Focused Ultrasound Treatment: Burning out pain – Decision-making and preparation

About Focused Ultrasound Treatment (FUS) against neuropathic pain:
Decision-making and preparation.

Deutsch: Fokussierte Ultraschalltherapie: Hirnverbrannt I… das Vorspiel

I am nervous. Tomorrow a lengthy process is coming to an end. So right now I’m sitting in the lobby of my hotel in the Swiss city of Solothurn trying to distract myself. Probably not the best idea to write about that particular thing you want to be distracted of. Only one more night left.

I’ll have my thalamus treated with focused ultrasound (FUS)¹. Goal is to reduce my pain. In average one can count on a reduction of 60% – 70%.¹ Permanently. What this would mean to me is hard to describe. Does half the pain equal a doubled quality of life? I don’t really dare to think about it. Because there is a catch: There is no guarantee for success.

All good things come in twos

Two years ago this process started to gain momentum. Already before I had heard of this treatment, even got in touch with the medical team. At the end though I could not get myself to go through with it. Ultimately it was a conversation with an acquaintance, who experienced a mayor pain relief due to that treatment, that made me pick up the phone again. About half a year later the medical clarification. Cognitive and sensory tests, an EEG and a medical consultation were on the agenda.
I was confident to be the perfect patient. 16 years of spinal cord injury with flashing neuropathic pains, having given a shot at all reasonable therapies.

Helpful slap in the face

As a matter of fact the EEG did show increased activity in the part of the brain where neuropathic pains are reflected. The facial expressions of my conversational partners however bewildered me. Something was wrong. In comparison to the control group without neuropathic pain I seemed to be a border case. Even though my pain clearly had a neuropathic component, the question arose if and how much psychogenic factors would also be playing along. It felt like a slap in the face. All these years of pain just an expression of unprocessed traumas?

I could not believe it, self-doubts arose. All this just an imagination? Could I be that weak? Are emotional complaints equivalent to weakness? Nonsense, but in that moment this automatically occurred to me. Luckily this initial turbulence died away pretty quickly. Instead a steadily growing appreciation for my physicians began to crop up. It can’t be easy to affront a patient who puts all his eggs into one basket. But it was necessary. False hopes would be out of place.

The doctors suggested to try psychotherapy for about half a year for starters. It would be essential to find out if and how much my mind was involved with my symptoms of pain. So that in case of mental involvement we could specifically start there. Though neuropathic and psychogenic factors usually go hand in hand, the risks of a treatment with dominant psychogenic factors should not be underestimated. In that case by nature the operation wouldn’t be very successful. But the accompanying mental backlash could even intensify the pain. A boomerang.

This made sense. Also it did not mean that the treatment was off the table. At first though all the options should be sounded out. Another half year and a tattered ego should not be too much of an investment to be able to make such an important decision. Time to surpass myself.

Mental bootcamp

Back home I started to really tackle my issues. One or two therapy sessions a week and  nearly daily meditation. It was worth it. Not that it directly affected my pain – there was only a marginal difference. It was more the way I managed to handle not only my pain but also my life over all. I became more of a friend to myself.
Nevertheless I still wanted to go through with the treatment – in spite of the chances of failure. My point of view: If I did not do it, I’d be asking myself the what-if-question for the rest of my life. So even if the operation failed, at least I would know. Apart from that I’d overcome the setback sooner or later. I was prepared.
Some phone calls and emails later the date was set: 13th of February 2019. (No, no Friday) In previous conversations the physicians and I could luckily dispel the initial doubts. Now also the attending physicians were considerably more optimistic than before, even though they still could not promise anything. At this time however I already knew that. It did not even scare me off any more. I would use the upcoming half year to be as well prepared as I could. Also for failure.

But for now back to my room before dinner – the last meal before the operation and the perfect excuse for a desert. And after? Afterwards I hope to get some sleep. Good night.

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