It has been a while since my last post, so I thought that I would write a short update to let people know how I am doing. At the time, (almost a year ago now) I wrote that I had significant improvement in my depressive symptoms since the voltage on my DBS was increased to 4 V. I am happy to report that I am still doing well. The symptoms of my depression haven't returned at all. I am in remission and my life has completely changed. No longer am I crying all the time or always talking to my wife about how badly I feel. I now have a normal life and I am grateful to the doctors at Sunnybrook hospital for curing me.
Unlike the small improvement that I had in March of 2019 following my MRgFUS surgery, this improvement was substantial and long lasting. There have been no signs of my depression coming back. When I had the previous improvement it lasted only about 6 weeks and then began to disappear. This time I feel that things are better permanently.
In February it was one year since my surgery, and I was able to fulfill all of the obligations that I had as part of the research study in which I was taking part. For a year after the surgery I had to do regular psychiatric scales to see what my mood was like and less often I would have MRI and PET scans along with neuropsychological testing. One interesting thing that they did as part of the research study was to either turn my DBS device on or off for two weeks and do the opposite for two weeks. They didn't tell me if they turned it on or off, they just wanted to see if I would notice any change in my mood with the device turned off, but without me knowing whether it was on or off. I didn't notice any difference in the weeks that it was off from when it was on. I thought that may indicate that the device wasn't really doing anything and that my improvement might be as a result of the placebo effect. However, the doctors assured me that the brain gets trained by the device to act in a certain way and that two weeks wasn't really long enough for symptoms to always return. Many times it can take months for symptoms to return. They just want to do it for two weeks to see what happens.
Since turning my device off for two weeks didn't have an effect on me, it was suggested that I might want to try a setting on my device where it would cycle between on and off states every few seconds. This shouldn't have any effect on my recovery and would save the battery life meaning that I wouldn't have to have an operation to change the battery as soon. In the end, I decided against doing this as I was happy with the progress that I made and didn't want to jeopardize it.
We did make one small change to my settings we increased it again to 4.5 V to ensure that the improvements that happened remained.
Even though things have drastically improved for me, everything is not perfect. I wouldn't say that I am actually happy. I am not hopeless and sad with constant feelings of worthlessness, which is all good. However, I am just in between happiness and sadness with no highs and no lows. Again, this is much better than I was, so I am pleased.
Now, I just live my life as a normal person for the next couple of years until I have to get my battery replaced. One of my doctors suggested to me that when it comes time to replace my battery I may not actually need the DBS anymore because my brain will have been trained enough to not need it. They will have more data on how people do long term without the battery at that time. However, I think that I will still want to get a new battery. The thought of my depression coming back is scary and I want to make sure that doesn't happen.
This is probably the last blog post that I will write. There's not much more to say. I hope that you enjoyed it and that I was able to help people by writing about my experiences. Stay well.
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