|In Paris. |
The disease is named after Baron Guillaume Dupuytren, the surgeon who described
an operation to correct the affliction in the Lancet in 1831.
About five or six years later I noticed I could no longer flatten my hand, that a cord had started to form under the skin on my palm where the nodule was. and it was contracting my ring and middle fingers toward my palm.
I went to Dr. Thomas Wiedrich, a hand specialist, who diagnosed it as Dupuytren's Disease (also called Dupuytren’s Contracture), a condition where, even though the fingers can’t be straightened normally, it doesn’t inhibit movement, flexibility or strength. The degree to which the fingers curl varies, sometimes so much that it complicates everyday activities like grabbing large objects, putting your hand in your pocket, putting on gloves, etc. The doctor told me it was common in people of European descent and mentioned Russian Jews in particular (of which I'm one), and that it is genetic.
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|As far as I could flatten my hand |
prior to the injection - 2008
The doctor heading up the study here in Chicago (where I live) moved to Detroit and the study went with him but I stayed on the list thinking Detroit wouldn't be too far to travel for the benefit of this new treatment. But then the doctor left the study so it took more time to move it to various locations around the country. When they called to tell me there was a study in Rockford, IL (an hour and a half away) and asked if I still wanted to participate I said, “Absolutely!” and was number one on the list.
FALSE START IN 2007:
Finally, after several false starts and stops, the clinical trials began again and in October of 2007 I had my first injection. I wouldn't know if I got the placebo or the real thing until this particular series of trials were complete, but I was very excited. I had the injection on a Monday, my hand was bandaged completely and I was supposed to keep my fingers as immobile as possible. The next day when I took off the bandages my hand looked the same as it had before, which didn't bode well since they'd told me to expect bruising and swelling. I went back for the “manipulation,” which is when the doctor stretches the hand to break the cord. They told me this would hurt but because it was a clinical trial they needed to be sure the results were strictly from the drug so they could not use any kind of anesthetic.
Well, the doctor stretched and stretched, and it hurt like hell but nothing “broke.” It was evident it wasn't working, so the doctor didn't keep trying (thank god). It looked like I was one of the "lucky" ones who got placebo but that wouldn't be confirmed until all the results were in and they were able to open the records. I had three injections (the amount provided in this trial) and the result was the same each time. Nothing.
THE REAL THING IN 2008:
After my third injection I had to wait until everyone in this round was finished and they opened the study. It was eventually confirmed that I had gotten placebo and so, finally, on June 16th, 2008, I went for my first injection of the Xiaflex.
Excruciating. The doctor basically stretched the cord until it "popped" and then kept doing that until it stopped popping, about 5 or 6 times. I'm not someone to make a scene in public but I cried out a bit when he did that, much to my embarrassment. Picture the seam of a garment with all the little stitches and then picture stretching that seam until the stitches break. That's what it felt like. I could feel each time the cord broke.
I had gone alone for this, thinking it wouldn’t be that big of a deal, but it was very traumatic.
Fortunately that pain didn't last long. My hand was very sore after that but manageable.
I had a month of recovery time and then I went for the second (of a possible three) injection. I went alone on Monday, July 14, 2008 for the injection but on the 15th when I went back for the manipulation my Bill went with me.
I knew something was up because I had more swelling than the first time, more bruising and it was more painful. I had hoped that it wouldn't hurt as much this time but I was very wrong on that score.
Bill stood to my left, holding my left hand and his arm around my shoulder. The doctor took my right hand and said, "Are you ready?"
"No," I said, "but let's get it over with."
There are not words to describe the pain. It was stunning. Much, much worse than the first time and I thought the first time was as much as I could bear. Again the doc kept stretching until the cord started popping and that first pop felt as if he'd broken a finger. I screamed. Out loud. So embarrassing. And then he popped some more and I was screaming (loud!) and crying, and my Bill was holding me so tight. He didn't know what to do. "Oh, sweetheart," I heard him say pityingly, through my fog of pain.
Gore Alert (not Al, the blood and guts kind)
While the cord was popping, so was the skin on my palm, and blood squirted out onto the doctor's lab coat. They'd warned me there might be a skin tear due to all the stretching. What I wasn't prepared for was a skin gash. I was just barely holding it together at that point. Everyone was very solicitous and feeling bad about inflicting so much pain (not that it stopped them from doing it).
When it was over one of the doctors who was there just to observe said, "You deserve a lollipop after that," and I said, "I don't need a fucking lollipop. But if you have a morphine drip I'm all over it."
They treated the gash and then all the medical personnel left Bill and me alone for a few minutes. When they closed the door I just burst into sobs, out of pain, trauma and relief that it was over. I couldn't stop shaking.
Well, again they mummy-wrapped, gave me some antiseptic ointment for the gash and sent me home.
The morning after the manipulation.
It took about two weeks for the swelling and bruising to subside, and about three weeks for the gash to close up, and during that time it looked like the results were going to be really good.
A month later I went back for the 30-day follow-up and to get the third injection, if I so chose. There were about three minutes when I actually considered it because I could see there was still a cord there and I still couldn't stretch my fingers out completely straight. But when I was in the doctor's office and they asked if I wanted to go ahead with it I just could not go through that again.
So, while what I ended up with is sooooooooo much better than when I started, it's not perfect. But you know what? It'll do. It's really damn good and I'm very happy with the results. And if the condition worsens again over the years it's my hope that by that time the FDA will have released it into the market and I'll get it done under anesthesia.
These pictures were taken in September 2008, two months after the second, and last, injection. Pretty good, huh?
Here are the links to some YouTube videos I did while I was in the process - not of the injection or the manipulation, just the results.
It's now six years after I was involved in the clinical trials. The cord continued to contract my finger during that time.
|As far as I could flatten my hand|
|As straight as my finger would go|
|Day after manipulation|
Anyway, it's over quickly.
|Day after manipulation|
|1 week later|
|1 week later|
|3-1/2 weeks later|
I'm very happy with the results. The recovery is easy and quick, unlike the surgery which is a very long recovery time and rehab.
I was encouraged to use my hand as much as possible after the procedure - it aids in the healing - and I wear this very high tech brace at night to keep my finger straight. Otherwise I use my hand normally.
The end. I hope.
My doctor is Dr. Thomas Weidrich at Northwestern: 312.337.6960