Watchful waiting: the damning evidence of questionable behaviour

[Herniahelper]

Since it has come up several times in this thread I think it’s worth mentioning swimming.

One of the most frustrating things for people undergoing watchful waiting, or those with a hernia complication is discomfort with exercise. For active people sports that that involve cutting, or rapid changes in direction, are often the worst. Running is often out.

It’s often the way I gauge how bad somebody symptoms are. If someone tells me they have a little irritation after they run 10 miles… I’m much less concerned then someone who for example can’t make any sudden movements at all without seriously hurting themselves.

So how do you stay active and do cardio comfortably?

As several people above have already discovered swimming tends to be the most well tolerated form of cardio.

Assuming you already know how to swim eefficiently, people with hernia problems often can maintain a high degree of fitness swimming.

[spinotza]

@Alephy sorry if I was misleading, I have a great deal of enthusiasm to share the story of my period since being diagnosed with a hernia since before I was quite overweight and I lost 12 kg and got into shape and just appreciated life more – discovered swimming and was generally more active than the years before.

The place where I plan to get the surgery is called the Oxford Hernia Clinic. They actually do non-mesh too but only the old Bassini type which I’m not very keen on. On their website they have a pdf where they talk about pain risks at great length and it’s worth reading.

I would be getting an open bilateral hernia surgery with self-fixing mesh under local anaesthetic.
@Good Intentions I’ll call the clinic and try to find out more about how they addressed the points you’ve made about minimizing the risks in the mesh category.

[William Bryant]

Although not aimed at me these posts are very useful… And if possible I’d like to avoid surgery but like Spinoza there must come a time when surgery is needed. Unlike Spinoza im not young, I am a couple of months off 60, I’m not in particularly good health… So would an operation be better, from a coping and recovery point, sooner or can I still leave it?

I guess it’s a trade off/compromise. I have read today on the NHS site that the “risks can sometimes outweight the benefits of surgery”. Which is not very encouraging. They are most likely meaning mesh surgery in the main which again maybe something for Spinoza to think about. If the NHS states that it does mean there must be a significant risk with surgery. Either that or they are trying to save money and/or free hospital space.

[Good intentions]

If you have only mesh repair as a choice then try to minimize the risk within that category. It’s been noted many times that some surgeons think that all mesh products are the same, or realize they aren’t but don’t have a choice themselves. Also, you can find stories of surgeons who routinely perform a triple neurectomy with a mesh implantation, or use multiple fixations even though they are not recommended. There are still bad surgeons out there, there will still be many choices within the mesh category.

You might also note that the prevalence of short-term immediate mesh problems (like mine and several others on the forum) seems to follow the introduction of large area dissection and the use of larger pieces of mesh. The early success of laparoscopic implantation was based on the minimal usage of mesh, covering only the defective area. Today’s training is to cover as much area as possible,

Good luck. It will still be a difficult search.

[Alephy]

@spinotza I guess what you just mentioned depicts a different picture….if you go for surgery do you already know which type? mesh vs non mesh? in the UK?

[spinotza]

@pinto I play tennis at a light level without running like a madman (like I used to) around the court. When I just go for a run (anything longer than 1 km), I start hurting as soon as I end the run.
I became a swimmer searching for something to replace running with. I recommend to try it to anyone who has a hernia.

I must mention that I also wear a truss or hernia boxers that keep my bits into place, that has been important for me and it allows me to carry groceries, lift weights. Without it I would feel more discomfort from these activities!

@Good intentions that was a very sobering post and a much needed one. The risk of losing a lot more than I gain is a very valid one that makes the decision a very difficult one. @Herniahelper is highly knowledgeable of the issues and I agree that chronic pain is a higher risk in young people such as myself (32 yo) who are not used to being in pain.
I found a doctor that I like who was recommended by other doctors, now that I have private healthcare insurance it’s very tempting. He does open hernia surgery with mesh but all he does are hernia surgeries and I believe the odds are good with him. In the UK almost no one does the hernia surgery without mesh. I can’t afford to go to Kang and get the surgery in South Korea and I heard mixed reviews about the ones offering modified Desarda in Germany.

