Decrease In Anxiety?

For the most part, on this blog I have been talking about my problems with depression, which have been pretty severe, as I have described.  The main reason that I did Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) was to treat my depression.  However, associated with my depression has been some fairly severe anxiety as well.  I have difficulty leaving the house or doing things on my own because of this anxiety, so, like the depression, it is pretty debilitating as well.  My psychiatrist and therapist believe that my depression is the primary condition, with the anxiety being secondary.  Hence, the anxiety is only there because of the depression and if the depression went away, so would the anxiety.  It is quite common for people with depression to also have anxiety and vice versa.

Well, I had an appointment with my psychiatrist today and he made an observation that was very interesting and may be relevant to the results of my MRgFUS surgery.  He observed that I seemed less anxious than normal and just more at ease with myself during the appointment.  I have been seeing this psychiatrist for many years, so his observation that I seem less anxious is worth noting.

That, of course, is a very subjective observation and not much to go on, so he gave me a Beck Anxiety Inventory (BAI) test.  I received a score of 21.  Now, I have done a bit of research today, and there seem to be several different rating scales for the BAI.  However, he said that my score was on the high end of low anxiety, which is not inconsistent with the rating scales that I have seen.  Of course, we don't have a score for the BAI that was performed before my surgery, so this score alone is not particularly useful either.  However, my psychiatrist said that he would never before have considered me to be in the range that I received.  Thus, there is evidence that my anxiety has decreased since my surgery.

That is all very interesting, however I haven't noticed any real change in my depression or anxiety myself since the surgery.  To me, I still feel just as anxious as I did before the surgery.  I still worry a lot and I still have trouble doing things.  Thus, I wouldn't take this as strong evidence that something has changed.  However, it is something for me to keep in mind over the next little while as I await more concrete results.

Christmas With Severe Depression

As I wrote in my last blog post, this past week I had my one month follow-up appointment for the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) I had for my Treatment Resistant Depression.  One of the things that we did at this follow-up appointment was to redo the psychiatric scales that we also did before I had the surgery.  This is to determine whether I am starting to improve and my depression is decreasing, or if I am holding steady.  As I have mentioned before, they don't expect any changes until three months to a year after the surgery, so to see anything this soon would be remarkable.

As I wrote back when I originally did the psychiatric scales, all of the tests that I did showed that I was suffering from severe depression.  There were three tests that I did that measure the level of depression with which I am suffering.  The first one was the Hamilton Rating Scale for Depression (HAM-D).  Originally, I received a score of 25 on this test.  Now my score is 24.  Scores of greater than or equal to 23 indicate a very severe depression.  Thus, I have scored a slight improvement according to this test.  The second test that I did was the Montgomery–Åsberg Depression Rating Scale (MADRS).  Originally, I received a score of 36 on this test.  Now my score is 38.  Scores of greater than 34 indicate severe depression.  So, I am getting slightly worse according to this test.  Finally I did the Beck Depression Inventory (BDI).  Originally, I received a score of 36 on this test.  However, now my score is 37.  Scores of greater than or equal to 29 indicate severe depression.  Thus, I also am getting slightly worse according to this test.  Overall, these test scores indicate that I am not improving, but not getting substantially worse, which matches with the way that I have been feeling.  Hence, the surgery has had no effect on me as of yet, I am still suffering from severe depression.

This is very discouraging.  I know that I am not supposed to feel anything this early on in the process, but I was hopeful that I would start to feel a slight shift at least by Christmas.  Christmas is a time of celebration in which we are supposed to get together with and enjoy the company of family and friends.  Celebrating Christmas with severe depression is very difficult.  It magnifies the negative feelings that you are experiencing, at a time when you have to wear a mask to hide those feelings. 

It may just be the Christmas season bringing me down, but I don't feel hopeful about this surgery.  I don't feel like it will help me get better.  I am concerned that I might have made a mistake in having this surgery.  I don't know how I am going to get through the next 11 months if I don't start getting better.  The neurosurgeon and psychiatrist that I met with this week were still very hopeful that I will start to feel something within the next few months, but I can't say that I share their optimism.  If I had started to feel even a slight shift in my mood, then I could be optimistic, but at this point I am concerned that I will never get better, and that's not a good feeling with which to be going into the Christmas season.

