Completely divergent opinions. How is this possible in this day and age?
06/25/2021 at 5:21 pm #29461dh305Participant
I am about two years removed from a bilateral inguinal hernia surgery done laparoscopically with mesh
Discomfort is minor, but is there.
I recently got a CT scan and a mesh removal “expert“ told me that he sees two recurrent hernia‘s and some mesh folding
The radiologist makes no mention of it. Saw no reoccurrence.
I sent the disk to the surgeon who performed the operation for me, and he likewise saw no recurrence.
I then consulted with a hernia expert in my area and he went through the disk with me in his office and said the mesh placement looked fine, was laying flat where it should be and there is no reoccurrence. He even did a thorough physical exam on me and found no reoccurrence
How on earth does the first doctor come up with this diagnosis when all of the other physicians see nothing? And one is supposed to go in for an invasive mesh removal surgery just on an educated guess? This seems crazy to me
06/25/2021 at 8:02 pm #29462ajm222Participant
It’s indeed hard to fathom. Who is the “expert?” Feel free to PM me.
06/26/2021 at 5:28 am #29463
You’re in for a ride honestly – half of these doctors don’t look at the images they just take the word of the non-specialized radiologist that does your initial scan/assessment (in my 4 years of dealing with groin injury). Who cares about double-checking and making sure they didn’t miss anything am I right?
Dealing with an injury has opened my eyes to how there is no law, no methodology, no nothing. Everyone is doing their own thing, the effort in treatment you get depends on if they can brag about you (as in your social status), and so on and there is little to no regard for your long-term well-being.
I agree with you its not normal that in 2021 so many ”specialized” doctors are doing their own thing and end up with the wrong or poor diagnosis and end up messing patients up with experimental hypothetical procedures that don’t even make sense and its because there are no repercussions, no body of regulation to watch & make sure that it doesn’t happen. There are no rules.
Be very careful and do your own research – nobody cares more about you than you not even the people paid thousands to care – they mostly don’t. You’re one terrible doctor/procedure away from being maimed & having to live with permanent dysfunction for the rest of your life and its totally avoidable. I know its frustrating & I’m rooting for you I hope you find someone decent who cares to help you. Little piece of advice – if any of them start suggesting early on that its a nerve issue – run and never go back. Don’t ever let a doctor do anything to your nerves – no matter the discomfort or pain. Its the lazy physician’s solution to everything because its so much easier to cut a nerve & undersell the permanent consequences of it than it is to actually troubleshoot what is dysfunctional and how to fix it with as little damage to your anatomy as possible.
Be very careful
06/26/2021 at 8:23 pm #29468HerniahelperParticipant
When it comes to subtleties on imaging, things are a bit like reading tea leaves. Even among radiologists they will all have different impressions. Depending on their experience one doctor may be able to convince another. And even if there’s a consensus that doesn’t mean that’s what you’re going to find interoperatively.
I think the imaging only really helps if there is something grossly abnormal.
As much as people with minor symptoms who are on the fence about revisional surgery would like to rely on imaging as the tiebreaker… In cases like this I don’t think you are going to get a reliable answer. If you feel that you want more information you could request to have an MRI with bare down views.
However I think what is going to guide your decision the most is how disabling are your symptoms, have you exhausted all the other options, and have you given it enough time to be sure it won’t work itself out.
The possibility of creating a new problem is real. You have to be relatively certain that you wouldn’t want to continue living the way that you are.
That may sound harsh but the forums are brimbing with people who have chronic pain after hernia repair and we know that there are many surgeons revising them. But I don’t see many success stories being discussed. Giving the number of people complaining, you would think they would be eager to share the successes of their cure. Outcomes are very mixed.
I think we would all really like to hear from people who had a good outcome. I really wish more people would post their experiences.
06/27/2021 at 7:50 am #29471
@herniahelper but do you not think that the reason there are not more people coming out to share their positive experiences is because there are almost no people with positive experiences? At what point does it click? Its the equivalent of crazy anti-vaxxers saying ”its funny how the virus only affects those that didn’t get vaccinated” – hello?
