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.

Another Research Study

Most readers of this blog will know that the brain surgery that I had last week was done as part of a research study, "Phase I trial of MR-guided Focused Ultrasound (MRgFUS) bilateral capsulotomy for the treatment of refractory Major Depression."  The fact that it was part of a research study made it both exciting, because I was doing something that could potentially help my depression which very few people had done before, and also scary, because they don't really know what the results of the operation are going to be.  Now that I have completed the operation, there are still more things that I have agreed to do as part of the study.  I will be having check-ups with the team at the 1 month, 3 month, 6 month and 12 month points.  Additionally, as my neurosurgeon said, they will be tracking me forever.  Since I was one of the first people to get this surgery they will want to see how I do for the rest of my life.

Since my experience with this research study was a positive one, I was open to being involved in a second research study when my neurosurgeon asked me.  This second research study is not a clinical trial for a procedure or medication, but is instead an examination of what both doctors and patients think about novel brain devices/procedures, and how doctors and patients make decisions regarding whether to use new brain surgeries.  Basically, they want to find out how patients make decisions about whether to go ahead with brain surgery when that brain surgery is part of a clinical trial.  This second research study that I have been involved with is called "Key Stakeholder Perspectives on the Readiness of Novel Neurointerventions for Neurologic Disorders" and is being conducted by researchers at Sunnybrook Hospital, the University of British Columbia, Neuroethics Canada and the University of Toronto.

Taking part in this research study was pretty simple.  It consisted of a telephone conversation where the researcher asked me various questions about how I decided to undergo MRgFUS and why I chose it instead of doing Deep Brain Stimulation (DBS).  It was an interesting discussion and really made me think about my choice and why I decided to do what I did.

As readers of this blog may recall, originally I was leaning more towards DBS.  I was concerned that MRgFUS was so new, with fewer than a couple dozen surgeries having been performed in the world, that it was the riskier choice.  I felt that they didn't even know if this surgery would work yet and what the potential side-effects of it were.  DBS has been performed for many years and they have hundreds of surgeries performed with much data on how successful it is.

However, I was really persuaded by the fact that while MRgFUS itself is new, they have been creating lesions in this part of the brain to treat depression and OCD for 50 or 60 years.  They do know that this type of surgery can help about 50-60% of patients, which compares favourably to DBS.

Then there is the fact that with DBS they have to actually open up your brain to insert the electrodes into your brain.  It is very invasive and leaves you with a device implanted in your body.  There are many more risks associated with DBS that come with them cutting into your brain.  These risks include the possibility of seizures, the possibility of brain bleeds and the possibility of infection.  MRgFUS, on the other hand, is minimally invasive in that they make permanent changes to your brain without actually cutting into it.

I also really thought about what would happen if the procedure didn't work.  With MRgFUS, if the procedure didn't work, I would likely be the same person that I was before the procedure.  However, with DBS, if it didn't work I was stuck with this device implanted in my body that I would have to deal with.

There were down sides to MRgFUS though that I had to reconcile with.  It does make a permanent change to your brain which means that any side effects are permanent as well.  The potential side effects include possible problems with short term memory.  That's not a good thing to have happen, but is a low probability event.  MRgFUS also doesn't allow for adjustment after the procedure is performed.  They do it once and you get whatever you get from that attempt.  With DBS however, they are able to adjust the settings of the device over time to improve the likelihood of being able to improve the depression.

So, when I had to make my decision, I think the facts that MRgFUS wasn't quite as new as it seemed and that it was minimally invasive swung my decision in its favour.  It's still too early to tell if I made the right decision.  In fact, we will never be able to know if things would have turned out better if I chose DBS instead, but I think that I made the best decision that I could have under the circumstances.

It has now been 10 days since I had the surgery and I can't say that I have noticed any difference.  I still feel just as depressed as I was before the surgery.  Nothing has improved.  That is a little bit disappointing, but it is still early.  They said that I probably wouldn't feel anything for 3 months to a year after the surgery.  It would have been nice though to come out of the operation and to feel something different right away.  Even if it was just some small change to let me know that the operation had an effect and that bigger changes were possibly on the way, would have been encouraging.  However, that hasn't happened so far.  I will keep you updated as we progress over the next year.

Some Recent Press on MRgFUS

Over the past week there has been quite a bit of press covering MRgFUS and related techniques to treat depression.  I will point to a few of the more interesting items in this post.

This article talks about MRgFUS and the potential that it has for really revolutionizing medicine.  Not only can it be used to treat Essential Tremors, Parkinson's Disease and depression, but it can be used to open the blood-brain barrier (BBB) and treat many other conditions from brain cancer to Alzheimer's.

This is a good article on some of the more advanced treatments for depression. It talks about Electro-Convulsive Therapy (ECT, or electro-shock treatments), repetitive Transcranial Magnetic Stimulation (rTMS), Focused Ultrasound Surgery (FUS) and Magnetic Seizure Therapy (MST).  Of those mentioned in the article, I have had ECT, rTMS and now FUS. They won't do MST on me because they have discovered that it doesn't work on patients with both depression and anxiety. The picture in the article is a good one of a patient getting ready for FUS. She has the frame bolted to her head and they are putting the rubber diaphragm over her head.

Finally, here is a video highlighting some of the revolutionary work that they are doing with MRgFUS at Toronto's Sunnybrook Hospital.

Left Not Quite As Good As The Right, But Close

I received a call today from the research manager of the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for depression clinical trial of which I am a part.  It has now been three days since I had the surgery and she just wanted to check in with me to see if I am experiencing any negative side-effects.

I am lucky.  I have not experienced any bad side-effects thus far.  It is not uncommon for people that undergo MRgFUS to experience headaches for many days or weeks following the surgery.  This is not from the lesions that they create in the brain, but from the intense pressure that the skull is placed under by the frame apparatus while the operation is taking place.  I experienced a headache immediately following the surgery, but have not had a headache since.  I am very thankful for this.

