Reply To: Researching surgeons – what questions to ask

[ajm222]

quote Jnomesh:

Yes by all means don’t rush into anything-surgery should be a last resort and you should have a definitive reason for the surgery. I know of at least 3 people who had no symptoms and it was debatable whether small hernias showed up on scans. They were encouraged by their surgeons to have them repaired laparoscopically with mesh. All three suffered serious complications from the mesh (2 had allergic reactions that led to not only pain but other severe auto immune symptoms)
all three ended up having mesh removal and although all three are overall better since having the mesh removed they all still have some issues that mesh originally caused. They all say they wish they just waited Bc they all had small hernias ( or maybe not) and they didn’t have any problems.
again my advice is to skip the aberahebfemeral surgeon or even specialist and get and send your scans to someone who can definitely interpret what’s going on. The only two I know of are dr. Towfigh and dr. Belyanski. There was another thread of someone experience pain and dr. Belyanski diagnosed that it was a lipoma and not a hernia (still needed surgery) but that person was in pain.

Unfortunately I don’t really have any images at this point. I’ve just been examined physically by all the doctors. Perhaps if I do see this last general surgeon next week I can inquire about possibly getting some imaging, though I suspect he will say it’s unnecessary. I can’t say I have any pain, but just some occasional discomfort, and a small bump that gets a little bigger or smaller depending upon the time of day and activity. PCP thought the bump was related to the weakened area of the abdominal wall, but didn’t feel like anything had broken through yet I guess you would say. And I had read on the California Hernia Specialists website that up to 50% of small hernias may never progress or need surgery. I don’t know if this means they stay at a stage where they don’t fully come through the fascia, or if it means they just don’t get larger. I’m only 41 and I am suspecting that over time if I continue to be normally active, that eventually this is going to need attention. But I don’t really know for sure. I also need to get back to exercising and moving around normally again so that I can really gauge my pain and discomfort. Ever since the diagnosis by the surgeon I’ve been extremely cautious and scared to do anything for fear of making this worse quickly. So I don’t really know, but I think I’ve decided to cancel my 10/18 surgery because it feels premature. All have said that there is no serious danger in waiting. I don’t want to wait too long if I do end up needing it repaired, but another month or three should be fine.

Our of curiousity, are the three people you said you know with complications people that you know personally, or those who you’ve met online at similar forums? Just trying to get a sense of what kind of demographic we’re looking at here. I hear from someone like Dr Kang who almost makes it sound like all mesh hernia repairs may be doing damage inside the body but some just aren’t bothered by it, while most surgeons will suggest the rate of complications and truly chronic pain is probably only around 3% after a year or so from surgery (which is very small). It just makes it so hard for a person to decide what to do (not that there are many options – it’s mostly either live with a steadily worsening hernia or get a mesh repair, which may or may not be a bad thing). And I wonder if the description Dr Kang had about what the mesh is doing inside the body actually explains why the mesh is doing good rather than bad in many cases. You would think the whole point of the mesh is to actually get very incorporated into the surrounding tissue. While that could be bad for some people if it irritates or damages important structures like the bowels or spermatic cord or various nerves, you would certainly expect the mesh to be very much intertwined with things around it to strengthen the area and feel more natural. This of course is the challenge a patient has in making medical decisions – very little intimate knowledge of the anatomy and actually seeing all of these things in person, no medical training, and relying on a variety of different opinions from medical professionals.

The challenge for the average person when researching things online I suppose is that we don’t have the medical training or in most cases the scientific background to examine things critically in the same the way doctors do, and we don’t really have access to a lot of the medical papers and studies that many doctors use. We also mostly have to rely on corners of the internet where people are concentrated into groups that are probably overrepresented by 1. people who have had bad experiences or 2. those like myself who have a tendency to maybe over analyze things. To be fair, the latter category isn’t necessarily always a bad thing, because clearly people like myself will tend to ask important questions and spur discussion that didn’t occur to the average person and could be useful to people contemplating surgery. And those in the first category are certainly not to be dismissed. Anyone who has had complications or some kind of bad experience should be taken very seriously. But the point I guess is that the high concentration of bad experiences you see online gives the perception that MOST people have bad experiences, and this this surgery and the use of mesh is usually a bad idea. While that is DEFINITELY the case with those who have chronic pain, it’s not determinate of anyone else’s result.

Anyway, just rambling at this point I guess. I think at this point my main concern is this notion that Dr Kang mentioned suggesting mesh is often doing harm inside the body. I’d be interested to know if I misinterpreted his words, and maybe more detail about what exactly it’s doing in the body that is so concerning. I get the impression that many surgeons have in fact done emergency mesh removal at one time or another and have seen what mesh does in the body over the course of months or years. Perhaps some of them could chime in.

Sorry to be so wordy. Just had a large coffee.