This past Monday (Nov. 7th) I was given a behind the scenes look at Dr. Alfonso Fasano’s neuromodulation clinic, one of the busiest of its kind in the world.
On his schedule for that day were about 25 patients, which is fairly typical for him. But these were not exactly 25 patients that a typical doctor might see in a given day. They were patients whom the Canadian medical system had funneled to him, individuals who not even most movement disorder specialists, let alone neurologists or general practitioners, could properly treat. For him and his team though, it was just another Monday.
Dr. Fasano, for those who might not already know, is the co-director of the surgical program at the movement disorder center at Toronto Western Hospital. He deals primarily with patients who have already undergone one of the advanced neurosurgeries that the hospital offers. These primarily include patients diagnosed with Parkinson’s disease or Essential tremor who have had Deep Brain Stimulation(DBS) therapy or a shunt inserted to treat a condition called normal pressure hydrocephalus (NPH), an abnormal buildup of fluids in the brain’s ventricles or cavities.*
* Little funny side story, the first phrase I learned in Shanghainese back when I was living there was “nong nao zi wa te le?” or “你脑子进水了?” in standard mandarin. It is a derogatory statement used when a person does something silly or stupid but it literally translates to “Do you have water in your brain or something?”
(Dr. Fasano and I at the 2019 Porridge for Parkinson’s event)
For each patient he spends 5-10 minutes reviewing their case in his office with one of his fellows (who have usually had about 30 minutes with the patient to go through a battery of tests and questions) before getting about 20 minutes to sit down with each. In that time he must assess whether or not the patient needs any adjustments to their medications (there are about 40-50 different medications a movement disorder specialist might prescribe) as well as whether or not the advanced therapy needs to be adjusted (and with DBS there are near infinite ways to adjust it for each patient.) While also being a reassuring doctor who doesn’t seem as busy as he really is.
(Note: for the nine hour shift in which I shadowed him he did not stop to eat once or even go to the bathroom. He also shared with me that he had gotten north of 200 emails that day.)
Getting the balance as right as can be for each patient, in such a short time window, is why he is who he is. It is also a big part of the reason why Toronto is now the leading center in the world for such complex cases…
(The ranks above are global ranks for deep brain specialists compiled by expertscape)
However, mistakes are still made and rarely do patients leave feeling perfectly well. This is largely due to the complications and varieties of their conditions and the constraints placed on time. The goal of each visit is to optimize the given therapies, as best as can be, in the time given, so that the person can go and live as good a life as possible until their next visit. Those next visits are typically six months down the road (though the timing can vary greatly), meaning that the patient has to live with any changes that come about as a result of these all-too-brief visits until the next one.
In a more ideal world physicians would have as much time as needed and patients in turn would not have to feel the levels of stress and anxiety that these interactions almost always induce. Sadly, that is not the world we live in, nor are things looking like they are going to get any better any time soon. In fact, every year 120 patients get added to this one clinic, and doctors like Fasano and his co-director Dr. Munhoz would not be able to operate without the admin staff, nurses, and fellows who do what they can to try and keep up with the growing demand.
Thankfully, there are a few solutions to some of these challenges in the pipeline. From new techniques that might quicken the programming process and allow for better optimization, to others that will allow for remote programming so that patients don’t have to come in from all over the world anymore just to be seen, to companies working to improve the data collection and algorithms these devices use.
But regardless, the need for society to produce more experts like Dr. Fasano will continue to grow. Though he is doing what he can to try and replicate himself – he has thus far trained 30 international fellows who are all working as MDSs and helping patients in different parts of the world.*
For anyone who might want to help out, you can donate directly to this program by clicking the link below and choosing Movement Disorders Research Fund in the drop down under “other”:
*A final note from Dr. Fasano: “Without the help of fellows we wouldn’t be even close to the productivity we have here. Keep in mind that they are all post-docs, MDs or neurologists in their countries. They have families left behind for a year or two, often young kids, all to pursue their dreams. They’re some of the most motivated doctors on the planet who come to us to learn the skills needed to better treat people in need. We are incredibly grateful for the ones we have but we also know that we will need to continue to train more to keep up with the growing demands these diseases impose on society and try, though fail we often do, to stymie the suffering caused by neurodegeneration.”