The only side effect that I have had is that my eyes are quite swollen and watery.  This is also a common side effect and comes from the holes that are opened through the skin when the frame is attached to the skull.  The holes are right above the eyes and can irritate a muscle that goes by there and around the eyes.  This causes the eyes to get swollen.  This is a very minor side-effect and quite manageable.

The interesting thing that she said, however, is that they received the results from the MRI that was performed the day following the surgery.  In my previous blog post, I described how in the surgery they were able to create a good lesion on the right side of my brain, but had difficulty creating a lesion on the left side.  They had to repeatedly do sonications at maximum intensity to try and create a lesion, and, even then, they weren't sure if they were successful.  Well, she said that the results from the MRI came back and there is a lesion on the left side of my brain as well.  It isn't as big as the lesion on the right side, but it is definitely there.  This is encouraging news.  Following the surgery, the neurosurgeon said that they did not know yet if lesions on both sides of the brain were required or whether the size of them would influence the effectiveness of the surgery.  However, it is certainly good that they were able to at least create a lesion on both sides.  One would think that it would increase the odds of the surgery being successful if they were able to complete the goals for the surgery on both sides of the brain.

After three days, I haven't noticed any change in my mood thus far.  This is to be expected.  They said that it could take anywhere from three months to a year for me to notice anything.  I hope that if I experience anything it happens soon, but don't expect it.  Patience is the name of the game right now.

I Walked A Thousand Miles Just To Slip This Skin

So, yesterday (Monday, November 19) I had my brain surgery.  I had a bilateral anterior capsulotomy by Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) to treat the depression that I have been living with for years.  It was an interesting day and a half.  We had to be at Sunnybrook Hospital for 6:00 am to check in, so that made for an early start to the day.  I was taken in fairly quickly and taken to the pre-op room to get changed into a hospital gown and get an IV put into my hand.  After they got me ready, they let my wife, Laila, come in with me to keep me company until I went in for the surgery.

After a while, the research manager for the clinical trial in which I am taking part came by and brought me to the MRI suite where my surgery took place.  Once we got there, the resident of my neurosurgeon, Dr. Lipsman, continued the preparation.  I had already prepared by shaving my head, but I didn't shave it too close.  They had to shave it down real close and that took a while.  By the time that they were done shaving my head, there was a crowd of people, including the anesthesiologist, Dr. Lipsman, and some people that appeared to just be there to watch.  I guess that seeing that I was only the sixth person in North America to get this surgery, it is still something to see.

After I got my head shaved, they attached a frame to my skull.  The bolts that attached it to me went right through my skin right down to the skull and they tightened them very hard.  My head felt like it was in a vice.  However, the feeling of intense pressure only lasted for about five minutes and then I got used to it.  They did however have to put some freezing in to the spots where the bolts went through the skin.  One application of freezing wasn't enough to control the pain, so they had to put in a second application for all four locations.  While they were doing this, Dr. Lipsman told me that the CT images they took of my head a couple of weeks earlier indicated that my skull was particularly amenable to having MRgFUS done.  Sometimes, depending upon the density of your skull, the ultrasound waves will bounce off and they won't be able to create lesions in your brain.  However, he said that this shouldn't be a problem for me, which was good.

Once the frame was attached to my head they put a rubber diaphragm over my head.  This diaphragm is designed to keep the water that is in the machine that performs the surgery off of my face and body.  The machine is really a helmet that contains one thousand transducers that convert electricity to ultrasound waves.  These transducers are kept in water when they are in use and I could feel the machine filling with water every time that they were doing a sonication.  I don't know if it is to keep them cool, or why they need the water.

I was then placed in the MRI and the frame was secured to the helmet containing the transducers.  I was really bolted in there and definitely could not move my head even if I wanted to.  They put compression socks on my legs to prevent blood clots because I wasn't able to move for four hours.  They also applied leads to my chest to monitor my heart rate and a blood pressure cuff on my arm to monitor my blood pressure.  The anesthesiologist started me on some sedation to keep me calm through the long procedure inside the tight MRI machine.  They also covered my with blankets and a special blanket made up of plastic bubbles filled with warm water to keep me comfortable.  Finally, they gave me a button to press if I needed to stop the procedure at any point in time.

They then started by taking a number of MRI images of my brain to make sure that it still matched up with the images that they took a couple of weeks earlier and to calibrate the machine.  Finally, they started the sonication.  They did the right side first and they were able to increase the temperature inside my brain to the point of creating a lesion without any difficulty.  I don't even recall feeling anything with this particular sonication.  Then they moved to the left side.  Unfortunately, that was a different story.  Sometimes, when performing this operation, the ultrasound waves will heat up the skull and change the characteristics of it in such a way that the ultrasound waves begin to bounce off.  That's what happened to me.  On the left side they couldn't raise the temperature high enough to create a lesion.  They increased the setting to the maximum intensity, but they could not raise the temperature high enough.  In this situation, instead of creating a lesion by increased temperature, they have to try and create one by repetitive heating.  Therefore, they repeatedly did a sonication at maximum intensity for 40 seconds, followed by 10 to 15 minutes of rest to allow the skull to cool down.  The sonications at maximum intensity hurt a lot.  It felt like the worst headache that you can imagine.  It would take my breath away.  It was good that it would only last for 40 seconds, because I don't know if I would have been able to take longer than that.  Apparently they gave me some medication to help with the pain, but it didn't help at all.  They repeated these sonications 6 times.  Even after doing it 6 times, they weren't sure if they were able to create a lesion.  They had to wait for an additional MRI that I did this morning to find out.

When it was all over they took me out of all the paraphernalia that they had me in and took me to the Surgical Short Stay Unit (SSSU) where I was going to spend the night.  When I got there I was able to talk with Dr. Lipsman and he said that they weren't sure if they created a lesion on the left side and that they didn't know if this would affect the likelihood of my operation being successful or not.  They just haven't done enough operations to know the answers at this point.  He did say that he had ordered an additional CT scan of my skull to see if the density of it had changed due to the ultrasound.  I had a headache after the procedure, but they gave me some medication and it went away.  I was glad about that because some people have headaches for weeks following the surgery.  Here is a picture of me after I got to the SSSU.

