On November 19 it was exactly one year since I had the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my Treatment Resistant Depression. Thus over the last couple of weeks I had a couple of days filled with appointments at Toronto's Sunnybrook Hospital to complete the 12 month follow up and to discuss next steps.
The first day of appointments started off with an MRI scan of my brain so that they could see what has happened to the lesions that the surgery created. This was followed by psychiatric scales testing to determine if there has been any improvement in my depression since the surgery was performed last year. As I wrote back when I originally did the psychiatric scales, all of the tests that I did at the time of my surgery showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). Originally when I had my surgery, I received a score of 25 on this test. This week 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). Originally when I had my surgery, I received a score of 36 on this test. This week I received a score of 38. Scores of greater than 34 indicate severe depression. So, my depression is getting slightly worse according to this test. Finally I did the Beck Depression Inventory (BDI). Originally when I had my surgery, I received a score of 36 on this test. This week, my score was 39 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.
After the psychiatric scales, we did some neuropsychological testing. These tests are meant to determine if I have had any negative effects from the surgery that may be affecting my memory or cognitive abilities. They were mostly simple, yet difficult, tests in which I had to remember words or sort shapes or do other simple tasks that measured my memory and cognitive abilities. I didn't have too much trouble with any of them except for a new one that was added to this follow up appointment. In this test I was given a letter and had to list as many words as possible that start with that letter. It seems easy, but I had a really difficult time with it. I don't know if it is an effect of the surgery or simply because I hadn't had lunch yet.
On my second day of appointments I started off by meeting with a neurpsychologist who asked me some general, open-ended questions about the positive and negative effects that I have experienced since the surgery. It was a pretty quick interview because I haven't noticed any changes, positive or negative, since the surgery.
Next came the most important appointment of the 12 month follow up. I met with the neurosurgeon, Dr. Nir Lipsman to discuss possible next steps. In particular, whether or not I am a candidate for Deep Brain Stimulation (DBS) which involves having a couple of holes drilled into my head and electrodes inserted into my brain. I wrote in a previous blog post that they were looking at doing DBS in the medial forebrain bundle (MFB). The MFB is a part of the brain's reward system and is involved in the integration of reward and pleasure, so it seems like a good place to target. Recently, in Germany, they did a study targeting this area of the brain and 4 out of the 5 participants noticed an improvement after 7 days and they were able to maintain that improvement. After discussing the surgery with Dr. Lipsman however, it seems that they are not only targeting the MFB, but also targeting an area of the brain called the subgenual cingulate cortex, also known as Brodman area 25. This area of the brain has been targeted much more commonly and is the area that is usually targeted when doing DBS. The team of doctors will decide which area to target when they decide if I am approved for surgery. Before approving me for surgery however, Dr. Lipsman wants me to meet with the study psychiatrist Dr. Peter Giaccobe. I have to get his approval before I can proceed with the surgery. So, if I am approved, I might be able to have the surgery sometime in January or February.
Finally, to wrap up the 12 month follow up I had a PET scan done of my brain so that they can see how it is functioning.
Overall, I am very disappointed that the MRgFUS was not successful, but am hopeful that I can have the DBS surgery and that will provide me with some relief.
Thursday, November 28, 2019
Thursday, October 31, 2019
More Information On The DBS Study In Which I May Take Part
As I mentioned in my last blog post, I have not been getting any positive benefits from the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) that I had last November. If this trend continues until I have my 12 month follow-up appointment at the end of November, then I will be considered as a candidate for a Deep Brain Stimulation (DBS) trial that my neurosurgeon is leading. DBS is a much more invasive procedure as it involves the insertion of electrodes in the brain and the placement of a battery pack just below the collarbone. The electrodes stimulate a certain part of the brain and they have gotten some good results for people with treatment resistant depression.
A couple of days ago my 12 month follow-up appointments were scheduled and as part of that I will also have a DBS consultation with my neurosurgeon. Thus, I received a consent form for the study in which I would take part. The study is called "Deep brain stimulation of the medial forebrain bundle for the treatment of treatment resistant depression." The document has some very interesting information about DBS and the study that they are doing. Thus far, they have been able to achieve about a 50% success rate in people for which nothing else worked. They achieved this success rate by primarily targeting an area of the brain called the subgenual cingulate cortex, also known as Brodman area 25. This study will not target that area however. This study will target an area of the brain known as the medial forebrain bundle (MFB). The MFB is a part of the brain's reward system and is involved in the integration of reward and pleasure, so it seems like a good place to target. Recently, in Germany, they did a study targeting this area of the brain and 4 out of the 5 participants noticed an improvement after 7 days and they were able to maintain that improvement. Now, this is a very small sample size, but the results are encouraging. My neurosurgeon is attempting to replicate these results and determine if this is a good area of the brain to target.
So, if I am accepted into this research study I would receive DBS, but in a different area of the brain than most people that have had DBS for depression have had. It makes it a little bit more scary, because not only do they have to drill into my head to insert the electrodes into my brain, but they are doing it into an area that they have not done much before. Like I said, the initial results are encouraging, but this is certainly a new procedure that is being done. I am quite scared about it all, but I feel like I need to continue to do whatever it takes to get better. The life that I am currently leading is not a good one.
