Saturday, October 27, 2018

I Have A Date

Yesterday, the team of doctors at Toronto's Sunnybrook Hospital that are leading the studies for Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) for depression had a meeting to discuss all of the potential candidates and what to do with them.  It is a meeting that I have been waiting for, as they were deciding which surgery, if any, I am to have.  I was hoping to be approved for FUS as that seems to be the option which provides me with the most hope of getting better combined with the fewer possibilities of complications in the future, whether or not the surgery is a success, even though the changes that it makes to the brain are permanent and irreversible.

I received an email from the research manager of the studies with the news.  I have been given the green light to go ahead with the FUS treatment.  The surgery is currently scheduled for November 19th, which is just a little more than three weeks away.  Things are moving quickly now.  I am very glad about this as it means that I have some hope that my years of suffering may soon be over.  Of course, I have to be realistic.  The surgery may not be successful and even if it is successful, it may take anywhere from 3 months to a full year for me to notice any change.  However, it is the first step.  As I said in my previous blog post, I am very scared by the whole process, but am willing to go through with it because of the benefits that it could potentially bring to me.

Between now and the surgery date I have two days of screening and baseline testing to complete.  Some of this is just formalities that I have to go through as part of preparing for surgery.  However, some of it is testing to see if the surgery has any adverse effect on me.  While I am going into this surgery looking for an improvement in my depression and anxiety symptoms, they are doing it as part of a clinical trial to determine the safety and effectiveness of this procedure.  Therefore, they want to get a baseline as to what is my current level of functioning.  They will then compare this with follow-up testing at regular intervals over the next year.

On my first day of screening and baseline testing I am going to have a neurological and physical exam done by the study neurosurgeon, Dr. Nir Lipsman.  I am then going to have an MRI scan of my brain, some psychiatric scales testing (to see exactly how depressed I am going into the procedure), a CT scan of my brain and some bloodwork.

On the second day of screening and baseline testing I am going to have a full neuropsychological assessment, a visit with the anesthesiologist (since I will be put to sleep for parts of the procedure) and a PET scan of my brain.

On the day of my surgery I believe that I will have to stay in the hospital overnight for observation and then to have an MRI taken the next day.  I'm not looking forward to that as I haven't had to stay in the hospital since I had my tonsils out when I was three years old.

This is all real now!  Absent any unforeseen complications, I will be having the surgery in a few weeks.  I believe that I will be the sixth person in North America to have this surgery for depression and about the 21st person in the world.  I hope that it all goes well.

Tuesday, October 23, 2018

I'm Scared

As time passes I move closer to the day that I will find out what the team of doctors will decide on whether I will undergo Deep Brain Stimulation (DBS) or Focused Ultrasound Surgery (FUS).  I will probably learn their decision sometime next week, as they are making their decision this Friday (October 26).  I am excited to hear their decision.  I don't think that I am overstating things to say that it will be life changing for me.  However, the main emotion that I am feeling regarding this decision is fear.  There is a lot to be afraid of.

The first thing that I am afraid of is the possibility of them refusing me permission to receive either surgery.  I do not think that this is likely to happen since the three doctors that I have met with thus far have all said that I am a candidate and that I qualify.  However, it is still a very real possibility.  Remember that both of these surgeries are parts of research studies and I don't know the parameters of those studies.  I could be disqualified for any number of reasons.  I just may not fit into the profile that they want in their study.  I don't know what I am going to do if they refuse me for both of the studies.  This is really my last hope.  I have tried everything else that the many doctors that I have seen have recommended to me.  I can't go on living this way.

If they do approve me for one of the surgeries, then I am afraid of the actual surgery itself.  If I have DBS, then the surgery is a complex one in which they drill holes in my skull and insert electrodes into precise points in my brain.  On the other hand, if I have FUS, my preferred option, then they don't have to open up my brain, but they are still creating lesions, or destroying, a portion of my brain during a lengthy operation inside of an MRI machine.  Any number of things can go wrong when they are making permanent changes to your brain like that.  I am not looking forward to the surgery, but it is something that I must go through if I want to get better.  I had a similar feeling before I received ECT (electroshock treatments).  I was petrified of getting it done, but I knew that I had to do it.  In hindsight it was actually not very difficult at all and certainly nothing compared to the idea of having brain surgery.