Shortly after that they came and brought me for the CT scan.  I felt like an invalid because they had to bring me there in my bed.  I had to wait in the hall in my bed for the CT scan and then again when it was over. 

Staying in the SSSU is not the best.  It is an open ward concept room with about 14 people staying there for the night after their surgeries.  There is always something going on all night.  I had a guy a couple of beds down who snored loudly, a guy next to me that had his girlfriend/wife there talking past visiting hours, a guy across from me with a loud CPAP machine all night, etc.  Once I finally got to sleep, the nurse came in and woke me to ask if I had taken my medication.  I manage to take my medication every night by myself without her reminding me, I don't know why she thought I couldn't do it last night.

This morning I finished my stay at the hospital by having another MRI scan.  It is in this scan that they will be able to tell if they were able to create a lesion on the left side of my brain or not, and how big the lesion is.  I didn't get any results.  I will probably get the results when I go for my first follow-up appointment in a month's time.

I can say that the surgery was successful given that it was an experimental surgery and I appear to have survived it without any serious neurological deficiencies.  I don't have an extended headache, I don't seem to have any problems with my short term memory, and I passed a neurological exam this morning.  However, I don't know yet if it will be successful in curing my depression.  I haven't noticed any shift in my mood yet, but that is expected.  They say that it can take anywhere from three months to a year to notice a change in my mood and I am not optimistic given the difficulty that they had in creating the lesion on the left side of my brain.  I guess that I will just have to wait and see.

My Clothes Don't Fit Me No More

Well, tomorrow (Monday, November 19) is the day that I am going to have my surgery.  I am going to have a bilateral anterior capsulotomy by Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) to treat the depression that I have been living with for years.  They won't have to cut me open, although there will be four small openings made in my skin where they bolt the frame that they use to my skull.  They will be making lesions in my brain using high-frequency ultrasound waves that are focused at a particular part of my brain.  The entire surgery will take place inside of an MRI machine.  I will be inside the machine for about four hours as they perform the operation.  The frame that is bolted to my head will fit inside a special helmet that contains one thousand transducers that convert electricity to ultrasound waves.  The neurosurgeon will be in the next room controlling everything via computer.

I have had all of my baseline testing and screening done.  This operation is part of a Phase I clinical trial, so they have to do lots of testing both before and after the operation to see if anything untoward occurs and to measure my progress.  Nothing turned up in the screening tests, so I guess we have a green light to go for the operation tomorrow.

I had to get my wife, Laila, to shave my head today.  They wanted my head shaved and even with it shaved, the neurosurgeon, Dr. Lipsman, will shave it closer before the operation tomorrow.  They want a very close shave with all of the hair removed.  Here is how I look with my head shaved.

I have to be there very early in the morning tomorrow and by this time tomorrow I should be all done.  It would be great if I suddenly got better after having the operation performed, however, that is not to be expected.  They say that it can take three months to a year before I notice any difference.  That is a long time to wait for something to happen.

I am getting very anxious and worried.  This is brain surgery.  Anything could go wrong.  The consent that I signed said that there was the possibility of serious neurological deficits, even death.  They don't expect either to occur, of course, and they haven't seen any negative reactions yet.  However, it is still experimental brain surgery.

I need to do something though.  The years of living with depression have taken a toll on me.  I'm not the same person that I used to be.  Living with this severe depression is incredibly difficult.  I've tried everything else and I don't have many other options left.  This is my last hope.  If this doesn't work, I don't know what I am going to do.

All I can do is hope and pray that everything will work out.

MRgFUS Screening/Baseline Testing Part 2

Today I completed my second day of screening and baseline testing for the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) that I am scheduled to have on Monday (November 19).  The title of the clinical trial in which I am taking part is "Phase I trial of MR-guided Focused Ultrasound (MRgFUS) bilateral capsulotomy for the treatment of refractory Major Depression."  It's getting close now and I am starting to get nervous about having brain surgery.  I wonder how I got to this point that having them ablate a portion of my brain seems like the best path forward.

I received my scores on the psychiatric scales that we did last week.  There were three tests that I did that measure level of depression.  The first one was the Hamilton Rating Scale for Depression (HAM-D).  I received a score of 25 on this test.  Scores of greater than or equal to 23 indicate a very severe depression.  The second test that I did was the Montgomery–Åsberg Depression Rating Scale (MADRS).  I received a score of 36 on this test.  Scores of greater than 34 indicate severe depression.  Finally I did the Beck Depression Inventory (BDI).  I received a score of 36 on this test.  Scores of greater than or equal to 29 indicate severe depression.  Thus, it is clear that I have severe depression and need to do something about it.

Today we started out with a pre-operation appointment.  I started out meeting with a nurse who took my blood pressure, asked me some background history questions and did an ECG.  Then I met with a pharmacist who reviewed all of my medications and made sure that I didn't have to make any medication changes before the surgery.  Finally, I met with an anesthesiologist, who made sure that I was okay to deal with the sedation that they will give me for the surgery.  The instruction that I was given that this process could take anywhere from 2 to 4 hours, however I was done in 30 minutes, which was much appreciated.

Then I did some neuropsychological testing.  That was pretty challenging.  Some of it was easy, like I had to sort different cards into as many different categories as I could in a certain amount of time.  Other parts of it were more difficult, like having to remember a page of shapes that I was shown and reproduce (draw) all of the shapes, and having to remember a list of words that was read out to me.  Finally, I had to play this strange betting game on the computer where I was given four stacks of cards and had to choose cards from different stacks.  I either won or lost money based upon the card that appeared and the stack that it was chosen from.  I was supposed to come up with an optimal strategy, but as far as I could tell, I was winning and losing at random, so I don't think I did very well on that part.

