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6 weeks post open fasciectomy
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04/05/14 04:32
AnneD 
04/05/14 04:32
AnneD 
6 weeks post open fasciectomy

I had surgery 6 weeks ago by a well known surgeon whose name I won't mention at this time. It was on my left hand and the small finger was contracted at 90 degrees, and I also had numerous nodules removed on my middle finger, although it was not contracted. I have an aggressive form of this disease which did not respond to NA which I tried a year ago. It was hard to do my job with my hand in this condition, so I am grateful for the opportunity to try surgery. That being said, I have had swelling, stiffness and fairly significant pain 24/7 for six weeks now. My incisions were zig zag down two fingers into mid palm. I had stitches which half came out at 3 weeks and half at 4 weeks and still the incisions seemed to gap a little although they did not break open or drain. I sleep with an extension splint, which disturbs my sleep although all my fingers go completely straight. I wake up with fingers that won't bend and it takes me about an hour of stretching to make a fist, which I have to struggle throughout the day to repeat. The pain is burning and stabbing and shooting. I have no grip strength. I go to therapy and have also a dynamic extension splint for the little finger that is intolerable to wear more than 5 mins. I have silicone sleeves and a pad for the palm, I have an isotoner glove, and I have vitamin E and bio oil that I massage into my scars and then put on a tight cotton glove. I alternate between holding my hand under cool and warm water, stretching, exercising, and different gloves because I never feel good. What I am wondering is whether I have nerve damage since the dupuytrens wraps itself around nerves and has to be scraped off, or if this is normal for this number of weeks post op. I kind of thought I'd be normal by now and instead I feel like I've traded contracture for pain and swelling. I would dread doing this on my other hand which is headed in the same direction.

04/05/14 04:49
callie 
04/05/14 04:49
callie 
Re: 6 weeks post open fasciectomy

It was at about eight weeks when my surgery started getting better. Everything started falling into place. My surgery (90 degrees contracture of little finger) was over 12 years ago and the finger is still perfect. I did the therapy on my own by mostly keeping scar tissue moist (Aveeno lotion) and flexing throughout the day. I did wear a night time splint for nine weeks.

04/05/14 08:30
wach 

Administrator

04/05/14 08:30
wach 

Administrator

Re: 6 weeks post open fasciectomy

Anne,

the swelling after fasciectomy does happen and for some patients it might take longer to go away. After my own surgery (just ring finger) my hand was heavily swollen and it took about 2 months until I was able to actively make a fist again. It took 5-6 months until the swelling was completely gone. This is not typical but it does happen. Today, 12 years later, I can still feel the difference to the untreated other hand but I have no recurrence. My operated finger is straight and my hand is fully functional.

I would just wait and see, do some rehab and talk to the surgeon what to do to recover.

Wolfgang

04/05/14 13:23
flyfisher66 
04/05/14 13:23
flyfisher66 

Re: 6 weeks post open fasciectomy

Hi , I also had open fasciectomy on my left hand ( 12 weeks ago) all your post operation symptoms are very similar to my experience , apart from the pain ( 3 hour operation) . I had "zig-zag" incisions from the base of my thumb up to the top of my index finger , middle and ring finger . All I have been told is that physiotherapy is the treatment for the swelling , "putty exercises" and stretching , with massaging E45/Bio -Oil often during the day . I have to rotate the usage of 2 types of splints ( whole hand and thumb/index finger ) at night . Lack of sleep is an issue .. ( I even periodically have taken sleeping pills , to try and get a good nights sleep !!). I also have dupuytrens in my right hand , and have been told the operation would be a skin graft fasciectomy , after this experience on my left hand there is NO chance I am letting a surgeon anywhere near me .

04/05/14 15:20
pia2some 
04/05/14 15:20
pia2some 
Re: 6 weeks post open fasciectomy

I had surgery in September and it involved the pinky and middle fingers of my right hand. Same kind of zig zag incision down both fingers into the bottom of the palm. My hand still swells!! And I'm seven months out.

I would say that what you are describing was exactly my experience at six weeks. I don't think I had pain for that long, though. My surgery was not successful and my hand is now in much worse condition. I, too, am going to need the dermofasciectomy. At this point I cannot even imagine going through that surgery. Since it is my right hand that is so messed up it's got to be done at some point. I need the use of my hand. My left hand is affected, but not as severely.

Hang in there and give it more time. You will heal!

