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Off to Xiaflex...again
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07/06/2011 14:08
coachG 
07/06/2011 14:08
coachG 
Off to Xiaflex...again

So, I'm heading to Walla Walla, WA for my 2nd Xiaflex treatment on my right ring finger. This annoying finger has gone through:
-1 surgery
-4 NA procedures
-1 Xiaflex treatment

Obviously none of them have lasted very long! Surgery was 8 years ago, so you can do the math & see how long each treatment has worked--about 1 year. I had Xiaflex a year ago, only because NA has stopped helping due to scar tissue buildup in the palm. I'm not looking forward to more treatments, but I'm down to my next-to-last option (not ready to amputate the damn finger just yet!!). Fortunately, this is the only finger affected on my right hand. I've outlined all I've done on my left hand in earlier posts, so I'll leave that out for now.

I'll post more about the treatment later.

07/06/2011 16:02
spanishbuddha 

Administrator

07/06/2011 16:02
spanishbuddha 

Administrator

Re: Off to Xiaflex...again

Hi coachG, I wonder if you're a candidate for radiation treatment after recovering from the Xiaflex, as it sounds like your Dupuytrens's is active. It may help slow it down. If you do a search on this site for RT after surgery you can find some other people's experiences. Best wishes either way.

07/07/2011 01:33
deeproot 
07/07/2011 01:33
deeproot 
Re: Off to Xiaflex...again

Wish you well, hope you have a good trip.

07/07/2011 01:33
coachG 
07/07/2011 01:33
coachG 
Re: Off to Xiaflex...again

RT isn't an option for the hand I'm having work done on--at least according to the 2 doctors I talked to. Once the nodules get too big & there is significant contracture, RT wouldn't do much good. I've had RT on my other hand that has nodules but little contracture. So far, so good on that hand. Nodules haven't progressed, though they haven't shrunk like others mentioned.

Right now, hand is awful swollen & very sore at the point of injection. It looks like an allergic reaction to a bee sting!

07/07/2011 01:40
flojo 
07/07/2011 01:40
flojo 
Re: Off to Xiaflex...again

I wish you well. Stupid disease

07/07/2011 18:28
coachG 
07/07/2011 18:28
coachG 
Re: Off to Xiaflex...again

Back home after manipulation...typing is a struggle! Hand still really swolllen & numb from lydocaine. Had to get extra lydocaine as there was still pretty sharp pain as the doctor started the manipulation. After 2nd round of meds, manipulation was more difficiult than expected. Felt the pop of the cord, and doctor kept the pressure up to make sure it was all the way popped--I'm sure my knuckle will be sore as the pain meds wear off.

Finger is straight--injecton at PIP joint--but I may have to go back for 2nd round with injection in the palm this time. That's where all the scar tissue has built up, so I'm sure that will be a "fun" manipulation.

I'll be back with more in the next couple of days.

And yes, this is a stupid disease!

07/09/2011 23:03
coachG 
07/09/2011 23:03
coachG 
Re: Off to Xiaflex...again

2 days after manipulation--
injection site is still VERY sore & swollen. Bruising around knuckle (I think the Dr. damn near dislocated it trying to pop the cord!!). PIP joint is straight, but I think I'll need another Xiaflex treatment in the palm to release the MIP joint--but, not real sure how it will work as there is a lot of scar tissue around the cord from my surgery (1st treatment I chose about 10 years ago).

I still can't make a fist, as the swelling & pain prevent it. Managed to get my workouts in, focusing on not using the hand. But, during my workout today I smacked the finger with my other hand & that really sent a shock...

Next Sunday I'm participating in a mud run--the Warrior Dash--so I hope I'll be better by then. I'll need to grab ropes & climb walls & will need both hands. I guess I'll find out!

I will not let this disease keep me from doing the things I love.

07/10/2011 07:43
spanishbuddha 

Administrator

07/10/2011 07:43
spanishbuddha 

Administrator

Re: Off to Xiaflex...again

Hi coachG, since you've had it done before I think you can compare the healing and recovery with the first time. I suppose it is possible the doc over extended a joint in trying to break the cord, so watch out for that as I find finger joint injuries take a while to heal.

07/10/2011 18:21
coachG 
07/10/2011 18:21
coachG 
Re: Off to Xiaflex...again

One of the problems I have is to take care of my injuries like I should. As a coach, I'm real quick to give advice to ice & elevate. However, as a man, I tend to err on the side of "tough it out" & not care for my injuries like I know I should. I didn't ice/elevate until late on day 2 & have been pretty diligent about continuing the treatment into day 3. This morning I iced for 20+ minutes & have noticed the swelling going down--I can almost totally close my fist. The hard part is to ice the injection site which is on the pinky side of my ring finger.

This is my 3rd Xiaflex treatment, 2nd on this finger & at this site. I had a pretty signivicant nodule treated last year, which basically reappeared during the last year. In comparing, I'd say the first treatment was worse as the nodule was larger & harder than this one. The treatment on my pinky of the the other hand was easily the worst. The nodule was very large, very hard & the Dr. had a diffficult time penetrating the nodule with the Xiaflex. That nodule is now returning, though it didn't all go away during the first treatment. I think this was because there were 2 cords & nodules at the site. Contracture is pretty minimal right now, so I don't think I'll seek treamtnent in the forseeable future.

07/11/2011 17:50
moondanc 
07/11/2011 17:50
moondanc 
Re: Off to Xiaflex...again

Hi there,
Thanks for posting your experience. I think I may be one of the few on this forum who has had: RT on both hands, 4 NAs and Xiaflex (during trials). 3 of the NAs and the Xiaflex were on just one finger--ring finger of RH--sequence- NA, Xiaflex, NA--that lasted just a few months--another NA, then RT. That was about 1-1/2 years ago and the pinky finger on my RH and the palm below it-- NEXT to where I had the Xiaflex is hideous and contracting so fast I can almost see it. It seems as though the Xiaflex created a dead zone and so the DD has become even more aggressive right next to the area and now instead of just having cords on my palm and front of my finger(s) I have cords up both sides of most of the affected fingers. I am not a Xiaflex fan.

Unfortunately, I also have DD in my left hand-- I have involvement/cords in 6-7 of my fingers. I need to go see Dr. Eaton again (this will be my third trip) and when speaking to his office several weeks ago I was told that Dr. Eaton has yet to use Xiaflex! That was REALLY interesting to me. The office also said that if he had the "right patient" he'd be open to it. Prior to entering the Xiaflex trials in 2007 I did consult with Dr. Eaton and at that time he told me saw no reason NOT to enter the trials-- I wonder what is making him so cautious?

Moondanc

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