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Severe Dupytrens Contracture and SSD
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12/18/2016 20:49
jamesrm2017 
12/18/2016 20:49
jamesrm2017 
Severe Dupytrens Contracture and SSD

I am 37yo and at a loss at what to do anymore. I have this in both hands, my left hand my fingers are all but 1 almost touching my palm and the only finger on the right hand that's not affected is my middle finger. I've been told by my surgeon *he's been in practice for 30 years.. has never seen a case like mine. He did put pins in my fingers and tried to stretch them out with rubber bands and ended up taking the pins out of my fingers 3 months later due to infection. He then wanted to do another surgery that he said would require a skin graft but I had to leave NV where I had Medicaid, to Texas.... Now I'm screwed because of Texas and can't even afford a regular doctor to see for my agoraphobia and my deteriorating hands. I can't even do my own dishes anymore and I have a ring on my finger that's been stuck there for 4 years. I have now been forced to file for ssd. I am filling out my "function report" and sent that off a few days ago. As I arrived in TX, the pharmacy for "zilaphex" called me to get the medicaid approval to ship my injections to my doctor. I found out TX doesn't offer medicaid unless you have kids or you're on ssd so I applied.

Has anyone else been through this? I just need to know what kind of chances I have. I have the other issues and my past work history is working at commercial print shops, using my hands constantly.


Thanks so much for any help. I'm at a loss here and feel pretty useless at this point.

I had to have someone type this, really sad.

12/19/2016 08:04
spanishbuddha 

Administrator

12/19/2016 08:04
spanishbuddha 

Administrator

Re: Severe Dupytrens Contracture and SSD

Sorry to hear your story James.

Your hand surgery history sounds fraught, using pins and bands to keep the fingers straight is unusual treatment. It sounds like your previous surgeon was lining you up for a dermofasciectomy next. Your best bet is to find a surgeon experienced in all aspects of treating DD, get the hands straight and functional, and probably then consider RT to keep them that way. There are some good reports from patients in Dallas and Houston about Drs experinced in treating DD and some places do RT. Alternatively a referral to one of the highly rated Drs in the country, but I don't know how the insurance system works. Maybe your GP office can advise on that too? Whereabouts in Texas are you?

Best wishes SB

12/19/2016 19:08
jamesrm2017 
12/19/2016 19:08
jamesrm2017 
Re: Severe Dupytrens Contracture and SSD

spanishbuddha:
Sorry to hear your story James.

Your hand surgery history sounds fraught, using pins and bands to keep the fingers straight is unusual treatment. It sounds like your previous surgeon was lining you up for a dermofasciectomy next. Your best bet is to find a surgeon experienced in all aspects of treating DD, get the hands straight and functional, and probably then consider RT to keep them that way. There are some good reports from patients in Dallas and Houston about Drs experinced in treating DD and some places do RT. Alternatively a referral to one of the highly rated Drs in the country, but I don't know how the insurance system works. Maybe your GP office can advise on that too? Whereabouts in Texas are you?

Best wishes SB


It was horrible. I was called krueger on a daily basis and it got old. I'm in Mesquite, TX, just east of Dallas. I had a different strength rubber band to put on each finger and with dc in both hands, I had to have help. I had to wash it every night and the cloth would get caught up in the pins etc. Finally after about the 7th week they hit me with lidocaine and took the pins out after it got infected. No change whatsoever and today i had a interview at a fast food restaurant and they are only hiring to work the register. Well, lets just say I didn't make the cut. I miss playing my guitar and being able to do things like I used to do. The only finger that works is the right middle finger and without knowing I am constantly flipping people off. Not Good.

I have no insurance and just today I received a letter from ssd telling me to go see one of their doctors, so that's jan 4th. I'm sure this is going to be no fun but i have no other options right now.

My hands now have two holes in them, they don't hurt but it looks crazy. I can't even look at my hands much so I didn't notice I had two now.

Sorry it took so long to write, I had to get help to respond to you. Thank you for your reply!!

12/19/2016 21:52
spanishbuddha 

Administrator

12/19/2016 21:52
spanishbuddha 

Administrator

Re: Severe Dupytrens Contracture and SSD

I hope you saw the contacts we have on our treatment page for hand surgeons http://www.dupuytren-online.info/NA_list_North_America.html (this is an example for NA). I also hope it was not one of them that treated you? In addition the Dallas Hand Centre has had good mentions in the past http://www.dallashandcenter.com . I don't know the procedure for getting a referral, or if that's even possible, without insurance?

You could try some self massage of the hands with vitamin E oil or magnesium oil. May help with symptoms although not reverse contracture.

12/23/2016 15:20
BRIANB 
12/23/2016 15:20
BRIANB 
Re: Severe Dupytrens Contracture and SSD

sorry to hear this saga ... wish I could help you ... but there are some Docs. out there ..not just the one you encountered ..that are clueless... I went to three different docs ...did not like what what they saying so I did a ton of research about Dupys.and found Dr. Eaton ..he was outstanding !
If possible attempt to see Dr. Denkler in Calif. or at least call and or send him photos ..can't hurt...looks like he is the best, from what I have read ..

12/23/2016 15:57
wach 

Administrator

12/23/2016 15:57
wach 

Administrator

Re: Severe Dupytrens Contracture and SSD

There are also some doctors in TX experienced in treating Dupuytren's http://www.dupuytren-online.info/NA_list_North_America.html if you don't want to travel to San Fancisco (although Keith Denkler is indeed an expert).

Wolfgang

12/23/2016 18:23
jamesrm2017 
12/23/2016 18:23
jamesrm2017 
Re: Severe Dupytrens Contracture and SSD

Thanks so much for the help. I see one in Dallas I may take a look at.


Merry Christmas Eveyone!!

12/24/2016 15:28
gem1410 
12/24/2016 15:28
gem1410 
Re: Severe Dupytrens Contracture and SSD

I had the same situation with only 1 finger not affected--Fingers into palms--Had Dr Pess in NJ do NA surgery on both hands 6 months apart this year--2016--I tried many different procedures over the last 21 years--The NA was the best for me as the whole hand could be done and I was out cold for the operation in a surgical center--I cant handle pain--Followed operation up with weekly adjustments to the splint and hand therapy for 3 months--Andrew at Advanced Hand Therapy in NJ has my fingers straight with with very good motion-----The NA procedure requires a surgeon who has a feel for what he is doing as nerves and tendons can be damaged--Dr Pess has the feel as he has done this thousands of times--If you get a surgeon who watched a few videos on NA and has done few procedures you can end up with 10 numb fingers for years ----Give Dr Pess a call

Edited 12/24/16 17:31

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