Friday, January 18, 2019

Dupuytren's Disease a NON surgical option- XIAFLEX

Originally posted 3/7/12
Some of you may have noticed my playing of new courses have slowed over the past few months. In 1978, I severely lacerated my left hand causing some contraction of the ring and middle finger. For 30 years every time a new doctor saw my hand they would tell me I had Dupuytren's Disease and I would respond that it has been that way for years and never changed since the time of my accident. Four years ago, my hands and right foot did start to change and indeed I now had developed Dupuytren's.

What is Dupuytren's? A contracture of the fascia in the palm of the hand which eventually prevents you from straightening out your fingers. It affects mostly men over the age of 50 and women over 60. Doctors don't exactly know what causes it, but it tends to run in families. It is more common in individuals whose ancestors are from Northern Europe. I fit the profile perfectly when it hit me, 58 years old and from the northern British Isles. There is no cure for Dupuytren's Disease and even after treatment it may reoccur. Until recently the only option was some type of surgery that may include splinting for 3-6 months along with rehabilitative hand therapy for a couple of months. A couple of things that may accelerate the contraction is Diabetes and the use of Glucosomine/Chondroitin.

In July of 2009, the contraction had gotten to the point that it was starting to affect some of my daily functions but I could still hold a golf club and play to my 2 handicap. I decided it was time to see a hand specialist before it started to screw up my golf game. The doctor I saw luckily was involved in a clinical trial for a new drug, Xiaflex, and told me I was a good candidate for its use. The new procedure involved injecting this drug into the palm (cord) and then a day later under anesthesia manipulating the hand. Unfortunately, the FDA had not approved it yet and there was no indication when they would.

Inpatient waiting for the FDA, I got a second opinion five months later from a doctor at the Jacksonville Mayo Clinic. The hand specialist there after examining my hand for all of 15 seconds, in between taking four non-medical related cell phone calls, told me that I needed surgery and possible skin grafts that would cost about $18,000 and at least 3 months of rehab. He said my case was too advanced for injection therapy and charged me $780 for the 10 minutes, I sat listening to him talking on his cell. The old saying, "If a man only has a hammer everything looks like a nail" certainly applied to this guy. The contraction of my ring finger was about 30 degrees at that time.

Fortunately, the approval from the FDA of Xiaflex came in early 2010 but my state BC/BS health insurance kept on saying it was an experimental procedure and wouldn't cover it. After 46 other states and Medicare made it part of their coverage, Michigan finally approved it in January of 2012. Over the past 6 months the contraction had accelerated to about 90 degrees where it had become difficult to even put on my Bionic golf glove, but I could still play golf but my handicap was now up to a 5. Because I didn't want to spend time in snowy Michigan I got a referral to a specialist, closer to my winter home, at the University of Florida Orthopedic and Sports Medicine Institute to perform the procedure.

On Feb. 16th the major contracted cord in the palm of my hand was injected and the next day manipulated (snapped). I have had about a 75 degree improvement in the range of motion and on the 14th day was swinging a golf club. Today on Day 19, I was comfortably hitting full shots. Embedded below is a pictorial timeline of my progress. For a more extensive explanation of the procedure just Google XIAFLEX.

The drug cost for one injection was $4,000 and the Doctors fee less than $1,000. I had the major cord injected and two minor ones are also involved which I may need treated in the future if I want more range of motion. Currently the FDA only allows injecting one cord at a time. I am back to where my fingers were 4 years ago and satisfied with the current result. I have been wearing a splint at night and will continue it's use for about 6 months or if I notice any relapse. Only time will tell how this new procedure works and if there is any relapse.

This is not an uncommon problem among older men and hopefully I have made you aware of an alternative treatment that is less expensive and gets you back on the golf course much quicker than the traditional surgical procedure. I hope to start experiencing new golf courses very soon.

UPDATE 1/18/19

Seven years later my left hand is still stable and functional but three years ago my right ring finger started to contract, just like my left hand had done. In December 2018, I returned to UF Orthopaedics & Sports Medicine Institute in Gainesville for a consultation with Dr Dell. Since my last correction, the FDA now allows XIAFLEX to be injected in two cords and I was told that Medicare will cover the procedure. Dr Dell told me my hand had contracted enough to have the procedure done so I set it up for the 8th and 9th of January. Dr Dell carefully injected the ring finger four times and I was told to return in 24 hr to have my hand anesthetized and manipulated. The morning of my return, as I was stretching my finger, surprisingly it snapped and I did not need anymore done when I arrived at the clinic.

I am happy to report that nine days later I was again playing golf and feeling no discomfort. What an alternative to the 3-6 months of healing that the traditional surgical treatment would have kept me off the links.Thank you Dr Dell and Staff at UF Shands!