Finally I had a PET scan.   They told me that it would take 90 minutes, but it ended up taking three hours, which I didn't appreciate.  In order to prepare for this scan, I had to eat a low carbohydrate, high protein diet for the 24 hours before and not eat anything for 6 hours before.  I did not like this diet/fasting routine.  When I got there they put in a saline solution IV and I had to wait for two hours.  Then, they injected me with a tracer and I then had to wait another 30 minutes.  Finally, we did the PET scan and that took about 30 minutes and was not unlike a CT scan or MRI scan.

So, now I am just about ready for my surgery.  I just have to shave my head on Sunday and go to the hospital early on Monday morning.  I hope that it all goes well.

MRgFUS Screening/Baseline Testing Part 1

I spent most of the day today at Sunnybrook Hospital undergoing the first of two days of screening and baseline testing for my upcoming Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for depression.  It was an interesting experience and I got to see first hand where I will be having the surgery and where I will be staying for the night afterward.

The day started out with a visit with the neurosurgeon for the study in which I am taking part, Dr. Nir Lipsman.  He reviewed the procedure with me and went over the possible side effects.  I will be having a bilateral anterior capsulotomy, in which they create lesions in the anterior limb of the internal capsule.  This connects the frontal lobes to the emotional centres of the brain, including the amygdala and hippocampus.  It is this area that they believe is overactive in depressed people.  They have to tell you about every possible side effect that they could conceive of for this surgery, so it makes it sound a little frightening.  For example, there is the risk that they could cause a lesion outside of the planned treatment area resulting in a serious neurological deficit or even death.  The doctor was very good and put this all into context.  The chances of anything bad happening are less than if I had chosen to do Deep Brain Stimulation (DBS), which was my other option.

I also got a little bit more information about the frame that they will be bolting to my head to keep it immobile during the surgery and to fit the helmet containing the array of 1,000 tansducers, which convert electrical energy into sound energy and focus the ultrasound waves onto specific parts of the brain.  The frame will actually be bolted on to my skull.  The bolts will go through the skin and go all the way to the skull.  This is done to minimize movement, which could cause them to create a lesion outside of the planned treatment area.  However, I will have four holes in my skin on my head that will take a few months to heal.  Here is a picture of the first patient being treated for depression getting fitted with the frame (and, yes, I will need to shave my head too).

Then I had an MRI so that they can take a look at my brain before doing the operation.  This is an important step as abnormalities in the brain could cause me to be disqualified from receiving this operation.  For example, Dr. Lipsman said that a recent candidate had to be disqualified because it was discovered that he had a blood vessel going right through the area that they needed to create the lesions.

Following that I did some psychiatric scales to measure the level of depression at which I am currently.  Seeing as this is a study, they will be repeating these scales at regular intervals to determine if the surgery is having an effect on my level of depression.

I then had a CT scan to determine my skull density.  This is an important step as the density of the skull can impact the effectiveness of the treatment.  Depending on the density of the skull, the ultrasound waves may bounce off of the skull and make it impossible to create a lesion.  Alternatively, they may only be able to create a lesion on one side of my brain and not the other.  If they cannot perform the surgery for this reason, then there is the option of choosing to do a Gamma Knife Radiation Surgery (GKRS) to create the lesions.  This isn't preferred though because they can't guide it with an MRI machine and it exposes the patient to harmful radiation.

I finished the day off by having some bloodwork done that is required to make sure that I am healthy enough to have the surgery.  Next week I will have another day at the hospital as I meet with the anesthesiologist, have a PET scan performed and do neuropsychological testing.

Two And A Half Weeks

Well, it's just two and a half weeks until I have my Magnetic Resonance-guided Focused Ultrasound Surgery (MrgFUS, or just FUS) for my depression and I would be lying if I said that I wasn't getting a little bit anxious.  As I mentioned in a previous blog post, I am really scared about doing the surgery.  I'm both scared about it not working and scared about what I will do to rebuild my life if it actually does work.  However, one of the things that I am most anxious about is what I will do between the time of the surgery and I find out whether or not it works. 

My surgery is on November 19th and I will be staying overnight at the hospital, coming home on the 20th.  Those should be eventful days.  However, the next day is the 21st and I don't know what I am going to do on that day, or on the 22nd or on any of the following days.  I can imagine myself just sitting there waiting for something to happen.  The doctors say that it might be three months to a year before I notice a change.  That's a long time to wait expectantly for something to get better.  Not only that, but there is the chance that I might develop side effects as well.  These side effects are mostly related to short term memory or verbal memory problems.  Therefore, I will also be constantly second-guessing myself, wondering if I just happened to forget something or if that is a sign of a possible side effect.  Thus, the time following my surgery is going to be very anxiety inducing as I wait for the changes to come (and they might never come) and I am on guard against side effects (which also may never come).

With only two and a half weeks left before the surgery, I should have hope that my years of depression and anxiety might soon be over.  This surgery provides my best chance at a cure after years of medications and therapies that haven't worked.  I should be hopeful.  However, depression is an insidious disease.  It steals all of your hope.  I am left feeling hopeless and that this surgery will be like everything else that I have tried and won't work.  I can't help but feel like there is something intrinsically wrong with me that makes me this way and that there is nothing that I can do to get better.  Thus, I am not very optimistic about my chances of success.  I know that this is counterproductive as going into a new treatment with a positive attitude makes that treatment more likely to succeed.  However, the depression steals all of my hope.  Dante was right when he wrote that inscribed on the gates of hell is the phrase "Abandon all hope, ye who enter here."  When you are left with no hope, you truly are in hell.

As I mentioned earlier, I will need to spend the night in the hospital after my surgery for observation and to have another MRI the next morning.  I was hoping to get a private room, because I am not a very outgoing person and would prefer to be by myself.  However, the research manager for the study that I am taking part in has informed me that everyone who has surgery at Sunnybrook Hospital and is being kept overnight for observation must stay in the Surgical Short Stay Unit.  This is a 10-bed open ward concept unit and there is no option for a private room.  I don't like the idea of this.  There will be very little privacy as I have to spend the night with 9 other people who have just had surgery.  I am not looking forward to this aspect of my surgery, but I guess that I have to deal with it if I want the surgery.

