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.
Thursday, November 29, 2018
Sunday, November 25, 2018
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.
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.
Thursday, November 22, 2018
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 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.
Tuesday, November 20, 2018
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.
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.
Sunday, November 18, 2018
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.
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.
Thursday, November 15, 2018
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.
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.
Friday, November 9, 2018
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.
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.
Friday, November 2, 2018
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.
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.
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