-by David Dansereau,MSPT Know-Stroke.org
I admit, I was drifting in thought as I watched the movie Interstellar with my boys over the weekend. The 2014 movie stars Matthew McConaughey who plays Cooper, an ex-pilot who must leave his family on Earth behind to lead an expedition beyond our galaxy through a black hole to discover whether mankind has a future among the stars. My boys love space movies and usually I am guilty of falling fast asleep between the two of them by 30 minutes in, but this movie kept me awake for nearly 3 hours. I was thinking if I could speed up time like in the movie, where will PFO closure be 7, 15, 30 years from now? Also, if I could go back in time, would I elect to have PFO closure again?? PFO closure at one time early in my treatment after my stroke was described to me by a treating physician as a condition stuck in a “grey” area of medicine. Unfortunately, I believe PFO closure, along with research into this area is now changing colors and drifting more from grey to black. I wonder, does PFO research still have a place in medicine?
The black hole
Beyond the issue of reimbursement which has been pulled into the black hole years ago, patients simply looking for best practices on managing a possible pathological PFO have been left behind too long in the mission to explore and treat PFO’s. The medical community has mostly failed us (patients) by not defining a clear patient pathway. Patient’s have united together over time to try to make a difference. For example, there have been groups of patient’s that started the PFO Research Foundation out of frustration and lack of united efforts by the medical community to hear patient’s voices. I disclose I was once part of this patient group at the beginning. Currently, however, many of these patient efforts remain “under construction” like the vessel being constructed in Intersteller in attempt to bring humans to a better place. There have also been many smaller, all well intended, social media groups that have entered the PFO galaxy trying to fill the void left by medicine. Several PFO debate and support groups surrounding the condition have spun off from migraine and stroke to other possible related disorders. All either lack anything new to report, or the ability to gather new funding resources to lead serious PFO patient directed research groups like this forward. At the same time, most physicians that remain in the PFO space continue to argue and take sides over best practices for management. Either way, the PFO closure debate slowly is making almost no measurable progress and patients are still left to look to the internet for best practices, like Cooper did to space, for answers. While some patients along with their physicians await FDA ruling, many physicians caught in the controversies that surrounds PFO closure have already made up their mind and stopped doing PFO closure procedures as reimbursement has dried up. Some have simply dismissed the option from the start, others are waiting and holding their opinions silent adrift in a black hole of sorts.
While we all wait, there has been some new data and PFO research analysis conducted by pooling data. There are also a few international studies and groups slowly trying to collect, analyze and report new data. I wish, however, as do many PFO patients waiting on the launchpad here in the U.S., that we could somehow rocket this effort forward much faster so we are not looking back like Cooper at a lifetime that has passed him by trying to solve a problem.