The next thing that I must do for this surgery is attend the first part of my screening/baseline testing next week.  It is at this time that I will have a physical and neurological exam, psychiatric scales testing, a CT scan, an MRI and blood-work.  That should all go well.

I Have A Date

Yesterday, the team of doctors at Toronto's Sunnybrook Hospital that are leading the studies for Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) for depression had a meeting to discuss all of the potential candidates and what to do with them.  It is a meeting that I have been waiting for, as they were deciding which surgery, if any, I am to have.  I was hoping to be approved for FUS as that seems to be the option which provides me with the most hope of getting better combined with the fewer possibilities of complications in the future, whether or not the surgery is a success, even though the changes that it makes to the brain are permanent and irreversible.

I received an email from the research manager of the studies with the news.  I have been given the green light to go ahead with the FUS treatment.  The surgery is currently scheduled for November 19th, which is just a little more than three weeks away.  Things are moving quickly now.  I am very glad about this as it means that I have some hope that my years of suffering may soon be over.  Of course, I have to be realistic.  The surgery may not be successful and even if it is successful, it may take anywhere from 3 months to a full year for me to notice any change.  However, it is the first step.  As I said in my previous blog post, I am very scared by the whole process, but am willing to go through with it because of the benefits that it could potentially bring to me.

Between now and the surgery date I have two days of screening and baseline testing to complete.  Some of this is just formalities that I have to go through as part of preparing for surgery.  However, some of it is testing to see if the surgery has any adverse effect on me.  While I am going into this surgery looking for an improvement in my depression and anxiety symptoms, they are doing it as part of a clinical trial to determine the safety and effectiveness of this procedure.  Therefore, they want to get a baseline as to what is my current level of functioning.  They will then compare this with follow-up testing at regular intervals over the next year.

On my first day of screening and baseline testing I am going to have a neurological and physical exam done by the study neurosurgeon, Dr. Nir Lipsman.  I am then going to have an MRI scan of my brain, some psychiatric scales testing (to see exactly how depressed I am going into the procedure), a CT scan of my brain and some bloodwork.

On the second day of screening and baseline testing I am going to have a full neuropsychological assessment, a visit with the anesthesiologist (since I will be put to sleep for parts of the procedure) and a PET scan of my brain.

On the day of my surgery I believe that I will have to stay in the hospital overnight for observation and then to have an MRI taken the next day.  I'm not looking forward to that as I haven't had to stay in the hospital since I had my tonsils out when I was three years old.

This is all real now!  Absent any unforeseen complications, I will be having the surgery in a few weeks.  I believe that I will be the sixth person in North America to have this surgery for depression and about the 21st person in the world.  I hope that it all goes well.

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.

More on Focused Ultrasound Surgery

Now that I have made the decision that I would prefer to have Focused Ultrasound Surgery (FUS) over Deep Brain Stimulation (DBS), I thought that I would give some more information on FUS and what it is that they do in this surgery.  I still don't know which surgery I will ultimately get approved for, if any.  However, they said that if there isn't a medical reason to prefer one surgery over the other then it would come down to patient preference.  As far as I know, there isn't a medical reason to prefer one surgery over the other, so I am hoping that I will be able to get FUS.

To begin, FUS isn't its full name.  It is more formally known as Magnetic Resonance-Guided Focused Ultrasound or MRgFUS.  That is because the entire surgery takes place inside an MRI machine.  They use the MRI images to guide them where to focus the ultrasound waves into the brain.  It is a painstaking procedure with the surgery lasting 3 to 4 hours or more.

I found the article "The History and Future of Ablative Neurosurgery for Major Depressive Disorder" to be extremely helpful.  It was written, in part, by three of the doctors that I am seeing at Sunnybrook Hospital regarding my surgery.  It discusses the surgeries that have historically been performed on people with depression and recent advances that may improve upon those surgeries.  MRgFUS is one of those advances.  In a MRgFUS surgery for depression they would perform an anterior cingulotomy using the ultrasound waves to create bilateral lesions in the anterior cingulate instead of using surgical tools.  As the article explains, this procedure has been used for decades and they expect a 50-60% success rate.  They don't know what the actual success rate will be though since they have only performed 5 of these MRgFUS surgeries for depression in North America (all at Sunnybrook Hospital) and only 20 in the world (with the rest being performed in South Korea).  They also don't know what the full range of possible side effects would be.  They do know that some people experience a headache, which goes away after a period of time, due to the device that they must bolt your head into.  They are also concerned that there may be some memory issues, for example, problems with short-term memory or verbal memory, although they haven't seen these to date.

One of the problems with proceeding with MRgFUS is that they may not be able to complete the procedure due to the density of the patient's skull.  The skull is made up of a layer of bone, and then a layer of marrow, and then another layer of bone, and finally the brain.  Sometimes the ultrasound waves will bounce off of the second layer of bone and not be able to reach the brain.  They can predict who this will happen to based upon the density of the skull using a CT scan ahead of time.  I was told that about 10% of people have skulls that will not permit MRgFUS.  If I am one of those people, then there is another option.  They can use Gamma Knife Radiation Surgery (GKRS) to perform the anterior cingulotomy using radiation to create the lesions instead of ultrasound waves.  This is not a preferred option since they don't have the image to guide them and it exposes the patient to radiation.  They said that a couple of people who couldn't have MRgFUS had to have this surgery performed and I would also go with GKRS if MRgFUS didn't work for me.

I was reminded recently of one of the reasons that I am considering such drastic measures to cure my depression.  I looked at an old picture from 2007 and I couldn't believe the way that I looked. 

I have not seen myself look so happy in years.  In 2007, my depression was just starting and I wasn't as affected by it as I have been over the past number of years.  That picture reminded me of what I have lost to my depression.  I have lost my happiness and joy of living.  I am a shell of my former self.  I would do anything to get that back.

