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Dupytren's Contracture - Any Fellow Sufferers?


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Just wondering if any members have Dupytren's and what their experiences are with regard to golf or in general. Or - are there any hand surgeons amongst the membership?

I am not sure if this is the correct area for this topic. If it isn't - thank you, mods, for moving it to a more appropriate location. :-)

 

Edited by Shorty
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47 minutes ago, Shorty said:

Just wondering if any members have Dupytren's and what their experiences are with regard to golf or in general. Or - are there any hand surgeons amongst the membership?

I am not sure if this is the correct area for this topic. If it isn't - thank you, mods, for moving it to a more appropriate location. :-)

 

I have it in both hands. Right now its not limiting me in anything other that being able to lie my hands flat on the ground, as in a push up position, which I avoid. I use my knuckles. I did switch to midsize grips, which seemed to help a bit. 

I have talked with my hand doctor and there are several types of procedures including using a needle to break up the tissue. However, as I am also a guitar player, I am reluctant to go that route until necessary.

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@Shorty, @boogielicious, We have a hand specialist that uses the Xiaflex (your “needle” procedure) in office and folks do pretty well, but it looks super painful...the benefit of that over the surgical release is the lack of incisional scar tissue and no anesthesia risk.  

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16 minutes ago, boogielicious said:

Dupytren's

A friend uses gloves on both hands which seem to help according to him.
Are there any creams made for relief or can help?

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28 minutes ago, woodzie264 said:

@Shorty, @boogielicious, We have a hand specialist that uses the Xiaflex (your “needle” procedure) in office and folks to pretty well, but it looks super painful...the benefit of that over the surgical release is the lack of incisional scar tissue and no anesthesia risk.  

I can see it being painful to have someone stick a needle in you palm and tear built up tissue. 😜 “Hold still and bite on this leather strap while I jab your tendon!”

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1 minute ago, boogielicious said:

I can see it being painful to have someone stick a needle in you palm and tear built up tissue. 😜 “Hold still and bite on this leather strap while I jab your tendon!”

Yeah, the injection is administered, the medicine works to break up the connective tissue adhesions, we bring you back to the office the next day and tell you to say “ouch!” on the count of three while the palm and fingers are spread out and extended.  But, it’s temporary. But as long as you can do what you want, I don’t blame you for putting it off. The only downside to that is that it tends to be progressive in nature

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6 minutes ago, woodzie264 said:

Yeah, the injection is administered, the medicine works to break up the connective tissue adhesions, we bring you back to the office the next day and tell you to say “ouch!” on the count of three while the palm and fingers are spread out and extended.  But, it’s temporary. But as long as you can do what you want, I don’t blame you for putting it off. The only downside to that is that it tends to be progressive in nature

I don’t think “ouch” would be a significant enough expletive.

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57 minutes ago, boogielicious said:

I don’t think “ouch” would be a significant enough expletive.

Wicked ouch!

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4 hours ago, boogielicious said:

I have it in both hands. Right now its not limiting me in anything other that being able to lie my hands flat on the ground, as in a push up position, which I avoid. I use my knuckles. I did switch to midsize grips, which seemed to help a bit. 

I have talked with my hand doctor and there are several types of procedures including using a needle to break up the tissue. However, as I am also a guitar player, I am reluctant to go that route until necessary.

Sounds pretty much like me. But I even have difficulty washing my hair and shaking hands and putting my hand in my pocket.

I had experimental radiation therapy on the hand that isn't as bad. I have no sweat glands on that hand but the Dupytrens  doesn't seem to be progressing. Do you think that surgery for you is inevitable, down the track? 

4 hours ago, woodzie264 said:

@Shorty, @boogielicious, We have a hand specialist that uses the Xiaflex (your “needle” procedure) in office and folks do pretty well, but it looks super painful...the benefit of that over the surgical release is the lack of incisional scar tissue and no anesthesia risk.  

I have heard that Xiaflex is hard to get but results are only temporary.

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20 minutes ago, Shorty said:

Sounds pretty much like me. But I even have difficulty washing my hair and shaking hands and putting my hand in my pocket.

