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.
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.
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:
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.
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.
I am being considered for two experimental brain surgeries for depression at Toronto's Sunnybrook Hospital. After nine years of suffering from depression and associated anxiety, I can finally see the light at the end of the tunnel and hopefully one of these surgeries will end my suffering.
I am early in the process of being approved for one of these surgeries. I have met with one psychiatrist at Sunnybrook, who said that I am a candidate. That is good. I still have to meet with another psychiatrist and then, if he approves, meet with the neurosurgeon who will perform the surgery. I am hopeful that I will be approved for one of these two surgeries. If I am not approved, then this will be a short blog detailing my utter disappointment. If I am approved, this blog will document my journey over the next few months before receiving the surgery, my recovery and hopeful cure that could, in fact, still take years.
So, what surgeries am I considering? There are two. They are both experimental and I will have to qualify for the current research study in one of them to be approved. I can only have one surgery performed. The first surgery that I am considering is called Deep Brain Stimulation (DBS) and it involves drilling a couple of holes in my skull and inserting electrodes in my brain that will hopefully change my thought patterns and cure my of my depression. This surgery has been used for years to help Parkinson's Disease patients deal with their symptoms, but it is still experimental for depression. About a third of the people who get this surgery go into complete remission, about a third get somewhat better and about a third do not get any results. You can see more information in the following video:
The second surgery that I am considering is called Focused Ultrasound Surgery (FUS). This surgery uses focused ultrasound waves to create a lesion in the brain and hopefully change my thought patterns. You can see more information in the following video:
The FUS surgery is more risky than the DBS surgery. It hasn't been performed as much as they have only performed the surgery on 5 patients in North America and they don't have a lot of data on its effectiveness. It also creates a permanent lesion, or damage, in the brain. For these reasons, I am definitely leaning towards wanting the DBS surgery. It seems less risky and they have much more experience doing the surgery.
How long have I been suffering? It's been about 9 years since I was first diagnosed with depression, but I believe it goes further back than that. About 11 years ago my wife and I switched roles. She went back to work and I stayed home to look after our two sons. One of the reasons that we decided to make this change was that over the previous couple of years I had been experiencing increasing job dissatisfaction. At the time I didn't think anything of it, but looking back on it, I now believe that was the beginnings of my feelings of depression. I have probably been suffering for about 13 years in total.
Why am I considering having brain surgery for my depression? Well, let me explain to you what my life is like with my depression. The first thing I should mention about how depression feels is that almost everyone who has depression has a lack of ability to feel joy. This symptom even has a name. It is called anhedonia. This is a core feeling in depression and I believe most of the other feelings spread from that. I can't feel joy in anything that I do.
Another key feeling that most people with depression have is a feeling of worthlessness. This is a very strong feeling that makes me think that I am not a good person, not a good husband and not a good father.
Springing from these feelings is a sense of guilt. A feeling that I am somehow responsible for everything that I am going through.
Most people think that depression is just a feeling of sadness. However, not everyone that is depressed feels sadness. I do feel very intense sadness though. Some days the sadness is worse than other days, but it is always there. I cry a lot.
One of the most debilitating feelings is the lethargy that I feel. I have trouble doing anything except laying on the couch and napping. I have no energy to do anything.
I used to consider myself to be fairly smart and able to solve most problems that came my way. Over the past number of years though, I have lost that feeling. I can no longer figure out simple things that I used to be able to do with ease. I feel like I have lost my intelligence.
Some people with depression experience a reprieve from it every now and then. They will have good days and bad days, or they won't feel the depression for a few months, or perhaps it will depend upon the season. For me however, it has been constant over the past number of years, with no reprieve at all. Nothing has made it better.
I have also been unlucky enough to feel anxiety in addition to my depression. I get anxious about everything that I do. Some days I feel more anxious than depressed, other days I feel more depressed than anxious. This, combined with the lethargy, makes doing anything very difficult. There is very little that I can do on my own.
Finally, there is an overwhelming sense that I am never going to get better. Especially now that I have tried almost every type of treatment available and am hoping to be approved for neurosurgery, I have lost hope that I can ever get better. I feel like there is something wrong with my brain that is making me feel this way.
What else have I tried? I have tried almost everything. My psychiatrist is running out of things to try. I have tried somewhere around 43 different medications. I have tried everything from natural to pharmaceutical. I have tried everything from turmeric to ketamine. All of them have either not worked or had side effects that made them unsuitable.
I have tried several rounds of Cognitive Behavioural Therapy (CBT) and talk therapy, with limited success.
I have tried Low Energy Neurofeedback System (LENS) and the Fisher-Wallace Stimulator with no success.
I have tried Electro-Convulsive Therapy (ECT) or electroshock treatments at the Centre for Addiction and Mental Health (CAMH). Unfortunately after my third treatment I went into a rare "acute confusional state" and was left totally confused for a few days. We tried it again and this time after six treatments I again became confused and they would not consider me for any further ECT treatments.
I tried an eight-week Mindfulness Based Stress Reduction course, that left me feeling just confused.
I tried exercising every day, but that did nothing for me. I also tried essential oils, which also did nothing.
I had repetitive Transcranial Magnetic Stimulation done. This involved going down to Toronto Western Hospital for 28 straight business days to get magnetic pulses directed at my brain in the hopes of changing my thought patterns. It did nothing.
So, as you can see I have tried many different types of therapies and treatments, with none of them working, and that is why I am considering the more extreme option of trying experimental brain surgery.
I will be updating this blog as my journey continues. Hopefully it will lead me to a cure.
