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Started with Xiaflex but now heading in for operation(s)
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06/10/2018 16:57
supernovae 
06/10/2018 16:57
supernovae 
Started with Xiaflex but now heading in for operation(s)

I have severe Dupuytren on my left hand. Had a single nodule that pulled my pinky down bad, Xiaflex broke that but now I have all 4 fingers bent and bending at the knuckles and a massive nodule across my palm. Dr said that my fingers bending would be contractions/nodules in the finger itself and that surgery or just living with it is my best option.

I do pre-op on Wednesday and 3 hour surgery later in June.

Anything I should ask during pre-op? have others had similar symptoms? Would releasing the cord across my palm help my fingers straighten out or is it really up in my knuckles now?

I spent 3 months in a splint after xiaflex and my hand was mostly straight but it was the most painful physical therapy in the world and I could feel my hand pushing the splint away the entire time - physical therapist said just try harder and I wanted to punch everyone in the room.


Not to mention xiaflex with no outpatient pain meds was bonkers.


What should I expect with surgery? any tips for pre-op/post-op? I'm a computer engineer for my day job... I'm having full surgery on nondominant left hand and they're doing need work to break the nodule in my right hand in same visit, but he looked at me and said that would probably give me two years. How much sick time/leave/vacation should i plan? obviously, right hand will be usable more quickly but its gonna suck.

I'm half tempted to pick up woodworking and have an accident to get bionic hands at this point...

06/10/2018 18:05
kevinp 
06/10/2018 18:05
kevinp 
Re: Started with Xiaflex but now heading in for operation(s)

I have just had the op - 2 weeks ago, it is sore! Not sure my little finger will ever be straight, better to have had surgery as soon as possible. The suggested 4 weeks off work i have ignored!

I am happy to chat/share more if you need.

06/11/2018 05:35
spanishbuddha 

Administrator

06/11/2018 05:35
spanishbuddha 

Administrator

Re: Started with Xiaflex but now heading in for operation(s)

Sorry to hear your story supernovae. Do you know what surgery the dr will do on the LH, maybe a dermofasciectomy which involves a skin graft, and is used for severe cases which you say you have? I would avoid surgery in the RH at the same time, that could be a big ask in terms of coping with day to day tasks during recovery. Have you considered RT to see if that helps slow progression down, after the surgeries. Make sure you have some physio/OT lined up once the dr says you can start the hand exercises.

06/16/2018 04:12
GailSusan 
06/16/2018 04:12
GailSusan 
Re: Started with Xiaflex but now heading in for operation(s)

I had an operation on my right hand 20 years ago and several months of physical therapy after that but my hand wasn’t as bad as yours. Today my hand looks normal and is completely functional. I had a great hand surgeon. The DC didn’t return in that hand.

Just had Xiaflex on left hand this week. It’s straighter. I’ll do physical therapy again. Not sure I’ll do the splint. Hand is still bleeding so I’ll wait until next week on that.

09/02/2018 19:44
supernovae 
09/02/2018 19:44
supernovae 
Re: Started with Xiaflex but now heading in for operation(s)

I had my surgery about 3 months ago now. Surgery was about 4 hours, in 3 fingers and my palm. Still doing physical therapy twice a week, wearing a splint every night and trying to get strength back.

Palm is hard from scar tissue still and my fingers get straight after being in a splint all night but I struggle to make a fist so most of my PT is trying to get movement back. Scar tissue is extremely hard in my pinky still - but working through it.

my hopes are to get enough use back to play guitar again... but what a long hard road its been.

Curious if others had surgery with scar tissue lasting this long. My guess is next dr visit i'll be getting another steroid injection (ouch) to help move it along.

09/03/2018 04:47
wach 

Administrator

09/03/2018 04:47
wach 

Administrator

Re: Started with Xiaflex but now heading in for operation(s)

I had surgery 18 years ago and still feel the scar tissue in my palm. The healthy hand is a very delicate structure of nerves, elastic fibres, tendons, muscles etc and the scar tissue growing there after surgery is something comlpletely different. It will never be the same as the healthy hand and the surgeon should have told you that it might feel different. That does not exclude playing music again, so no reason to be too disappointed.

To regain your flexibility it might be better to stop the splinting at night. You might ask you dctor about that because a night splint will always make your hand stiffer and you are lookign for flexibility. After my surgery I never did any splinting and still have no recurrence in that finger but this might be just luck. Everyone is different.

Wolfgang

supernovae:
...
Palm is hard from scar tissue still and my fingers get straight after being in a splint all night but I struggle to make a fist so most of my PT is trying to get movement back. Scar tissue is extremely hard in my pinky still - but working through it.

my hopes are to get enough use back to play guitar again... but what a long hard road its been.

Curious if others had surgery with scar tissue lasting this long. My guess is next dr visit i'll be getting another steroid injection (ouch) to help move it along.

09/05/2018 22:50
bstenman 
09/05/2018 22:50
bstenman 
Re: Started with Xiaflex but now heading in for operation(s)

Problem with hand surgery is that commonly a tourniquet is used and so there is not blood supply to the muscles and the nerves for the duration of the operation. This lack of blood and oxygen is what causes the damage. Even a fasciectomy entails a 90 minute loss of blood to the hand although the use of an arterial clamp can provide significant mitigation (if it is used by the surgeon and most never change their approach after leaving med school in the USA).

I had a NA procedure done in March 2007 and Xiaflex injections March of 2011 followed by NA in July of 2013, and then in November of 2013 I had more Xiaflex injections along with NA which was done the day immediately following the injections. Fortunately my doctor (Dr Denkler) is a certified hand surgeon and has done hundreds of NA and Xiaflex treatments and knew which areas to treat with Xiaflex and which with the NA.

It is nearly 5 years later and the contracture has not returned in my hand. I do get cramping if I do an activity that requires clenching something in my hand for long periods of time but otherwise the condition of my hand is great.

09/06/2018 14:46
GailSusan 
09/06/2018 14:46
GailSusan 
Re: Started with Xiaflex but now heading in for operation(s)

I had hand surgery on my right hand 18 years ago, but I went to a hand surgeon with a plastic surgery background. The surgery was long, but he managed to avoid any problems with nerves and I have not had a problem with scar tissue. He started me on physical therapy before my wound was healed and said to expect bleeding. I worked very hard on the physical therapy for months. No splint was used. My right hand is now fully functional. You can see the scar - it goes from almost the bottom of my palm through the base of my pinkie finger, but it is not a particularly noticeable scar and you can barely feel it when you touch it. I know I was lucky to get this surgeon. I'm sure he has retired from the field, but if I need surgery again, I'll go to a hand surgeon with a plastic surgery background.

09/07/2018 00:12
econn 
09/07/2018 00:12
econn 
Re: Started with Xiaflex but now heading in for operation(s)

I had a plastic surgeon who specializes in hands examine my dc ravaged hand about 5 years ago. He recommended Xiaflex as opposed to NA or other surgery, although he is experienced in all dc procedures. I have been very pleased with the results. As anticipated, my middle finger is starting to contract slightly, it seems like there is often no permanent fix for this condition, only periodic remedial intervention.

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disappointed   surgery   background   Xiaflex   Started   flexibility   injections   operation   contractions   heading   particularly   physical   fingers   anticipated   dermofasciectomy   intervention   nondominant   therapy   surgeon   experienced