Hurry Up And Wait, Part 2

I had my appointment with the study neurosurgeon, Dr. Nir Lipsman, today.  It went well.  He first took down my history with depression and all of the things that I have tried to get rid of it.  He said that I definitely fulfill the definition of Treatment Resistant Depression, which is good because every psychiatrist that I talked to has said the same thing.  He then described both Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) and talked about the pros and cons of each, which was good because he made us aware of some things that we didn't already know.

For DBS he talked about the potential complications of the surgery, and there are a lot of them.  These are complications of any brain surgery plus additional complications that arise from implanting a device in the brain.  These complications include the possibility of getting bleeding in the brain, getting an infection, having the device malfunction or experiencing brain damage.  These are all low probability events, but they could happen.  One of the main advantages of DBS is they can adjust the settings of the DBS device to get better results.

For me, the more interesting part was when he was talking about FUS, because that is the surgery that I am definitely leaning towards.  He said that so far there have been about 20 patients that have had FUS for depression.  There have been 5 at Sunnybrook Hospital and the rest have been in South Korea.  That's not a large sample size, but they also have some experience with creating lesions in the brain to treat depression using traditional surgery and electrodes instead of using ultrasound that should be applicable.  He said that it works in about 50-60% of patients and that it usually takes at least 3 months to work, but may take as much as a year.  The main side effects that they are concerned about are memory issues.  They are concerned about permanent short term memory loss or permanent verbal memory loss.  That's the thing about making permanent lesions in the brain, the side effects are also permanent.  They haven't seen any of these side effects yet, but they are possible.  One of the main disadvantages of FUS is that they perform the surgery and then you either get better or you don't.  It's one shot to make permanent changes to your brain.  However, the main advantages are that you don't have to undergo the opening of your brain and they know that creating lesions works.

Here is a video of Dr. Lipsman talking about FUS:




I was hoping that I would get a final word today on whether or not I was accepted into either or both studies.  Unfortunately, that didn't happen.  He said that he meets with his team every 4-5 weeks to discuss the patients that they have seen and what they can do for them.  It is at this meeting where they will decide my ultimate fate.  The research manager said that the next meeting is on October 26 and I can expect to hear from them the following week.  That is about 3 weeks of more waiting.  I wish that I had an answer now.  At least I got a good feeling from him that I am the type of patient that they are looking for and there are no roadblocks.  I was concerned about my hypothyroidism, because I was told that I had to get that under control before I had any surgery.  My most recent blood test put my thyroid level (TSH) at 5.14 mIU/L.  This is still not in the ideal range of less than or equal to 5.0 mIU/L, but it is close enough that they don't seem worried about it.

So, that's where I am.  Another 3 weeks of waiting and hoping that I get approved for FUS, although I would do DBS also if they only offered that to me.

I Am Approved For Both Surgeries, But ...

Well, I had my appointment with the study psychiatrist, Dr. Anthony Levitt today.  It was a very interesting meeting that we had.  He reviewed my history and agreed that some form of neuromodulation was required in my case.  Therefore, he approved me for both Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS).  That is good news.  It means that I can move on to the next step of meeting with the neurosurgeon, Dr. Nir Lipsman.  I already have that scheduled for next Wednesday, October 10.  There is just one small condition that I have to meet before any surgery can be performed.  I recently developed a low thyroid (hypothyroidism) and have been taking medication to control that.  He needs to see a lab report of a blood test where my thyroid is in the right range before I can have the surgery.  I am going for a blood test next week and hopefully my medication is working and my thyroid is no longer an issue.

He also gave me a lot to think about with respect to the decision to do either DBS or FUS.  I had been leaning toward doing DBS since that procedure has been around longer, they know how to perform it and they have data to back it up.  It also has the advantage that they aren't making permanent changes to your brain and can adjust the settings on the device to get the desired result.  FUS on the other hand has only been performed on a small number of patients for depression and they are still studying to see how safe and effective it is.

Dr. Levitt, however, said that while using ultrasound to create a lesion in the brain is a new procedure, the idea of creating a lesion in the brain to treat depression is not new.  They have been doing it for 60 years.  It's just that in the past they would create the lesion by drilling a hole in the skull and inserting an instrument into the brain to create a lesion at the desired location.  So, the theory behind the work is not new, just the method of creating the lesion.  He also said that while with FUS the changes that they make to the brain are permanent, they do it in such a way as they know whether it will cause permanent damage or not.  They use the ultrasound to heat up a volume of brain 1 millimetre cubed to the point that the cells are inactive, but not dead.  They then check on how the patient is doing and if he/she notices any changes.  If everything is okay then they heat it up to a higher temperature to kill the brain cells.  Thus, there is minimal chance of brain damage causing side effects.

Another thing to consider is that I have some Obsessive-Compulsive Disorder (OCD) symptoms.  He said that based upon the prior work with creating lesions in the brain they know that it works for people with OCD.  DBS on the other hand, isn't quite as well studied for OCD.  It should work, but they don't really have the data.

He did say that with FUS patients typically have a headache for about a week.  One patient had headaches for 3 months and another one has had headaches for 4 months and they haven't gone away.  The headaches aren't a result of the lesions being created, but of the device that they must bolt your head into to keep it immobile for the duration of the surgery.

So, now I am less sure about which way to go.  DBS has the inherent risks associated with drilling holes in your head and sticking electrodes in your brain, but has been studied more and they have the data to back it up.  FUS on the other hand doesn't require them to open up my head and can be done safely so there is minimal chance of brain damage side effects, but this particular technique hasn't been used very much.

He's given me a lot to think about.  I'm going to be spending the upcoming Thanksgiving weekend pondering all of this and coming up with more questions to ask the neurosurgeon on Wednesday.

Hurry Up And Wait ...

Yesterday (Friday) I received a message from the research manager of the Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) studies of which I am hoping to be a part, telling me that my scheduled appointment with the psychiatrist, Dr. Anthony Levitt will have to be rescheduled from Monday to Thursday.  This is somewhat annoying.  We make appointments with doctors on the mutually agreed premise that we will both do our best to make it there on time.  I wouldn't cancel my appointment with only one business day's notice unless I absolutely had to.  This is an important appointment at which Dr. Levitt will give a verdict on which surgery, if any, I qualify for.  I can only hope that the doctor rescheduled me for a very good reason, because he did not provide me with much notice.