I had experimental radiation therapy on the hand that isn't as bad. I have no sweat glands on that hand but the Dupytrens  doesn't seem to be progressing. Do you think that surgery for you is inevitable, down the track? 

I have heard that Xiaflex is hard to get but results are only temporary.

Not sure if or when I will need surgery. It seems to be stable at the moment. If it gets worse, I will go see the doctor again. I just worry about injuring it if I trip and reach out flat handed.

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21 minutes ago, boogielicious said:

Not sure if or when I will need surgery. It seems to be stable at the moment. If it gets worse, I will go see the doctor again. I just worry about injuring it if I trip and reach out flat handed.

Never thought of that. Sometimes in bed I accidentally put pressure on mine and it's not pleasant. My thought is that if ever I do need surgery it will be pretty obvious so I'm just putting up with it and seeing what happens. :-)

 

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EDIT: I got my information wrong, so I had to edit this. My dad never got the surgery. Sorry about that. I just called him to get the correct story of his experience.


It runs in my family unfortunately. My dad and uncle both have it badly. My dad opted for the injections which worked great for a while but sort of came back. He says it's functional enough where he's just letting it be at this point. He even thinks his golf grip is better now with it, which I highly doubt is true, but he claims it is.

My uncle had the surgery at age 55 and it went well, but also came back like ten years later. He had the surgery again. He seems fine with it these days.


Adhesive capsulitis (Frozen Shoulder) is genetically linked to Dupytren's. I've suffered from two frozen shoulders since 2016 and had surgery to repair both in 2019. Still rehabbing. That surgery is far worse, so I wouldn't fear the hand surgery version as IMO that seems far less invasive. But I'm not an expert.

My surgeries went great, but the recovery has been unusually long, probably because of the severity of the issue. I just started playing soccer and basketball again though these past 3-4 weeks, and I plan on playing hoops again tomorrow, so things are looking up finally. I have to be careful and continue to take it slow, but there's some light at the end of the tunnel. 

Edited by JetFan1983
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1 hour ago, Shorty said:

I have heard that Xiaflex is hard to get but results are only temporary.

Yeah, I said that in my post. It works to lysis the existing fibrosis, but to my knowledge, there is nothing preventive about it. But I could be wrong

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17 minutes ago, woodzie264 said:

Yeah, I said that in my post. It works to lysis the existing fibrosis, but to my knowledge, there is nothing preventive about it. But I could be wrong

In fact, when I went to an educational seminar where I signed up for the radiation trial, one of the things they said was that no matter what treatment people have - from needling to surgery, it always returns. 

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9 minutes ago, Shorty said:

In fact, when I went to an educational seminar where I signed up for the radiation trial, one of the things they said was that no matter what treatment people have - from needling to surgery, it always returns. 

Boooooooo! Yeah, none of the treatments change the genetics of your fibrous connective tissue (which is the problem)...just be thankful you don’t have Peyronies (which is also treated with Xiaflex) 😳

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I have early onset DC on my left hand. Last September-October I started waking up with left pinky curled up. More annoyance than pain. Anyway I read up on it and manage it with daily hand massage like you would try to break up scar tissue. Seems to have gotten better a tad bit but as @woodzie264 said I think progression is inevitable. We will see.

I see all little and big health niggles only through glasses of how it affects golf 😄. It doesn't bug me as much if other things are diminished as long as I can keep swinging. 

 

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9 hours ago, woodzie264 said:

Booo...just be thankful you don’t have Peyronies (which is also treated with Xiaflex) 😳

Just looked it up 😱

6 hours ago, GolfLug said:

Anyway I read up on it and manage it with daily hand massage like you would try to break up scar tissue.

 

How much time do you spend doing this, GL?

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18 hours ago, woodzie264 said:

...just be thankful you don’t have Peyronies (which is also treated with Xiaflex) 😳

Yea.... Peyronie's is also part of this family of idiopathic disorders, but didn't want to bum everyone out with bringing it up lol. Yes, let's be thankful it's not that! 😬

Speaking of Xiaflex, there are people within the frozen shoulder community trying to get the levers of power to approve it for frozen shoulder treatment, but so far it's only in the trial phase. 

Edited by JetFan1983
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