bailey1:

---

callie:

---

I'm just curious why you would go to "5 Ortho surgeons" to get the exact same information?

I didn't go to 5 Ortho surgeons to specifically get the same information. I had no idea they would all tell me the same thing. The 1st one i went to was in the beginning when i didn't even know what was wrong with my hand. On my first visit (Dr #1) explained my condition and options. I then began to research the Disease and went to a 2nd doctor for a 2nd opinion and he recommended NA treatment. However, he was not trained in NA and reccommended Dr. Pess in NJ. So my 3rd doctor (Dr. Pess) performed NA. The contractures returned about 18 months later, so I learned Dr. Eaton was the best and most trained with NA. So I decided to try NA again with Dr Eaton(#4). The contractures again returned and in the meantime I learned of xiaflex and a few years later I decided to give it a try. So just in the last month I went to a doctor(#5) who was trained in xiaflex and began xiaflex treatment. That makes 5 Ortho surgeons. I did not go to 5 surgeons so I could get the same information. Over the years, for the reasons above I went to five Ortho surgeons and it just so happens all 5 said the same thing. All 5 are Ortho surgeons and all have done surgery on patients with Dup. Not one of them said surgery should never be done, but all 5 said it should only be done when other options have not worked.

Five years ago, I had NA in NC and it was successful for four years. Now my LH pinkie finger is bent and the cord in my hand has lengthened. My nephew, who has extensive Dupuytrens, had Xiaflex in both hands about 6 months ago and the treatment is still successful. My orthopedic surgeon in DC suggested surgery. In my research, I have found that surgery may cause another cord to form and the recovery time is prohibitive for me. So, I went to my nephew's doctor in MD, who was included in the trials of Xiaflex, but he informed me that Medicare may not cover the cost; however, I have supplemental BCBS which may cover the cost. I told him that I would appeal if Xiaflex was denied.

I would be interested to know how many of you who have had Xiaflex have had a reoccurrence of or a new cord form, and after what period of time.

My ring finger has been getting worse over the past 6 months and got to 45 degrees. I decided to go get a xiaflex injection on Monday of this week.

They injected me in three different spots with each injection getting more painful (not sure why). The third really hurt. The dr told me not to do anything strenuous until Tuesday.

I have an appointment for next Monday (1 week later for the manipulation)

On Tuesday evening, I decided to try and straiten my finger myself. After 3-5 attempts and a few pops (yea it hurt pretty bad) I was able to do it. I would say my finger is probable at 5 degrees vs 45 degrees. Amazing to me. I can get my hand flat on a table which I haven't been able to do in almost a year.

My hand, around the area that was injected and now broken, is a bit swollen so I expect it to get better.

I will still go see the dr (despite the 2 hour drive) and see what he wants to do. I don't think there's any thing else but who knows.

I'll keep you posted along with progress.

Given what I went through, I'd absolutely recommend Xiaflex even if it only lasts a year.

Ed

It's been about 9 months since my xiaflex treatment. Right now my PIP joint is contracted at least 50 degrees and I'm worse than I was prior to the treatment.

I am considering options including surgery.

Has anyone done xiaflex and then surgery with positive results?

Not sure what other options I have at this point.

Ed

Update on my Conditionin.

Since xiaflex "fix" only lasted a few months I've had two NA procedures. The first one went very well but lasted about 1yr. When I went back for the second NA procedure, I was it 45 degrees and the release tore open my skin right where my finger bent. It's been about 6 months since that happened and my finger is bending in st the PIP. Because of the tear it took several months to recover. Probably as much as if I had surgery.

I believe my best shot now is surgery.

Can anyone recommend a surgeon on the west coast they have experience with?

Ed

Edited 05/28/15 15:56