Once I have the surgery, regardless of which one I have, there is only about a 60% chance of it working.  Therefore, I am very afraid that I will have the surgery and it won't work.  Of course, I won't know that it didn't work for a year, or more, because that is how long it can take for these surgeries to take effect.  That's a long period of watchful waiting.  If it doesn't work and a year from now I am no better off than I am now, I, again, don't know what I am going to do.  As I said earlier, this is my last hope.  This is one of the reasons that I would prefer not to get DBS as I don't want to be left no better off, but with this device planted in my body for the rest of my life.

It may seem strange, but I am also afraid that the surgery will be successful.  That is the outcome that I want, of course.  However, as I mentioned in a previous blog posting, the process of recovery, rebuilding my life and learning to live with the full range of human emotions again can be a challenge.  I have been depressed for so long that I don't know how to live a normal life.  I am going to have to re-learn many things that most people take for granted.  I don't know what I am going to do with myself and how I will fill my days.  I would like to think that I would get a job at some point, but I don't know what I would get a job doing.  I have been out of the cryptography world for so long now that I don't know if I could successfully get back into it, and even if I could, Ajax isn't a place with a lot of demand for people with that skill set.  I would probably have to re-invent myself with a new career at 50+ years old.  That sounds like a daunting task.

As you can see, I am afraid of every aspect of this possible surgery.  From the possibility of not getting it, to the surgery itself, to the possibility of it not working, to the possibility of it working, it all frightens me.  However, as I said, I have to go ahead with this surgery if I want any hope of getting better.

One thing that does give me hope is that I found an article by the team of South Korean doctors that have also been performing FUS surgery for depression.  It describes their first surgery using this technique and the success that they had.  A 56-year old woman who had been depressed for 19 years had the surgery and was noticeably improved after only one week.  I know this is only one data point, but it is encouraging.  I also learned from the article that I gave some erroneous information in my last blog post.  In that post I said that FUS for depression involves performing an anterior cingulotomy using ultrasound waves to create bilateral lesions in the anterior cingulate.  This article actually states that they perform a bilateral anterior capsulotomy, creating lesions in the anterior limb of the internal capsule. 

The closer that I get to this surgery being real, the more frightened I become.  I hope that my fear doesn't get the best of me and that I am actually able to go ahead with the surgery, if I am approved.

Thursday, October 18, 2018

More on Focused Ultrasound Surgery

Now that I have made the decision that I would prefer to have Focused Ultrasound Surgery (FUS) over Deep Brain Stimulation (DBS), I thought that I would give some more information on FUS and what it is that they do in this surgery.  I still don't know which surgery I will ultimately get approved for, if any.  However, they said that if there isn't a medical reason to prefer one surgery over the other then it would come down to patient preference.  As far as I know, there isn't a medical reason to prefer one surgery over the other, so I am hoping that I will be able to get FUS.

To begin, FUS isn't its full name.  It is more formally known as Magnetic Resonance-Guided Focused Ultrasound or MRgFUS.  That is because the entire surgery takes place inside an MRI machine.  They use the MRI images to guide them where to focus the ultrasound waves into the brain.  It is a painstaking procedure with the surgery lasting 3 to 4 hours or more.

