I haven't posted an update to this blog since I had my DBS surgery almost 4 months ago. There has been some substantial developments in that time, so I thought that I would update everyone about what has happened in that time.
On February 18th I had my DBS device activated. The neurosurgery resident, Dr. Benjamin Davidson, turned it on. The two electrodes going into my brain each have four contacts. The two middle contacts are each in the target area of the brain and the first and fourth contacts are just outside of the target area, one on either side. He activated the second deepest contact on each electrode, which is inside the target area, and set the voltage at 2.5 V. He also gave me a controller that I can use to turn the DBS device on and off if I need to. As you will see, it was good that I had it.
Then on March 10th I met with Dr. Peter Giacobbe, the psychiatrist of the study in which my surgery is a part of, and Dr. Davidson. They decided to increase the voltage in my device from 2.5 V to 3 V, since I had no reaction thus far. I felt nothing immediately, however the next morning my depression was even worse than it had been previously. I couldn't get out of bed and I couldn't stop crying. Since I had my controller, I decided to turn the device off. As soon as I turned it off I could feel my mood begin to lift. I met with Dr. Davidson on March 13 and he turned my device back on but activated the deepest contact, one which was just outside the target area. He said that he activated that contact because it was closer to the grey matter. I was cautious, but I went along with it. He set the voltage at 2.5 V again. I had no reaction.
On April 1st Dr. Davidson increased the voltage to 3 V. Again I had no reaction.
On the morning of April 27th I again met with Dr. Davidson and he increased the voltage from 3 V to 4 V. This time something incredible happened! By the afternoon I was beginning to feel better. This trend continued for the following week and has been continuing for the nearly 5 weeks since. I couldn't believe the difference. I was no longer continually telling my wife, Laila, that I was not doing well. I stopped crying. The black void in which I had been living my life had been lifted. The only residual effects of my depression were a general lack of motivation, some fatigue and some low self confidence. However things were substantially better than what they had been before. I am hesitant to say that I have been cured, because anything can still happen, but things are going very well. Dr. Giacobbe said the best indicator of how I will do long term is how I am doing after 3 months and 6 months, so there is real hope that things will continue to do well. I feel better than the month of reprieve I got from my depression shortly after I had the Magnetic Resonance-guided Focussed Ultrasound Surgery (MRgFUS) a little over a year ago. That makes me hopeful that this is a real change that will stick.
On May 25th I again met with Dr. Giacobbe and Dr. Davidson and they increased the voltage to 4.5 V to see if we could get rid of the lack of motivation, fatigue and lack of self confidence that were still there. Even so, these effects are beginning to dissipate as I have been able to read eight and a half books in the last three weeks. I can't remember the last book I was able to read before that.
As I said, I have been feeling really good, but the true test is how I do on the psychiatric scales that they regularly do on me as part of the study. All of the tests that I did shortly before I had my DBS surgery showed that I was suffering from severe depression. The first test is the Hamilton Rating Scale for Depression (HAM-D). Before my DBS surgery I received a score of 25. Scores of greater than or equal to 23 indicate a very severe depression. On May 27th when I had this test, I received a score of 7, which is a normal result! The second test that is the Montgomery–Åsberg Depression Rating Scale (MADRS). Before I had my DBS surgery I received a score of 44. Scores of greater than 34 indicate severe depression. On May 27th I received a score of 8, which indicates mild depression, so I am doing very well according to this scale. Finally there is the Beck Depression Inventory (BDI). Before my DBS surgery I had a score of 41. Scores of greater than or equal to 29 indicate severe depression. On May 26th I had a score of 11 which indicates mild mood disturbance, so I am also doing very well according to this scale.
Overall, things are going well and I am glad that I had this surgery. I just hope that they continue to improve and that I am able to get my life back. As my psychiatrist tells me, getting your functioning back after having a prolonged depression takes a long time. I may feel better, but it takes some work to rebuild my life and get back to the way that I used to be. Hopefully things will continue to get better.
Friday, May 29, 2020
Friday, February 7, 2020
My DBS Surgery
Well, I had my DBS surgery for my treatment-resistant depression this past Wednesday (February 5) and for the most part things went well. After arriving at the hospital, I had a head frame screwed into my head. This is used as a reference when they are inserting the electrodes into the brain. Here is a picture of me with the frame on.
