Let’s just wait and see.

When I was first diagnosed with FND, both my feet faced the right direction. At the time, this didn’t seem like a particularly remarkable fact, just as it wouldn’t seem worthy of a mention for most people. As the disorder progressed for me though, my right foot had a life of its own, and started to face inwards, a situation diagnosed as functional dystonia. To start with this was not too problematic as, with concentration, I could straighten my foot so that I could wear shoes. However, as time passed it became harder to rectify until finally the dystonia became fixed, with my foot at 45 degrees to its normal position.

Whilst this process was happening, I was an inpatient. There were many discussions involving a variety of healthcare professionals that went along the lines of ‘We could do X, Y or Z, but we won’t. We’ll just wait and see what happens’. There wasn’t any explanation, just the statement that a particular treatment wasn’t going to happen. No examination under anaesthetic to determine how fixed my foot had become. No splinting or plaster casting to ensure that my foot didn’t turn any further. No botox injections to see whether that would help return my foot to a normal shape – it would just make my foot useless. (My comment to this was ‘isn’t it already useless? What would I have to lose?’ No reply.) There was the odd occasion where the medics concerned tried to catch me when I was asleep, to see whether they could find out how fixed my foot had become (instead of putting my under anaesthetic), but no understanding of the amount of pain that this caused. I was informed that the pain I was experiencing was akin to phantom limb pain, and that it wasn’t real – there was no actual damage to my foot so why would the pain be real? Instead of this resulting in anything though, the medics concerned decided to wait and see what would happen, and whether it would rectify itself on its own accord.

Why am I mentioning this? I have recently undergone a procedure to straighten my foot, so that I can at least use it to bear weight again, with the possibility that I may, sometime in the future, be able to start walking again. As tendons were released, it was hoped that my foot would return to a normal position again. Did it? No. It had been in such an abnormal position for such a long time that other things were beginning to happen, meaning that it was not a simple tendon release procedure any longer. I am glad that it has now finally happened, and that things went relatively well. I am very grateful to my GP who has supported me through thick and thin, referring me to the consultant who is supporting me, helping me to get back on my feet again (literally!). However, it does make me question once again why nothing was done when my foot started to change shape. Why were all these possible treatments, which I am now finally benefiting from, withheld from me at a time when they would have had a greater impact and would have been much easier to do? It is that question again; why is it OK for this to happen to patients with FND? Would this happen to patients with any other diagnosis?

2 Comments

  1. teresa

    I’m having the same problem with my right foot no one seems to no wot to do I’m now stuck in a wheelchair unable to walk the foot won’t take any weight (I’m under 7stone ,) I have a physiotherapist once a month telling me to put cold on then warm it and to get my husband to hold it in the right position flat on the floor ( yeah right pain was to immense) she now saying I will have to have a boot ..

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    1. Hi Thank you for your comment, my heart goes out to you. I am also stuck in a wheelchair, unable to walk. The last time the physio tried to make me walk (on a foot at 45 degrees to its normal position) I fell over, and they then stopped insisting that I use it. Neurophysio advice was as you said, to concentrate on temperature and feelings, to try and combat the hypersensitivity. This helped the pain a bit, but any attempt to manipulate it was excruciating. I find out tomorrow whether the operation has worked, although there is a possibility that it may be too early yet (I’m having the plasters changed). For me it was a case of it can’t get any worse, so we might as well try and straighten it. There is no research, and all the advice is conflicting so it is hard to know what to do.

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