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Advice on Xiaflex
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10/07/2012 16:10
hammer 
10/07/2012 16:10
hammer 
Re: Advice on Xiaflex

Sounds like you have done some research,thats always a good thing with DD.My pinky still wants to contract from 20-60 degrees by the end of the day.The bigger finger dosent contract much after 4 Xiaflex injections in that hand.Get a good night splint and it will help alot.You might have a skin split on the pinky.I had a pretty good one once it was manipulated.Keep us posted.Good Luck.Dave

10/07/2012 23:17
FLNative 
10/07/2012 23:17
FLNative 
Re: Advice on Xiaflex

hammer:
Sounds like you have done some research,thats always a good thing with DD.My pinky still wants to contract from 20-60 degrees by the end of the day.The bigger finger dosent contract much after 4 Xiaflex injections in that hand.Get a good night splint and it will help alot.You might have a skin split on the pinky.I had a pretty good one once it was manipulated.Keep us posted.Good Luck.Dave

Brian,

Good luck tomorrow! Please let us know your results. Also, have you considered radiation?

10/07/2012 23:22
brianprice 
10/07/2012 23:22
brianprice 
Re: Advice on Xiaflex

Callie - he was an orthopod who specializes in hands. My results were not great - but not sure if it's him or me. Eventually after all surgeries I have had reoccurrence - with three different surgeons.

10/07/2012 23:26
brianprice 
10/07/2012 23:26
brianprice 
Radiation

I have considered it - but since you are irradiating normal tissue as well - I prefer to do something else first. I've thought of having radiation as a preventative measure after treatment to prevent reoccurrences. Still thinking about that. My insurance company will cover Ziaflex completely - not sure about radiation.

10/08/2012 18:52
LubaM. 
10/08/2012 18:52
LubaM. 
Re: Advice on Xiaflex

brianprice:
Callie - he was an orthopod who specializes in hands. My results were not great - but not sure if it's him or me. Eventually after all surgeries I have had reoccurrence - with three different surgeons.
That's interesting... I think some of us are just "prone" to re-occurrences, regardless of what we do... surgeries or NA !
I had NA twice on same finger with two different doctors, both top experts and both times the contracture returned within six months)...

Not sure yet about Xiaflex (since its a relatively new procedure) and from personal experience RT has been successful in stopping progression inside the treated area.

Edited 10/08/12 21:53

10/15/2012 06:15
brianprice 
10/15/2012 06:15
brianprice 
Re: Advice on Xiaflex

Ok - had the Xiaflex injections last Monday (the 8th) and the manipulation the following day. After seeing my pinkie finger he decided to use the entire bottle on that finger and not treat the others. He said my situation was worse case and that it's likely that i would not get back all of the 90 degrees - the previous surgeries and the 90 degree contracture of the finger were the factors.

He injected into 4 sites in the finger and palm, which took about 20 minutes. He did this without any anesthetic. It was the most excruciating experience that seemed to last forever. I've had three hand surgeries, back surgery and knee surgery and this was the most painful of all of them. He really should use anesthetic if he is going to have a needle stuck in your finger for 20 minutes. My hand swelled up, got bruises, large hematomas, pain and swelling and bruising up the arm into the armpit - the usual stuff. None of this is major or long lasting. That night my hand was very painful and sensitive and I could not imagine going back the next day for the manipulation - but I did - and was very nervous.

He injected Lidocaine into 4 spots in my hand and waited about 15 minutes for it to take effect. Those injections were very painful as well - but fairly short lived. He then manipulated the pinkie finger to break the cords - and yes little popping sounds. The skin tore very badly at the base joint - a large gaping whole which will take several weeks to heal - but it is healing. You could actually seen the broken cords in the flesh. I did not have pain during the procedure as my hand was very numb. My hand swelled up further and bruised some more - but not a big deal - that's just part of the procedure. I don't know how straight the finger will be - he called it 100% straight - but my knuckle and joints are still swollen and tender and bent (5 days later) - we will see what it's like after things settle down. My guess is that it is going to be significantly straighter - but I won't know about mobility and functionality for a few weeks. I'm wearing a split all the time, and doing wound care three times a day.

Dr Verheyden needs to modify his protocol to include pain management during the injections - this was unbearable mostly because of the length. If it had only been a few minutes - I could have tolerated it. But 20 min....no way.

I am a violinist and pianist so I'm looking for some substantial improvement so I can resume playing again. I will repost in a coupe of weeks after I know where things are and if I'm playing again.

10/15/2012 13:14
nriedell 
10/15/2012 13:14
nriedell 
Re: Advice on Xiaflex

Hi Brian,

I am nriedell, the originator of this thread. I have been reading these posts w/ great interest. I had surgery on my pinkie on my right hand 3 yrs ago, and the Dups grew back more aggressively. I'm now worse off than I was before the surgery. My pinkie is at 70% (before the surgery, it was at 60%). My hand surgeon wants to try the Xiaflex although he did tell me that because it's so new, there's not enough info gathered yet to know the long term results. Based on your experience, I'm now thinking of not having the procedure done. It sounds horrible. In fact, I don't know how you managed to type your msg. It also saddens me to learn that you are a musician. I am a fine artist and I would go crazy if I couldn't paint. Thanks so much for your input. I'll be following these posts.

10/15/2012 13:42
callie 
10/15/2012 13:42
callie 
Re: Advice on Xiaflex

BrianPrice, just curious as to why you waited until 90 degrees contracture to have another procedure? What kind of a surgeon did your surgery?

nriedell, what kind of a surgeon did your surgery and what type of surgery was it?

Edited 10/15/12 16:53

10/15/2012 14:47
brianprice 
10/15/2012 14:47
brianprice 
Re: Advice on Xiaflex

I waited because one year after surgery it had reoccurred and the surgeon said they couldn't do anything more for me because they had damaged the nerve in the previous surgery. i was aware of NA about a year ago - but because of reoccurrence rate and fear of damaging the nerve further with needles poking around in there - I figured I didn't have any good options. I was not aware of Xiaflex until a couple of weeks ago when someone read a newspaper article about me retiring from music because of DT - and they had had the injections - so they sent me an email to let me know that I shouldn't give up and where to go in Oregon to get it.

My experience was not pleasant to be sure - but if I get a few more years of playing out of it and i don't immediately get a reoccurrence - it will have been worth it. We will see - it will be a few more weeks before I know.

If they could do a better job of managing the pain during the injection procedure - this wouldn't be so bad.

10/15/2012 14:54
brianprice 
10/15/2012 14:54
brianprice 
Re: Advice on Xiaflex

A hand surgeon did the normal Z shaped incision up into PIP joint and down into the palm.

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disease   nodules   different   surgery   surgeries   contracture   contracted   injection   swelling   surgeon   contraction   brianprice   procedure   because   Wolfgang   experience   Xiaflex   injections   Reoccurrence   recurrence