Once I had the frame in place, they did a CAT scan so that they new where the part of the brain that they wanted to target was in relation to the head frame. After that I was off to the operating room. It was quite the experience. I had three neurosurgeons working on me. There was my neurosurgeon, Dr. Nir Lipsman, his resident Dr. Benjamin Davidson and also a third neurosurgeon, Dr. Clement Hamani.
Before the surgery I was really scared about them drilling into my head and inserting the electrodes. However, the surgery wasn't too bad. They kept me lightly sedated so that I wasn't too anxious and the drilling wasn't nearly as bad as I thought that it would be. To be honest, I can barely even remember it now. The worst part of the surgery was that when they made the initial incision, they had not given me enough freezing, so I could feel them cutting into me. This was quite painful. Otherwise, the surgery went well.
During the surgery, after inserting the electrodes into my brain, they connected the electrodes to a battery and had me tell them if I noticed any differences. Some people notice an improvement in their mood immediately. Unfortunately, I did not notice anything. I asked them if that is something that I should be concerned about, but they said that it wasn't. Not everyone notices an immediate change and it can take months or possibly even years for any improvement to occur.
After the surgery, I was very tender at all of the incision points, on my head and on my chest where they inserted the battery pack. My mouth was also very dry and my throat hurt. The anesthesiologist told me that this might happen because they put me to sleep while they inserted the battery pack and also intubated me. This made sleeping that first night very difficult. No matter which way I lay on the bed, I was in pain and the dry mouth and throat made me very uncomfortable. The nurse gave me some medication for the pain and some ice water for my mouth, but that didn't help. I barely slept that first night.
The day after my surgery, the resident, Dr. Davidson, brought me down for an MRI. As I mentioned in my last blog post, they did a 3 Tesla MRI instead of the usual 1.5 Tesla MRI. When I was getting ready for the MRI, the technician asked me if I had any new metal in my body since my last MRI. I mentioned that I had staples in my head that they used to suture the incision. She said that they had done a 3 Tesla MRI on one other patient who had just had a DBS surgery and he didn't have any problems, so I should be okay. I would have felt better if they had more of a track record, but I went ahead with it anyway.
As with my last MRI I was given a series of tasks to perform while they were doing the MRI scan. They did this twice, once with the DBS device turned on and once with it turned off. I did not know when it was turned on or off. They did this to compare my brain functioning with the device turned on and off. Afterwards the device was turned off and I will not have it turned on again until I go back in two weeks time.
After the MRI, Dr. Davidson said that everything looked good. I did not have any brain bleeds or any strokes. Thus, he was willing to let me go home a day earlier than I was expecting. I was very glad about this as I could hopefully get a better night's sleep. My pain was subsiding and my throat was getting better, so I went home on Thursday instead of Friday.
One of the most annoying things about the recovery from the surgery is that my eyes are all swollen up. This is something that happens because when they screw the head frame into your head it affects the muscles that go down around your eyes. The muscles become irritated and make your eyes swell. This should get better in a few days. I had the same thing happen when I had my MRgFUS surgery.
Well, that pretty much describes my DBS surgery experience. It has been good writing this blog about my two brain surgeries for depression. However, now that I have finished the second surgery, I don't think that I will continue to write the blog anymore. If I do get better, I will post telling about that, but otherwise I think that it has come time to discontinue the blog. Thanks for reading it.
Once I had the frame in place, they did a CAT scan so that they new where the part of the brain that they wanted to target was in relation to the head frame. After that I was off to the operating room. It was quite the experience. I had three neurosurgeons working on me. There was my neurosurgeon, Dr. Nir Lipsman, his resident Dr. Benjamin Davidson and also a third neurosurgeon, Dr. Clement Hamani.
Before the surgery I was really scared about them drilling into my head and inserting the electrodes. However, the surgery wasn't too bad. They kept me lightly sedated so that I wasn't too anxious and the drilling wasn't nearly as bad as I thought that it would be. To be honest, I can barely even remember it now. The worst part of the surgery was that when they made the initial incision, they had not given me enough freezing, so I could feel them cutting into me. This was quite painful. Otherwise, the surgery went well.
During the surgery, after inserting the electrodes into my brain, they connected the electrodes to a battery and had me tell them if I noticed any differences. Some people notice an improvement in their mood immediately. Unfortunately, I did not notice anything. I asked them if that is something that I should be concerned about, but they said that it wasn't. Not everyone notices an immediate change and it can take months or possibly even years for any improvement to occur.
