| General and mental advice needed: 40y female newly diagnosed |
|
|
1 2 3 4
|
| 1 2 3 4
|
|
03/11/2018 05:56
Jaekry 
|
03/11/2018 05:56
Jaekry
|
Re: General and mental advice needed: 40y female newly diagnosed
spanishbuddha:
You have a good baseline. Start a photo log or journal, with notes of symptoms, perhaps monthly photos, and that way you will know objectively if there is progression and the rate of progression, rather than having your worries play tricks on your mind. Then carry on as normal and try and forget about it apart from protecting your hands a bit more than you used to when handling things, doing sports, etc.
I already was taking images so I that helps in documenting it. (And thats why I was sure it was not in my mind ;).
I'll post some. Or perhaps at my sig.
I've bought cycling gloves, bonus: it helps my Raynaud's in these cold days.
|
|
|
|
|
03/11/2018 06:19
Jaekry
|
03/11/2018 06:19
Jaekry
|
Re: General and mental advice needed: 40y female newly diagnosed
on top: my prediction for a new cord
on bottom: 4 weeks apart: less pointy, but bigger (see line) and the starting of new nodules.
The topview images are less clear, but I made these in the beginning, so thats a more honest comparison.
Edited 03/11/18 08:23
|
|
|
|
|
03/17/2018 10:35
Jaekry
|
03/17/2018 10:35
Jaekry
|
Re: General and mental advice needed: 40y female newly diagnosed
Ow great, cant 'tuck' my fingers in anymore...
(page 1: there's an image of my right hand with my fingers tucked in, like an semi uncurled fist, where my fingertips touch my hand palm, can't do that anymore/now.)
|
|
|
|
|
04/02/2018 17:16
Joyous56 
|
04/02/2018 17:16
Joyous56
|
Re: General and mental advice needed: 40y female newly diagnosed
I just joined this forum, and wish I'd found it sooner.
I am 61, and 5 years ago, when being treated for 2 trigger fingers, I pointed out a nodule on my right palm. It was just a lump - no pain, no contracture - and I was told it was dupuytran's....just wait and see.
Over the past 5 years, my pinky developed an open "C" curve, and it was a little more difficult to put on gloves, or put my right hand in my pocket. No pain, but I'd developed additional nodules above and below the original, and one on the side of my pinky.
Well, in an unrelated visit to my GP, he said it was time for surgery. I went to the specialist I'd seen for the trigger fingers, and he set me up for surgery, which I had within a week. I thought it would be one and done, and I should have done more research.
I had the surgery last Tuesday, and a "customized" splint done on Friday, which encompassed the pinky and ring finger - even though the ring finger had no contraction. I tried to wear this "customized" splint, but it cut into my thumb joint and caused a blister. I was told I had to wear this damn thing 24/7 for 12 weeks...something I did not expect, and was not told. Today I had to tell the splint guy that it wasn't working out, and he said he'd make any adjustments, no charge. Well, he did the splint, instead of his usual tech, and obviously didn't know what he was doing. It doesn't need an "adjustment"; it needs to be re-done. Completely. By someone competent.
I'm right handed. so this affects everything. I can't wash my hair, style it, cook - even toilet properly (check for yourself how easy it is to wipe with your non-dominant hand)....and I've got to deal with this for three months.
So, as scary and disorienting as this my be, I urge you not to jump for a surgical solution before you really need it. I could have lived with the inconvenience of putting on gloves, and really don't need to put my hand in my pocket.
This may progress slowly, which is usual. I know you are worrying, but think about how this is really affecting your function. It's not like Cancer; it's not going to kill you - try and put it in perspective that way. No doubt it will progress, but there may be nothing you can do to stop it (but please, do some online research - some folks think massage, stretching, and other home treatments help). If it gets to the point you need surgery, then have it done, but know what you're getting into.
I know you're 40, and I'm 61, so we may have different perspectives. From my experience, I would suggest that, when weighing surgery, think about whether the inconvenience of the contracture outweighs 3 months of dealing with a splint, therapy, being unable to do all the things you normally do with your dominant hand. When the inconvenience of the contracture outweighs that of surgery, then get the surgery.
And to help you make the decision, try, for a few days, doing everything without using your dominant hand. Some people are ambidextrous. I am not.
|
|
|
|
|
04/02/2018 17:36
spanishbuddha  Administrator
|
04/02/2018 17:36
spanishbuddha Administrator
|
Re: General and mental advice needed: 40y female newly diagnosed
Well yes we advise a minimal intervention type treatment of NA or collagenase as first choice for treating a contracture.
Some people respond well to surgery and heal within weeks, although this often depends a lot on the skill and experience of the surgeon. Even then it can be months of PT to achieve full dexterity. Surgery has its place, but in general leave it for the difficult or severe cases.
You may be able to purchase or fashion a splint yourself. Check the physio sites or googl Fixxglove.
|
|
|
|
|
04/03/2018 09:20
wach Administrator
|
04/03/2018 09:20
wach Administrator
|
Finger splints ought to be comfortable
You might try one of the glove based splints, e.g. the Fixxglove. You can bend the Fixxglove's finger splint so that it does not hurt and does not exert force on your finger (the purpose of the splint is to keep your finger straight and relaxed). You can find some more info on hand splinting on https://www.dupuytren-online.info/dupuyt...-splinting.html .
Wolfgang
Joyous56:
...
I had the surgery last Tuesday, and a "customized" splint done on Friday, which encompassed the pinky and ring finger - even though the ring finger had no contraction. I tried to wear this "customized" splint, but it cut into my thumb joint and caused a blister. I was told I had to wear this damn thing 24/7 for 12 weeks...something I did not expect, and was not told. ...
