This was a reply I posted on the article Where Pain Lives at http://www.aeon.co on the subject of how much pain can be on the mind. Just to add, I don't disagree with these facts at all. Also, I highly recommend you go and visit Aeon in general... It has lots of brilliant, intelligent long-form articles on a huge range of subjects.
Although I understand the point of the article, I think we should be cautious in how such research might affect medical policy. Not because I think it’s false; but rather, that it would concern me if we automatically assume it is most likely psychosomatic. I’m not saying we should waste lots of money either- even if the personal, heartfelt story I’m about to tell would usually be tinged with “give everyone a scan and never say it’s in their head and waste money” type of response. I’m merely saying that, conversely, there will still be people where there is a legitimate cause, and where surgery might help.
Basically, growing up my mother had Trigeminal Neuralgia… An illness I couldn’t claim to visualise, but which was described to me as a nerve pressing on a blood vessel in (or near) the brain. I can vividly remember growing up how she could get incredibly emotional very quickly… Or how she could be extremely cross, then you knew it hit her when she would put her hand to her mouth and wouldn’t say anything, and would go away. It upsets me discussing it with her nowadays- more the description on her side, that she was a zombie because of the sheer amount of painkillers she was on, she wasn’t really living and yet was in constant agony. It became one of those things where she had looked it up on the internet- and one of those extremely rare cases in these days of self-diagnosis where it turned out she actually had the condition.
Her doctor had referred her for a scan, where the result came back they couldn’t see anything. She had forgotten her Dentist had also referred her for a scan- at a different hospital. Rather than cancel, she decided to go along for a second opinion… Where it turned out they had found exactly what my Mum had read about on the internet. It would have been a 6-month wait for the consultation with a surgeon- which she decided to pay for privately for a few hundred pounds, as she really couldn’t cope with the pain for that long- and within the next month had brain surgery. Which, as a teenager at the time, was frightening.
It took a long time to recover- which I won’t elaborate on anymore- but my point is that she had the surgery, even had a complication when there was a pop in her head and fluid started dripping out- and 16 years later continues to be a successful accountant. It upsets me and feels strange to talk about the past of that pain, as it genuinely feels so foreign and unreal that it was my mother’s life. You would never dream she had “brain surgery”, which conjures up certain images. Yet because she had “brain surgery”, every time she renews her driving licence she has a huge form to fill in about the procedure, her surgeon as well as her GP, she has to answer yes or no tick boxes about whether she has ever had a seizure driving a car, fallen unconscious or the like. Again, it seems so bizarre to think if you know her- let alone it feels almost like a different life that never happened. Even when I use the phrase “brain surgery” to other people, I still have largely forgotten in the moment how huge a thing that was and how much the pain was to her at that point in time. Even just a few years later, starting my GCSEs, it felt like none of that had ever happened.
Again, my point isn’t to preach everyone should have a spine or brain scan for any hint of pain anywhere. On the contrary; the idea that one would have such potentially devastating back surgery when there is the chance you could relieve the pain in a non-invasive way should be a no-brainer (pardon the pun) for any sane human being. I think there does need to be some wider education on pain- it’s too easy to go for the painkillers when potentially even something like a headache can be a reaction to intense stress or even not drinking enough fluids… taking pills only masks the symptoms, not the cause. But it shouldn’t be at the expense of a proper evaluation if they are consistent in showing signs of pain… Although I note with back pain what was said about it being notoriously difficult to even tell the difference between a healthy back with apparent issues and a person who can’t walk with the same issues.
On top of that (and which if anything adds to the argument that “pain” can equally be in the brain) is the idea of the “nocebo”… Being too flippant about it being in a person's head, even just if that person gets the impression that is what you’re saying, can also have negative consequences. This flies in the face of evidence-based medicine, yet makes more sense if “pain” has a mental health element. And again, saying there could be a mental health element could also have a negative effect. Which is where I think it all comes back to education, and acknowledging mental health as an equal or large part of the “health” system. I read how people with chronic back pain have differently shaped brains, and it reminds me of neuroplasticity and how it’s equally possible to restructure the brain with training. Which is far preferable to having surgery which might result in you permanently being in a wheelchair.
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