I'm Scared

As time passes I move closer to the day that I will find out what the team of doctors will decide on whether I will undergo Deep Brain Stimulation (DBS) or Focused Ultrasound Surgery (FUS).  I will probably learn their decision sometime next week, as they are making their decision this Friday (October 26).  I am excited to hear their decision.  I don't think that I am overstating things to say that it will be life changing for me.  However, the main emotion that I am feeling regarding this decision is fear.  There is a lot to be afraid of.

The first thing that I am afraid of is the possibility of them refusing me permission to receive either surgery.  I do not think that this is likely to happen since the three doctors that I have met with thus far have all said that I am a candidate and that I qualify.  However, it is still a very real possibility.  Remember that both of these surgeries are parts of research studies and I don't know the parameters of those studies.  I could be disqualified for any number of reasons.  I just may not fit into the profile that they want in their study.  I don't know what I am going to do if they refuse me for both of the studies.  This is really my last hope.  I have tried everything else that the many doctors that I have seen have recommended to me.  I can't go on living this way.

If they do approve me for one of the surgeries, then I am afraid of the actual surgery itself.  If I have DBS, then the surgery is a complex one in which they drill holes in my skull and insert electrodes into precise points in my brain.  On the other hand, if I have FUS, my preferred option, then they don't have to open up my brain, but they are still creating lesions, or destroying, a portion of my brain during a lengthy operation inside of an MRI machine.  Any number of things can go wrong when they are making permanent changes to your brain like that.  I am not looking forward to the surgery, but it is something that I must go through if I want to get better.  I had a similar feeling before I received ECT (electroshock treatments).  I was petrified of getting it done, but I knew that I had to do it.  In hindsight it was actually not very difficult at all and certainly nothing compared to the idea of having brain surgery.

Once I have the surgery, regardless of which one I have, there is only about a 60% chance of it working.  Therefore, I am very afraid that I will have the surgery and it won't work.  Of course, I won't know that it didn't work for a year, or more, because that is how long it can take for these surgeries to take effect.  That's a long period of watchful waiting.  If it doesn't work and a year from now I am no better off than I am now, I, again, don't know what I am going to do.  As I said earlier, this is my last hope.  This is one of the reasons that I would prefer not to get DBS as I don't want to be left no better off, but with this device planted in my body for the rest of my life.

It may seem strange, but I am also afraid that the surgery will be successful.  That is the outcome that I want, of course.  However, as I mentioned in a previous blog posting, the process of recovery, rebuilding my life and learning to live with the full range of human emotions again can be a challenge.  I have been depressed for so long that I don't know how to live a normal life.  I am going to have to re-learn many things that most people take for granted.  I don't know what I am going to do with myself and how I will fill my days.  I would like to think that I would get a job at some point, but I don't know what I would get a job doing.  I have been out of the cryptography world for so long now that I don't know if I could successfully get back into it, and even if I could, Ajax isn't a place with a lot of demand for people with that skill set.  I would probably have to re-invent myself with a new career at 50+ years old.  That sounds like a daunting task.

As you can see, I am afraid of every aspect of this possible surgery.  From the possibility of not getting it, to the surgery itself, to the possibility of it not working, to the possibility of it working, it all frightens me.  However, as I said, I have to go ahead with this surgery if I want any hope of getting better.

One thing that does give me hope is that I found an article by the team of South Korean doctors that have also been performing FUS surgery for depression.  It describes their first surgery using this technique and the success that they had.  A 56-year old woman who had been depressed for 19 years had the surgery and was noticeably improved after only one week.  I know this is only one data point, but it is encouraging.  I also learned from the article that I gave some erroneous information in my last blog post.  In that post I said that FUS for depression involves performing an anterior cingulotomy using ultrasound waves to create bilateral lesions in the anterior cingulate.  This article actually states that they perform a bilateral anterior capsulotomy, creating lesions in the anterior limb of the internal capsule. 

The closer that I get to this surgery being real, the more frightened I become.  I hope that my fear doesn't get the best of me and that I am actually able to go ahead with the surgery, if I am approved.