In the end, this probably isn't a big deal.  My appointment was moved back by three days.  I have been suffering with this depression for at least 9 years now, and if I do get approved for one of these studies, it may be months, or years, before I notice an improvement.  The statistics on DBS show that it can take up to as much as five years before it is effective.  It can be as quick as someone flicking on a switch, but it can also take time to program the device to get just the right settings so that an effect is felt.  On the other hand, FUS is just a big unknown.  They don't really know how long that will take to work, if it will work at all.  So, in the big picture moving this appointment by three days won't really make much of a difference.  It is just that I am feeling so desperate to get a cure that every day seems like an insurmountable obstacle.  I wish that I could have the surgery today!

I am reminded of something that I was told recently.  I have been contacting people that have had DBS surgery for depression to see how the surgery went for them, whether it was successful and what kinds of side effects they had.  For the most part people are pretty positive about the surgery and the effect that it has had on their lives.  Some people have had more of an improvement than others, but that's to be expected.  One woman that I contacted had some pretty sound advice:

I was one of the earliest DBS patients in Toronto and have been living joyfully and depression-free for over a decade. It's important to have realistic expectations. The surgery itself is almost the easy part and only the first step. Recovery, re-building your life, and learning to live with the full spectrum of emotions is a much more difficult process than most people imagine.

I have been really focused on getting the surgery (either DBS or FUS), but like she said, that is almost the easy part and only the first step.  There's going to be a long period of recovery and re-building my life even after I hopefully get better (which itself can take years) before I can become the person that I once was again.

It's kind of like when two people get married, all of the focus is on the wedding day, when in reality, that day doesn't matter too much.  It's how you deal with the following years of marriage that really matter.  Similarly, when young couples have a new baby, the birth of their new child is a cause for great celebration, while it can also be a very difficult and anxious time for the new parents.  Again, though, the birth day is the easy part.  The next 19+ years of parenting are what will make you parents.

So, I shouldn't get too worked up about a three day delay in my appointment.  There's still a long road ahead.

ECT, rTMS, DBS and FUS

As I prepare for the possibility of having either Deep Brain Stimulation (DBS) or Focused Ultrasound Surgery (FUS) over the next few months, I am reminded today that it was three years ago that I had my first attempt at curing my depression through neuromodulation.  It was in mid-September of 2015 that I attempted to have my first course of treatments of Electroconvulsive Therapy (ECT) or electroshock therapy done at the Centre for Addiction and Mental Health (CAMH).  ECT is a very effective treatment for depression, with a success rate of greater than 50%, so I was keen to try it to see if it would cure my depression.  When many people think of ECT, they think of the scene from One Flew Over the Cuckoo's Nest.



The reality of ECT is much different.  It is a relatively simple procedure where you are put to sleep and powerful muscle relaxants are used to prevent most of the physical effects of the convulsion.  When you wake up, it's like your head is in a fog for a little while.  I don't know if that is from the anaesthetic or from the convulsion, but it goes away relatively quickly.  I would recommend ECT to anyone that is having difficulty recovering from depression.

For most people there are no significant side effects, except for some slight memory loss.  However, I was one of the very few people that had significant side effects.  The day after my third treatment I went into an "acute confusional state".  My memory of that time is not very good, but those around me tell me that I was completely confused and did not know what was going on for three days.  The best way that I can describe it is that I was like an old man with dementia for three days.  This rarely happens, but it happened to me.

Despite that bad experience, in March of the following year we attempted to do ECT again as I was still suffering from depression.  This time, instead of doing three treatments a week, we would only do two.  After my sixth treatment I again began to feel confused.  It wasn't as bad as the first time that I tried it, but it was still rather noticeable.  We again stopped the treatments and they won't do ECT on me anymore because of the potential for these rare side effects.

With my depression still not getting better, we decided in the spring of this year to try repetitive Trans-Cranial Magnetic Stimulation (rTMS) at Toronto Western Hospital.  This is a different type of treatment where they use magnetic pulses to induce an electric current in the brain and by repetitively doing this, change your thought patterns.  I tried two different protocols of rTMS.  The first involved placing the magnet over the front part of my head and doing fast repeating magnetic pulses for three minutes.  They did this on both sides of my head.  The magnetic pulses hurt.  They felt like a shock going from the top of my head right down to my teeth.  I did that 13 times with no results.  The second protocol involved placing the magnet on the right side of my head near my temple and doing slower magnetic pulses for about 5 minutes.  Each one of these pulses hurt more than with the first protocol, but because they were done at a slower rate, it seemed more manageable.  I did this protocol 15 times with no results.

ECT and rTMS are the two least invasive forms of neuromodulation and they should be tried first, before trying more invasive forms.  Usually rTMS is tried before ECT, but I did ECT first.  They are tried after psychotherapy and medications fail.  Most people will get some improvement after trying ECT and rTMS.  If ECT and rTMS don't work, then more invasive forms of neuromodulation can be tried.  The more invasive forms are DBS and FUS and that is what I am attempting to try now.

The Path Forward

I spoke with the research manager for both the Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) studies at Sunnybrook Hospital today.  She updated me on what I can expect over the next few months and the timelines for each of the possible surgeries.

My next appointment is on October 1, when I meet with the psychiatrist Dr. Anthony Levitt.  He will decide if I qualify for either or both research studies.  I am a little bit anxious about this appointment because there is a lot riding on it.  Dr. Levitt holds my future in his hands as he decides which of these procedures, if any, I will get.  However, he is a well-known psychiatrist and well-respected, so I will have to trust that he will make a reasonable decision and approve me for at least one of the procedures.

Assuming that I am approved, after that I will have an appointment with the neurosurgeon for both procedures, Dr. Nir Lipsman.  He will decide if I qualify for the surgeries from a neurological perspective.