As an example of how my depression negatively effects my life, just over a month ago my father passed away. He had been sick for a while, but we thought that he would get better and his death was quite unexpected. I was certainly sad about his passing, but I have felt over the past month that my depression has been overshadowing my grief for the loss of my father. I feel that I have not been able to properly grieve because I constantly feel the depression instead. There are times that I feel the grief break through, but primarily I just feel depression. This is just my experience. Other people going through grief while experiencing depression might have different experiences.
So, for now I am going to continue with my plan to try and have the DBS surgery. It is a scary surgery and I would be going into uncharted territory, but I cannot continue like I am.
A couple of days ago my 12 month follow-up appointments were scheduled and as part of that I will also have a DBS consultation with my neurosurgeon. Thus, I received a consent form for the study in which I would take part. The study is called "Deep brain stimulation of the medial forebrain bundle for the treatment of treatment resistant depression." The document has some very interesting information about DBS and the study that they are doing. Thus far, they have been able to achieve about a 50% success rate in people for which nothing else worked. They achieved this success rate by primarily targeting an area of the brain called the subgenual cingulate cortex, also known as Brodman area 25. This study will not target that area however. This study will target an area of the brain known as the medial forebrain bundle (MFB). The MFB is a part of the brain's reward system and is involved in the integration of reward and pleasure, so it seems like a good place to target. Recently, in Germany, they did a study targeting this area of the brain and 4 out of the 5 participants noticed an improvement after 7 days and they were able to maintain that improvement. Now, this is a very small sample size, but the results are encouraging. My neurosurgeon is attempting to replicate these results and determine if this is a good area of the brain to target.
So, if I am accepted into this research study I would receive DBS, but in a different area of the brain than most people that have had DBS for depression have had. It makes it a little bit more scary, because not only do they have to drill into my head to insert the electrodes into my brain, but they are doing it into an area that they have not done much before. Like I said, the initial results are encouraging, but this is certainly a new procedure that is being done. I am quite scared about it all, but I feel like I need to continue to do whatever it takes to get better. The life that I am currently leading is not a good one.
As an example of how my depression negatively effects my life, just over a month ago my father passed away. He had been sick for a while, but we thought that he would get better and his death was quite unexpected. I was certainly sad about his passing, but I have felt over the past month that my depression has been overshadowing my grief for the loss of my father. I feel that I have not been able to properly grieve because I constantly feel the depression instead. There are times that I feel the grief break through, but primarily I just feel depression. This is just my experience. Other people going through grief while experiencing depression might have different experiences.
So, for now I am going to continue with my plan to try and have the DBS surgery. It is a scary surgery and I would be going into uncharted territory, but I cannot continue like I am.
Friday, August 23, 2019
Back to DBS?
It has been a few months since I had my 6 month follow-up appointment for the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) that I had last November to try and cure my treatment-resistant depression. I haven't posted any blog articles in that time since there hasn't really been much to report. My depression has not improved. Except for the brief, small improvement that I had in the spring, my depression has not gotten better since I had the surgery. My anxiety, however, has gotten somewhat better. I have been able to go out to events that I have not been able to attend for a number of years. For example, I was able to attend my son's high school graduation, whereas I was not able to attend my other son's graduation two years earlier due to my overwhelming anxiety. Similarly, I am now able to attend weekly Mass at my local church, which I haven't been able to do in a number of years. The improvement in my anxiety is good. However, my depression is still just at bad as it has ever been, and it is still making my life very difficult to live.
In order to try and get better, I am continuing to try various medications that were recommended to my psychiatrist by Dr. Anthony Levitt, the psychiatrist for the study in which I am taking part. Nothing has worked so far, and, honestly, I am losing hope that I will find a solution in yet another pill. I believe that my depression is such that pills alone won't help. That is one of the reasons why I tried MRgFUS. The hope was that the surgery would give a boost to the medications and something would work. It doesn't appear that this boost is materializing, however.
As you may recall, when I first started this journey, there were two different surgeries that I was considering. They were MRgFUS and a surgery known as Deep Brain Stimulation (DBS). I discussed them here and here. Originally I was leaning towards doing DBS, which involves drilling a couple of holes in my skull and inserting electrodes in my brain that would hopefully change my thought patterns and cure my of my depression, but after discussions with Dr. Levitt and my neurosurgeon, Dr. Nir Lipsman, I decided to go with MRgFUS.
Since I haven't been getting any positive results from my MRgFUS surgery, I decided to explore whether it would be possible to now have DBS performed and to see if that would work. A few weeks ago I wrote to the co-ordinator of both the MRgFUS and the DBS research studies and asked her if that would be possible. She put me in contact with Dr. Lipsman's resident who said that nobody has had DBS after having MRgFUS before, but some people have had it done after having other lesioning procedures, so he would bring it up with their team and see what they had to say. Yesterday I received an email from the resident saying that the team met to discuss my case and if I still do not see any improvement at the time of my 12 month follow-up appointment in November then I would be a candidate for having DBS performed.
This is both good news and a little frightening at the same time. DBS gives me another option to possibly get better after years of suffering. However, it is also much more invasive and would involve implanting electrodes into my brain, which is kind of scary. I'm not quite sure how to feel about it, but I think that if I do not get better, then it is something that I must try. It is a promising procedure and I have to try everything possible in order to get better.
For more information on DBS you can watch the video below:
In order to try and get better, I am continuing to try various medications that were recommended to my psychiatrist by Dr. Anthony Levitt, the psychiatrist for the study in which I am taking part. Nothing has worked so far, and, honestly, I am losing hope that I will find a solution in yet another pill. I believe that my depression is such that pills alone won't help. That is one of the reasons why I tried MRgFUS. The hope was that the surgery would give a boost to the medications and something would work. It doesn't appear that this boost is materializing, however.
