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My Xiaflex Journal
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02/07/2011 17:18
marigail 
02/07/2011 17:18
marigail 
Re: My Xiaflex Journal

Thanks for sharing!! Mine is in my pinkie of my left hand and there are nodules on the right hand causing some contraction of the ring finger, but that is not ready for treatment. Did the shot and the straightening hurt? (It's getting close and I'm getting nervous!! I was canceled out last week at the last minute because of the weather, but the time is upon me once again.)

02/07/2011 17:33
dianataylor 
02/07/2011 17:33
dianataylor 
Re: My Xiaflex Journal

We have had a bit of snow here in Tulsa as well (over 16" & more tonight), So my appointmet was postponed as well.

All shots hurt, so yes it did, but well worth it. When I went back the next day for manipulation, he gave me pain shots first, so I didnt feel much. I'm just glad we have a doctor here that is certified, so I don't have to travel.

Good luck and let us know how it goes.

02/07/2011 17:38
marigail 
02/07/2011 17:38
marigail 
Re: My Xiaflex Journal

Thank you. I am looking forward to getting better use from my finger again. I will let you know how I do tomorrow. It certainly has been quite a winter all over!

02/07/2011 19:21
abba55 
02/07/2011 19:21
abba55 
Re: My Xiaflex Journal

I find it difficult to believe that your doctor injected you with an anethestic BEFORE injecting the Xiaflex. All of the protocols suggest that the Xiaflex be injected without any anesthetic. VERY suprising.......

One week after my first Xiaflex injection, I am still in considerable pain. Having to go through this six or seven more times is not appealing at all. I will give surgery additional consideration.

02/07/2011 19:32
dianataylor 
02/07/2011 19:32
dianataylor 
Re: My Xiaflex Journal

No. He injected me the next day before he did the manipulation. Sorry for the confusion

02/07/2011 20:20
marigail 
02/07/2011 20:20
marigail 
Re: My Xiaflex Journal

I am sorry to hear that you are still in considerable discomfort a week after the injection. Has the finger straightened at all? My doctor (who is a novice at this....) told me that he thought I'd just need the one shot in this finger, but that he wouldn't be surprised if I didn't get full range of motion afterwards. He did tell me that surgery down the road is still an option.

02/07/2011 21:16
dianataylor 
02/07/2011 21:16
dianataylor 
Re: My Xiaflex Journal

I need to add some more to my answer to you. My father was diagnosed when he was in his 20's which is rare. I remember five surgeries he went through that were painful & had long recoveries. He would have been thrilled to have had a chance to only have injections. He also had it in has feet as do I. Now they are calling it plantar fibromatosis, but the treatment was the same...surgery.

I was diagnosed in my thirties. (this was also very young for this crap). I have chosen not to have surgery due to my experience with my father. When I finally decided to relent and went to a doctor to start the surgical process, he told me about the promise of this drug & suggested I wait.

Yes the injection hurts & yes the hand does swell & bruise, but after three injections, I would never consider surgery as an alternative. My dupuytrens is advanced with large angles and the injection in my ring finger is nothing short of a miracle. My doctor told me that my case was the worse that he had seen. I look forward to having my index finger straight again. I will be able to hold a glass without a stem!! Should be done next week.

I am not trying to tell you what to do, but after three injections, I feel like a good example of injection instead of surgery. What ever you decide, I wish you well.

02/07/2011 21:35
marigail 
02/07/2011 21:35
marigail 
Re: My Xiaflex Journal

Thank you for filling me in on your history. I am having the injection tomorrow in the one hand---pinky finger of my left hand. The doctor feels that if we don't get ample improvement, surgery will remain an option. I'd prefer to have less than 100% use of the hand than undergo surgery.

I don't know how I got Dupuytren's. I know it is supposed to be hereditary, but I've not found one person on either side of the family who has it, nor do they know of anyone who does. My ancestors did come from Eastern Europe, though, so someone must have carried the gene. I was in my mid-50's when it showed up.

Mine started in the ring finger of my right hand about 10 years ago, after I was in a car accident which damaged my right arm from the elbow to the shoulder. It is very slight, and has not gotten any worse since the onset. About 5 years ago the finger on the other hand began to bend, and that has gotten progressively worse. Like you, the injection was in the trial stage, and my doctor suggested I might wish to wait for that, which I've done. In the meantime, that finger is just about at a 90 degree angle, so hopefully the injection will help it and that will be all I will need to do. The doctor is surmising that the reason they other hand started was due to the trauma of the accident, but I've not been able to locate any validation that that could be the case in all that I've read.

Right now I'm just glad that something will be done tomorrow. Of course I don't look forward to the discomfort, and the time I'll lose not being able to do all I usually do because of it, but I have to hope that I will be satisfied with the results over the long term.

Please keep me posted on how things progress for you.

02/07/2011 21:51
dianataylor 
02/07/2011 21:51
dianataylor 
Re: My Xiaflex Journal

My understanding is that the gene is passed from mother to son and father to daughter even if the one that passes the gene does not show signs. You are correct that it seem to be mostly descendants of northern European which I am.

Just an aside. I used to tease my Dad that he could have given me his wavy brown hair or his brown eyes...but he gave me this

02/07/2011 22:41
marigail 
02/07/2011 22:41
marigail 
Re: My Xiaflex Journal

My father passed away in his mid-fifties. Perhaps he would have developed it, or, as you said he could have just carried it. I have a sister who shows no sign of it, but she's a little younger than I am. I guess it doesn't matter so much---as long as it can be treated!

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