[groundfaller]

What ?s should surgeons be asking their patients?

Wow! I was surprised to have been brought back to this post but here I am. My surgery was nearly two years ago. The first year after the surgery was a absolute hell. I was not prepared for the difficulty. I was also not prepared for the lack of support.

Ultimately, almost 18 months after the surgery, I found a physical therapist who was willing to put in the time and energy to help me as well as install a sense of confidence that I can be helped. He was great.

I want to emphsize a couple of points. First and most importantly, there needs to be more dialogue and more time spent working with the patient. For lack of a clinical term, don’t leave your patient with “lost cause syndrome.” It can be deadly. I am not exaggerating when I say that I felt hopeless and the idea of suicide crossed my mind as I wasn’t recovering.

Secondly, someone, somewhere, somehow needs to develop a comprehensive physical therapy/rehabilitation program to recover from this kind of surgery. This is one of the most common major surgeries which has a high incidence of complications. Professionals, please, I beg you, consider a better after care process. I can’t stress this enough. Don’t let people sit and waste away.

[groundfaller]

Auto immune disease and mesh rejection

It’s irresponsible and unethical. I understand that any number of problems can happen and one can’t always definitively say that it is an inherent problem of the mesh or that it was the doctor’s mistake (or some other thing), but if it doesn’t work then it doesn’t work. Say so. I felt dismissed and pushed out of the office when I went back a year later with trouble. I have suffered from serious depression in the meantime and my relationships with family and friends and coworkers have suffered. If I could take the pain back I had before the surgery, I would. It was manageable.

Please doctors, let the data be accurate instead of trying to protect your reputation or the future of the procedure or the usage of the prosthetic. I wouldn’t even dare to speculate how many other people feel the way I do and believe, and probably rightfully so, that the complications are sorely under reported.

It’s funny how when I explained my situation to my current physical therapist he just dropped his head and remarked how typical it is and that their job is to simply do the surgery and then wash their hands of the situation and move on. The sad part is that better comprehensive care with professionals that know how to talk to patients beforehand coupled with doctors that can perform the surgery and a concerted after care protocal would help so many people either make the right decision to not have the surgery or to find adequate follow up care when things dont work out. Instead, we leave everything up to the patient to make a less than informed decision and then flap in the wind afterwards. Surgeons only know their part which is the surgery but they and their team should know where to send people next, especially in the face of complications.

I challenge anyone to find detailed information about adequate written follow up care in addition to the “dont lift more than 10 lbs for 4-6 weeks and then go about life as usual.” Your abdomen was just cut open! If I broke my arm I would get more advice and help and my arm isnt at the center of all my movement. If the research to support the follow up care isn’t available yet the surgery is still performed, someone needs to fast track that into happening.

Futhermore, if you do find detailed follow up care instructions on recovery and resuming life and/or coping with complications…POST IT! HERE! People need information. I know, I know everyone is different and the follow up can’t be standardized. Well I would rather know what I could possibly be doing instead of sitting here with my thumb up…which was my original surgeons suggestion. “This is just going to be the new you” is what I was told.

[groundfaller]

Auto immune disease and mesh rejection

From personal experience, I have to wonder about the accuracy of reports when I hear about the “success” of mesh. I have had life changing complications as a result of mine. I saw the surgeon who performed the operation multiple times in the year following the surgery and I have even seen other surgeons and medical professionals for other opinions. What I wonder, is who, and more importantly how, information is reported. I feel like my surgery is considered a success in their eyes. I wonder how many other people feel like the surgery did not go well and the surgeons aren’t hearing the feedback.

[groundfaller]

Opinions on mesh removal & managing chronic pain

I haven’t been on here in a while but there was time when I posted a lot of questions on this site.That being said, I have also seen several doctors in person too. I had a left inguinal hernia repaired about 15 months ago and I felt hopeless for a very long time after the surgery due to continuous complications and chronic pain. It has only been in the last 3 months that I have noticed any improvement but I still worry constantly about the implant. I can feel it inside me and it does still cause me discomfort. Every doctor I see tells me to just live with it.