So why am I getting the surgery? I relied on the truss/boxers to have a pain free experience for the last 5 years. But I would be lying if there isn’t a bit of worsening happening. The hernia might be slightly bigger than it was 5 years ago, the rarely occuring pain occurs just a tiny bit more often. It’s still very manageable but I don’t think I can go through my entire life without surgery and I’d rather do it now when I’m in great health/weight than in the future when I might be battling other issues as well. Having said that if anyone can convince me there will be a hernia surgery revolution in the next 5 years I would be willing to stretch my watchful waiting run to a full decade :). Thanks all!

• This reply was modified 2 years, 5 months ago by  spinotza.

[William Bryant]

Thanks Herniahelper, I am self limiting what I do through choice as you say I do have to carry as it’s difficult to avoid but I am doing smaller loads.
Very good replies and very helpful. I think I have some time to make a choice and to see what I am like in a few months time. I have stopped exercises also but carry on walking as worried about lack of condition. Maybe I can do some gentler ones.

And the bit about your colleague who is a hernia doctor is the other side of the mesh coin really, I’ve posted to the effect they don’t really care but he obviously does. It’s a sad state of affairs that mesh affects both patient and (albeit to a lesser degree and not physically) doctor in some cases. I hadn’t thought of that.

[Herniahelper]

Regarding your situation I think I only have two concepts to guide you.

If it doesn’t bother you too much, then don’t worry about it. Especially if it seems relatively stable.

The second question is what’s the trajectory? Is it stable? Or is it becoming more painful, is it getting bigger, is it starting to limit your life more?

If it bothers you, especially if you feel like it’s progressing… Then it may be time to think about having something done.

You can’t live your life not lifting anything. Is that because it hurts and is getting bigger or is that because you’re just worried that it will?

If you do decide to have it repaired in general if it’s small enough I think finding someone that has very good results with a open primary tissue repair is probably your best bet. I think it’s what I would choose.

If it’s big and you need to have mesh I would go with a robotic or laparoscopic approach with someone who’s very experienced. And in general if you’re having absolutely no trouble whatsoever with the other side I would probably tell the surgeon beforehand if you find a hernia on the other side, don’t touch it.

[Herniahelper]

Well the short answer to your first question regarding me noticing a lot of people with repairs have some degree of chronic discomfort…

I have to save from my experience that really only applies to mesh repairs BUT… I suspect that is because it is what everybody has. It is very very rare that I encounter somebody that had a hernia repair without mesh unless they were a child. It is more or less what everyone has gotten in the United States for the last 30 years. Most general surgeons do not feel comfortable with a non-mesh repair. Most of them dabbled in it at some point and they just had to high recurrence rates.

I have one friend who is a very well respected trauma surgeon basically tell me that he doesn’t want to do hernia repairs anymore. He hates when they come in the door. Because he has all these patients with chronic pain and he has no idea what to do about it. He just says it’s a really difficult problem…

Here he is at the end of his career and he is bothered by this.

That said I do see people with mesh repairs who are basically fine.

I think for most laborers that I see with repairs, it bothers them but they push through it. If they were not a laborer it might not.

I would also say that I think there is category of person which I have never really seen discussed here which is the “Very Sensitive Person.”

These are people who are very sensitive to stimulation and in tune with their bodies.

They have to sleep with blackout curtains, ear plugs, they can’t wear jewelry or watches because of the constant sensation drives them crazy. And while they are very sensitive, doesn’t mean that they they are babies with pain. These are normal high functioning people…

But I suspect if you put a mesh in them, they’re going to know. They might not have severe chronic pain, it might not limit their life, but when you ask them about it, they know something’s there, and it irritates them and they know that something is wrong in that area. And because there is a mesh there it will never have the opportunity to remodel well.

It’s sort of their curse. Everything that goes wrong with their body, they are unlucky enough to be constantly reminded about it.

So while it is not a true allergy, I think that some of these people might be poor candidates to have an appliance that is designed to cause irritation in an anatomically complex and highly sensitive/ mobile area.

That probably is also a factor in why younger people tend to have more difficulties with chronic pain than the older people. They’re nerves are just not working as well, everything else hurts, they just don’t notice it as much.

[William Bryant]

Herniahelper, would that apply to non mesh as well or just mesh repairs?

I am thinking I need to do something even though I can do most things but once my doctor said you have a hernia, I have avoided lifting etc to prevent it worsening. It’s a bit psychological I suspect. For example, my dad has had his hernia for about 5 years and until I had one he was saying his didn’t bother him and he more or less carried on as usual. Once I had one and started saying I can’t lift or carry as it can make it worse, he has started saying his has got bigger because he carries.