I found the article "The History and Future of Ablative Neurosurgery for Major Depressive Disorder" to be extremely helpful.  It was written, in part, by three of the doctors that I am seeing at Sunnybrook Hospital regarding my surgery.  It discusses the surgeries that have historically been performed on people with depression and recent advances that may improve upon those surgeries.  MRgFUS is one of those advances.  In a MRgFUS surgery for depression they would perform an anterior cingulotomy using the ultrasound waves to create bilateral lesions in the anterior cingulate instead of using surgical tools.  As the article explains, this procedure has been used for decades and they expect a 50-60% success rate.  They don't know what the actual success rate will be though since they have only performed 5 of these MRgFUS surgeries for depression in North America (all at Sunnybrook Hospital) and only 20 in the world (with the rest being performed in South Korea).  They also don't know what the full range of possible side effects would be.  They do know that some people experience a headache, which goes away after a period of time, due to the device that they must bolt your head into.  They are also concerned that there may be some memory issues, for example, problems with short-term memory or verbal memory, although they haven't seen these to date.

One of the problems with proceeding with MRgFUS is that they may not be able to complete the procedure due to the density of the patient's skull.  The skull is made up of a layer of bone, and then a layer of marrow, and then another layer of bone, and finally the brain.  Sometimes the ultrasound waves will bounce off of the second layer of bone and not be able to reach the brain.  They can predict who this will happen to based upon the density of the skull using a CT scan ahead of time.  I was told that about 10% of people have skulls that will not permit MRgFUS.  If I am one of those people, then there is another option.  They can use Gamma Knife Radiation Surgery (GKRS) to perform the anterior cingulotomy using radiation to create the lesions instead of ultrasound waves.  This is not a preferred option since they don't have the image to guide them and it exposes the patient to radiation.  They said that a couple of people who couldn't have MRgFUS had to have this surgery performed and I would also go with GKRS if MRgFUS didn't work for me.

I was reminded recently of one of the reasons that I am considering such drastic measures to cure my depression.  I looked at an old picture from 2007 and I couldn't believe the way that I looked. 


I have not seen myself look so happy in years.  In 2007, my depression was just starting and I wasn't as affected by it as I have been over the past number of years.  That picture reminded me of what I have lost to my depression.  I have lost my happiness and joy of living.  I am a shell of my former self.  I would do anything to get that back.

Wednesday, October 10, 2018

Hurry Up And Wait, Part 2

I had my appointment with the study neurosurgeon, Dr. Nir Lipsman, today.  It went well.  He first took down my history with depression and all of the things that I have tried to get rid of it.  He said that I definitely fulfill the definition of Treatment Resistant Depression, which is good because every psychiatrist that I talked to has said the same thing.  He then described both Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS) and talked about the pros and cons of each, which was good because he made us aware of some things that we didn't already know.

For DBS he talked about the potential complications of the surgery, and there are a lot of them.  These are complications of any brain surgery plus additional complications that arise from implanting a device in the brain.  These complications include the possibility of getting bleeding in the brain, getting an infection, having the device malfunction or experiencing brain damage.  These are all low probability events, but they could happen.  One of the main advantages of DBS is they can adjust the settings of the DBS device to get better results.

For me, the more interesting part was when he was talking about FUS, because that is the surgery that I am definitely leaning towards.  He said that so far there have been about 20 patients that have had FUS for depression.  There have been 5 at Sunnybrook Hospital and the rest have been in South Korea.  That's not a large sample size, but they also have some experience with creating lesions in the brain to treat depression using traditional surgery and electrodes instead of using ultrasound that should be applicable.  He said that it works in about 50-60% of patients and that it usually takes at least 3 months to work, but may take as much as a year.  The main side effects that they are concerned about are memory issues.  They are concerned about permanent short term memory loss or permanent verbal memory loss.  That's the thing about making permanent lesions in the brain, the side effects are also permanent.  They haven't seen any of these side effects yet, but they are possible.  One of the main disadvantages of FUS is that they perform the surgery and then you either get better or you don't.  It's one shot to make permanent changes to your brain.  However, the main advantages are that you don't have to undergo the opening of your brain and they know that creating lesions works.

