About Focused Ultrasound Treatment (FUS) against neuropathic pain – part III: The first months after the intervention.
Half a year has now passed since my stay in Switzerland. Let’s repeat: To reduce my neuropathic pain, parts of my thalamus were lesioned with focused ultrasound in a private hospital in the Swiss town of Solothurn. Focused Ultrasound Treatment (FUS) is the method’s name. This article should clarify if or how much the intervention has helped.
Let’s get going …
First of all: Yes, I’m still alive. And no, I do not suffer from physical or mental side effects, at least not that I know of. If I still have pain? Yes. Logical conclusion: The intervention was a shot in the foot. With this though I disagree resolutely. To fathom the reasons why, let’s start at the beginning.
Hypochondriac – K.I.T.T.
I can still remember the first night in the hotel after the intervention – barely any pain but I couldn’t sleep nevertheless. Between my sleeping attempts I tried to keep myself entertained by watching TV. However Night Rider soon became exhausting – in times of Siri and Alexa the least you need is a smart-ass car. Fortunately a friend of mine was working a night shift and seemingly wasn’t all to busy either, so we chatted a bit to kill some time.
One day and one flight later, after arriving back home, some surreal weeks would begin for me. In spite of persistent headaches I managed to stay optimistic during the first days. As a matter of fact I did have less pain and was convinced that this intervention had changed my life. A little later though this assumed placebo effect slowly decreased. My headaches distressed me more and more over the time and pushed away my optimism. I feared the headaches were a side effect of the intervention. So instead of focusing on the reduced pain in my legs, I centred on my head. What had I brought onto myself? Would I now additionally have chronic headaches? As you can see, I am a self-confessed hypochondriac.
Later it turned out that the extreme muscular tension during surgery was responsible for those headaches. Along came the tension afterwards. During several weeks I was extremely insecure and slipped into a vicious circle.
Headache ⇒ Overthinking ⇒ Tension ⇒ Headache etc.
According to friends, I was unrecognisable during that period. One day though the headaches mercifully disappeared unnoticed.¹
Expectations and Unicorns
Now my hypochondria could lunge at my neuropathic pain. Especially two circumstances made life difficult.
On the one hand there would be hidden expectations. Even though it was always clear to me that lesioning the thalamus would not make my pain disappear completely, a part of me was still hoping for exactly this to happen. As a consequence any sensation of pain was linked to a feeling of disappointment. My expectations collided with reality.
The second problem is more difficult to describe. When something great happens in life, one is mostly aware of the bliss. Euphoria. Cloud nine. Same old, same old. But what happens when a negative sensation decreases or disappears? I myself momentarily experienced this positively. This feeling however does not last all too long. Pretty soon the absence of the negative sensation (pain) becomes a normality that you are not aware of anymore. At bottom this is nothing bad. Just imagine me running around like an euphoric, rainbow coloured unicorn … how dreadful.
I guess we can agree that there is no fault to find with normality (even though ’normal‘ is not among my favourite words). The circumstance however that the pain has not disappeared completely but still is part of my life, brings along a dilemma. While I don’t consciously experience the painless moments as blessing, the painful episodes do trigger insecurity, fears and doubts. This is why already a couple of weeks after the surgery I slipped back into well-known patterns: The almost pathological search for possible causes of pain (e.g. weather) or the habit of good-night-joints, to be able to sleep.
It’s a steady up and down, a physiological and mental rollercoaster. Since a couple of weeks I’m struggling with swollen feet. Water retentions are no rarity among wheelchair users, for me though this is unfamiliar. Cause: Not the slightest idea. What I do think however is that there is a link between the increased pain and those dumpling feet. Or do I just make myself believe this to have an explanation? We probably can count this to ‚pathological search for possible causes‘.
At this point however I want to emphasise that the bad days have gotten a different quality since the intervention. Of course it still drains energy and there are more than enough sleepless nights due to pain. Today though the pain doesn’t make me reach the limits of endurability. Now even in more painful episodes I can still comply with everyday life. I simply have to learn how to accept and cope with the fact that pain will stay a part of my life. No easy task.
Superheroes and Party-Tigers
You don’t necessarily have to read between the lines to notice that still today, half a year afterwards, I’m still trying to process the intervention and everything that goes with it. In this context expectation management is an important catchword. Not only concerning the pain itself.
A part of me was convinced that with the reduced pain after surgery, my life would change fundamentally. I would in a way rise like a Phoenix from the ashes and finally participate freely in social life. Instead of hiding out in the night like princess Fiona² due to fear of pain, I would spend the evenings partying and at times even overplay my hand – hangover included. Also I would not miss one single kiteboarding day because of pain anymore and finally advance a little further. Yet again reality collided with my expectations. I have not become neither a superhero nor a party tiger. I’ve stayed myself – together with my fears and eccentricities. Did I hide behind the pain all those years? I can’t exclude this possibility.
As right now I cannot rely a 100% on myself or my emotions, good friends and family have become important pillars for me. In my insecurity I constantly bombard them with the same questions. „Do you think my pain has decreased?“ or „Can you you see a difference between today and the times before the intervention?“ etc. etc. The interviewees then usually answer to me patiently. Result of those highly scientific surveys: On the face of it there actually is a significant before-and-after difference detectable. People from my close environment portray regularly that today I cringe in pain way less then I used to before.
What I think about this? I believe them. More important: It feels good. On bad days when I start to doubt, those statements build me up. On good days I feel confirmed within my optimism.
So even though my expectation have not fulfilled a 100%, I don’t regret a second having gone trough with this intervention. Who knows, one or the other improvement might still creep in. After all my physicians did explain that measurable changes can happen up to a year after the surgery. Oh well … we’ll just have to wait and see what future brings.
¹ A great example of how one stops to consciously perceive the removal of negative effects after some time.
² see animated documentation ‚Shrek‘ (2001)
Sonimodul – Focused Ultrasound Surgery Against Functional Brain Disorders: sonimodul.ch