Edited 04/03/18 12:21
|
|
|
|
|
04/03/2018 11:17
Joyous56
|
04/03/2018 11:17
Joyous56
|
Re: General and mental advice needed: 40y female newly diagnosed
Thanks for the suggestions. I did briefly look into the Fixxglove...but I'll delve more deeply.
Now my rant. The guy who made the splint is going to bill my insurance company over $350, for an hour of his time and less than $100 in materials (I looked up the cost of the materials). This is the problem with skyrocketing health care costs in the US and elsewhere; the consumer has no say in what their insurance company is billed for or whether they received satisfactory service. You are basically at the mercy of your health care provider. You can't return an unsatisfactory or useless product, and you have no idea, usually, what you'll be paying or whether it's worth the cost. There is no other service or product purchase that operates in this way. Rant over.
|
|
|
|
|
04/03/2018 14:33
Jaekry
|
04/03/2018 14:33
Jaekry
|
Re: General and mental advice needed: 40y female newly diagnosed
Joyous56:
I just joined this forum, and wish I'd found it sooner.
I am 61, and 5 years ago, when being treated for 2 trigger fingers, I pointed out a nodule on my right palm. It was just a lump - no pain, no contracture - and I was told it was dupuytran's....just wait and see.
Over the past 5 years, my pinky developed an open "C" curve, and it was a little more difficult to put on gloves, or put my right hand in my pocket. No pain, but I'd developed additional nodules above and below the original, and one on the side of my pinky.
Well, in an unrelated visit to my GP, he said it was time for surgery. I went to the specialist I'd seen for the trigger fingers, and he set me up for surgery, which I had within a week. I thought it would be one and done, and I should have done more research.
I had the surgery last Tuesday, and a "customized" splint done on Friday, which encompassed the pinky and ring finger - even though the ring finger had no contraction. I tried to wear this "customized" splint, but it cut into my thumb joint and caused a blister. I was told I had to wear this damn thing 24/7 for 12 weeks...something I did not expect, and was not told. Today I had to tell the splint guy that it wasn't working out, and he said he'd make any adjustments, no charge. Well, he did the splint, instead of his usual tech, and obviously didn't know what he was doing. It doesn't need an "adjustment"; it needs to be re-done. Completely. By someone competent.
I'm right handed. so this affects everything. I can't wash my hair, style it, cook - even toilet properly (check for yourself how easy it is to wipe with your non-dominant hand)....and I've got to deal with this for three months.
I'm sorry to hear your story. Its not what you want or expect. Especially the splint part. I had to have my wrist splint(*) altered 4(!) times (because I have a lean/boney type physique) before it came close to the point "not smashing the damn thing". And they were very accomodating and helpful.
(*) I already have been in a spint for 4 months (24/7) and another 1 month of weening out of the spint. So I know a bit how you feel. The toilet and changing, bras, hairbuns, shaking hands, etc... It's been a... journey. ;)
Joyous56:
So, as scary and disorienting as this my be, I urge you not to jump for a surgical solution before you really need it. I could have lived with the inconvenience of putting on gloves, and really don't need to put my hand in my pocket.
This may progress slowly, which is usual. I know you are worrying, but think about how this is really affecting your function. It's not like Cancer; it's not going to kill you - try and put it in perspective that way. No doubt it will progress, but there may be nothing you can do to stop it (but please, do some online research - some folks think massage, stretching, and other home treatments help). If it gets to the point you need surgery, then have it done, but know what you're getting into.
I know you're 40, and I'm 61, so we may have different perspectives. From my experience, I would suggest that, when weighing surgery, think about whether the inconvenience of the contracture outweighs 3 months of dealing with a splint, therapy, being unable to do all the things you normally do with your dominant hand. When the inconvenience of the contracture outweighs that of surgery, then get the surgery.
And to help you make the decision, try, for a few days, doing everything without using your dominant hand. Some people are ambidextrous. I am not.
I'm rational as well, I know I'm generally fine, it's just that... you know some people: you can throw anything to them, nothings sticks! I'm not that people. ;) The pain has subsided so that helps tremendously in dealing with it. I used to be om paracetamol (6pd) and voltaren topical (4xpd).
Apparently Dupuytren does not give pain: I strongly disagree: cramping, and 'drawing with a scalpel' and diffuse aches. Ugh.
I have changed my diet since 3 weeks, and not sure it correlates, but... 1) I feel better in general. 2) no pains (almost none). I still chalk it up to coincidence, but time will tell. Even if its placebo effect on me: I'll take it.
It does not stop/slow down development yet: a node/plaque under the pink and extra 'dimples'... We'll see.
|
|
|
|
|
04/06/2018 15:15
BRIANB 
|
04/06/2018 15:15
BRIANB
|
Re: General and mental advice needed: 40y female newly diagnosed
what I have done is wear a light weight glove under the splint..also I have applied some padded tape ..sorry I do not know the
name for it...to the thumb area that may get sore,..You have to adjust things ..and a little trial and error...should resolve your problems.... as mentioned..I have been weraing splints since 2009... and they do the job ..at least so far ..
|
|
|
|
|
04/06/2018 20:18
Joyous56
|
04/06/2018 20:18
Joyous56
|
Re: General and mental advice needed: 40y female newly diagnosed
I went back to the surgeon's office today, 10 days after surgery, and had the stitches removed. He says I only need to wear the splint at night, and just use my hand as I normally would during the day. He even said I could do without the PT, and just do some exercises at home!
I'm sure the PT guy meant well, but was also out for the business.
I have no pain, minimal swelling, a godawful scar on my hand, but I'm headed toward full functionality, without the 24/7 splint, or weeks of therapy.
Alas, I must discontinue my career dream to be a hand model. NOT...! This is my story, for now.
|
|
|
|
|
|
1 2 3 4
|
| 1 2 3 4
|
404 users online
Login