1 Month Follow-Up

Today I had my one month follow-up appointment for the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) that I had to help treat my depression.  Since the surgery was performed as part of a clinical trial, these follow-up appointments are more to get information from me on how I am doing rather than to provide me with any new information.  However, I did get some useful information on the surgery and what to expect from here on. 

I haven't noticed any improvement in my depression or anxiety since having the surgery.  That has been discouraging, but, as I have said in the past, they say that it can take three months to a year before I notice any improvement, so I have to be patient.  I mentioned in a previous blog post that I would be viewing online economics courses, since I am interested in economics and to help keep me occupied while I wait for something to happen as a result of the surgery.  I have been doing that now for about two weeks.  I am following an MIT online course in microeconomics.  However, I don't know how much longer I am going to keep up the concentration to do these online courses.  In the short run, I am able to follow each lecture.  My depression isn't affecting my concentration so much that I can't follow a one hour lecture, although I am not doing any of the recommended reading or assignments, because I would have difficulty doing that.  However, in the long run, I am having difficulty keeping up the concentration and motivation to follow a whole course.  I find that it is getting harder and harder to bring myself to watch each lecture.  I don't know how much longer I will be able to follow the course.  At this point I will be happy to finish one course.

The first thing that we did today was to meet with my neurosurgeon, Dr. Nir Lipsman.  He said that the results of the MRI that they performed after my surgery showed that they created a 6 mm lesion on the right side of my brain and a 2 mm lesion on the left side.  When they were performing the surgery they weren't sure that they would be able to create a lesion on the left side, so it was good that they were able to create a 2 mm lesion.  I also mentioned to him that I have been having difficulty with my sleep, as I mentioned in a previous blog post.  He said that this probably isn't as a result of the surgery, but that they would keep an eye on it.  It's good to know that it isn't a result of the surgery, as then it may be permanent, but it doesn't help me deal with the problem right now.  Luckily, over the last week my sleep problems have stopped getting worse, so hopefully they will start getting better soon.

After meeting with Dr. Lipsman, I met with the research manager who did some psychiatric scales with me.  As I mentioned in a previous blog post, they did psychiatric scales on me before having the surgery and they showed that I was severely depressed.  Now at every follow-up appointment they will redo those scales to see if there is any improvement in my condition.

My final meeting of the day was with the study psychiatrist, Dr. Anthony Levitt.  He wanted to know how my mood has been doing since the operation.  He said that sometimes people will notice in the week or two following the surgery that their mood actually gets worse.  This is because they have made changes to the brain and it has an initial negative impact.  I didn't notice any worsening of my mood.  That doesn't indicate one way or the other the potential effectiveness of the surgery.  He also said that they have noticed that even if the surgery itself is not effective on its own, it can still help other treatments to be more effective.  He gave the example of one lady who had MRgFUS for depression and didn't notice any difference, but then when they gave her a medication that they had tried before and hadn't worked, it now worked and she is doing well.  That was encouraging that the surgery may have positive benefits even if it is not successful on its own.

My next follow-up appointment will be in two months, at the three month mark.  It will include all of the same meetings that I had today, plus they will perform an MRI to see how the lesions are doing.  Apparently there can be some swelling of the lesions, so sometimes after a few months they shrink down to a smaller size.  It will be interesting to see how things are going after three months.

Possible Surgery Side Effect?

I was lucky when I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) to try and treat my depression that I did not have any serious side effects.  Throughout my past 9 years of living with this disease, I have been very prone to having side effects in many of the treatments that I have tried.  Most medications that I tried gave me intolerable side effects of one type or another.  When I had Electro-Convulsive Therapy (ECT, or electro-shock treatments), I had very rare and serious side effects that left me in an acute confusional state for three days.  Thus, there was a decent chance that I would end up with a side effect from MRgFUS.

The neurosurgeon and study psychiatrists were very good at explaining all the likely side effects that I might possibly encounter.  One of the more likely side effects was the possibility of having headaches that could last for several weeks.  This wasn't the result of the lesions that MRgFUS creates in your brain, but a consequence of being bolted extremely tightly into a frame that holds your head in the focused ultrasound machine inside the MRI.  The bolts (or pins) can cause damage to the muscles in your head and thereby cause headaches for quite some time.  I was fortunate that I only had a headache immediately following the surgery.  I was give a couple of extra strength acetaminophen and the headache went away, never to return.

