| Lost password
212 users onlineYou are not loggend in.  Login
Another Dupuytren in town...needs help!
 1 2 3
 1 2 3
02/27/15 15:43
maat 
02/27/15 15:43
maat 
Re: Another Dupuytren in town...needs help!

I noticed nodules and cords on both hands about a year ago. I thought it was arthritis. My GP send me to a specialist who diagnosed DUP. No one else in my family has it. Within a year, my left hand had constricted to the point of qualifying for surgery (35 degree constriction or more). Surgery was scheduled for January 30, 2015. I started doing research and found many people had a recurrence after surgery plus the compounded issue of dealing with scar tissue. The Specialist had recommended surgery because he had found that Xiaflex treatment, the only other option he said, has a recurrence rate of 1 to 2 years. Well, I cancelled the surgery and asked the Specialist if I could do the Xiaflex instead - seemed a better option without the scar tissue issue. Specialist said that I would have to be preapproved for Xiaflex through insurance because the cost was $5,000. So, while I waited for pre approval I started looking on this website and others. I found this guy on utube at https://www.youtube.com/watch?v=4IpImhswY4w. He made a mixture of DMSO, magnesium oil, and saturated solution potassium iodide. I started researching those ingredients and found some concern with DMSO and the potassium ( I already have issues with my thyroid). Anyway, I started using this mixture cautiously about 5 weeks ago. I am very careful to clean the sight with alcohol, then rinse my hands, and apply the mixture with a cotton swab. I throw the cotton swab away and use gloves if I am going to be touching anything like food, or my face, eyes, etc. Well, I just had my degree of contracture remeasured last night and the left hand is now less than 15 degrees and the cords seem to be disappearing. I am very pleased with the results so far and thought I would share. If you want to try this, PLEASE do your own research. I am still concerned about what these ingredients may do to my kidneys, liver, lungs, heart, etc. But seems to be doing wonders for my DUP

02/27/15 15:59
Stefan_K. 
02/27/15 15:59
Stefan_K. 

Re: Another Dupuytren in town...needs help!

maat:
I noticed nodules and cords on both hands about a year ago. I thought it was arthritis. My GP send me to a specialist who diagnosed DUP. No one else in my family has it. Within a year, my left hand had constricted to the point of qualifying for surgery (35 degree constriction or more). Surgery was scheduled for January 30, 2015. I started doing research and found many people had a recurrence after surgery plus the compounded issue of dealing with scar tissue. The Specialist had recommended surgery because he had found that Xiaflex treatment, the only other option he said, has a recurrence rate of 1 to 2 years. Well, I cancelled the surgery and asked the Specialist if I could do the Xiaflex instead - seemed a better option without the scar tissue issue. Specialist said that I would have to be preapproved for Xiaflex through insurance because the cost was $5,000. So, while I waited for pre approval I started looking on this website and others. I found this guy on utube at https://www.youtube.com/watch?v=4IpImhswY4w. He made a mixture of DMSO, magnesium oil, and saturated solution potassium iodide. I started researching those ingredients and found some concern with DMSO and the potassium ( I already have issues with my thyroid). Anyway, I started using this mixture cautiously about 5 weeks ago. I am very careful to clean the sight with alcohol, then rinse my hands, and apply the mixture with a cotton swab. I throw the cotton swab away and use gloves if I am going to be touching anything like food, or my face, eyes, etc. Well, I just had my degree of contracture remeasured last night and the left hand is now less than 15 degrees and the cords seem to be disappearing. I am very pleased with the results so far and thought I would share. If you want to try this, PLEASE do your own research. I am still concerned about what these ingredients may do to my kidneys, liver, lungs, heart, etc. But seems to be doing wonders for my DUP

I have worked in skincare too long to believe that anything like this can penetrate the skin deep enough to be effective (and safe). But I am glad for you the internet saved you from unnecessary surgery (which should always be the very last option). That video without a single image of the supposed DD hand seems weird. If it tried to sell the miracle product I'd say its a scam.

Based on my own experience I encourage you to look into NA, if need be in another country (e.g. Paris), for a fraction of the cost you quote for Xiaflex in your location. And I would avoid returning to that "Specialist".

Edited 02/27/15 16:06

02/27/15 18:53
spanishbuddha 

Administrator

02/27/15 18:53
spanishbuddha 

Administrator

Re: Another Dupuytren in town...needs help!

Hi maat

Thanks for sharing. That's encouraging. Can you post before and current photos? Previous reports from DMSO/SSKI users have been less positive, so forgive any scepticism. But anyway it's what happens for you personally that matters.

Best wishes
SB

03/01/15 17:32
maat 
03/01/15 17:32
maat 
Re: Another Dupuytren in town...needs help!

I would be glad to post photos of current condition, if I can figure out how. I don't have "before" photos but can tell you that I had to wait for a contraction of +35 degrees in order to qualify for surgery, which occurred for my left hand only in December 2014. I should also mention that I have been stretching my cords daily since I started applying the solution.

Attachment
dupuytrens (5).JPG dupuytrens (5).JPG (61x)

Mime-Type: image/jpeg, 100 kB

dupuytrens (4).JPG dupuytrens (4).JPG (40x)

Mime-Type: image/jpeg, 101 kB

dupuytrens (3).JPG dupuytrens (3).JPG (33x)

Mime-Type: image/jpeg, 106 kB

03/01/15 17:33
maat 
03/01/15 17:33
maat 
Re: Another Dupuytren in town...needs help!