~ dawn

04/06/14 18:19
AnneD 
04/06/14 18:19
AnneD 
Re: 6 weeks post open fasciectomy

Thanks everyone for sharing your experiences and for encouraging me to wait and see.

05/08/14 17:52
zinkadoodle 
05/08/14 17:52
zinkadoodle 
Re: 6 weeks post open fasciectomy

I'm scheduled for surgery on June 9. My history is, as some of you know (though I haven't been here for a while), is that I had surgery on my left hand over 12 years ago, when it was the only option for DC. It was a drag, fairly long recovery, but to this day, my hand is perfect. Never had any recurrence, and life is good.

But, now it's my right hand's turn. I had Xiaflex in March 2013 and it was an extremely painful, albeit a temporarily successful procedure. The benefit lasted only about 7 months. Now, my hand is worse than before the Xiaflex, with more nodules and more contracture. All in all, I'd call the Xiaflex a total failure, and I'll never do that again. And, having done Xiaflex, the surgery is now more complicated, given that the resulting scar tissue is something the surgeon will now have to deal with. I hate Xiaflex.

The ring finger MP is about 50 degrees contracted (35 degrees before Xiaflex) and my PIP is 35 degrees now (same as before Xiaflex). I have also developed cords in my middle finger, and my MP is at about 15 degrees, but the PIP is fine. I've opted not to do the NA, because it's pretty much a guarantee that it will also fail, with upwards of an 80% recurrence rate. Given my history with surgery, that's my preferred option right now. Doing my right hand will be a drag, because it's my dominant hand, but I'm so ready.

Am I scared of the surgery? Absolutely!! But, I told my doc that I'm more scared of doing nothing than having surgery. I stated something stupid, to the effect that if I do nothing, I'll end up having fingers lopped off. He said that he had to do that with a patient a few weeks ago, because of Xiaflex complications, but reassured me that it is very, very rare for that to happen. I know that it is, but it's not unprecedented. So, I'm going forward. Hopefully, I'll see the same success that I have experienced on my left hand so long ago


~~ Diane

05/08/14 23:11
callie 
05/08/14 23:11
callie 
Re: 6 weeks post open fasciectomy

Diane,

That is interesting. My surgery was 12 years ago and the results were perfect and then last year my other hand started to be affected. I have always thought that I would have surgery again if needed rather than trying the short term fixes given how I responded to surgery. Then again, certainly all of us know that there are no guarantees with any procedure. And, I had very little pain with the surgery.

05/09/14 07:11
AnneD 
05/09/14 07:11
AnneD 
Re: 6 weeks post open fasciectomy

I am now 11 weeks post op. I quit taking Tylenol for pain, naproxen for inflammation and Benadryl to sleep, a few days ago. The pain is tolerable and minimal now. I have swelling that interferes with making a fist in the morning, and I sleep with a splint still because I don't want to loose the extension.. I wear a tight isotoner gloves a lot night and day- as well as golf gloves during the day to help the grip. My grip strength is weak, 10# and my palm feels like it needs more padding. I have a few spots of numbness and occasionally my median nerve acts up. The scar is thick and bumpy /overgrown. I try to flatten it with silicone sheets. The numbness is at at my finger tips and the base of my fingers. This recovery is way harder than I imagined it would be, and until this week I was kind of regretting surgery, but now I can see that the healing time is really long but if the hand continues to improve it might be worth it. Looks to me like a 4-6 month recovery.

05/09/14 14:17
zinkadoodle 
05/09/14 14:17
zinkadoodle 
Re: 6 weeks post open fasciectomy

Anne, it was a long recovery for me 12 years ago, but totally worth the surgery. That surgery was a 100% success. I developed a few cords and nodules after the surgery, but to this day, no contractions at all. Except for the scarring and cords, you'd never know I had any problems with my left hand. It's fine now.

Now, as much as I hate the thought of surgery, I'm going forward because I know I stand a fighting chance, given my past history. The thought of post op recovery makes me cringe, but Xiaflex was an immediate misery that accomplished nothing in the long run. Are there any guarantees? Of course not, and I'm not fool enough to think so. But, my disappointment if this upcoming surgery goes south will be huge, of course. But it's certainly worth the risk. As I said before, I'm more afraid of doing nothing than having the surgery.

Hang in there. Give your recovery a chance, because as you now know, it's not a quick thing. Not by a long shot. But, it will recover.

~~ Diane

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