Just a thought…..
02/21/2020 at 8:13 am #21936AnonymousInactive
Just to put things in perspective, a lot of you say, and agree on, that the general consensus is that 10% to 15% of mesh operations can develop complications. Whilst I can see from what I’ve read, here and elsewhere,that this is indeed the case, let’s not forget then that 85% to 90%, in other words 85 to 90 people in every 100 cases do NOT have any problems with their hernia operation.
Just a thought when looking at the use of mesh from another viewpoint.
02/21/2020 at 9:32 am #21939
Well these numbers require a time window though….85% to 90% have no problems after 1 month,1 year,5 years…? Can a mesh cause problems after that? Can any doctor say that sax 80% of patients with a mesh will not have future problems with it?
02/21/2020 at 1:12 pm #21943
No one knows what the real complication/pain rate is regarding mesh surgeries.
And we will never know because there is no mesh registry. With no registry we don’t know the true rate of complications and for example which meshes have more problems or success risk other. It’s the big elephant in the room.
Let’s not also forget that if you came in this forum a couple of years ago or search the web the complication/pain rate with mesh was quoted at about 5% now we are seeing the 10-15% rate thrown around as time goes in and with the advances of the web and social media and forums dedicated to this matter.
I’ve already scene Studies and some surgeons quote 15-30% and so on.
And let’s also not forget that the majority of people who go back to their surgeons or other professionals about issues post mesh surgery or told “it’s not the mesh” for a lot of people they either give up or go into being passed off to many different medical specialists to explore the pain that they say isn’t due to the mesh.
And finally let’s please not minimize “mesh pain”.
This is a piece of plastic that is out in the abdomen that can really do damage and for many isn’t classical pain.
So even if 70, 80 or 90% of people do well with mesh surgery if you aren’t one of the lucky ones (and there are close to 1 million hernia surgeries done yearly so we are talking about 100,000-300,000 people out their with issues-no small number-so if you aren’t one of the lucky ones you can he left with life altering pain in which for many the only option is to have the mesh removed and there are only a handful of surgeons that can do this type of surgery-most patients have to travel to see them and pay out of pocket with no guarantees of being better.
To give you a example, I went back to my surgeon and others for 5 years with issues only to be told no hernia recurrence can’t be the mesh.
After 5 years the pain got so bad it changed my life.
Again surgeons and radiology said all was well with the mesh.
Thankfully found a FB mesh forum and had to do my own research. Found a surgeon who saw on the same exact images that all other surgeons said was fine that the mesh had folded and shifted. During removal surgery it was so much worse: mesh balled up and rock hard, mesh in my bladder, mesh wrapped around my spermatic cord, mesh pressed up against my colon and mesh on my illiac vein and artery.
So yes many people seem to do well with mesh but many don’t and although we don’t know the exact figure it seems to be growing.
The take away is if you aren’t one who is doing fine (for now ) the complications can be horrible bc there is a plastic device inside you doing who knows what.
02/21/2020 at 1:55 pm #21945Momof4Participant
Just wanted to chime in since I’m one of the 10-15% (I think that number may truly be higher). I guess the reason that number seems so large to those of us suffering is because when there is a complication it is a life changing, a lot of times debilitating, complication. I’m hoping moving forward there are things that can be done to make that number as small as possible because I hate for anyone to go through Mesh hell! Doctors like Dr. Towfigh and a few colleagues are working to reduce the number of complications and mesh reactions that aren’t as rare as once thought!
02/22/2020 at 2:57 am #21949
The one problem I have with the mesh fallout is that there are still many doctors who would not hesitate to tell you right in your face that there are no complications with mesh or that the percentage is very small ie 1% or 2%, that it is inert etc etc…this behavior still shocks me! I spoke to few doctors and this is my experience…
02/22/2020 at 12:57 pm #21957
Totally right Alephy! They are probably the same ones that brush off their patients complaints when people come back complaining of pain, symptoms and complications.9
02/22/2020 at 2:12 pm #21959ColtParticipant
I know when I went for my first check up the doctor sent in one of his underling
Students, to show me a piece of the mesh they use it look like it had hooks
On the end of it not 1 hook but multiple hooks looked like the same type thing u would hang a picture frame on your wall
To hold it
My words to him is it pretty safe , he said it’s pretty chemically inert
He didn’t say it was 100 percent safe and didn’t say it was 100 percent chemically inert, that’s when my blood pressure went up
On my next visit to the surgeon I asked him if he could a no mesh repair he said he could but wouldn’t feel comfortable, he is about 38 years olds
This sent me in a tailspin of delaying surgery going on 60 days
I like thought of mesh in some ways and in lots of ways I don’t
I was told by 1 surgeon all the suturing that takes place in shouldice can lead
To chronic pain in 2-3 percent of cases
but mesh isn’t chronic free pain either
So I twist and turn trying to decide
02/22/2020 at 2:25 pm #21961Good intentionsParticipant
The material was probably ProGrip. You can search the site for ProGrip stories.
Non-mesh procedures are not taught anymore in the schools or residencies. The hernia repair field is controlled by mesh. Only a few surgeons have taken the initiative to learn and apply non-mesh techniques.
02/22/2020 at 6:31 pm #21962
This is the problem patients find themselves in: lack of choice lack of viable options.
Mesh rules the industry.
If a surgeon says he could do a non mesh repair but doesn’t feel comfortable or quotes a super high recurrence rate it means he or she doesn’t do them regularly it at all but may know how to do them from a text book standpoint and it’s time to say no thank you.
