Evesawicki:

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I've had dupuytrens in both hands for several years now, but didn't have any significant problems until the last six months. Right hand pinkie had a 45 degree angle develop and cord was continuing to contract. Limited mobility and some pain. Dr. Wyn from Florida Orthopedics here in St. Petersburg treated the cord with Xiaflex. I had three injections (moderate pain) into the cord, some significant swelling in the following hours and had the cord pop while using the splinted hand inadvertently. Went back the next day for manipulation (unnecessary as it turned out) and Dr. Wyn said the injection worked as intended. Now eight days later, using a splint at night and using the hand during the day and swelling is down considerably, finger is straight, pain is gone, mobility is perfect. Truly amazing.

I finally submitted to a Xiaflex treatment a week ago followed by manipulation two days later. I have been tormented for 3 years as to what course of treatment would be best and sought the advice of no less than 6 ortho surgeons and hand specialists in Michigan where I live. Three recommended only surgery, one actually said he wouldn't be comfortable with ANY option due to the location and severity of the disease (right hand, little finger), and two felt that Xiaflex would probably be something to consider. My father had the disease (in both hands) but at a much later point in his life (70s) and two surgeries left his hands mutilated, scarred, and his fingers still crooked after a few years. So my inclination toward surgery was low. I read everything I could about Xiaflex including those all-important reviews by patients and although the responses were generally extreme--love it or hate it/never again--I proceeded with the treatment. Here's my bullet-point review, after one week:

1. No one could give me even an estimate of the cost of this process. I have Medicare and was told several times that "Medicare covers 80% of the approved cost of Xiaflex"--EIGHTY PERCENT OF WHAT? Seemed a simple question to answer but again, no clear response (after further digging it appears a vial of Xiaflex has a street cost of approx. $3000 USD, however that is not necessarily the "approved cost" that Medicare bases its coverage).

2. The injection(s) process was much more painful than I had assumed based on reading reviews from patients. I am generally tolerant of pain and have a decent pain threshold, but those multiple injections HURT!!!

3. I seemed to experience all of the textbook negative side effects within a few hours after the injections: swelling beyond just the injection site (up my right arm), pain in that arm pit, a general feeling of being "sick" (lethargy, achy, etc).

4. Two days following the injections I returned for the manipulation. The doctor froze my palm and last two fingers then began the vigorous movements to break the cords that caused retracting in my little--and to some degree the ring--finger. Despite the anesthetic the process was painful. After 5-10 minutes of "working the area" my little finger stood reasonably straight (except for the PIP joint which is going to be treated in a few weeks), having previously been at 90 degrees inward, and the ring finger perfectly straight. However that entire region including the palm area below was bloated and bruised. Further, I had the skin breakage many people report--I am sure due to the severity of my contracture in the little finger. I left the doctor's office with a molded splint and a hand completely wrapped in gauze, with a prescription for an occupational therapist to custom-make a hand splint and a revisit to the doc in a week for a follow up.

5. I fortunately was able to obtain an immediate appointment with the therapist 3 days after manipulation who custom-molded a splint that basically holds the last two fingers together and erect. Unfortunately the new "custom" splint is much more uncomfortable than the one the doctor molded then wrapped immediately after manipulation. However its Velcro connectors allow it to be removed--a real advantage.

6. I am currently wearing the splint day and night, with the exception of two 2-hour periods during the day to allow the damaged palm area to heal and to get some air. Nighttime sleep has been disrupted due to the bulkiness of the splint, etc but I've had sleep issues in the past so that's old news. Coincidentally I think I contracted "frozen shoulder" a few months ago--on the other side of my body--so between the DD and that condition my sleep continuity is pretty much non-existent.

I will be scheduled for a second vial of Xiaflex to treat the remaining bend in my little finger PIP in "a few weeks" according to the doctor. Based on my recent experiences I am not looking forward to that, however I feel that I have to go-the-distance at this point. Will report back later as my condition and success of treatment becomes further revealed.

After concluding that the Xiaflex process was the lesser of all evils I investigated I went to the company site, inserted my zip code for a local physician and the result was Gregory Sobol MD, (248) 644-3920
HAND SURGEON
BEVERLY HILLS ORTHOPAEDICS
17877 W 14 MILE RD
BEVERLY HILLS, MI 48025

Ironically my shoulder doctor (sports med) recommended Sobol a few weeks before I did my search, so I figured that was an even better reason for choosing him. Plus he was ranked #2 by the company in terms of administering the process.

As to RT, I have not been able to identify a local medical provider who offers that procedure.

Edited 05/08/18 18:10

I searched online until I found a Dr who did Needle Aponeurotomy (NA) with lipo (fat) injections. Having had Xiaflex on my left hand two years ago, the fingers are now bent more than ever. I would NEVER have Xiaflex (at $3,300 each) again. 3 weeks ago I went to Dr. Roger Khouri, Miami Hand Center and had NA with Lipo in my right hand. Pinkie and ring finger were at 45 degrees. No cutting, no scars and almost no pain. Bandage and splint for 7 days, currently a night splint. My right hand is FLAT!. I can make a fist with all fingers to about 80% full closure after three weeks! If you are in St Pete, take the time and go to Miami to Dr. Khouri before you have Xiaflex. At least check it out.

One month after Xiaflex and the swelling in my palm and two fingers is just about gone. The little finger is still relatively "stiff" but that's due to the excessive amount of collagen that is still in that finger. Overall, I am pleased with the results and the pain and torture of having the Xiaflex injected coupled with the manipulation is becoming more distant a memory. My plan is to get the 2nd vial (I paid for two!) injected into the little finger in July, hoping the manipulation to break up the collagen is less intense than the larger area treated in the palm.

Honestly, if my fingers remain relatively straight (20% or less contracture) for a year or longer, I am willing to go through all of this again--that is until/unless another treatment option presents that is less invasive. NA is not an option for me due to the centralized location of the disease in my little finger, and the potential for damage to either a tendon or nerve, either of which would render collateral damage to any positive aspect of that procedure.

My cost was $800 per vial (Medicare pays 80%) plus $174 for the injection and manipulation visits.