[JamesDoncaster]

Hi Eva. I haven’t had an experience exactly like your husband. However, many people on this forum have been through very bad situations and come out okay after some time.

In my case, I had a hernia repaired with mesh, which ended up causing immense pain. After 6 months I had it removed. And, now, another 6 months after the mesh was removed, I feel mostly normal.

In general, I think it takes a very long time to recovery from abdominal surgery. In my experience, things start to feel much better around 5-6 months. And then there is some more slow improvement over the net 5-6 months.

I think there is plenty of reason to believe that your husband will be much better off in a year’s time.

[JamesDoncaster]

Hi @peterc.

As I have in response to a few of your other posts, I would like to extend my sincerest condolences to you for what you went and continue to go through. I want to add that, I do not think you made a poor decision to go see Dr Brown. It sounds like you were already in a bad position and sought out a doctor who, rightly or wrongly, believed he could help.

The unfortunate truth is that, even if one seeks out the most skilled surgeon, and even if the surgeon does a textbook repair, the result can be bad. My first hernia repair was done by a highly respected surgeon. As far as I know, the procedure — a mesh-based repair — was carried out without any problems. And yet, I had pain immediately after waking up and that pain continued until I had the mesh removed 6 months later. I definitely went through periods of anger and despair, as it seems you are going through. And, like you, I feel strongly about warning others so they do not suffer the same consequences. In my case, I warn against the use of mesh.

As I have mentioned in my other posts, Dr Brown fixed a hernia on my left side (where I never had mesh) and I have had no problems with this. I actually very much wish I had seen him before I ever elected to have a mesh-based repair. I think I would have saved myself a lot of pain and suffering.

Anyway, I am rambling. My main points are
— the outcome of any medical procedure can be poor; this doesn’t necessarily mean that the surgeon messed up or that the patient made a bad decision
— you certainly have the right to be upset/angry about your situation and it makes sense if you want to warn others so they do not suffer the same fate (I have done likewise)
— my experience with Dr Brown was quite different from yours; I think he is an excellent choice if one is looking for a mesh-free hernia repair

[JamesDoncaster]

One thing I would like to point out is that, in the case of PeterC and Anonymous, the problems started with a mesh operation. I too had a mesh operation (prior to seeing Dr Brown). The mesh caused me quite a bit of pain and suffering and I eventually had it removed. So, FWIW, mesh seems to be the common element of our bad experiences.

I would like to add that I am a bit surprised to hear that Anonymous believed Dr Brown was pushing him to have mesh removed. My experience with Dr Brown was quite different. He actually suggested that I wait at least a year prior to having my mesh removed. I never once felt as though he was pushing me to get any sort of operation. Based on my interactions with him, I do believe that Dr Brown, like most surgeons, has his patients best interests in mind. But, of course, every surgery has risks. And, even a flawless operation can have bad results (as I know from my experience with mesh).

[JamesDoncaster]

@peterc First, I want to say that I am very very sorry to hear about your current situation. I do think it is important for patients to hear story’s like yours so that they can make educated decisions about their health.

I want to be clear that none of what I say in any way invalidates your experience. But, I had a very positive experience with Dr. Brown; he fixed an inguinal hernia I had on my left side and I had no problems with his repair at all. Futhermore, I found Dr. Brown to be the most caring surgeon I have ever encountered. He called me and spoke with me at length before I visited him in California. He offered to take me from the surgery center to my hotel after the operation because I was from out of town and had no relative there to help. And he followed up with me every day for at least a week after my operation.

I have spoken with at least two other patients that had experiences similar to mine.

As I previously mentioned @peterc, I am not trying to invalidate your experience at all. I’m just trying to provide other prospective patients with some additional information.

[JamesDoncaster]

@drtowfigh First, I want to say how much I appreciate the work you have done to create and run this forum. Having a place to discuss these issues is important for everybody.

One thing that I would like your thoughts on is the following: do you think there is a disconnect between what studies say about chronic pain and what patients are feeling?

The reason I ask is first, because of my own experience (one operation with mesh, another without) but also because of what I have heard from others. I had horrible pain for 6 months on hernia that had mesh (eventually resolved with mesh-removal) and zero complications on the hernia that had no mesh. Additionally, when I mentioned the pain I was having to others, I would very often hear “oh…my [insert relative or friend] has chronic pain from mesh as well.” I cannot think of a single person I have run accross who has complained of chronic pain from a non-mesh repair.

Now, it could be that, the reason I only hear about mesh-related pain is because mesh-based repairs are almost the only option offered in the USA. But, it is also entirely possible that the statistics and the data are not an accurate reflection of the reality patients feel. As @good-intentions mentioned, it is difficult to quantify “chronic pain” and document the severity of it.

Also, as surgeons that specialize exclusively in non-mesh hernia repairs tend to have better results (in terms of recurrence and pain) than surgeons who perform non-mesh repairs as one of many other things, perhaps the medical establishment should be looking towards having surgeons specialize just in repairing hernias (a kind of Shouldice model). This, to me, seems like a better path forward than constantly trying to find the “ideal mesh.”

• This reply was modified 4 years, 2 months ago by  JamesDoncaster.

[JamesDoncaster]

Based on anecdotal evidence from myself and the people I have encountered in person and online, I simply don’t understand how any legitimate medical study could conclude that chronic pain rates for mesh are similar to non-mesh operations. There seems to be a huge disconnect between what the vast majority of surgeon think and what patients experience.

[JamesDoncaster]

It would be very interesting to see a similar study that compares the rate and seriousness of chronic pain with mesh and non-mesh repairs.