As you may recall, when I first started this journey, there were two different surgeries that I was considering. They were MRgFUS and a surgery known as Deep Brain Stimulation (DBS). I discussed them here and here. Originally I was leaning towards doing DBS, which involves drilling a couple of holes in my skull and inserting electrodes in my brain that would hopefully change my thought patterns and cure my of my depression, but after discussions with Dr. Levitt and my neurosurgeon, Dr. Nir Lipsman, I decided to go with MRgFUS.
Since I haven't been getting any positive results from my MRgFUS surgery, I decided to explore whether it would be possible to now have DBS performed and to see if that would work. A few weeks ago I wrote to the co-ordinator of both the MRgFUS and the DBS research studies and asked her if that would be possible. She put me in contact with Dr. Lipsman's resident who said that nobody has had DBS after having MRgFUS before, but some people have had it done after having other lesioning procedures, so he would bring it up with their team and see what they had to say. Yesterday I received an email from the resident saying that the team met to discuss my case and if I still do not see any improvement at the time of my 12 month follow-up appointment in November then I would be a candidate for having DBS performed.
This is both good news and a little frightening at the same time. DBS gives me another option to possibly get better after years of suffering. However, it is also much more invasive and would involve implanting electrodes into my brain, which is kind of scary. I'm not quite sure how to feel about it, but I think that if I do not get better, then it is something that I must try. It is a promising procedure and I have to try everything possible in order to get better.
For more information on DBS you can watch the video below:
Thursday, May 16, 2019
Psych Scales And A Bit Of Encouragement
As I wrote in my last blog post, at my 6 month follow-up appointment they did some psychiatric scales testing. They do this testing at every follow-up appointment to see if my depression is improving or not. In other words, to see if the surgery has been a success or not. The testing primarily consisted of three scales to determine the severity of my depression. As I wrote back when I originally did the psychiatric scales, all of the tests that I did at the time of my surgery showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). Originally when I had my surgery, I received a score of 25 on this test. This week I received a score of 26. Scores of greater than or equal to 23 indicate a very severe depression. Thus, my depression has gotten slightly worse according to this test. The second test that I did was the Montgomery–Åsberg Depression Rating Scale (MADRS). Originally when I had my surgery, I received a score of 36 on this test. This week I received a score of 38. Scores of greater than 34 indicate severe depression. So, my depression is also getting slightly worse according to this test. Finally I did the Beck Depression Inventory (BDI). Originally when I had my surgery, I received a score of 36 on this test. This week, my score was 38 Scores of greater than or equal to 29 indicate severe depression. Thus, I am also getting slightly worse according to this test. Overall, these test scores indicate that I am getting slightly worse since I had the surgery. The brief period of improvement that I had hasn't seemed to have had any effect on my overall scores.
I forgot to mention in my last blog post something that Dr. Levitt told me about one of the other study participants that has also received Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS). She was one of the first recipients of the procedure and noticed a slight improvement about a month or two after the surgery. He said that after 11 months she had a miraculous improvement and is now back to normal. Apparently most people that they are following have HAM-D scores that are in the 20's. Hers is now apparently at 1. This is an amazing turn-around for her. She is basically cured. So, even though I haven't gotten better yet, there is still time. They always say that it can take a year or more for things to get better.
I forgot to mention in my last blog post something that Dr. Levitt told me about one of the other study participants that has also received Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS). She was one of the first recipients of the procedure and noticed a slight improvement about a month or two after the surgery. He said that after 11 months she had a miraculous improvement and is now back to normal. Apparently most people that they are following have HAM-D scores that are in the 20's. Hers is now apparently at 1. This is an amazing turn-around for her. She is basically cured. So, even though I haven't gotten better yet, there is still time. They always say that it can take a year or more for things to get better.
Tuesday, May 14, 2019
MRgFUS 6 Month Follow-Up
I am coming up to 6 months since I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my treatment resistant depression and over the last week I had two days of tests and consultations at Toronto's Sunnybrook Hospital because of that. The tests and consultations come at a good time as I am not doing very well.
As I wrote in my last blog post, a couple of months ago I had made a significant improvement and had started to feel somewhat better since we increased my dose of Fetzima to 140 mg. This may have been the result of the surgery, may have simply been the result of increasing the dose, or perhaps a result of both. However, the improvement was noticeable. Since then we have tried to increase my dose of Fetzima to 160 mg and then to 180 mg in an attempt to achieve even better results. Unfortunately, about a week after increasing to 180 mg I started to feel worse. For the past few weeks now I have been feeling as bad as I felt before the improvement. As I stated previously, my psychiatrist used the Quick Inventory of Depressive Symptomatology (QIDS) test to determine how depressed I am at each appointment. After increasing my Fetzima dose to 140 mg I scored at 13-14, which rates as Moderate Depression. At my last appointment I scored at 18 which rates as Severe Depression. In order to try and get the improvement back, we decreased my dose back to 140 mg to see if that would help. It has been close to a week now and there has been no improvement.
Thus, I was interested to have my appointments at Sunnybrook to see what they had to say about my improvement and my loss of that improvement. I started off last Tuesday with an appointment with Dr. Nir Lipsman, the neurosurgeon that performed my surgery. He said that ups and downs like that were to be expected with the surgery and that we still have lots of time to see further improvement as often it can take up to a year for improvement to appear.