I figured out how and hit the wrong button. Here are 2 more photos

Attachment
dupuytrens (2).JPG dupuytrens (2).JPG (32x)

Mime-Type: image/jpeg, 103 kB

dupuytrens (1).JPG dupuytrens (1).JPG (28x)

Mime-Type: image/jpeg, 102 kB

03/01/15 21:40
Katbel 
03/01/15 21:40
Katbel 

Re: Another Dupuytren in town...needs help!

maat:
I would be glad to post photos of current condition, if I can figure out how. I don't have "before" photos but can tell you that I had to wait for a contraction of +35 degrees in order to qualify for surgery, which occurred for my left hand only in December 2014. I should also mention that I have been stretching my cords daily since I started applying the solution.

Thanks maat for sharing your photos and what you have done.
I tried a similar solution to my hand, without the potassium because I had in the past thyroiditis (3 times) and I was afraid too.
After a while I saw no difference and I agree with Stefan K. that nothing can penetrate the skin deep enough to be effective: I read a lot about it and he 's right.
Since 15 days I 'm trying a different approach working from inside: Bromelain , Quercetin [added a week ago], turmeric, fish oil.
For sure exercises help because I can see that now my hand is flat and I can even stretch it wider than before, almost as much as the left hand that is free of DC.

If you don't have a specific condition, I wonder what it causes DC (I know there are a lot of studies but could not find one about a specific diet).
So since a week ago I added more fruit rich in vit C that for another reason, a doctor told me to avoid because irritates the bowel.
Plus I never drink coffee and tea since a long time, and
I added those too...actually decaf, that has some caffeine anyway (to be decaf needs to be less than 3%) and green tea.

I don't precisely know what is working but it's working and my nodules start to be softer, not all the time, and smaller.
The ones on my feet are still there, they don't bother but I find that having everyday a warm bath with magnesium - Epsom salts make me feel with lighter feet.


It would be interesting to know how a diet could or could not change DC, any comment is appreciated

Katbel

03/01/15 21:49
Katbel 
03/01/15 21:49
Katbel 

Re: Another Dupuytren in town...needs help!

Sherise:
Still after surgery, needle appendectomy and xiaflex injection yesterday. 5-6 small injections in one finger. My finger is so swollen & hand it feels like it's going to bust open. It's painful & brused in pinky area . Xiaflex is a enzyme which was my last chance to eat thru the collagen built up on the finger cord and breakup the severe scarring from surgery. The normal side effects is extreme bruising, swelling and itching all over. No severe side effects or allergies have I experienced so far.

Next week go in for finger manipulation.The dr. Wanted to wait a week due to the severe scarring from hand surgeon.It hurts like a son of a gun. Still waiting and holding out for a positive result from XIAFLEX .i figure if it's used for penis DC straightening I have a lot of sympathy for the man who goes thru XIAFLEX. It's safe and a better solution than surgery. I decided if used for that then safe for a pinky finger. Yet never heard of a male using XIAFLEX for DC of the penis. I can't imagine.he must be kept in a self induced coma. I can't move my hand or barely move PERIOD. How could he walk. I am in a lot of pain , as each day goes by it gets a little better. Stay positive and let The Lord take charge. POSITIVE THOUGHTS !

Hi Sherise,

I'm so sorry for your pain and frustration: I understand it very well!
I wish you all the best.
Please keep us posted about your improvements
and Positive Thoughts are for sure important

Katbel

03/01/15 21:54
Katbel 
03/01/15 21:54
Katbel 

Re: Another Dupuytren in town...needs help!

callie:
Just for the discussion, I had surgery 12 years ago on my 90 degree contracture little finger. The finger is still perfectly straight as before Dupuytren's. Absolutely 100 percent "fixed" with no signs of Dupuytren's. Incidentally, I had RT on the other hand (little finger) two years ago. The RT did not stop the Dupuytren's (they were nodules at the time) and that finger is now at 10-15 degrees contracture. The person who did the RT showed me his hand and he had surgery over 15 years ago and his hand was as mine ...very good. His other hand little finger was at about 50 degrees and he was ready to do surgery on that little finger.

Surgery shouldn't be ruled out. There are always exceptions to about every surgical procedure, but that shouldn't call for a "no surgery" commitment. That is a disservice to many people.


Hi callie,

A Very interesting point of view and a positive personal experience, at least for the surgical part.
From what I read I thought that RT was the only method to kill the collagen III for ever
but you are just proving the opposite
Another consideration: for sure you found a great surgeon
Wish you all the best!

Katbel

03/03/15 03:31
maat 
03/03/15 03:31
maat 
Re: Another Dupuytren in town...needs help!

To Callie: I am very glad that surgery worked for you and others. However, I have read so many stories of people with Dup that did surgery and had DUP came back within a year and had the added complication of scar tissue. For me, I would rather keep the door open for surgery but try other options that may be helpful, not as invasive as surgery. The more I read, the more it seems that something works for someone and nothing works for everyone. Thank you for sharing

03/03/15 19:14
callie 
03/03/15 19:14
callie 
Re: Another Dupuytren in town...needs help!

You are correct. I was looking for a more permanent solution than NA. At the time Xiaflex was in trial. It doesn't matter what procedure a person uses for Dupuytren's, nothing is guaranteed. Everyone is happy with what works for them. RT definitely did not work for me.

 1 2 3
 1 2 3
because   painful   surgery   specialist   fingers   nodules   injection   helpful-medications   experience   Another   surgeon   Xiaflex   Dupuytren   contracture   started   anesthesiologist   effects   positive   dupuytrenfoundation   collagen