After meeting with Dr. Lipsman, if I still qualify for both surgeries, I will have to decide which one I want to do.  As I mentioned in an earlier blog post, I am willing to do either surgery, but am definitely leaning towards DBS as the less risky option.

Next comes the surgery.  If I decide to go with FUS we are looking at a potential timeline of sometime in November for the surgery.  Otherwise, if I decide to go with DBS, we are looking at having it done possibly in December or January.  The reason that DBS will take longer is they are still in the approval stages of the study and they don't think that they will be approved before then.  Both of these options seem like a long way off right now, but they aren't really that far away, I guess.  If I wanted to go sooner I could just get the FUS procedure done.  However, I can't just think about that.  Both of these procedures could take months or years for the full results to be felt, so I shouldn't just go for FUS because it will be done a month or two sooner.

I'm still leaning towards DBS, but I will listen to what Dr, Levitt and Dr. Lipsman have to say about the pros and cons of each before making my final decision.

For another report on FUS and interviews with Dr. Levitt and Dr. Lipsman, see the video below:

One Of The Reasons That I Am Considering Something As Drastic As Surgery For My Depression

It was recently my birthday and I got what I thought was a really neat gift from my wife and children. It's a poster from The Mathematics Geneology Project tracing my academic genealogy back as far as can be traced. I received my Ph.D. in Combinatorics and Optimization (a type of mathematics), specializing in cryptography from the University of Waterloo.  So for example, I studied under Scott Vanstone, so he is my academic father. Scott studied under Ron Mullin, so Ron is my academic grandfather.  Ron studied under Bill Tutte, so Bill is my academic great-grandfather, etc. The poster is very interesting. It has some famous names on it like Jacobi, Leibniz, Copernicus, going all the way back to Sharaf al-Dīn al-Ṭūsī in the 1200's. It, of course, has Scott, Ron and Bill on it as well. 

Despite the fact that I really liked this gift and that it is really interesting, I can't help but feel some sadness when looking at the poster though.  It is a reminder of what I once was and once was able to do, and I am no longer that person any more.  After getting my Ph.D. I went to work for a company called Entrust, that made cryptographic software.  Eventually I rose to the position of Chief Cryptographer for the company.  I was never one of the top cryptographers in the world, but I had my place.  I travelled the world attending cryptography conferences, representing Entrust and Canada on international standards bodies and performing various tasks for the company.  All of that is gone now.

Over the past several years I have seen my depression take away much of my intelligence.  I can no longer put the effort into reading and understanding that I once could.  I can no longer solve problems that I once could.  Making decisions is a really difficult chore for me.  I was never the smartest person in the world, but I could hold my own, and a lot of that is gone now.

Depression is very debilitating.  That is reason enough for wanting to get rid of it and to try any means possible to do so.  However, I also feel as though I have lost a part of me.  I want to get that part of me back.  I want to be the person that I used to be.  I want back the intelligence that I once had.  I want to be able to read and understand papers and specifications that I used to.  I want to contribute to society in a meaningful way.

That is one of the reasons that I am considering something as drastic as surgery for my depression.  I have become a different person and I want the old person back.  Nothing that I have tried thus far has been able to make a dent in the depression, but surgery holds out the hope that I could possibly go into remission and perhaps retake part of my life that has been taken away from me.

DBS vs. FUS

In my last blog post I stated my preference for having Deep Brain Stimulation (DBS) done as opposed to Focused Ultrasound Surgery (FUS).  However, I didn't go into too much detail as to why I have that preference.  I thought that I would expand on that decision in this blog post.

First, let me say that the decision might not be mine to make.  Having either of these surgeries done is dependant upon me being approved and qualifying for the respective study that they have ongoing.  I  may only qualify for one study, in which case the decision is made for me, or I may not qualify for either study, which would be really disappointing.

I must also say that I am lucky to be living in the Toronto area because at this time there is a lot of research going on in the city related to neuromodulation and.  If I was in any other city, I would not have the opportunities that I have to receive these experimental surgeries.

So, let's look at the pros and cons of DBS and FUS.

Deep Brain Stimulation (DBS)

Pros:

• Surgical technique has been used for a number of years to help treat patients with Parkinson's disease and for the past several years on patients with depression, so it is a well understood procedure.
• Many patients have had this surgery done for depression and they have data tracking how well these patients have done for years.  About a third go into complete remission, about a third do somewhat better and about a third don't have any improvement.  It's important to remember with these numbers that the people who receive this surgery are the hard cases that have really serious depression that can't be cured by other means.  Thus, these numbers are reasonable.
• If it doesn't work, or if there is a problem, then they can just turn it off and I will be back to the way I was before the surgery.  If worse came to worse, and they had to, they could also remove all of the hardware from my body.

Cons:

• It is an invasive procedure where they drill a couple of holes in your skull, implant electrodes and then place a battery pack under the skin near your collarbone.  That doesn't sound like a pleasant experience.  Also, you are awake for the brain surgery, which is a little dis-concerning.
• My hairline is receding, so you will probably be able to see the scar from the surgery and the bumps from the caps that they place over the holes in your skull near the front of my head.  I may become self-conscious of this.

Focused Ultrasound Surgery (FUS)

Pros:

• It's a scalpel-free surgery where they use an MRI machine to guide focused ultrasound waves at a particular part of the brain.  The procedure is relatively simple and painless with not much recovery time needed.

Cons:

• They are making permanent lesions in your brain.  If things don't work out well, there is no going back and changing something back.
• The procedure has only been done on a handful of patients (I was recently told only 5) in North America and there isn't really any data tracking how well these patients have done over a period of time.

Conclusion

For me the cons of FUS outweigh the pros.  It is just too risky of a procedure.  Even though DBS is more invasive, I prefer the track record of that procedure over FUS.  Thus, given the option I would prefer to have DBS done.  However, like I said, I may not have that choice and if I am only approved for FUS, I would go with that, despite the risk.  I am in a situation where I need to try something.