Following that I had both an MRI and a PET scan to see how my brain is doing since the surgery.
Yesterday I had the second day of tests and consultations. I first met with Dr. Anthony Levitt, the psychiatrist of the study in which I took part. He had some very interesting things to say. First he said that the fact that I had a brief period of improvement would suggest that my brain is capable of getting better and that he believes the surgery played a role in that improvement. My brain got used to the increase in dose and adjusted to go back to the way that it was. He said that what we have to do now is just recreate that improvement, manage to sustain it and build upon it so that I feel completely better. I say that we "just" have to do these things, but they are difficult things to do. He had some ideas though about how we might go about doing that. He had 5 suggestions of medications that I could take while staying at a Fetzima dose of 140 mg that might work to recreate the improvement. We sent them to my psychiatrist and we will try them over the coming months.
After meeting with Dr. Levitt, I had psychiatric scales testing done to determine how depressed I was. In the past I have posted those results, but I haven't received the results yet, so I can't post them right now. I then had neuropsychological testing done to see if there was any change in my brain functioning since the surgery. These are the same tests that I had done before the surgery. These tests consisted of mostly memory games to see if the surgery had any effect on my short term memory. I had to remember lists of words that were read to me and sort cards into various groups, for example. One test that I still couldn't figure out was a computer game that played a warped betting game with me. I had to choose cards off of one of four piles and I would either win or lose money based upon the card that was drawn. I still couldn't figure out what the criteria was for deciding if I won or lost. It seemed random to me.
So, that is how things are going. My depression is back to the way that is was before the improvement I wrote about in my last blog. I am very discouraged by this. It is hard to get a taste of a bit of improvement and then have it taken away. I can't help but feel that it is somehow my fault that the improvement didn't last. Perhaps there was something I could have done to sustain it and make it even better, but I didn't and it slipped through my fingers like water. Dr. Levitt has some ideas though about how we can recreate the improvement and I look forward to trying them.
As I wrote in my last blog post, a couple of months ago I had made a significant improvement and had started to feel somewhat better since we increased my dose of Fetzima to 140 mg. This may have been the result of the surgery, may have simply been the result of increasing the dose, or perhaps a result of both. However, the improvement was noticeable. Since then we have tried to increase my dose of Fetzima to 160 mg and then to 180 mg in an attempt to achieve even better results. Unfortunately, about a week after increasing to 180 mg I started to feel worse. For the past few weeks now I have been feeling as bad as I felt before the improvement. As I stated previously, my psychiatrist used the Quick Inventory of Depressive Symptomatology (QIDS) test to determine how depressed I am at each appointment. After increasing my Fetzima dose to 140 mg I scored at 13-14, which rates as Moderate Depression. At my last appointment I scored at 18 which rates as Severe Depression. In order to try and get the improvement back, we decreased my dose back to 140 mg to see if that would help. It has been close to a week now and there has been no improvement.
Thus, I was interested to have my appointments at Sunnybrook to see what they had to say about my improvement and my loss of that improvement. I started off last Tuesday with an appointment with Dr. Nir Lipsman, the neurosurgeon that performed my surgery. He said that ups and downs like that were to be expected with the surgery and that we still have lots of time to see further improvement as often it can take up to a year for improvement to appear.
Following that I had both an MRI and a PET scan to see how my brain is doing since the surgery.
Yesterday I had the second day of tests and consultations. I first met with Dr. Anthony Levitt, the psychiatrist of the study in which I took part. He had some very interesting things to say. First he said that the fact that I had a brief period of improvement would suggest that my brain is capable of getting better and that he believes the surgery played a role in that improvement. My brain got used to the increase in dose and adjusted to go back to the way that it was. He said that what we have to do now is just recreate that improvement, manage to sustain it and build upon it so that I feel completely better. I say that we "just" have to do these things, but they are difficult things to do. He had some ideas though about how we might go about doing that. He had 5 suggestions of medications that I could take while staying at a Fetzima dose of 140 mg that might work to recreate the improvement. We sent them to my psychiatrist and we will try them over the coming months.
After meeting with Dr. Levitt, I had psychiatric scales testing done to determine how depressed I was. In the past I have posted those results, but I haven't received the results yet, so I can't post them right now. I then had neuropsychological testing done to see if there was any change in my brain functioning since the surgery. These are the same tests that I had done before the surgery. These tests consisted of mostly memory games to see if the surgery had any effect on my short term memory. I had to remember lists of words that were read to me and sort cards into various groups, for example. One test that I still couldn't figure out was a computer game that played a warped betting game with me. I had to choose cards off of one of four piles and I would either win or lose money based upon the card that was drawn. I still couldn't figure out what the criteria was for deciding if I won or lost. It seemed random to me.
So, that is how things are going. My depression is back to the way that is was before the improvement I wrote about in my last blog. I am very discouraged by this. It is hard to get a taste of a bit of improvement and then have it taken away. I can't help but feel that it is somehow my fault that the improvement didn't last. Perhaps there was something I could have done to sustain it and make it even better, but I didn't and it slipped through my fingers like water. Dr. Levitt has some ideas though about how we can recreate the improvement and I look forward to trying them.
