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.