[Dudley]

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.

[Dudley]

Fair enough. It doesn’t surprise me that he may be of the ilk that leans more into the ‘mesh is a vital tool camp’ than some of the other tissue only/mesh aversion types. (And believe me, I wrestle with a similar concern of the material for a looming AWR reop, so I have significant appreciation for your desire to make your first foray tissue based if possible and certainly can see the validity in that preference. I will just say that I’ve seen a lot of these top name surgeons in the space, and many were more willing than you might think upon first blush to offer a couple of paths. Certainly with a strong preference and “if it were me” often in the recommendation, but not always as cemented to one particular path only. Just food for thought that might be worth the co-pay for a consult was all I was thinking.

[Dudley]

Just a quick comment to the above. I’m not so sure that you can completely infer that Dr. Orenstein would insist on mesh – at least to the degree that it might not be worth the effort to at least go for a consult to be sure of that assumption. He is a very well-regarded Hernia surgeon, and in many past societal gatherings has been a leading resource lecturing on all the different types of mesh’s available and various pros and cons etc. He frequently does the same when addressing different types of hernia’s and atypical presentations. While I do know there are various camps that lean a bit more heavily one way or the other in terms of mesh aversion or the belief it is necessary in most cases…I’m not so sure that we can be sure anyone is as firmly planted in every situation, or that a good surgeon might not be more amenable to offering a couple of options for each individuals particular case. I’ve met with a number of the top experts out there for a unique abdominal wall situation, and have found that while many are very vocal about the recommendation as they see best, many are still open to including the patient in the decision-making process about the various options with and without. Again, not speaking from experience with Dr. Orenstein but it might not hurt to have the discussion before you rule it out. That team there is known to be pretty sharp and specialized.

[Dudley]

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.