I think it is time to address exactly how I feel at the moment. As I write this I am now only 16 days away from the surgeons table and as the title suggests, I do feel nervous and anxious, and I do have doubts. My therapist assures me that these are all perfectly normal feelings. After all, this is brain surgery, not a routine dental filling.
The first worry I have is that I don't understand the mechanism of how this procedure works. With kidney stones, there is a blockage in your kidney. It obstructs the flow of urine, causing pressure build up and pain. Remove the stone, there is no longer a blockage and the pain goes away. I get it. It's logical and makes sense. With DBS I understand exactly what they do. It is after they have implanted the electrodes and switched on the stimulation that I am confused. How does that stop the tremor? After all, the tremor is in my hands and not my head. I simply just can't see how once it is turned on it could possibly stop my tremor. I don't understand and it bothers me. I see the neurologist on Friday, so I will ask him then.
I am also anxious about a six hour long procedure in which I am awake and literally bolted to the table via screws into my skull so that I can't possibly move. When I had my big kidney op four years ago I had a procedure done in radiology where they had to insert a catheter into the femoral artery in my leg which reached up into my kidney. A coil was inserted in a vessel that they believed was responsible for the bleed in my kidney. During the procedure I felt this inexplicable urge to get up. The medical staff wouldn't let me, so I tried anyway, so they pushed me back down and juiced me up with sedatives. It would have to be the closest I had ever come to having a panic attack. So I think that it is only reasonable to be anxious about six hours of complete immobilisation.
My next worry is much more simple. What if it doesn't work? My tremor is a constant reminder that I am not healthy. It is there when I wake up and there when I go to sleep. It is relentless and exhausting. I can't turn my back on it and I can't take a break from it. It is only natural that I would pin a lot of hope on this. I understand that it might not work, and I have to prepare myself for that eventuality, but if it fails I will be gutted. It is not the fact that I have put myself through brain surgery for nothing, but I am at the end of the treatment road, this is my last best hope. If it fails, I am stuck with this tremor for ever and I don't know if I can deal with that and it scares me.
Lastly, there is the thought of living with sticks in my brain. After talking with other patients, I do realise that most people don't even notice them. But I find the thought of having them there creepy. The brain was not supposed to have foreign bodies in it. I feel like I'm turning into Darth Vader, or Garak from Deep Space 9. I have talked with other DBS patients, and they all say they don't even notice them, but even if I can't feel them, I still know they are there. I figure that I will just have to go with it, and if after the surgery it still really bothers me I can have them removed, but I doubt it will come to that.
So here I find myself in uncharted waters. I have never been in this situation before, so I am drawing from my other medical experiences and knowledge, along with the guidance of my therapist to help me through this situation. So I put it to anyone reading this blog to give me some pointers in how I might deal with these concerns of mine. Until next time, stay well:)
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