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Patients Response – to the AHS – The Left Behind
Hello all – Below is a link to a powerful patient response/medtalk directed to the Americas Hernia Society, the surgeons adjacent the speciality, and the far too many patients left suffering as a result of abdominal wall surgery gone awry. This rallying cry is particularly important in light of the The NY Times article relating to similar issues, the serious alarm for widespread suboptimal care and frequent post-operative complications broadly acknowledged by the society itself, and the ongoing failures to confront the damage being done from overly aggressive or inappropriate surgery occurring “even in expert hands.”
This program documents our harrowing journey through an extraordinary amount of medical error, the repeated and often inexplicable failures to correct it, and the surgical complications and injury that manifested as a result of many broken promises to exhaustively discussed plans. All of which occurred in spite of extraordinarily kind gestures of contribution and support made to a past societal president helming a purported center of excellence in the field.
The program shines further light on the troubling responses that some surgeons default to even while preaching publicly for broader accountability and patient-first responsibility. (It would be of particular interest to anyone considering complex AWR at Columbia in light of the numerous breaches of trust and heartbreaking response one patient and his wife experienced there). But also anywhere for that matter, because others may benefit from understanding all the things that can go wrong in AWR or surgery in general – even to the most prepared and well-informed.
More than anything, the program seeks to be a rallying cry for other patients to rise up together. With a $50,000 innovation campaign being initiated from the limited resources we have remaining, as well as launching a foundation for others harmed similarly by surgical injury or left fending for themselves through no fault of their own called: The Left Behind Foundation. More info is within the program, but it’s important to note that much of the impetus for this was inspired by this particular community and the stories we’ve seen amongst you all as well.
Patients Rising – The Left Behind Foundation:
We believe that all things are possible if good people on both sides stay committed to integrity and ushering forth real change. But it’s high time that patients rise up louder and hold surgeons more accountable to the words and tenets they purport to practice by – and most importantly to the complications and injured Patients that too many are leaving behind.
youtu.be
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Apologies in the body of the previous post – the formatting was wonky and should read “7 Key Considerations”
Also, we did not intend to put our mugs all over the page, the YouTube link just added it that way. Not intending to commandeer attention from all the others on the forum or Dr. Towfigh’s good work.
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Hi everyone, we have posted a new update and response from other patients, partners, nurses, and doctors alike below – as well as some commentary on the more troubling response that has unfortunately come along with this patient rallying cry. We however proceed forth with truth and earnestness to keep standing up and working towards positive solutions.
One important part of our campaign is to cull from others difficult journeys and serve forth some thoughts for other patients to learn from and hopefully for the community of providers to improve upon. Especially since our difficulties resulted from many components of avoidable error and serious fractures in the shared decision-making and consent process. We believe these learnings hold true for anyone facing surgery or for those navigating unexpected complications and struggling to find overdue help. So we are building a checklist of <u style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>7 Key Considerations<b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”> from our experience as we aim to build another mechanism to help anyone moving forth with elective surgery. We have already heard from others that these recommendations have been quite helpful in the selection of their own surgeon and we’ll be rolling more out over the coming days.
1.) Choosing Your Surgeon. Thankfully, there are many gifted surgeons across our globe and the majority of surgeries go well each and every day. However, the data is also clear that many still do not and in ratios that are too high in many specialties for the patient to take for granted. As our program highlights, complications occur even in the best of hands and this is widely acknowledged by the societies and many publications summarizing these realities in surgical outcomes. While we as patients in the digital age naturally invest a lot of time thinking about needing “the best” or proceeding with someone with prominent name recognition in a certain procedure etc… Our experience really cemented this key component of what we now believe to be foundational and top of the list:
Our advice: In choosing your surgeon take strong consideration on whether or not you feel this person will be by your side if things do not go the way you had planned. Everyone has great feedback and accolade when things go well – that’s the easy part. Our mindset has evolved with a new belief that it is the true hallmark of a great surgeon when they are someone that is genuinely there for you when things go wrong. So ask yourself: Is this person someone who will be there if something goes awry irregardless of reason? Is this someone that is comfortable admitting that not everything goes perfectly… and if it doesn’t go well, do they have a plan for you or will they work to find one? Is this someone that is comfortable citing instances where their outcomes on certain cases went poorly but in response they doubled-down and committed to seeing their patient through to improvement? Are they comfortable citing instances of their own like these or even possibly providing you a patient reference of such? We all do this for our babysitters and home renovation resources for heavens sakes – we sure as heck should be doing the same for any procedure invading our bodies and altering our anatomy for life.
