Replies – Forums – patientsrising

Forum Replies Created

patientsrising

Member
March 4, 2025 at 5:05 pm in reply to: Patients Response – to the AHS – The Left Behind

Thanks to all for the support. We remain determined and focused on sharing the key learnings from our experience to help others, staying positive that activated patients can indeed bring change, and not lose hope for future solutions as we somehow have just passed the 6-year mark of this far too long journey. We have heard from more patient voices and healthcare providers, and are hoping to achieve better momentum on some of the innovation efforts that are needed next. We’ve just begun inquiries into learning more about what is being advanced within some of the tissue engineering companies, as some have have mentioned they believe this lane will come to hold much promise.

After hearing from other patient stories recently we’ve begun to notice a reoccurring theme with one crucial area that is clearly in need of improvement and contributing to a lot of unnecessary surprises and unfortunate outcomes. And that is the topic of Consent, and the way it is being treated by both sides of the fence. Hence our 2 cents on this Key Takeaway.

We have learned there is nothing more essential than knowing that promises made are going to be promises kept – absent any medical emergency of course – and being confident that what is going to be ventured for interventions of these magnitudes and complexities are going to be followed as discussed in the patient-physician dialogue. A patient needs to know they have the ability to protect the sovereignty over their own body and the crucial decision-making for procedures that can alter your body for life both good an bad. Yet for many patients, these crucial agreements or moments are often synthesized as just another layer of confusion or bureaucratic paperwork in the mountain of such that all parties have to navigate under our current healthcare system. The nerve-wracking nature of surrendering control of yourself to another under pressure-intense scenarios likely only adds to the challenge, and we know many patients feel rushed and apprehensive to do anything other than trust, sign and proceed. We all hear the stories… 

Importantly, all discussions of consent in elective procedures should include communication about potential complications, risks, alternatives, and a clear understanding of what is going to occur in your procedure. We have unfortunately been through too many of these circumstances to know this doesn’t always occur, or undesirable changes happen without warning. While it probably isn’t something that is needed to be said to many of the informed patients that frequent this particular forum, to any whom are relatively new or wanting to hear from others experiences – we would re-emphasize how critical this is and how necessary more systemic change is needed to enforce better compliance. Because if the discussion on the complex procedure you are signing off on occurs quicker than the time you’d put into the consideration of a dishwasher purchase or extended warranty on similar appliance, then something may be askew. We are building ideas of how to build better advocacy with other governing bodies in this regard as well, more to come… Let’s stay positive to making change.
patientsrising

Member
February 19, 2025 at 9:27 pm in reply to: Patients Response – to the AHS – The Left Behind

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.
patientsrising

Member
February 19, 2025 at 8:13 pm in reply to: Patients Response – to the AHS – The Left Behind

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 7 Key Considerations 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

https://youtu.be/sCgkozh_0dE

Patients Rising – The Left Behind (Trailer and Full Program

https://youtu.be/FPviry-0AdQ
patientsrising

Member
February 8, 2025 at 11:25 am in reply to: Patients Response – to the AHS – The Left Behind

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.

We will have more in the coming days. We are happy to report that many have already said that anyone who has had a surgery go awry, or is considering abdominal wall/hernia surgery in general could truly benefit from this program is what fuels our beliefs that all things are possible if good people stay committed to change.