So if you are a liker on my Facebook page, you’ll have seen me mention recently about issues that I’m having with my thumb. As I’ve waffled on lots of times before, I have EDS which means that my joints very easily sublux and dislocate. Up to now, I’ve mainly only had problems with my back and legs, although there have been other issues with my neck and shoulders, they haven’t caused as many problems as my legs have. Until now.
When I was 13, I dislocated my thumb while ice skating. However, as with most EDS sufferers before diagnosis, it wasn’t picked up for 6 months. I was extremely accident prone (still am) and was always hurting myself, so everyone assumed that I was usually making it up or making too much of something. As the dislocation went unnoticed for so long, I needed surgery for the joint to be wired so that it could stay in place.
I’ve been really careful with that thumb since then as I was warned that it may cause issues later on. And it seems they were right! A few weeks ago, I had a lot of pain in that thumb and I couldn’t move it. I didn’t think that I’d done anything to it to cause the pain, and I couldn’t get the pain to stop or get any movement at all. After a couple of trips to hospital (no help there), I went to see a locum GP who happened to know all about EDS (hooray!). So he sent me to see a thumb specialist (who is also very knowledgable in EDS), and I finally had my appointment this week.
The consultant was fantastic and seemed fascinated at how unstable my joints seemed to be! But after x-rays and careful examination, he’s come to the conclusion that surgery is really the best option. He will need to move tendons to try and secure the joint as it is just dislocating as and when it pleases. I didn’t follow everything that was being said, but I did understand that this will only be a temporary fix. Because of the abnormal collagen in the connective tissues in EDS sufferers, eventually the joint will break free of the tissues holding it in and so the next step will either be fusing the joint together or removing the joint altogether. Neither of these options seem to be ideal, but as the consultant said, it will definitely mean that there will be no more dislocations! If the joint is fused, I should still be able to move the joints above, so will have a small amount of movement. If the joint is removed completely, to stop it floating about, it will be loosely attached to my finger with tendons to keep it secure, but it will be pretty useless. Either way, I’m not going to have a working thumb in a few years time!
I’m beginning to understand with EDS that there really are so many parts of you that can go wrong, and go wrong they do! This has taken me completely by surprise – I need my hands as I use crutches to help me walk and sometimes have to use a wheelchair. When my thumb isn’t playing ball, my whole hand is out of action. Of course it has to be my dominant hand, so the hand that I sew with, write with, do everything with! I’ve been sent to hand therapy to try and strengthen the muscles to prolong the initial surgery. I’ve also got a temporary splint while I wait for a flashy one and it has really made a difference. I think the new one will make life a lot easier as I can now sew again and it’s being protected from me damaging it further.
At the end of the day, I’m going to need to learn how to use my left hand and for that hand to be the dominant one. That can’t be too hard can it!? I’m trying to stay positive in that my body will adapt yet again, and people cope without entire arms so one thumb is really nothing to complain about. Life does however, suck sometimes.