Patients tend to be intimidated by the disparate power dynamic that is inherent in these exchanges. Your surgeon doesn’t have to be your friend – most are over-burdened having to see too many patients these days to be in that camp (the system is breaking their backs in this regard) but they sure as heck should be someone that is there for you if things do not go well. We as patients also collectively need to be more proactive in championing those doctors and surgeons that routinely display this essential trait.
The Left Behind Foundation is aiming to build better connection for those needing more resource to those with hands that reach out as much as they reach in. Thank you.
Our Journey – Update #1
Patients Rising – The Left Behind (Trailer and Full Program
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An update to this important story from me as the patient directly affected – and aside from the foundation as my lovely wife is particularly distressed by recent events since our efforts to shine brighter light on this medical error, and help others struggling with surgical complications whom have been left behind.
Thank you to everyone who has watched this important program and offered an extraordinary amount of positive feedback and support. To answer a few questions. Yes, we shared the program and numerous instances of error, dangerous false records, and most of all… the many broken promises/fractured care we experienced as presented. We shared with leadership and other representatives of New York Presbyterian/Columbia and Weill Cornell both prior to and throughout the recent Hernia Summit in Park City, as well as in many other previous instances over years of equally troubling events spanning this difficult journey.
One of the surgeons in this particular chapter continues to reach out with empathy and desire to help – believing like others that the most challenging aspects are originating at the deeper layers and knowing a viable solution may not exist, he still expresses desire to put ideas forth. But sadly, another continues to break promises and bully, whom instead of tapping into the vast network of peers he has for patient care and novel solutions, chose instead to present that sphere of influence in terms of further grandiose numbers of intimidation and threat.
While I’ve had some nice discussions with some in positions of power, the institution continues to show no concern whatsoever and the same ongoing contempt for inaccurate records and compounding error that leads to these avoidable events. And yet as of yesterday quiet unbelievably – THE WRONG PATIENT RADIOLOGY (of the entirely wrong gender) used for important reference in my very problematic AWR is still wrongly associated to me after more than 5 years and 30 efforts to correct, and even after a program as powerful as this one had to be made to document this issue amongst the many others revealed.
Danielle is particularly shaken by the level of cruelty and disregard that continues – especially when the purported hand of help keeps creating or inferring more harm – but she and I have agreed to not be deterred. To the contrary, we are going to shout out louder until better angels rise. We have proceeded with every part of our story anchored in truth. The goal is to collectively gather the many stories like ours existing in forums like these and even on the slides of the societies themselves, and hold surgeons more accountable to the complications and the patients many are leaving behind.
We are going to be sharing updates and more chapters to this story and campaign for change shortly.
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The lack of response from leadership speaks volumes to how these serious errors and avoidable complications continue to occur. You were failed at nearly every touchpoint at Columbia/New York Presbyterian. The silence is deafening at this point and will not age well when more people become aware of your program. I wonder how Chairman Smith will reconcile this story as he speaks at Dr. Novitsky’s hernia summit this week on error and accountability. Especially when that abdominal wall team failed you on so many levels.
Subscribed, watching, and sharing.
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Hi all – just an update that we are happy to share that this important program is already receiving great notice with over 200 views across two platforms the past 48hrs. While those numbers may appear small by influencer standards they are significant given the specificity of the audience and seriousness of the content. We are especially appreciative of all the traction coming from this community as we are hearing from others affected by these serious problems in abdominal wall/hernia surgery, but also from the partners, caregivers, and other industry personnel seeing these all too common failures occurring as the program reveals is broadly known by the societies themselves. We are also aware of other doctors adjacent becoming more informed of these matters which is the only way needed change can occur.