Here is a video of Dr. Lipsman talking about FUS:




I was hoping that I would get a final word today on whether or not I was accepted into either or both studies.  Unfortunately, that didn't happen.  He said that he meets with his team every 4-5 weeks to discuss the patients that they have seen and what they can do for them.  It is at this meeting where they will decide my ultimate fate.  The research manager said that the next meeting is on October 26 and I can expect to hear from them the following week.  That is about 3 weeks of more waiting.  I wish that I had an answer now.  At least I got a good feeling from him that I am the type of patient that they are looking for and there are no roadblocks.  I was concerned about my hypothyroidism, because I was told that I had to get that under control before I had any surgery.  My most recent blood test put my thyroid level (TSH) at 5.14 mIU/L.  This is still not in the ideal range of less than or equal to 5.0 mIU/L, but it is close enough that they don't seem worried about it.

So, that's where I am.  Another 3 weeks of waiting and hoping that I get approved for FUS, although I would do DBS also if they only offered that to me.

Thursday, October 4, 2018

I Am Approved For Both Surgeries, But ...

Well, I had my appointment with the study psychiatrist, Dr. Anthony Levitt today.  It was a very interesting meeting that we had.  He reviewed my history and agreed that some form of neuromodulation was required in my case.  Therefore, he approved me for both Deep Brain Stimulation (DBS) and Focused Ultrasound Surgery (FUS).  That is good news.  It means that I can move on to the next step of meeting with the neurosurgeon, Dr. Nir Lipsman.  I already have that scheduled for next Wednesday, October 10.  There is just one small condition that I have to meet before any surgery can be performed.  I recently developed a low thyroid (hypothyroidism) and have been taking medication to control that.  He needs to see a lab report of a blood test where my thyroid is in the right range before I can have the surgery.  I am going for a blood test next week and hopefully my medication is working and my thyroid is no longer an issue.

He also gave me a lot to think about with respect to the decision to do either DBS or FUS.  I had been leaning toward doing DBS since that procedure has been around longer, they know how to perform it and they have data to back it up.  It also has the advantage that they aren't making permanent changes to your brain and can adjust the settings on the device to get the desired result.  FUS on the other hand has only been performed on a small number of patients for depression and they are still studying to see how safe and effective it is.

Dr. Levitt, however, said that while using ultrasound to create a lesion in the brain is a new procedure, the idea of creating a lesion in the brain to treat depression is not new.  They have been doing it for 60 years.  It's just that in the past they would create the lesion by drilling a hole in the skull and inserting an instrument into the brain to create a lesion at the desired location.  So, the theory behind the work is not new, just the method of creating the lesion.  He also said that while with FUS the changes that they make to the brain are permanent, they do it in such a way as they know whether it will cause permanent damage or not.  They use the ultrasound to heat up a volume of brain 1 millimetre cubed to the point that the cells are inactive, but not dead.  They then check on how the patient is doing and if he/she notices any changes.  If everything is okay then they heat it up to a higher temperature to kill the brain cells.  Thus, there is minimal chance of brain damage causing side effects.

Another thing to consider is that I have some Obsessive-Compulsive Disorder (OCD) symptoms.  He said that based upon the prior work with creating lesions in the brain they know that it works for people with OCD.  DBS on the other hand, isn't quite as well studied for OCD.  It should work, but they don't really have the data.

He did say that with FUS patients typically have a headache for about a week.  One patient had headaches for 3 months and another one has had headaches for 4 months and they haven't gone away.  The headaches aren't a result of the lesions being created, but of the device that they must bolt your head into to keep it immobile for the duration of the surgery.

So, now I am less sure about which way to go.  DBS has the inherent risks associated with drilling holes in your head and sticking electrodes in your brain, but has been studied more and they have the data to back it up.  FUS on the other hand doesn't require them to open up my head and can be done safely so there is minimal chance of brain damage side effects, but this particular technique hasn't been used very much.

He's given me a lot to think about.  I'm going to be spending the upcoming Thanksgiving weekend pondering all of this and coming up with more questions to ask the neurosurgeon on Wednesday.