Had manipulation yesterday on my multiple injection and was happy to break the cord going to the pinky and one cord going to my ring finger which released my midldle finger.I still have one a huge cord left that has my ring finger which is next in 60 days.When doing a multiple injection they start on the most outside cord and move in to the next,so the big one has to wait.Nice to have my middle finger back,you almost have to have it while driving in Nashville.lol.Dave
Progress!! Good for you!!! Are you getting the other two also done as multiple injections at one time? If so, this is so close to being behind you. Maybe not forever, but ... well.... you know.
Because I'm going to take part in the multi cord trial, I have to undergo a pre-surgery clearance and get baseline data for the test. I'm doing that on Feb. 25. Then, the Xiaflex injections must take place within 21 days of that. So, early to mid March is when I get it done. As much as I'm not looking forward to it, I just want this to be behind me, as well.
So, how are you feeling? I trust the pain has subsided significantly. And, I do understand how important that middle finger is. I drive on Long Island, NY after all.
I go back for my follow ups then after my 60 days they will discharge me from the study.Then I can receive up to 3 more injections one injection at a time every 30 days.So we go back to doing it by the label after they discharge you from the study.First 24 hours after the multiple injection are the worst part.I went back 2 days after injections this time and i had a lot less trauma than last time.Hardly any swelling today and i had manipulation on Thursday.I am doing my finger stretches already without much pain.Ill keep you posted on progress and good luck with your study Diane.Take Care, Dave.
Looks like I'll be going to Charlotte NC. I hate to say it but I am really looking forward to it. Not the pain or procedure, but the effects after. You all have inspired me and I think it is awesome to be on the ground breaking side of advancement. Think of how many will benefit from this study if it proves to be safe and efficient to address two cords in one sitting. Thank you again for sharing.
I had a multiple injection last Tuesday,manipulation on Thursday and I was back to work on Tuesday.Hardly any swelling this time it was great.I will have a much bigger skin split when he does my big cord in 60 days.Good luck.Its a great drug and when they can administer 2 or even 3 injections at one time this stuff will take off like crazy.The label restrictions right now have the Docs scratchin their heads.only bein able to do one at a time in only one cord and one joint.When they can put a shot where you need it rather than just an isolated area ,then we will see the full potential.Its comin.It will be great for all of us.Dave
Thanks, Dave, for posting this. It makes me feel so much more confident about the procedure. I am hoping that once it takes off, the cost will drop dramatically. Even though it's been approved by the FDA, it really is still in its infancy, in its testing stage, obviously. In fact, being in the trial is what is making it affordable to me. It will be free. I do have insurance, but the out of pocket expense would still be high. It's going to be great when it can be afforded by everyone who needs it. And certainly me when, and if I need it again.
That being said, I sure hope that pain thing gets sorted out. That scares me more than anything. It would be better, I think, particularly for multiple injections, if they can anesthetize the hand prior to Xiaflex injections too, along with the manipulation on day two. ~Diane
It appears to be a Dr Glen Gaston at OrthoCarolina. I live just across the mountain from Asheville so a bit of a drive - but I think I would drive to the moon to get into this study. How about you? Are you going to sign up?
Oh you lucky girl. I was told that they wouldn't do anything until it had progressed to a certain point. That there was really no need until it had gotten "Fully impaired" Yes, I am looking to do the Xiaflex. I understand from this forum that it has it's pros and cons as compared to NA. I had NA on my left hand with good results on my index finger and a basic fail on my pinky. My right hand is far more effected on my pinky, ring and middle finger. I am trying to be realistic in my expectation but it is hard not to pray for a "normal" hand. Someone asked me recently what it was like - does it hurt? Though , aside from occasional throbbing it really isn't painful, it can be sheer torture. The best way I can describe it is the feeling you got as a child when someone was holding you down while wrestling and you felt panicky. Or if you were to be put in a straight jacket and unable to move your arms in a natural and free way. Imagine being put into a box that was too small and you had to keep your legs bent and would never be able to stretch them out straight. That is what DD is like....