My right hand is more or less frozen into a claw-like position, due to a rare disease. This condition is Complex Regional Pain Syndrome (CRPS), although it still sometimes goes by it old name; Reflex Sympathetic Dystrophy (RSD).
CRPS is primarily a neuro-inflammatory disease, but it has been known to cause a number of other issues including joint stiffness (into a flexed position) leading to rigidity of the affected extremity, osteopenia (reduced bone density), etc.
One of the ideas that my M&M physiotherapist suggested – to try to help me regain some use of my stiffened and almost rigid fingers – is something called a dynamic splint. (For more on this specific type of physical therapy, read M&M physiotherapy.)
This splint would vaguely resemble a hand and wrist brace, but would use elastic bands to exert force to extend each finger. A set of metal coils, or springs, would do the same for the wrist. One elastic per finger, pulling the digit upwards – all fingers at the same time.
The concept is that forcing each finger joint, and my wrist, into an extended (i.e. open) position would counteract the “claw hand” effect of CRPS:
The stages of ischemic contracture and ankylosis of CRPS… are phases where it is no longer the pain that limits movements but an actual muscle contracture from fibrosis or ankylosed joints of claw hand which makes movements impossible.”(1)
Unfortunately my physiotherapist couldn’t write a prescription for this splint; in my area this type of orthopaedic equipment must be prescribed by a physician. It took a while, but I was finally able to have a spectacularly unhelpful orthopaedic surgeon write a prescription for this on August 11th.
[I’ll write about the multiple issues that I’ve encountered with this particular specialist soon. Although my field is bioethics, protecting patients’ rights, I found myself unable to protect my own. I’m not ready to write about that part of my patient journey yet. More of a series of detours, really. I promise that I will write about it; it’s such an important aspect of my struggle with this disease!]
On August 22nd I had an appointment with a technician specializing in orthotic and prosthetic devices, at a local orthopaedic supply shop. He noted details of my CRPS joint issues, and took a number of measurements; finger lengths, distance between the joints on each finger, hand width at several specific places, etc. All in all, I was there for well almost an hour.
He explained that what my physiotherapist had suggested was a first for him, and possibly in the history of their orthotics and prosthetics shop – which opened in 1952! He told me that they’d made dynamic splints for one, or sometimes two, fingers; but no one on their entire team could recall ever having made – or even heard of – this type of splint being made for all four fingers.
He had to pull out a few catalogues of parts from different manufacturers, to find a way to build it. Finally, he called one of these companies, to confirm that they could build my dynamic splint. It would have to be custom-made at an orthotics manufacturer, as it wasn’t something that could be put together locally.
Unfortunately this meant I’d have to wait for this new orthotic device, but I’d gotten used to waiting – given that even the diagnosis of my disease had been missed for almost three months!
I got a call last week that my new dynamic splint was ready. I was ready to go pick it up right away, but they told me that I’d have to make an appointment for a fitting. The technician I’d met with would have to show me how to use it, to ensure that I didn’t causing harm to my hand and wrist.
That appointment was yesterday, and it must have taken 30 minutes for me to be able to get this splint onto my hand – it looks like some kind of movie character’s claw!
And Oh My Gosh it hurts when I wear it! This is going to be interesting, because the technician suggested that I wear the dynamic splint – to start – for 20 minutes two to four times a day for the first week. After that I should increase to at least 30 minutes, at least twice a day. To goal to aim for would be 4 times each day, for a total of 2 hours.
Then after a month, I should wear it for 30 minutes 10-12 times/day, for a total of 5 or 6 hours a day. That said, I can’t wear it when I’m sleeping or driving, or when I’m using the computer at work.
That means I’d have to wear this dynamic splint pretty much all the time when I’m not at work! So maybe I’ll try wearing it at work, when I’m in meetings in which I don’t have to take notes…
I had an appointment with my physiotherapist right after I was fitted with my dynamic splint yesterday, and everyone at the clinic told me it looked like part of a superhero’s outfit.
I put it on for a few minutes at lunch time today, at the office, and my colleagues all said that it looked like something out of a movie. I decided to have some fun with my new look, so took votes on which character would best suit my claw ‘-)
These are the possibilities that the folks at my office came up with:
• Edward Scissorhands
• Freddy Krueger
• Terminator
• Wolverine
And the winner, by number of votes, was… Wolverine! I’m a Hugh Jackman fan, and love the Wolverine character, so was happy about the results! And also about the fact that Hugh Jackman was back in that role in X-Men: Apocalypse!
So now when I wear this splint – and it REALLY hurts to wear it – I’ll tell myself that I’m channeling my inner Wolverine ‘-)
I sure hope that mantra helps with the pain that this dynamic splint causes!!! And – more importantly – I hope it helps get my hand back to a more functional state; that it’ll help me regain use of my right hand.
As always, thanks for reading! Feel free to leave a comment or send me a message over on Twitter.
References:
(1) Lakshmi Champak Vas, Renuka Pai, and Manorama Pattnaik. Musculoskeletal Ultrasonography in CRPS: Assessment of Muscles Before and After Motor Function Recovery with Dry Needling as the Sole Treatment. Pain Physician 2016; 19:E163-E179. Online. Accessed 04 Oct 2016. https://pdfs.semanticscholar.org/825c/23de90f88dd188575c1d15ac420ca5397b14.pdf
(2) Olivia B. Waxman.Hugh Jackman Just Teased an X-Men: Apocalypse Wolverine Cameo. Time. 25 Apr 2016. Online. Accessed 04 Oct 2016.
https://time.com/4306330/hugh-jackman-wolverine-apocalypse-xmen-trailer/