And although there is a chance of chronic pain with a non mesh repair I can tell you from first hand experience that pain caused by mesh is line nothing I ever experienced before. It was almost alien in nature and when you think about it it was alien-it’s a foreign material in your body. So I try and tell people it’s just not classic human body pain (which dot get me wrong sucks ) but it can be unimaginable pain.
02/23/2020 at 7:44 pm #21973CasimirParticipant
This entire industry is like nothing I’ve ever seen. It’s like from another planet. It needs to be changed. Complaining WILL NOT get it done. I totally get the complaining but it WILL NOT get it done.
Legislation is needed.
That fact that people need to educate themselves in order to know if they are being told the reality of a life changing decision they are being asked to make is beyond shameful and beyond belief.
We know a percentage will witnesses destruction of
Their family’s life
Their everything else
And a percentage will suffer something less.
And percentage will be ok.
It is not acceptable to not have a handle on this. People need to go into this with full knowledge of risks, and the options other than just what the mesh folks want to talk about, and the provider of the service needs to provide that information.
There should be studies to determine complication rates – but for now call it 15% until it’s proven to be less. There needs to be a required standardized procedure for informed consent with massive teeth for those who don’t comply with the law. It can be as simple as here’s an approved standardized sheet with the facts, the dr goes over it with you, and you both sign that it was discussed. Massive. Teeth. For. Failure. To. Do. So. Would just take 5 minutes. With watchful waiting always described. The good surgeons will benefit as the others are weeded out.
This is just unreal. It has to change. I am really motivated to advocate for this.
02/24/2020 at 6:28 am #21976
The problem is you are against the health insurance system coupled with the maximal profit tenet of the medical industry: the first want a low cost quick and simple procedure for the massive volume of hernia surgeries while the medical industry wants to make money. The little science that squeezes in may take years before seeing the light. Apart from the different volumes it is not so different from the knee surgery industry: back in the 70s people with a meniscus tear were often sold the idea that the meniscus could be safely removed as they believed it did not play any functional role; they then realised how wrong this assumption was but all were into the new era of keyhole surgery that promised to shove an athlete back into actions in days after knee surgery. Then with passing years they started realising that a damaged meniscus was perhaps still better than a partial healthy one, and that physio therapy was just as good as surgery. I would also add that today’s expectation is that one can go back to full blown activity in a matter of few weeks: I suspect the reality is that hernia surgery is not trivial, that you won’t be back to your previous level before few months, that complications are a definite possibility, that you might have to pay serious money if you want to avoid the low cost health insurance driven procedure. As for the legally binding consensus in the US they have seen this for many years, and there have been even talks on the subject (on how to avoid law suits that is)….this is one interesting aspect of how a pure US specific trait (how medical care is provided in the US) might affect the rest of the world considering some of the big medical industry corporations are American. There will be eventually the latest brand new state-of-the art technology/device/technique /whatever you want that will come and replace the current situation, with new pros and cons with it (hopefully a lot more pros than cons) but I doubt this fight can be won or let alone fought based on purely moral grounds (you have my sympathy for thinking of trying though)…
ps: one would think the scientific method/approach would be solidly embedded in our thinking but it seems not so:(
02/24/2020 at 9:15 am #21979AnonymousInactive
One thing I’ve found on looking on this forum, is by how much more the USA regards litigation than the UK does. It’s as if the fact that during normal recovery, which can take several months, any pains or problems immediately propel themselves into a major issue which necessitates calling a lawyer.
I’m not saying that mesh problems don’t occur, far from it, but after any operation in the abdomen region it can take a long time to fully recover and miscellaneous twinges and bunting sensations are par for the course.
Remember these are just my thoughts, as were my original post, so please don’t vilify me as a non-believer or heretic.
And going back to my first comments, 8 or 9 out of ten will fully recover. Whether in years to come problems arise we just don’t know. All I know is from my own experience , of having my inguinal hernia repaired with mesh 3 months ago, I am still getting the odd twinge, but it IS getting better. And at least my hernia is no more so I can now lead a normal life.
02/24/2020 at 9:33 am #21980Good intentionsParticipant
You seem to be making the same, and very significant, error of conflating ALL mesh procedures as the same procedure. Even surgeons who work in the field know that this is a big problem. The best that you can do to reassure people about the use of mesh is to provide very explicit details of your procedure so that people can improve their odds of getting a good mesh repair. Without those details you’re just another person saying “I had ‘mesh’ and nothing bad happened. Don’t worry you’ll be fine”.
The details are what make the difference. Al the way down the surgeon who did your repair.
02/24/2020 at 9:46 am #21981
Again going back to the knee analogy, removing the damaged meniscus will make you pain free, until the remaining cartilage layer will wear out…after that you will be permanently in pain (this is what happened to many people in the past I think)…
I am not saying that a mesh surgery will certainly give you severe pain in the years to come, I am saying that we (and the doctors too) do not know for sure, as much as the doctors in the past ignored the significance of the meniscus. I agree that an abdominal surgery will give you pain for some time (and it would be nice if people were told the truth about it, instead of “you will go back to full sports activity in few weeks, no problem etc etc”), the point it may or may not give you pain in the years to come (again, why can’t they say it out loud in the open?)…
I also agree with Goodintentions about wanting the nitty gritty details (that’s where the devil lies, as always…)…
you know what? with enough info to match my conditions I would also not rule out a mesh, if one could make an aducated choice about it…(educated==enough information to weigh risks etc)
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