After the surgery, I was very tender at all of the incision points, on my head and on my chest where they inserted the battery pack. My mouth was also very dry and my throat hurt. The anesthesiologist told me that this might happen because they put me to sleep while they inserted the battery pack and also intubated me. This made sleeping that first night very difficult. No matter which way I lay on the bed, I was in pain and the dry mouth and throat made me very uncomfortable. The nurse gave me some medication for the pain and some ice water for my mouth, but that didn't help. I barely slept that first night.
The day after my surgery, the resident, Dr. Davidson, brought me down for an MRI. As I mentioned in my last blog post, they did a 3 Tesla MRI instead of the usual 1.5 Tesla MRI. When I was getting ready for the MRI, the technician asked me if I had any new metal in my body since my last MRI. I mentioned that I had staples in my head that they used to suture the incision. She said that they had done a 3 Tesla MRI on one other patient who had just had a DBS surgery and he didn't have any problems, so I should be okay. I would have felt better if they had more of a track record, but I went ahead with it anyway.
As with my last MRI I was given a series of tasks to perform while they were doing the MRI scan. They did this twice, once with the DBS device turned on and once with it turned off. I did not know when it was turned on or off. They did this to compare my brain functioning with the device turned on and off. Afterwards the device was turned off and I will not have it turned on again until I go back in two weeks time.
After the MRI, Dr. Davidson said that everything looked good. I did not have any brain bleeds or any strokes. Thus, he was willing to let me go home a day earlier than I was expecting. I was very glad about this as I could hopefully get a better night's sleep. My pain was subsiding and my throat was getting better, so I went home on Thursday instead of Friday.
One of the most annoying things about the recovery from the surgery is that my eyes are all swollen up. This is something that happens because when they screw the head frame into your head it affects the muscles that go down around your eyes. The muscles become irritated and make your eyes swell. This should get better in a few days. I had the same thing happen when I had my MRgFUS surgery.
Well, that pretty much describes my DBS surgery experience. It has been good writing this blog about my two brain surgeries for depression. However, now that I have finished the second surgery, I don't think that I will continue to write the blog anymore. If I do get better, I will post telling about that, but otherwise I think that it has come time to discontinue the blog. Thanks for reading it.
Friday, January 24, 2020
Getting Ready For My DBS Surgery
It is now less than two weeks away from my Deep Brain Stimulation (DBS) surgery to deal with my treatment-resistant depression. I had my first pre-surgery appointment today to prepare for it. For the most part, the appointment was uneventful and just covered things that I had already done, but there are some items of interest that I can report on.
The appointment started out with some more psychiatric scales testing to set a baseline before I get the surgery that we can compare against as my mood improves, or not, over the next year. They are the same scales as I did for my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS), so I can also compare how my mood is doing now against the last time I had the scales at my 12 month follow-up. All of the tests that I did while I was undergoing the MRgFUS study showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). At my 12 month follow-up, I received a score of 25 on this test. Today I also received a score of 25, so there was no change with this score. 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). At my 12 month follow-up I received a score of 38. Today I received a score of 44. Scores of greater than 34 indicate severe depression. So, my depression is getting worse according to this test. Finally I did the Beck Depression Inventory (BDI). At my 12 month follow-up my score was 39. Today my score was 41. Scores of greater than or equal to 29 indicate severe depression. Thus, I am also getting slightly worse according to this test. Overall, my scores seem to indicate that my depression is getting slightly worse.
Next I signed the consent forms indicating that I was willing to take part in this study. There was nothing much to report on this as I had already read the consent a few months ago. There is one thing of interest though that I neglected to mention in any of my previous blog posts. After I have had the device implanted for 6 months a blinded section of the trial will occur. The purpose of the trial is to give a better understanding of the possible benefits the DBS is having on my symptoms. The DBS will be turned off for 1 week. Then, I will be randomly assigned to have the DBS turned OFF for 2 weeks and then ON for 2 weeks, or the opposite order. I will be seen each week and they will test my mood to see if having it turned OFF or ON has an effect. I will not know if the device is turned OFF or ON, so I cannot influence the results.
After signing the consent, I had a functional MRI, or fMRI, performed. This is done in an MRI machine whose magnet is rated at 3 Teslas (a unit of measurement for magnets). Usually MRI machines are rated at 1.5 Teslas, so it is twice as strong as a usual machine. One of the reasons that they are doing the fMRI testing on a 3 Tesla MRI machine is that they want to prove that the DBS device is safe to use in 3 Tesla machines. They already know that it is safe to use in 1.5 Tesla machines, but they want to prove the same result for 3 Tesla machines. The tests that they have done show that the DBS device should heat up by no more than 1 degree Celsius in a 3 Tesla machine, but they have to do human trials, so I will be one of the test subjects. Hopefully nothing goes wrong!
