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.

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.

 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.

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.

MRgFUS 12 Month Follow Up

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.

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.

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:

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.