I agree with you that imaging is not as straight forward as it may seem and it explains why a doctor can sometimes miss something. But there’s also a very real, very tangible problem with doctors in this space altogether. I had 2 surgeons in two different countries that both work for an NHL team gravely misdiagnose me, perform incredibly harmful procedures on me that they undersold with made up success % & procedures. And the latest doctor I’ve consulted actually sees on my first scan (4 years ago) what my original injury was and how neither of the procedures I got were necessary and worst – I was told that I was effectively injured by doctor (as in a doctor permanently injured me).
How is this possible in 2021? We’re able to transplant a whole face. I have a friend who had a motorcycle crash & has around 15 scars on his body & everything works as it should, no issues. I know someone who gave an entire organ & is completely functional aside from having a scar, no disfiguration, no chronic pain, nothing.
Yet in this hernia/groin space – the web is full of horror stories from doctors who do these horrible, invasive procedures where they cut into you like play dough & then block your calls when you obviously become disabled afterwards.
If you brought your car in to the garage for a weird noise or perhaps wheels alignment and they gave you back your car and suddenly it barely stars, can’t shift gears, a window is broken, it stops every 100meters, and smoke is coming out of it (none of which was happening prior) – would that be acceptable? Then how come it is acceptable in this space? Is it really that hard to have a consensus on a basic set of rules of dos/donts to keep patients safe? so that at worst – you didnt fix their problem but at least you didnt make them worse?
Just some food for thought. If there are not ”more people coming out to share their good experiences” its because there are no people with good experiences. How do you know how to pick a restaurant – you see good reviews. People go out of their way when something or someone did something right and helped them – its not just people who had a bad experience that leave reviews in any other business/industry. Its no different here. If there were people with good experiences & they were common occurrence – we would know about it. we would hear about them. These doctors wouldnt need to try and lie & sell you their b.s to make a buck off liberally cutting into people – people would come to them and would feel safe that they’re getting the help they needed.
06/27/2021 at 9:46 am #29472Good intentionsParticipant
I had a good explantation experience, from Dr. Billing in Kirkland, Washington. But it has taken about 3 1/2 years to finally get to the point where I don’t consider how the surgery site will be affected by my planned activities for the day. It’s been a very slow process, with many points along the way where I thought progres was done. Much waiting for things to settle down before trying to expand the envelope of possible activities again.
The great shame of all of this is that the surgeons who try to help fix the problem that the original mesh implantation created end up, in some cases, taking the blame for the original problem – the mesh implantation. The problem is the mesh. All of the data shows it, the more that is collected the clearer the picture becomes. Mesh implantation is damaging a significant number of people. The root cause is the mesh, not the removal.
- This reply was modified 2 years, 3 months ago by Good intentions.
06/27/2021 at 5:23 pm #29476
Yes and no, in most cases the problem is indeed the mesh. But the response some of these surgeons have or their methods are a recipe for disaster. Nerves become their bread & butter to explain everything. But theres actually very few real cases where a nerve needs to be tended to. They think a nerve block is an appropriate diagnostic tool to tell if the nerve is the problem – which it isn’t. Pain signals are transmitted through nerves throughout our bodies. If the mesh is causing the pain, and a doctor injects a nerve-block – of course the patient will have relief. That doesn’t mean take the nerve out – thats like having a check engine light go up in your car & once you bring the car to the garage, instead of finding out whats causing the check engine light to be on and fixing it, they remove the check-engine light altogether from the car & give you the car back and expect it to be okay. Its not okay its just they removed the signal telling you that its not okay.
Similarly it doesn’t excuse that what a lot of these doctors are doing is just bad. I’m in a position where I’ve never had a hernia in my life but I’ve had a ”bilateral” sports hernia repair done by Dr. Brown and whats interesting is I have one side that never had a previous surgery only slight symptoms & one side with a previous non-traditional mesh that had no tissue grow on it but nevertheless, a side with previous surgery & foreign body so I can actually compare the outcome. And both sides are equally terrible, damaged, 10x more painful than before I went to Dr. Brown and I have more than 10 new permanent issues that I’ve never had a day in my life as a professional dancer. He literally ruined my life. And he wants to hide behind the fact that ”it must be because I had a mesh” which is just cowardly because I had no previous surgery on my left groin and theyre both equally destroyed/mangled since his procedure. Every doctor I’ve consulted since has looked at me with horror & pity in their eyes saying I’m so young yet I’ll have to live the rest of my life with permanent chronic pain & weaknesses as a direct result of his procedure.
