I got an email from Ann Whitaker in Waco, TX who is the first person I've heard from who's had the enzyme injection for Dupuytren's since it's been on the market. So I wanted to share her story. Lots of good info here. Ann's contact info is at the end if you have any questions.
Just wanted to thank you for participating in the trials for Xiaflex. I've had Dupuytren's since 2003 (or maybe before and didn't notice) and had been waiting for an alternative to surgery.
Like yours, mine isn't painful or debilitating but ugly and annoying. I definitely didn't want surgery because I can't imagine not having the use of my hand for weeks. I have long, curly hair (no way I could wash it and comb it left-handed). Like you, I do a lot of writing, and I just can't imagine how I'd function with only my left hand.
I had the first treatment a month ago and my second two days ago. Since I'm now on Medicare (66 last Feb.), that and Aetna, my supplemental, will pay all but $138 each time.
I really like my hand/ortho doc (40-ish, so I assumed he had steady hands), but I felt I knew almost as much as he did after reading your blog, watching your YouTube videos, and reading the physician's and the patient's manuals.
Too, I was the first person in Waco to take the Xiaflex plunge (not as scary as bungee jumping, which I would not do) and my doctor was a Xiaflex virgin, though he had done the needle aponeurotomy. The drug rep was even in attendance to make sure the vials were mixed properly and nurses kept coming in to watch. If my doc was nervous, he didn't show it. If he had, I might have backed out. Then there was the fact they'd ordered this stuff just for me.
My husband kept calling me a "lab rat." You, however, are the real risk-taker. You were really brave to undergo all that pain twice. And thanks to you (maybe the screaming helped), the technique has been refined.
When I went back for the first manipulation the next afternoon, I was prepared for the worst and hoped the pain would be tolerable. I'd also insisted on going alone. When I asked the drug rep if anyone had screamed when she'd witnessed the manipulation in Austin or Dallas, she looked baffled and assured me they hadn't.
So I had no idea he would deaden my entire hand. That part was not in the literature I read. But he did. In fact, he used two different "caines," a short acting and a long-acting, and my hand was still completely numb at midnight. I thought about you a lot that day. I also thought--when this wears off, my hand is going to hurt like hell. It didn't. The pain from the deadening was the worst part, and it elicited only a contorted face on my part when he stuck a really long needle into my wrist, causing involuntary movements of several of my fingers. And, no, contrary to what my husband thinks, I do not enjoy pain.
My first treatment was for the area under my pinkie, more on the palm than the finger. This week was for my middle finger, mainly puckering and drawing up in the first segment. More swelling the second time, but today it's almost back to normal.
My main fears were that he might rupture a tendon, inject the solution into an artery, or that I'd go into anaphylactic shock. He admitted there was some risk but assured me they had a crash cart nearby. Luckily, none of that happened.
I have to wear a brace at night for four months (ugh) to keep the cord from reforming. That has been a challenge, but I want it to work, so I'm trying to be a good girl. And no mummy wrapping. He sent me home after each injection with a bandaid, telling me to use the hand, just not try to pop the cord myself. No problemo there. Nor did I have any gashes. Yikes. Yours looked painful. I had just a couple of tiny tears.
After four months I'll decide whether to do the thumb area (so far all this has been on my right hand). I didn't even notice the thumb was affected so I may skip that. But the pinkie on my left hand has a nodule that causes my finger to bend, though I can straighten it manually, so that's a maybe.
I didn't intend to write so much, but I did want you do know that your blog and videos were very helpful when I was trying to decide what to do. I've found the entire process fascinating, maybe because, as my doc said yesterday, it's "cutting edge."
I'm sorry the woman who wrote you may have to pay for her treatment. I would think insurance would pay if it's causing her a loss of dexterity or pain. It's still cheaper than surgery, so I'm thinking insurance companies would save money since it's all out-patient.
Anyway, feel free to share any of this with anyone who contacts you. The fact I'm even typing virtually pain-free the next day is amazing to me, and the swelling has almost all subsided.
Thanks again and congrats on your book. It looks like a fun (and well-written) read, and I've ordered a copy.
Your Texas Xiaflex protégé,