To give you some idea of what he did when he had a hernia but before I had one, me and him lifted a concrete fence base above head hight and slotted it in to place, then put the wooden fence panel in. Not once did he say it hurt or aggravated his hernia.

[Herniahelper]

Well I will say regarding your chronic pain figures that whenever I hear academics discussing chronic pain I’m very suspect of the numbers.

Look at the meta-analysis they are going over papers that are tabulating rates of chronic pain. But I think that they are vastly underreported in those studies.

I think that the vast majority of patients go back to their surgeons and tell them that they are unhappy and they are dismissed. They are evaluated clinically for a recurrence, if none is found they declare the surgery a success and try and get rid of them.

So often I see surgeons blaming a labral tear, or some other problem on their discomfort when it clearly is not.

And many patients just internalize that their doctor is basically saying that they can’t do anything more for them and so they don’t come back. As far as the surgeons concerned he thinks it’s another cure.

I see a lot of patients with inguinal hernia repairs and I ask every single one of them how is it.

I would say only about 40% say it’s fine. The vast majority says that it bothers them from time to time and they don’t like it but they live with it. And then there’s a much smaller number that are seriously debilitated. But a lot of people just adjust their lives.

I remember I asked one patient the other day how his repair was and he replied:

“They tell you it’ll be good as new. They lie.”

I would say probably more than half of patients that have this done have some type of difficulty with it. However they can live with it.

Regarding the above statement that this person is doing a lot of things with his life therefore he shouldn’t get surgery… He may be doing all of those things with a lot of difficulty. He’s trying to live and he’s trying to make use of the time that he has and so he’s suffering through the pain. And he’s checked off a lot of things on his list and now he’s willing to risk being better.

I have never understood the people here who say that they’re getting their mesh explanted for very minor non-specific symptoms.

I think that there are people that are really miserable, and even though they are doing things like swimming, they have drastically changed their life and they live with a lot of pain. They don’t sleep well, they don’t eat well, everything is a struggle for them. They can’t even carry their groceries out to their car.

And if their exam is abnormal, and they’re imaging as abnormal… Like there’s clearly a problem and there’s something to fix.

I think it’s reasonable to take that risk.

But if your symptoms are vague, and you’re imaging is normal… It is very easy I think for that person to be worse than they were. Especially if their symptoms were not even related to their hernia repair which is entirely possible in those situations.

[Good intentions]

@spinotza

I hate to be a downer, but I just responded to someone else who had a similar thought about regaining one relatively small thing that they missed, and were planning to take the risk of surgery to get it back, even though they had a very full and enjoyable life without that one small thing.

You will be risking all of the good things that you described, for the sake of one small thing. If you have a bad reaction to the mesh, all of those things that you said that you now enjoy can be destroyed by chronic pain and discomfort.

Risking all of this –

“The last 5 years of my life have been amazing. I snowboarded, played tennis, travelled around the world had a great sex life.”

For this –

“things to stay the same and finally be able to run again.”

I had the same thought process. I could do almost everything that I wanted to do with my direct hernia except play competitive soccer. I took the chance just to get that one thing, the joy of playing competitive soccer. I never got it back and lost much more.

The numbers seem clear. About one of six (~15%) people who have mesh implanted will suffer chronic pain. The number for discomfort could be up to 30%.

It’s just the way things are today. The efforts to define the chronic pain problem more clearly, let alone do something to make things better, have stalled. Surgeons are just doing what they were trained to do, not really understanding the damage that chronic pain causes. Even worse, surgeons are starting to avoid mesh removal, I suspect because the patients are expecting to be made “whole” once the mesh is gone and it doesn’t happen. Then they get blamed, wrongly so, for the patient’s pain. The damage caused by mesh implantation is permanent.

[pinto]

@spinotza, great post. How did you become a swimmer–accidentally or you tried finding an option to running? How is it that you play tennis presumably pain-free but apparently not when running? Despite saying,
>I lost the fat, I feel better than ever<
you still can’t comfortably run?

[Herniahelper]

I think your information is out of date.

5+ years ago most surgeons used the argument that hernia’s NEEDED to be fixed ASAP to justify a procedure. Strangulation risk or “hernia’s are a progressive disease it will only get bigger if you wait” were the most common ways the surgical community would dispel any lingering doubt regarding the necessity of a surgery. Both for themselves and patients.

There has been a paradigm shift in recent years regarding the advent of chronic pain following hernia repairs. It is an established risk now.