Other possible side effects that they warned me about, and are doing tests to see if I have, are problems with my short-term memory and verbal memory.  Now, I haven't done any post-surgery testing of my memory yet (that will come three months after the surgery, I believe), but I haven't noticed any problems remembering things or had any difficulty remembering words or what I wanted to say.  It seems very likely that I am not having any side effects related to memory.  This is a good thing because memory side effects would be a permanent effect of the lesions created in my brain.

There is something that has been happening though that may be a side effect of the surgery.  Shortly after the surgery I started to have more difficulty sleeping.  Now, I have not been a good sleeper for a number of years, and this is on account of my depression.  In addition to waking up to go to the washroom, I usually briefly wake up once or twice a night to glance at the clock and fall back asleep.  I also have been a light sleeper, waking up in the morning feeling no better than when I went to bed.  However, since the surgery, this has gotten worse.  I am now waking up several times during the night and am having an even lighter sleep.  This has been getting progressively worse over the three weeks since the surgery.

Just because these additional sleep problems started after the surgery and have been getting worse since then, that doesn't mean that they are caused by the surgery.  Correlation does not imply causation.  However, there is at least the possibility that it is caused by the surgery and I have let the research manager of the study know about my sleep problems, so that she can make a note of it.  I have my one month follow-up appointment with the neurosurgeon and study psychiatrist next week and I will certainly be discussing this with them.  Perhaps there is something that they can prescribe to help me get a better night's sleep.  I am hoping that this is not caused by the surgery, as it would likely be a permanent effect of the lesions in my brain, although one that can probably be dealt with through medication, unlike potential memory problems.

Overall though, considering the side effects that were possible with this surgery, I am happy that I have not had to deal with some of the more difficult ones.

What Do I Do Now?

It's been over two weeks since I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for Treatment Resistant Depression.  My hair is growing back and I have settled into a similar routine as I had before the surgery.  I don't do very much since the lethargy, lack of motivation and fatigue make it difficult to take on any but the most simple of tasks.

However, I am sitting around waiting for something to change.  Every day I compare myself to the day before and try to notice anything that might indicate that the surgery is having an effect on me.  Thus far, I haven't noticed any change, but that is to be expected.  As I have mentioned in previous blog posts, it can take anywhere from three months to a year to see a change from this surgery.  That's a lot of waiting.

My psychiatrist, my therapist and my wife have all said that I shouldn't spend my time just waiting for something to happen.  Doing so will only deepen my depression and make it more difficult if/when any change does occur.  They have said that I should do something to occupy myself and take my mind off of the waiting.  That is probably good advice, but deciding what I should do is the problem.  If I was able to do something that would help with my depression, I would have done that ages ago.  Everything appears to be problematic.

My psychiatrist and wife suggested exercising and/or going for a walk.  Unfortunately, I have tried both of these and they haven't helped me.  Whenever I have tried exercising to deal with my depression, I end up no further ahead and just miserable from the whole experience because I hate exercising.  I also tried going for walks twice a day every day for two years and that didn't help my frame of mind at all.  Thus, I am hesitant to try and fight through the lethargy, lack of motivation and fatigue to do something that I have already experienced did not help me.

My psychiatrist also suggested that I could get back into writing code.  However, I was never really a developer and don't really have much experience writing code.  In addition, the mental energy that is required to do something like that is more than I have available to me right now.

My therapist suggested that I find something that I have an interest in and try to learn as much as possible about that topic.  Over the past number of years I have become very interested in economics and have very strong opinions on the topic, but I have no formal training in economics beyond a first year course in microeconomics that I took as an undergrad.  That is maybe an area that I could look into.  Reading books on economics will be difficult for me as reading has become a challenge as my depression has worsened.  I just don't have the mental energy any more to read anything of any depth.  However, there are free online courses in economics available.  MIT has quite a number of free online economics courses available.  They include suggested readings, exams and assignments.  I don't think that I can handle the readings and assignments, but I certainly could get something out of watching the lectures.  Also, there is a list of free online economics courses available.  Most of these are simply videos of lectures, and I think that I could handle that.

Thus, I think that I am going to start watching economics lectures and see what I can learn from them.  It should hopefully take my mind off of the waiting for something good to happen.  Otherwise, it is going to be a long year of waiting if nothing improves.