[JamesDoncaster]

I can’t even begin to compute the total cost of my mesh-based hernia repair. In addition to the (1st) operation, there were a bevy of ultrasounds, MRIs, follow-up appointments, visits to pain-management clinics all to figure out the source of my pain (hint…in was the mesh). There was also the mesh-removal operation and the personal mental and physical cost to me to deal with chronic pain.

The total cost of my non-mesh hernia repair: one operation.

As a side note, I don’t understand why we are even using ultrasounds to identify hernias. A physical exam has a lower false positive and a lower false negative rate.

[JamesDoncaster]

@alephy

I agree that most published medical research is not terribly useful in practice. Partly, this is due to the difficulties involved in doing large-scale medical studies. But, some of it also has to do with financial incentives.

This situation actually is not unique to medicine. I work as an academic in a scientific field and I can tell you that most of the published peer-reviewed work I read (and write) has very little to do with what happens in industry. And, financial incentives often result in unintended biases.

I do think most doctors have their patients’ best interests in mind. But, they are limited by what the field teaches and allows. Unfortunately, as a patient, it is very difficult to know which doctors provide truly exceptional care until one actually goes through a procedure, and by that time, the damage has been done.

[JamesDoncaster]

Like @drbrown, I have to disagree with the statment that teh chance of chronic pain is the same with and without mesh. Having had two hernia (with with mesh, one without), the difference could not be more stark; massive pain with mesh for 6 months until it was removed, no chronic pain with the tissue repair. Moreover, both in online forums and in-person, I have run accross hundreds of people who have suffered with mesh pain and have encountered almost nobody that is suffering chronically due to a non-mesh repair. It astounds me that there is such a stark contrast between what doctors’ data say and the reality that patients deal with.

[JamesDoncaster]

“Have you tried acupuncture or a medical massage therapist?”

Yes and yes. Neither were helpful.

[JamesDoncaster]

One month after the hernia on my right side was repaired (with mesh), I developed a hernia on my left side. There was no indication of a hernia on my left prior to having my right side repaired.

Obviously, not a statistically significant study. But, I find it had to believe this was just a coincidence.

As a side note: I had the left side repaired without mesh, because the mesh on the right caused so much pain that I eventually chose to have it removed. I have had no chronic pain issues on the left side.

• This reply was modified 4 years, 4 months ago by  JamesDoncaster.

[JamesDoncaster]

Hi Lucas.

Although my mesh repair done as a laparoscopic procedure, I can identify with your experience. I had chronic pain after hernia repair and also had serious thoughts of committing suicide. After 6 months of pain I had my mesh removed. I am doing much better now (5 months post mesh-removal).

Two other surgeons that remove mesh (not previously mentioned) are Andrew Wright and Peter Billing, both in Seattle.

I also wanted to add that, I have heard some anecdotal experiences from patients that had mesh removed from Dr Peterson and they are not doing well. So, it may be prudent to seek a surgeon other than him.

[JamesDoncaster]

Given how serious the risk of chronic pain is from any hernia procedure (either with or without mesh), there’s no way I would opt for surgery unless my hernia was causing me pain or was dangerous.

[JamesDoncaster]

My $0.02:

If you aren’t able to get any answers to your questions despite putting in a lot of effort, then you should look for a different doctor. Yes. Surgeons are busy. But, a caring surgeon can and should be available to answer your questions before undergoing a serious operation, which brings with it a number of risks. The level of communication you are getting now is probably reflective of the level of communication you will get after surgery if you go with Dr Chen.

[JamesDoncaster]

Adding my anecdotal experience.

Dr Brown

Amazing surgeon and incredibly kind human being. Took the time to call me many times before and after my operation. He repaired the hernia I had on my left side and did a fantastic job. Three months post-operation, I am back in the gym squatting 300+ lbs. If you’re willing to travel to California, he’s your guy.

• This reply was modified 4 years, 6 months ago by  JamesDoncaster.

[JamesDoncaster]

I have less pain and less tightness now than before I had the mesh removed. Also, no more foreign body sensation. It was a good decision to have the mesh removed. It was a horrible decision to put it in in the first place.

[JamesDoncaster]

“Every time you have an operation you create scar tissue. ”

This is what I do not understand about doctors that use mesh. They say mesh doesn’t cause pain. But, they know that the body’s reaction to mesh is to form scar tissue around it. And they know that scar tissue is not as flexible and malleable has “native” tissue and causes pain and tightness. It is purely semantic to say that “mesh doesn’t cause pain.” So, why in the world do they use mesh — especially on young, healthy, non-smokers, for whom the risk of recurrence (with and without mesh) is low?

“The best way to deal with this is to break down scar tissue manually.”

Frankly, I question the extent to which this can be done. The scar layer is so deep that no physical manipulation would cause enough stress to result in any physical change in the tissue. More likely, the tissue will simply “remodel” over time as part of the natural biological process.

[JamesDoncaster]

Six months of pain with the mesh was plenty for me. I experienced some improvement in pain after the mesh was removed. And the foreign body sensation disappeared. For the most part, I was doing very well until about one week ago. At that point, I felt what I am pretty sure was a recurrent hernia. My surgeon couldn’t clearly identify it, though, when I visited him. He said the exterior (or maybe interior) ring was dilated to the point that he could just get a finger tip through it. But, he couldn’t feel anything pushing through when I coughed. Having dealt with 2 hernias already, I have a pretty good idea what they feel like. So, I am 90% certain I have one. Right now, I’m going to just give it some time to see if the “loose” feeling improves.

[JamesDoncaster]

Less total pain after the mesh removal. Also, the very annoying scratchy foreign body sensation is gone. But, the pain at my right hip has remained. I was definitely hoping for more improvement than I got. But, I am still happy I had the mesh removed.