While performing the fMRI they also want to get some information about how the brain works in people that haven't had a DBS device implanted versus those that have. Thus, I did some quizzes while in the MRI machine and they could tell how my brain was working while I was doing it. The first quiz involved showing me a series of pictures of beer and asking my how much I was craving alcohol followed by a series of random pictures and asking me the same question. They repeated this many times with pictures of beer and random pictures. The purpose of this was to get an idea of the reward pathways in the brain. They will repeat the test 3 times after I have the surgery. The next quiz involved showing me a face of a person with a particular emotion and then having to pick out the face of someone with a similar emotion from a set of two pictures. They would also show me a shape and then I would have to pick out a similar shape from a set of two pictures. This is just to see how the brain works in people without a DBS device inserted versus those that have. Again this will be repeated 3 times after I have had the surgery.
To close off this blog I'd like to post a video about getting DBS for depression that I have been thinking a lot about lately. The first line of this video is very meaningful to me.
The appointment started out with some more psychiatric scales testing to set a baseline before I get the surgery that we can compare against as my mood improves, or not, over the next year. They are the same scales as I did for my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS), so I can also compare how my mood is doing now against the last time I had the scales at my 12 month follow-up. All of the tests that I did while I was undergoing the MRgFUS study showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). At my 12 month follow-up, I received a score of 25 on this test. Today I also received a score of 25, so there was no change with this score. 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). At my 12 month follow-up I received a score of 38. Today I received a score of 44. Scores of greater than 34 indicate severe depression. So, my depression is getting worse according to this test. Finally I did the Beck Depression Inventory (BDI). At my 12 month follow-up my score was 39. Today my score was 41. Scores of greater than or equal to 29 indicate severe depression. Thus, I am also getting slightly worse according to this test. Overall, my scores seem to indicate that my depression is getting slightly worse.
Next I signed the consent forms indicating that I was willing to take part in this study. There was nothing much to report on this as I had already read the consent a few months ago. There is one thing of interest though that I neglected to mention in any of my previous blog posts. After I have had the device implanted for 6 months a blinded section of the trial will occur. The purpose of the trial is to give a better understanding of the possible benefits the DBS is having on my symptoms. The DBS will be turned off for 1 week. Then, I will be randomly assigned to have the DBS turned OFF for 2 weeks and then ON for 2 weeks, or the opposite order. I will be seen each week and they will test my mood to see if having it turned OFF or ON has an effect. I will not know if the device is turned OFF or ON, so I cannot influence the results.
After signing the consent, I had a functional MRI, or fMRI, performed. This is done in an MRI machine whose magnet is rated at 3 Teslas (a unit of measurement for magnets). Usually MRI machines are rated at 1.5 Teslas, so it is twice as strong as a usual machine. One of the reasons that they are doing the fMRI testing on a 3 Tesla MRI machine is that they want to prove that the DBS device is safe to use in 3 Tesla machines. They already know that it is safe to use in 1.5 Tesla machines, but they want to prove the same result for 3 Tesla machines. The tests that they have done show that the DBS device should heat up by no more than 1 degree Celsius in a 3 Tesla machine, but they have to do human trials, so I will be one of the test subjects. Hopefully nothing goes wrong!
While performing the fMRI they also want to get some information about how the brain works in people that haven't had a DBS device implanted versus those that have. Thus, I did some quizzes while in the MRI machine and they could tell how my brain was working while I was doing it. The first quiz involved showing me a series of pictures of beer and asking my how much I was craving alcohol followed by a series of random pictures and asking me the same question. They repeated this many times with pictures of beer and random pictures. The purpose of this was to get an idea of the reward pathways in the brain. They will repeat the test 3 times after I have the surgery. The next quiz involved showing me a face of a person with a particular emotion and then having to pick out the face of someone with a similar emotion from a set of two pictures. They would also show me a shape and then I would have to pick out a similar shape from a set of two pictures. This is just to see how the brain works in people without a DBS device inserted versus those that have. Again this will be repeated 3 times after I have had the surgery.
To close off this blog I'd like to post a video about getting DBS for depression that I have been thinking a lot about lately. The first line of this video is very meaningful to me.
As you're lying on the table you're wondering how you got to the point where holes drilled in your head sounds like a good idea.This is what I wonder.