Yet somehow – he is allowed to do this & continue to do this freely. 2021. No regulatory body. Because its such a niche thing. I had one very well known surgeon tell me that Dr. Brown is heavily talked about in medical academic circles but not for the right reasons & that I’m not the first person he’s seen that ended like this. But if you ask Dr Brown, my entire outcome and the 2 years I just spent barely being able to walk or function is because of a surface mesh that was under my skin & that came out as clean as they come.
So you see how the mesh thing became some doctor’s excuse for a lack of thoroughness & positive outcomes? Its so easy to blame the mesh rather than your shitty made up procedure that hurts every patient you touch.
06/28/2021 at 12:53 pm #29483
06/27/2021 at 5:35 pm #29477
I tried to edit to add to my reply to good intentions above this but what I’m trying to say is – there is a severe lack of guidelines – of methodology. Yes its not all black & white its a hard area to diagnose. But there are things that clearly are dangerous & damaging for patients that are still being done out of pure lazyness and/or lack of willingness from doctors to actually thoroughly diagnose patients with issues properly. They want to move through patients as quickly as possible rather than rule out every possible cause & try as much as possible to pinpoint the problem. And I agree with OP that in 2021 there shouldn’t be such a range in opinions & treatments for this. Something needs to change.
06/27/2021 at 5:57 pm #29478dh305Participant
Thanks for all of your contributions to this thread. I guess it touched a nerve (no pun intended)
Basically I am at the point where if I am not too active, I feel almost perfect. It only is with excessive activity and being on my feet that I end up getting sore. That always goes away with rest. Going to gym, etc seems to be ok at this point
I’m not doing any type of removal unless the doctor is 1000% sure. Obviously, that looks like it’s not happening!
06/28/2021 at 2:17 am #29479AlephyParticipant
I thought I would chime in, as I have some experience on the divergent opinions of doctors:)
What moves somebody to become a doctor? I think only a minority is doing it for ethical reasons…why did Dr. House become a doctor?:) incidentally, I would never let him look at me, as if it goes well all is fine, while if it goes bad you are most definitely on your own! I was once told by a medical student I knew that to be a doctor requires a good dose of callousness, and I guess you see this around…
It has been commented here on why a doctor in a hospital would go private and open their own practice: when this happens though business considerations also kick in i.e. it is their job, whether they are good or bad at it (and it is always easy to blame an external factor for their failure)
Unfortunately Hernias are in the tiny spot where there are lots of them, the system wants to pay as little as possible, they are for the most part not life threatening, and the area is small and with lots of structure around that is essential in many different ways (it is clock work): if you removed any of these components things would be immediately better…so I don’t think comparing hernias to other (more successful?) procedures is necessarily correct.
I wonder why we don’t see centres with a guaranteed followup up to x years, clearly written communication guidelines, as well as guidelines when problems arise: as an example, if chronic pain occurs, the center could offer expertise without extra charging, or contact an expert on behalf of the patient, agree to remain at disposal for any questions until the problem is resolved, agree following up with extra diagnosis prescriptions (mri etc). These days one center is focused on this aspect, another on that one, and if you have a hard situation that requires different expertise you are bounced back and forth.
And of course (and in Europe we are getting there I think) a centralised secure database for medical information, so that at least one doesn’t have to wait to receive the documents from doctor A, in roder to discuss the case with doctor B… (I was hit and annoyed by this in Switzerland!)
ps: Personally I would also make independent medical researchers (preferably public employees) run surveys, follow ups, and assessments of best practices/materials etc. Many research articles are biased by conflict of interests, and often the methodologies used are also dubious.
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