Saturday, April 6, 2019
Here Comes The Sun
In my previous blog post I talked about how discouraged I was because in the four months since having my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my treatment resistant depression I hadn't had any improvement and I mentioned that I probably wouldn't be posting again until after my 6 month follow-up appointment unless something changed. Well, I am pleased to report that after years of having a steadily increasing depression, I have had an improvement in my mood over the past two and a half weeks.
At my last follow-up appointment, Dr. Levitt, the psychiatrist for the study in which I am taking part, gave four suggestions for changes in my medication that may help me. The first suggestion that we tried made no change in my mood, so we abandoned that. The second suggestion that he made was to increase the dosage of the medication that I have been on. I have been on the medication Fetzima for a couple of years now. I have been taking 120 mg for that entire time. That is the maximum recommended dosage for Fetzima and my psychiatrist was hesitant to give me a higher dose because Fetzima is a relatively new medication and he hasn't had anyone on that high of a dose yet and neither had any of his colleagues. I tend to get bad side effects from medications, so he didn't want to give me a dose that he had no experience with. However, Fetzima was one of the few medications that I was able to take at full dose without any side effects and it seemed to help me with my anxiety, so we continued to use it at 120 mg. Dr. Levitt suggested that we increase it gradually to 160 mg or 180 mg to see if it gave me any more positive results and since he had experience with prescribing it at that high of a dose, my psychiatrist agreed to increase it.
We first increased my dose to 140 mg. The next day I noticed a significant change in my mood. I was no longer crying all the time. I wasn't saying "I'm not doing well" or "I feel bad" to my wife all of the time. I didn't spend all day thinking to myself "I feel horrible" or "I'm not feeling well", instead I was thinking to myself "What am I feeling?" and "Why am I feeling this way?". I didn't feel sad all of the time. Thus, it was a pretty significant change in my mood. The change lasted for the full two weeks until my next psychiatrist appointment.
My psychiatrist uses the Quick Inventory of Depressive Symptomatology (QIDS) test to determine how depressed I am at each appointment. Over the past several years my score has always been in the 19-21 range, which scores as Severe Depression or Very Severe Depression. After increasing my Fetzima dose to 140 mg I scored at 14, which rates as Moderate Depression. Therefore, the increase in my mood was significant.
It's hard to know what caused the improvement. Was it just the increase in my dose of Fetzima? Is it the MRgFUS finally kicking in? Is it a combination of the two? I tend to think that it was a combination of the two that has brought about this change.
Even though I have had a significant improvement in my mood, it is important not to overstate how well I am doing. I am still down. I am still in a depression. I am not feeling happy yet. Hence, at my last appointment, my psychiatrist increased my dose to 160 mg. Unfortunately, the increase in dose this time did not have the immediate impact that the increase to 140 mg had. I haven't noticed any change since the increase to 160 mg. It may take time, or I may have to increase it to 180 mg, or I may not have any further improvement, or I may slip back into my severe depression. It is hard to know.
At this point however, I am glad to just be experiencing this improvement in my mood and hope that it continues into the future.
Monday, March 11, 2019
Cold As Ice
I haven't made a post on this blog in quite a while. That is because there hasn't been too much to report. It is now almost four months since I had the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my treatment resistant depression and I have not noticed any improvement in my mood. As I mentioned in a previous blog post, my anxiety had seemed to decrease for a while, but even that modest gain seems to have been lost now. My anxiety seems to be back to where it was previously, and that is very discouraging.
In my last blog post I mentioned that the psychiatrist for the study in which I am taking part, Dr. Levitt, had suggested four modifications in my medications that my psychiatrist and I could try. We have tried one of them, but it hasn't made any difference in my mood thus far, which is very discouraging. My psychiatrist had questions for Dr. Levitt about the other three suggestions that he made, so they had to discuss them. I will be meeting with my psychiatrist again next week, so I should get an update as to how feasible those other three suggestions are.
The past few days, in addition to my depression, I have been battling a bad cold. I don't know if it is the depression that makes me more needy when I get sick, or if I am just a needy person to begin with, but I really find that when I get sick I become more needy. It is really difficult to try to fight off a cold while you are being held down by depression at the same time. It's all the more difficult because the depression saps all of my motivation and leaves me feeling very lethargic, and when you add a cold to that I really don't feel like doing anything. Staying in bed definitely seems like the best option.
That's where I am right now. Nothing has really improved and I may have regressed in terms of my anxiety. Getting better seems as far away now as it ever has. My posts on this blog will probably become more infrequent as there isn't much to report on now that we are more than three months post-surgery and I am not getting better very quickly. My next follow-up appointment at Sunnybrook hospital is at the 6 month mark and unless something drastic happens before then I may not post until that follow-up.
In my last blog post I mentioned that the psychiatrist for the study in which I am taking part, Dr. Levitt, had suggested four modifications in my medications that my psychiatrist and I could try. We have tried one of them, but it hasn't made any difference in my mood thus far, which is very discouraging. My psychiatrist had questions for Dr. Levitt about the other three suggestions that he made, so they had to discuss them. I will be meeting with my psychiatrist again next week, so I should get an update as to how feasible those other three suggestions are.
The past few days, in addition to my depression, I have been battling a bad cold. I don't know if it is the depression that makes me more needy when I get sick, or if I am just a needy person to begin with, but I really find that when I get sick I become more needy. It is really difficult to try to fight off a cold while you are being held down by depression at the same time. It's all the more difficult because the depression saps all of my motivation and leaves me feeling very lethargic, and when you add a cold to that I really don't feel like doing anything. Staying in bed definitely seems like the best option.
