifically aggressive form of Duypuytren's surgery might force you into repeated cycles of surgery and radiotherapy might be a way out of this vicious cycle.

Wolfgang

01/21/18 22:57
doctorann 
01/21/18 22:57
doctorann 
Re: Intro - what next?

Wolfgang, that's interesting that RT can stabilize aggressive DC (since I have the contractures, I am going to call it DC instead of DD. If it was just DD, I'd not be terribly worried.) I thought it was mostly for mild disease. BUT honestly I think it would be a very bad idea to go through another surgery since my body reacts so strongly. As I said, I should be able to hook in to MGH's clinic easily. If they won't take me, I'd look at other places, including other countries.

I read up a little and it seems like RT is much more common outside the US. Does anyone know why?

I rode the horse yesterday and today for the first time since the surgery, so I am pretty happy today

01/22/18 08:33
spanishbuddha 

Administrator

01/22/18 08:33
spanishbuddha 

Administrator

Re: Intro - what next?

My experience is that in Germany RT is not only quite common for benign tumours but also for some inflammatory conditions, such as plantar fasciitis. They seem to have invested in the equipment and clinics. In the UK where I am, the availability of the equipment is limited and so reserved almost exclusively for cancers.

01/24/18 09:49
wach 

Administrator

01/24/18 09:49
wach 

Administrator

Re: Intro - what next?

"RT can stabilize aggressive DC" - That might be a misunderstanding. RT works on new nodules and fresh cords, not on contracted fingers. After you had surgery you basically start from scratch and new nodules develop, either at the surgery site (= recurrence) or elsewhere (= extension). There RT can help breaking the surgery-recurrence-extension cycle.

"it seems like RT is much more common outside the US. Does anyone know why?" - historic reasons.

doctorann:
Wolfgang, that's interesting that RT can stabilize aggressive DC (since I have the contractures, I am going to call it DC instead of DD. If it was just DD, I'd not be terribly worried.) I thought it was mostly for mild disease. BUT honestly I think it would be a very bad idea to go through another surgery since my body reacts so strongly. As I said, I should be able to hook in to MGH's clinic easily. If they won't take me, I'd look at other places, including other countries.

I read up a little and it seems like RT is much more common outside the US. Does anyone know why?

01/24/18 10:53
Stefan_K. 
01/24/18 10:53
Stefan_K. 

Re: Intro - what next?

Quote:
"it seems like RT is much more common outside the US. Does anyone know why?" - historic reasons.
and in Germany in addition probably also the fact that it is covered by social security.

But it could be worse: in France I have found it to be impossible to get RT for DD. Doctors just won't do it, even if you pay for it yourself.

Stef

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

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