Thursday, January 9, 2020
I Have A Date Part 2
As readers of my blog will be aware, I have been suffering from treatment resistant Major Depressive Disorder (MDD) for about a decade now. In November of 2018 I attempted to cure this disease my having Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS). This was a scalpel-free surgery in which they used extremely strong ultrasound waves to create a lesion in part of my brain that they believe is controlling my depression and thereby reduce my depressive thoughts. This was part of a year-long study looking at the effectiveness of MRgFUS. Unfortunately, this surgery did not help me and my depression has continued over the past year.
Thus, as I mentioned in my last two blog posts, I have been considering getting Deep Brain Stimulation (DBS) performed. DBS is a much more invasive procedure which involves drilling two holes in my skull and having electrodes implanted in my brain. The electrodes are connected by wire to a pacemaker-like device which will be placed under my skin just below my right collarbone. For more information on the pros and cons of doing DBS versus doing MRgFUS you can see my previous blog post. Having DBS performed would also be part of a year-long study on the effectiveness of DBS.
This week I had an appointment with the study psychiatrist Dr. Peter Giaccobe and the neurosurgery resident involved in the study Dr. Benjamin Davidson. The purpose of this appointment was to determine if I qualified for the study. The study neurosurgeon, Dr. Nir Lipsman had already given his approval, so I just needed the approval of the psychiatrist to proceed. The appointment went well and Dr. Giaccobe thought that I was a good candidate.
Hence, today I received an email from Dr. Davidson that they would like to perform the operation on February 5 of this year. That is a little less than a month away. Having a date set is both exciting, because I am potentially close to getting better, and also anxiety-inducing, as this is a very invasive and scary surgery to have performed. However, with all of the things that I have tried (CBT therapy, ECT, rTMS, MRgFUS, and over 50 different kinds of medications) I feel that this really is my last hope. I need to try it. I must be patient, however, as seeing positive results from the surgery can take a couple of years or more in some people.
Dr. Davidson also said that the target of the surgery in my case would be the subcallosal cingulate, also known as Brodmann area 25. This is the area that most people who receive DBS for MDD have targeted. There was a chance that they would target the medial forebrain bundle (MFB) as they are also targeting that area as part of their study but they decided not to do that for me. It is a little more reassuring that with me they are targeting the area that they have the most data on and with which they have the most experience.
For more information on DBS you can view the following video, which I have posted in the past. It gives a good introduction.
Over the next month I will be undergoing several tests and scans to make sure that there are no problems, but if nothing comes up, I will be going under the drill on February 5.
Thus, as I mentioned in my last two blog posts, I have been considering getting Deep Brain Stimulation (DBS) performed. DBS is a much more invasive procedure which involves drilling two holes in my skull and having electrodes implanted in my brain. The electrodes are connected by wire to a pacemaker-like device which will be placed under my skin just below my right collarbone. For more information on the pros and cons of doing DBS versus doing MRgFUS you can see my previous blog post. Having DBS performed would also be part of a year-long study on the effectiveness of DBS.
This week I had an appointment with the study psychiatrist Dr. Peter Giaccobe and the neurosurgery resident involved in the study Dr. Benjamin Davidson. The purpose of this appointment was to determine if I qualified for the study. The study neurosurgeon, Dr. Nir Lipsman had already given his approval, so I just needed the approval of the psychiatrist to proceed. The appointment went well and Dr. Giaccobe thought that I was a good candidate.
Hence, today I received an email from Dr. Davidson that they would like to perform the operation on February 5 of this year. That is a little less than a month away. Having a date set is both exciting, because I am potentially close to getting better, and also anxiety-inducing, as this is a very invasive and scary surgery to have performed. However, with all of the things that I have tried (CBT therapy, ECT, rTMS, MRgFUS, and over 50 different kinds of medications) I feel that this really is my last hope. I need to try it. I must be patient, however, as seeing positive results from the surgery can take a couple of years or more in some people.
Dr. Davidson also said that the target of the surgery in my case would be the subcallosal cingulate, also known as Brodmann area 25. This is the area that most people who receive DBS for MDD have targeted. There was a chance that they would target the medial forebrain bundle (MFB) as they are also targeting that area as part of their study but they decided not to do that for me. It is a little more reassuring that with me they are targeting the area that they have the most data on and with which they have the most experience.
For more information on DBS you can view the following video, which I have posted in the past. It gives a good introduction.
Over the next month I will be undergoing several tests and scans to make sure that there are no problems, but if nothing comes up, I will be going under the drill on February 5.
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