That's where I am right now. Nothing has really improved and I may have regressed in terms of my anxiety. Getting better seems as far away now as it ever has. My posts on this blog will probably become more infrequent as there isn't much to report on now that we are more than three months post-surgery and I am not getting better very quickly. My next follow-up appointment at Sunnybrook hospital is at the 6 month mark and unless something drastic happens before then I may not post until that follow-up.
Wednesday, February 13, 2019
MRgFUS 3 Month Follow-Up
Yesterday, on a very snowy and icy day in Toronto, I had the three month follow-up appointments for the Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) that I had to help treat my depression. It was a day filled with tests and meetings with doctors as they tried to see how I am doing three months after having my surgery. From my point of view, my depression has been getting worse since my last follow-up appointment in December. I have had very low mood and feelings of hopelessness and worthlessness. Thus, I was not expecting much to come out of this day of testing and meetings.
The day started out with some psychiatric scales testing. They do this testing at every follow-up appointment to see if my depression is improving or not. In other words, to see if the surgery has been a success or not. The testing primarily consisted of three scales to determine the severity of my depression. As I wrote back when I originally did the psychiatric scales, all of the tests that I did at the time of my surgery showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). Originally when I had my surgery, I received a score of 25 on this test. In December, my score improved slightly to 24. Yesterday, my score again improved slightly to 23. Scores of greater than or equal to 23 indicate a very severe depression. Thus, I have continued to score a slight improvement according to this test. The second test that I did was the Montgomery–Åsberg Depression Rating Scale (MADRS). Originally when I had my surgery, I received a score of 36 on this test. In December, my score got worse to 38. Yesterday, my score improved somewhat to a value of 34. Scores of greater than 34 indicate severe depression. So, I am getting slightly better according to this test, but still scoring in the level of severe depression. Finally I did the Beck Depression Inventory (BDI). Originally when I had my surgery, I received a score of 36 on this test. In December, my score got worse slightly to a level of 37. Yesterday, my score got even worse to a level of 40. Scores of greater than or equal to 29 indicate severe depression. Thus, I am getting slightly worse according to this test. Overall, these test scores indicate that I am not improving greatly, but not getting substantially worse, which doesn't quite match how I am feeling as I felt my depression get worse. Hence, the surgery has had no real effect on me as of yet, I am still suffering from severe depression.
Next I had an MRI performed to see what is happening with the lesions in my brain that were created as a result of the surgery. At this point I am well beyond the time frame that they would be worried about severe neurological symptoms appearing. However, they do want to take a look at the lesions as they can shrink as they heal. When they are first created, they are swollen and quite large. As time progresses, they begin to heal up and shrink. They want to see how much they have shrunk and if they are still there.
Then I had a meeting with the neurologist for the research study in which I am taking part, Dr. Nir Lipsman. The first comment that he had upon seeing me was that my hair had grown back. I'm not sure what he was expecting, but it would be more worth mentioning if my hair hadn't grown back and I was still bald. Anyway, he said that he had a chance to take a quick look at my MRI images, and, in fact, the lesions had decreased in size somewhat. As I said this is to be expected and doesn't affect the probability of a successful outcome. He reassured me that we are still early, only three months post-surgery, and that it can take up to a year to see any results. Another thing that he said that was reassuring was that they viewed treatment-resistant depression as a separate condition from regular depression and that they do not view my surgery as a final attempt at getting better. They view the surgery as simply the first attempt. If the surgery does not work out, there are other things that they can try to cure me. That made me feel better.
Finally, I had an appointment with the psychiatrist for the research study in which I am taking part, Dr. Anthony Levitt. I mentioned to him that I had noticed my anxiety had somewhat improved (as I mentioned in a previous blog post), while my depression had gotten somewhat worse. He said that this was a good sign. It seems that the surgery works on a pathway in the brain that is primarily responsible for feelings of anxiety. Thus, it is expected that my anxiety would get better first and that my mood would then follow. That was a good thing to hear. He also said that the surgery may make me more likely to have positive results from anti-depressant drugs that didn't work in the past. He suggested four things for me and my psychiatrist to try to see if they improve my mood. My psychiatrist and I were under the impression that we couldn't make any changes to my medications until at least six months post-surgery, but he said I am free to make changes any time we see fit.
Overall, it was kind of a mixed bag of results from this three month follow-up. I am not improving, but that is not really expected yet, and some encouraging words from the study doctors. I guess I just have to continue waiting and try some new medications to see if I get better.
The day started out with some psychiatric scales testing. They do this testing at every follow-up appointment to see if my depression is improving or not. In other words, to see if the surgery has been a success or not. The testing primarily consisted of three scales to determine the severity of my depression. As I wrote back when I originally did the psychiatric scales, all of the tests that I did at the time of my surgery showed that I was suffering from severe depression. The first test that we did was the Hamilton Rating Scale for Depression (HAM-D). Originally when I had my surgery, I received a score of 25 on this test. In December, my score improved slightly to 24. Yesterday, my score again improved slightly to 23. Scores of greater than or equal to 23 indicate a very severe depression. Thus, I have continued to score a slight improvement according to this test. The second test that I did was the Montgomery–Åsberg Depression Rating Scale (MADRS). Originally when I had my surgery, I received a score of 36 on this test. In December, my score got worse to 38. Yesterday, my score improved somewhat to a value of 34. Scores of greater than 34 indicate severe depression. So, I am getting slightly better according to this test, but still scoring in the level of severe depression. Finally I did the Beck Depression Inventory (BDI). Originally when I had my surgery, I received a score of 36 on this test. In December, my score got worse slightly to a level of 37. Yesterday, my score got even worse to a level of 40. Scores of greater than or equal to 29 indicate severe depression. Thus, I am getting slightly worse according to this test. Overall, these test scores indicate that I am not improving greatly, but not getting substantially worse, which doesn't quite match how I am feeling as I felt my depression get worse. Hence, the surgery has had no real effect on me as of yet, I am still suffering from severe depression.