Such that if you have a patient with an asymptomatic hernia, why risk touching them…

Then risks and benefits must be weighed. For the vast majority people with small asymptomatic hernia’s the literature has proven the strangulation risk is prob lower than the other risks of the surgery, such as chronic pain.

However someone might still want it for cosmetic reasons, then benefits may be worth the risk.

It’s an individual decision.

It is true hernia’s are often a progressive disease. Small defects grow. How fast, how big, is very patient dependent. However for many patients the paradigm shift is that watchful waiting is a genuine part of the discussion now.

Where as before the mentality was schedule EVERYTHING for surgery.

Your comment about sports “hernia’s” confuses things a bit in the sense that they are not true abdominal wall defects. They often represent a groin tear/ injury. In many cases the anatomy is still in close enough proximity to heal with conservative measures. It’s not a hole fat stuffed into it.

Soorts hernia unfortunately is often a label given to people with no other explanation for groin pain. Like most things we can’t definitively diagnose, the body sorts them out with time.

But there are definitely people with clear musculoskeletal groin injuries and there is data to suggest that groin reinforcement with meshes or hernia like repairs can “fix” them.

Again people need to be careful how they use the catch all phrases.

If you have small bump on your belly button that’s been there for the last 10 years that you could care less about… And a surgeon is pressuring you to get in the OR schedule ASAP because you could incarcerate at any moment… Run.

[William Bryant]

Hello Alephy,
I may be thick, actually it’s most likely! But I cannot make out if you are saying watchful waiting is bad, good, acceptable or dependant on hernia.

With the risks of surgery, I can see why people put off surgery. But is it likely to make things worse?

[Alephy]

@spinotza Just so I understand, do you have any pain because of your hernia? Is running the one thing in life that makes a difference for you? If the answer to both questions is no, then I would totally agree with @good-intentions ….

[Alephy]

@william-bryant I am a supporter of watchful waiting.

None of the doctors I have seen mentioned this option as a possibility, all referring to the official guidelines that do not support it, with the reasoning that an hernia will only get worse and that sooner or later surgery will be necessary, and better sooner than later. I do NOT agree with this way of thinking!

Why?
1) if the hernia has no effect on your lifestyle, the risks associated to doing nothing are minimal (I am talking about an inguinal hernia, for other types this is not necessarily true!)
2) few more years of waiting might bring in other options/techniques/technologies which might benefit you
(again depending on the type of hernia)
3) no surgery will rewind the clock, even if you are an elite athlete, so the idea to do it so you get back to your old yourself is an illusion: you can however get into being somebody different, sometimes in fact thanks to the injury (few people have mentioned that the hernia prompted a lifestyle change which was beneficial, this can go even further in my opinion)

And most importantly,
4) a very high percentage of the people who got inguinal hernia surgery (will) have discomfort, on par to much worse than before the surgery, so it is a very substantial risk! (other types of hernias have a different background and associated risks and might warrant a rethinking of your approach to the problem)

My post however wanted to focus on the dishonesty of many doctors, who either ignore the risks or simply report false information: this is what makes me angry!

I think it is hard to find doctors who will give you a fair assessment of your hernia, in terms of options, outlook etc. The response will always be a mixture of personal believes, old info, bias towards a procedure/technique, limited skill set etc. And you better get your know how in order, so as to spot the “experts” with lots of conference badges, who will take your money, go in and leave you right after with your problems (the body violation feeling afterwards must be mentally challenging)

My 2 cents

• This reply was modified 2 years, 5 months ago by  Alephy.

[spinotza]

Such a good answer @Herniahelper. One that I agree with fully. I opted for watchful waiting. Comsetically it looks a bit bad and my partners over the last 5 years have asked me why don’t I get it repaired. On the other hand this hernia helped me get into the best shape of my life. I turned into a swimmer – I can swim for miles and miles and I never felt any discomfort like I would feel if I’d go for a run. I lost the fat, I feel better than ever and now that my job offered me private healthcare insurance in the UK I will probably finally have the surgery. Although the thought of chronic pain scares me. The last 5 years of my life have been amazing. I snowboarded, played tennis, travelled around the world had a great sex life. All I want from the surgery is for things to stay the same and finally be able to run again.

I took this route because my doctor here in the UK asked me if I want to wait. I said yes. He said come back anytime you feel ready and we will schedule the surgery.