It’s six months since I had my ulnar shortened so it seems apt to look back at my recovery from the surgery and the progress I’ve made. Ulnar shortening (known as an osteotomy)is a very rare procedure to be carried out as elective surgery – let alone ulnar shortening when it is relating to the wrist and Ehlers Danlos Syndrome related issues – but hey, why be straightforward when complicated is on offer?
The good news is that the operation seems to have been successful. Although they only shortened the ulnar by a few mm, it’s been enough to stop the bones in my wrist impacting together and it’s significantly reduced the amount of pain and grinding I get in my wrist. The points that would have had me yelping when pressure was applied, no longer elicit this response and hopefully that means the joint is settling nicely – and therefore reducing the risk of even more damage occurring in those joints.
The scar is amazing. My lovely surgeon, Miss Davy, is rather proud of herself for doing such a good job (especially a bit in the middle which is particularly good – so she says!). To operate and leave a scar like this on an Ehlers Danlos patient is proof of her skill, and awareness of the scarring problems that EDS patients have. Even if it spreads a little, it won’t be too prominent and the use of the internal stitching held with the ‘mono-stitch’ (a single stitch that ran the length of the incision) seems to have really done the job.
The plate that is holding the ulnar together is very close to the skin but isn’t causing too many problems – if I lean on the plate on the edge of the table it will hurt, but that is to be expected. The plan is to leave the plate in place – I don’t really want to go under another general anaesthetic to remove it if it’s happy where it is.
The bone is healing well – “callousing” nicely apparently and the improvement can be seen on the series of x-rays they’ve taken over the last 6 months. This x-ray was taken just before it came out of plaster – now the bone has grown over the exposed screws and is looking more solid across the ‘break’. The line you can see is a wire – not a break.
In terms of movement and strength, I’m getting there, slowly. I have the most fantastic hand therapist at UCH (yes that’s you Steph if you’re reading this) and she’s been incredibly patient and understanding as I’ve turned up in various states of improvement – or not. As much as this made my surgeon raise her eyebrows, the pain from the plate and the joint is a really good indicator of how flared up my entire body is with the EDS – so if I’m having a bad back or bad knees day, odds on the wrist will either warn me it’s coming or be hurting too. It’s weird – I’m not sure it’s scientific but it works for me.
Equally, the plate is the most brilliant weather forecast system – if the weather is changing, the bone around the plate will ache – often before the temperature changes or it rains. I’m told this will be the worst winter for it and I won’t notice it next year so I’m making the most of my forecasting powers for now.
Having done my exercises, I’ve now got a full range of movement in some planes and am working on the rest, especially flexion and extension of the wrist. I have had so much work done on this wrist that there is a significant quantity of scar tissue to factor in, and that the bone has been impacting into the joint for so many years that ‘full’ movement has never been achievable anyway.
I’m still tired after my hand therapy appointments – I sometimes find them quite emotional when I can’t get my hand to do what I want it to – but it is coming and it will get better. It’s generally thought that Ehlers Danlos patients take twice as long to recover from surgery than a person without EDS so I’m under no illusion I’m in this for the long haul. However, at 6 months on, I can lift the kettle, lift and drain a saucepan of pasta (most days), do the shopping (although I have to be careful and lift mainly with my left hand), drive, write, type (although I’m still using an upright mouse – it’s fab) and generally get on with life. I can just about play the piano (although I need to get some stamina for that) and I can handle my camera with the long lens on it. That’s good.
My next hand therapy appointment is in a month – hopefully I’ll get a few more degrees of movement back by then and a bit more grip strength. The ulnar shortening was a massive operation for me and so far, all is looking good. That’s not saying that if you’re reading this it’s the perfect to solution to your wrist issues – it’s a procedure rarely carried out – and for many clinical reasons. As with all medical procedures you need to talk to your surgeon about your circumstances – but for me, the outcome is looking promising.
One final picture for the Hand Therapy Team at UCH (they know why!)