Next I had an MRI performed to see what is happening with the lesions in my brain that were created as a result of the surgery. At this point I am well beyond the time frame that they would be worried about severe neurological symptoms appearing. However, they do want to take a look at the lesions as they can shrink as they heal. When they are first created, they are swollen and quite large. As time progresses, they begin to heal up and shrink. They want to see how much they have shrunk and if they are still there.
Then I had a meeting with the neurologist for the research study in which I am taking part, Dr. Nir Lipsman. The first comment that he had upon seeing me was that my hair had grown back. I'm not sure what he was expecting, but it would be more worth mentioning if my hair hadn't grown back and I was still bald. Anyway, he said that he had a chance to take a quick look at my MRI images, and, in fact, the lesions had decreased in size somewhat. As I said this is to be expected and doesn't affect the probability of a successful outcome. He reassured me that we are still early, only three months post-surgery, and that it can take up to a year to see any results. Another thing that he said that was reassuring was that they viewed treatment-resistant depression as a separate condition from regular depression and that they do not view my surgery as a final attempt at getting better. They view the surgery as simply the first attempt. If the surgery does not work out, there are other things that they can try to cure me. That made me feel better.
Finally, I had an appointment with the psychiatrist for the research study in which I am taking part, Dr. Anthony Levitt. I mentioned to him that I had noticed my anxiety had somewhat improved (as I mentioned in a previous blog post), while my depression had gotten somewhat worse. He said that this was a good sign. It seems that the surgery works on a pathway in the brain that is primarily responsible for feelings of anxiety. Thus, it is expected that my anxiety would get better first and that my mood would then follow. That was a good thing to hear. He also said that the surgery may make me more likely to have positive results from anti-depressant drugs that didn't work in the past. He suggested four things for me and my psychiatrist to try to see if they improve my mood. My psychiatrist and I were under the impression that we couldn't make any changes to my medications until at least six months post-surgery, but he said I am free to make changes any time we see fit.
Overall, it was kind of a mixed bag of results from this three month follow-up. I am not improving, but that is not really expected yet, and some encouraging words from the study doctors. I guess I just have to continue waiting and try some new medications to see if I get better.
Saturday, January 19, 2019
Two Months
Today is two months since I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my Treatment Resistant Depression (TRD). I had hoped that I would have felt something improve by this point in time, but I haven't noticed any improvement. In fact, over the past couple of weeks, I would say that my depression has actually gotten worse.
As I keep saying, the doctors do not expect me to notice any improvement in my condition for at least three months to a year after having the surgery. Therefore, it is perhaps not surprising that I haven't noticed any change yet. However, my mood over the past couple of weeks has gotten worse, as I have noticed an increase in my lethargy and lack of motivation, as well as in my feelings of hopelessness, worthlessness and loneliness. I find it increasingly difficult to get through each day.
My wife, however, sees this as something positive. When we met with Dr. Levitt, the psychiatrist for the research project in which I am taking part, he said that often people get worse before they get better when they have this surgery. Thus, it is possible that what I am experiencing now is a prelude to me getting better at some point. On the other hand, it may just be that I am getting worse and that the surgery has had no effect. There is no way to tell and that is the hard part.
Another point that Dr. Levitt made was that the results of the surgery may be subtle. I may not get better from the surgery itself, but the surgery may make medications that haven't worked in the past start to work for me. Thus, at some point, if I don't get any better, I will have to start retrying all of the medications that I have tried before to see if something works now. That could take a long time.
I am scheduled in for my three month follow-up appointment on February 12. At that time I will meet with Dr. Levitt as well as the study neurosurgeon and I will have psychiatric scales done again to see if I am improving or not. Finally I will have an MRI to see what is happening with the lesions that they created during the surgery.
So, that's where I am after two months. I'm getting worse and not seeing any improvement. That may be a sign that I will get better, or it may not. I still have a long road ahead of me.
As I keep saying, the doctors do not expect me to notice any improvement in my condition for at least three months to a year after having the surgery. Therefore, it is perhaps not surprising that I haven't noticed any change yet. However, my mood over the past couple of weeks has gotten worse, as I have noticed an increase in my lethargy and lack of motivation, as well as in my feelings of hopelessness, worthlessness and loneliness. I find it increasingly difficult to get through each day.
My wife, however, sees this as something positive. When we met with Dr. Levitt, the psychiatrist for the research project in which I am taking part, he said that often people get worse before they get better when they have this surgery. Thus, it is possible that what I am experiencing now is a prelude to me getting better at some point. On the other hand, it may just be that I am getting worse and that the surgery has had no effect. There is no way to tell and that is the hard part.
Another point that Dr. Levitt made was that the results of the surgery may be subtle. I may not get better from the surgery itself, but the surgery may make medications that haven't worked in the past start to work for me. Thus, at some point, if I don't get any better, I will have to start retrying all of the medications that I have tried before to see if something works now. That could take a long time.
