Today marks 5 weeks since my surgery.

(Me pre-op just as they were wheeling me away and at my first therapy appointment)

It’s been a long 5 weeks, full of pain and swelling, and lots of physical therapy and manipulation and stretching and disappointments and hurdles. The surgery went well – I had conscious sedation and a modified peripheral nerve block, which made for so much easier of a recovery. I was groggy for a couple of hours, slept in recovery for a bit, and then went home almost feeling like normal. The surgeon reported that he got full range of motion of my fingers in the OR after making incisions and cutting across the joint capsules, but he warned that it was going to be a constant fight against scar tissue formation and I was instructed to start moving my fingers pretty much instantly, which stressed me out so much in the recovery phase, as I had so much pain but was panicky that I wasn’t doing enough. I saw the physical therapist two days later, and was given a list of exercises to do, which felt so discouraging, but I persevered and little by little, I could move my fingers again.

The first week was painful and swollen; the second week was a dream. My fingers felt like butter. Nearly all of the stiffness was gone and with the range of motion activities, things felt so good, with the exception of swelling and tenderness. And then the scar tissue started to build up, and by the end of that week, I had lost 10+ degrees of motion. It’s been challenging since then.

I’m so much better than I was before the surgery. Before surgery, this was the best passive range of motion that I could do, without heat:

With some heat, I could get nearly a fist, but I could never get my ring finger to touch my palm. I went through my physical therapy records and compared my range of motion, because I like numbers and data:

(MCP=metacarpophalangeal joint (aka the finger to the palm joint), PIP=proximal interphalangeal joint, DIP= distal interphalangeal joint (the tip of the finger)) (Numbers are degrees of flexion – 90 is roughly normal)

The first date is the first time I was able to see physical therapy, nearly 6 weeks after my injury. The last is the best measurements I ever got (I continued to see the therapist for another month, but we didn’t take measurements), which took extensive heat therapy – and I couldn’t maintain it for more than ~ 15 minutes. And after my second injury, when I broke my finger and didn’t know it, my range of motion became even more limited. By the time I saw the surgeon, I could only get 20 degrees of flexion at the small MCP, even worse than when I was first injured.

Here’s the numbers post-op, including today!

And this is what my hand looks like tonight:

I can just barely touch my ring finger to my palm (there’s a small bone growth there that I’m pretty sure is impeding a little – I tried to get my surgeon to take it out at the time of surgery to no avail) and I have difficulty completely extending my ring finger too, but that is a damn fine fist, if I do say so myself. There’s still stiffness, especially in the morning or if I haven’t used it in an hour or so, but I can break through it easier. My hand no longer feels like I’m trying to bend a steel rod like it did before. I still have pain, especially in the bases, and the incisions are starting to tighten up. I saw my surgeon yesterday, who was overall satisfied with how things are going, but suspects that I will always have some stiffness and will probably not get full range of motion, but we won’t know until about the 6 month mark.

My incisions won’t be tiny – they spread a little because of all of the active movements that I had to do (and there were a couple of spots that I noticed that should have had a stitch in between), but they shouldn’t be too noticeable either.

I do several hours of therapy a day – wrapping it in heat, stretching and mobilization, finger bends and taping a fist, massaging the scars. It’s been such a joy working in the ICU while trying to find time to do the exercises. It’s still painful to put on gloves and I haven’t dared let any one shake my hand yet. I have several braces that I wear now; every time I see the therapists, she gives me a new toy. This is my current collection:

When I injured my hand, I realized that I had never consciously taken a picture of my hand before – I’ve lived my entire life embarrassed about my bone condition, trying to minimize it as much as possible, not draw attention to it, and in so many ways, I minimized its impact to my life as well. I remember in college, being so shocked when my doctor wrote in my medical chart that I had severe MHE – severe? Me? It’s only been in this last year, that I’ve been able to acknowledge that I have a disability, one that I compensated for until I no longer could. But trying to ignore it, not documenting how my body worked meant that when I was injured, nobody really believed me of the severity when I tried to explain.

My hand has felt like a stranger’s for the past year – all of those things that I used to be without second thought were gone. Now, now, there’s signs of real recovery and it is such a relief. I can almost hold a pen like I used to do. I can wash my hair with all of my fingers – not as smoothly, no, but the movement is there.

I am not optimistic that things will ever be as they were before, but I think that there’s a good chance for function and I’ll take that.