But to answer a few questions raised and more on the $50,000 monetary campaign we are pushing forth below. As the program summarizes the goals are multifold:
1.) We aim to raise a louder patient voice for those left harmed or still fending for care with complications their surgeon has either left unresolved, disregarded or that others have determined to be incredibly challenging to correct. Even in instances known by many we’ve seen on this forum and others that have been left suffering with issues defined as uncorrectable or too dangerous to address.
2.) We plan to organize, raise widespread attention, and present select cases while being adjacent the societal meetings with the “Faces and Cases” of the far too many patients whom surgeons are leaving behind.
3.) We are going to do our damndest to call attention to the abandonment, ghosting, gaslighting and other disconcerting responses that should have no place in medical care – and are going to do so by shining a bright light and documentary to instances where they are senselessly occurring as this presentation reveals is happening even in “expert hands.” But also by celebrating those doctors trying to bring about change by continuing to help those in challenging circumstances and whom are trying to hold their peers to their better tenets and oaths.
Finally, the $50,000 innovation campaign is put forth to spread the word and hope for solutions to patients left rendered in states of extreme tension, constriction, etc… resulting from over correction or procedures done too aggressively as the program intricately summarizes. As unfortunate as it may be, sometimes the only way to really move the needle with a busy field of doctors is to put some additional resources for collaborative thinking and inspirational focus. We have many ideas for those wishing to solve issues, not run from them. So please let any doctor you feel feel may want to help or even contribute new thinking know about this effort. We need everyone to work together on both sides, but we as patients need to be far better organized and united in cause.
<font face=”inherit”>We will </font>have<font face=”inherit”> more in the coming days. </font><font face=”inherit”>We are happy to report that many have already said that anyone who has had a surgery go awry, or is considering </font>abdominal<font face=”inherit”> wall/hernia surgery in general </font>could<font face=”inherit”> </font>truly benefit<font face=”inherit”> from this program is what fuels our </font>beliefs<font face=”inherit”> that all things are possible if good people stay committed to change. </font>
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As a person affected by this I think this is an excellent presentation and I’m all in to help this cause and sharing the story.
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An update to this important story from me as the patient directly affected – and aside from the foundation as my lovely wife is particularly distressed by recent events since our efforts to shine brighter light on this medical error, and help others struggling with surgical complications whom have been left behind.
Thank you to everyone who has watched this important program and offered an extraordinary amount of positive feedback and support. To answer a few questions. Yes, we shared the program and numerous instances of error, dangerous false records, and most of all… the many broken promises/fractured care we experienced as presented. We shared with leadership and other representatives of New York Presbyterian/Columbia and Weill Cornell both prior to and throughout the recent Hernia Summit in Park City, as well as in many other previous instances over years of equally troubling events spanning this difficult journey.
One of the surgeons in this particular chapter continues to reach out with empathy and desire to help – believing like others that the most challenging aspects are originating at the deeper layers and knowing a viable solution may not exist, he still expresses desire to put ideas forth. But sadly, another continues to break promises and bully, whom instead of tapping into the vast network of peers he has for patient care and novel solutions, chose instead to present that sphere of influence in terms of further grandiose numbers of intimidation and threat.
While I’ve had some nice discussions with some in positions of power, the institution continues to show no concern whatsoever and the same ongoing contempt for inaccurate records and compounding error that leads to these avoidable events. And yet as of yesterday quiet unbelievably – THE WRONG PATIENT RADIOLOGY (of the entirely wrong gender) used for important reference in my very problematic AWR is still wrongly associated to me after more than 5 years and 30 efforts to correct, and even after a program as powerful as this one had to be made to document this issue amongst the many others revealed.
Danielle is particularly shaken by the level of cruelty and disregard that continues – especially when the purported hand of help keeps creating or inferring more harm – but she and I have agreed to not be deterred. To the contrary, we are going to shout out louder until better angels rise. We have proceeded with every part of our story anchored in truth. The goal is to collectively gather the many stories like ours existing in forums like these and even on the slides of the societies themselves, and hold surgeons more accountable to the complications and the patients many are leaving behind.
We are going to be sharing updates and more chapters to this story and campaign for change shortly.
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