I am scheduled in for my three month follow-up appointment on February 12. At that time I will meet with Dr. Levitt as well as the study neurosurgeon and I will have psychiatric scales done again to see if I am improving or not. Finally I will have an MRI to see what is happening with the lesions that they created during the surgery.
So, that's where I am after two months. I'm getting worse and not seeing any improvement. That may be a sign that I will get better, or it may not. I still have a long road ahead of me.
Monday, January 7, 2019
Seven Weeks
Well, today has been seven weeks since I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) to help treat my depression. Except for my psychiatrist noticing a slight decrease in my anxiety, I haven't noticed any change in my depressive symptoms, or in my anxiety. I must say that I am disappointed in the results thus far. I was hoping that I would have noticed something shifting by now. I have to remember, like I keep saying, that it can take three months to a year before any improvement is noticed in the depression of an MRgFUS patient. When every day is a struggle though, three months to a year can seem like a lifetime. Already, the seven weeks that I have been waiting has seemed like a long time to wait.
Today was especially difficult, because it was not only the seven week mark since my surgery, but both of my boys went back to school after the Christmas break. One of them is in university and has been off of school for close to a month, and the other one is in his final year of high school and has been out of school for a couple of weeks. Thus, this was the first day in close to a month that I spent most of the day alone.
Days spent alone are really tough to deal with for someone suffering from depression. The lethargy, hopelessness, worthlessness and loneliness really settle in. As I mentioned in some of my earlier blog posts, I had started to watch a free, online MIT course in economics, to take my mind off of the waiting for surgery to take effect. I finished up that course yesterday, and I must say that it was a struggle. I didn't have difficulty following each lecture on its own, but following 26 straight lectures was a challenge with my diminished intellectual capacity due to my depression. I don't think that I could watch another course. It's just too difficult and I didn't get as much positive benefits from watching a course in a topic in which I am interested as I thought that I would get. Keeping my mind occupied is a real challenge when I have trouble maintaining my concentration, as many people with depression do.
I don't see the neurosurgeon and study psychiatrist that have been following me since before the surgery until three months after the surgery. That should bring me to sometime near the end of February. I really hope that I will notice a change in my mood by that point. It will probably be another five or six weeks before I see them and that just seems like a very long time. I know that in comparison to the close to a decade that I have been dealing with this depression, it isn't long to wait, but when you are waiting for something to happen and trying to deal with all of the difficulties that depression brings, every day is a struggle.
After reading an article recommended to me by a friend, I bought a book this weekend by the author of that article that explores what the author believes to be the root causes of depression and how to deal with them. I don't know if I am going to be able to read that book. Not only do I lack the mental concentration required to read something like that, but I think that I would find reading a book on that topic very stressful. For better or for worse, I am headed down this path to try and get better. I think that reading about the author's opinion on alternative methods of treatment would cause me to second guess myself and lead me into despair. I want to try any method available to get better, I'm just not sure that I am in a good place to try them right now. I don't know. I will have to see if I can get the courage up to read that book.
Thus, I find myself at the seven week mark to be no better off than I was before the surgery. I'm still struggling with the symptoms and trying to find a way to get better, but limited by my own shortcomings. Hopefully things will turn around soon.
Today was especially difficult, because it was not only the seven week mark since my surgery, but both of my boys went back to school after the Christmas break. One of them is in university and has been off of school for close to a month, and the other one is in his final year of high school and has been out of school for a couple of weeks. Thus, this was the first day in close to a month that I spent most of the day alone.
Days spent alone are really tough to deal with for someone suffering from depression. The lethargy, hopelessness, worthlessness and loneliness really settle in. As I mentioned in some of my earlier blog posts, I had started to watch a free, online MIT course in economics, to take my mind off of the waiting for surgery to take effect. I finished up that course yesterday, and I must say that it was a struggle. I didn't have difficulty following each lecture on its own, but following 26 straight lectures was a challenge with my diminished intellectual capacity due to my depression. I don't think that I could watch another course. It's just too difficult and I didn't get as much positive benefits from watching a course in a topic in which I am interested as I thought that I would get. Keeping my mind occupied is a real challenge when I have trouble maintaining my concentration, as many people with depression do.
I don't see the neurosurgeon and study psychiatrist that have been following me since before the surgery until three months after the surgery. That should bring me to sometime near the end of February. I really hope that I will notice a change in my mood by that point. It will probably be another five or six weeks before I see them and that just seems like a very long time. I know that in comparison to the close to a decade that I have been dealing with this depression, it isn't long to wait, but when you are waiting for something to happen and trying to deal with all of the difficulties that depression brings, every day is a struggle.
After reading an article recommended to me by a friend, I bought a book this weekend by the author of that article that explores what the author believes to be the root causes of depression and how to deal with them. I don't know if I am going to be able to read that book. Not only do I lack the mental concentration required to read something like that, but I think that I would find reading a book on that topic very stressful. For better or for worse, I am headed down this path to try and get better. I think that reading about the author's opinion on alternative methods of treatment would cause me to second guess myself and lead me into despair. I want to try any method available to get better, I'm just not sure that I am in a good place to try them right now. I don't know. I will have to see if I can get the courage up to read that book.
Thus, I find myself at the seven week mark to be no better off than I was before the surgery. I'm still struggling with the symptoms and trying to find a way to get better, but limited by my own shortcomings. Hopefully things will turn around soon.
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