Some of the symptoms I have had (and still do experience) include a tugging sensation radiating into my scrotum, pain and tightness near my hip bone, and nerve sensations shooting through my thigh. At present most of these are 70 percent gone although they do come back. Some have been gone for a few months now such as the tugging sensation

The upside is that I have been able to resume some of my favorite activities such as biking, rock climbing, and hiking, although to a lesser degree than before. There was a phase in January of this year when I was barely able to walk two city blocks and although I am wildly unhappy with the overall results I have to take what I can get at this point…and I can move again and things seem to be progressing forward again.

So what have I learned from my experience…I don’t have a lot of trust in surgeons, plain and simple. For a while I considered the prospect of having the mesh removed but that meant going to the same professionals who have been so dismissive with my post surgery treatment. What helped me out the most has been physical therapy and movement. It may not be right for everyone but the surgeons offered me very little medical advice and there is an almost criminal lack of information regarding follow up treatment/care for hernia surgery complications. Given the frequency of this surgery and the high rate of complications, it baffles me that research isn’t blazing forward on post surgery treatment modalities. I hate to sound so negative but once a surgeon has done the surgery then you have left their field of expertise and they are not much use. So, back to my point, physical therapy might help. I am in the process of seeking out a couple new therapists for help. One specializes in cesarean complications in women and the other is a sports medicine PT that focuses on my activities. I have my fingers crossed that they can provide more positive results with better encouragement for a happy future than they surgeons who all just threw their hands up in the air.

[groundfaller]

Transparency in pricing for surgery

From a patient point of view, I have been saying for a long time that pricing transparency is a must. Of course pricing becomes more complicated as the difficulty of the procedure increases. This is true for any fee for service transaction such as when you take your car in for work or when a plumber or electrician works on your house. Let’s bring some reality to the situation though. If a plumber is called in to snake a drain, they pretty much can quote you a cost. Sure it might lead to a new, unknown problem but you address that as it arises, including the new cost. To me, that is akin to having your blood drawn. The cost should be known up front and if it leads to something more, then you address that as it arises.

In terms of something more complex like surgery, it would seem that there are parts to the procedure that are largely fixed in price. Then there are the parts that probably follow a fairly predictable average for the procedure. Then there might be a couple more difficult to calculate variables but they still have a max or a min and the surgeon assessment would determine that, right? Hospitals and insurance providers hire tons of number crunchers already to calculate similar things. Other industries have to stick their necks out all the time to anticipate costs and live by what they calculate. Call me callous but I feel like the lack of transparency and the ridiculous compexity of the bill paying process is just a clever way to hide how the health care consumer is being financially gouged.

I find the wild variation in facility costs (from one place to the next) to be strange and frankly alarming. I am suspect of this difference. Sure, some places have newer or different services/equipment that can account for it to some degree, but should it really vary that much, especially if my method of payment is the only variable that is different? Things such as this can explain a lot of the reason why people are becoming more and more skeptical of going to the doctor. It becomes a real shame and very real social problem if people avoid getting needed medical help because they dont trust the billing/insurance process and as a result they ascribe those feelings to the doctors and services provided.

Transparency….it seems pretty important to me.

[groundfaller]

Right Inguinal Hernia Pain five years post-op!!

mamadunlop,

will you keep us posted on your progress, especially if you continue to improve. I have a feeling that if/when there are successes then they move on from sites like this, which seems natural. Those who continue to look for help could use some encouraging stories though, even anecdotal ones.

[groundfaller]

Should I have a hernia re-done?

Is the answer really that simple…nerve ablation? What do the other doctors on here have to say. I have been dealing with chronic pain for a year now since my surgery and it is almost impossible to get a doctor to talk to me about it. If it were so simple as ablation, wouldn’t they be more willing to discuss this? Where is the research?

[groundfaller]

Right Inguinal Hernia Pain five years post-op!!

I am sorry you are going through this. I hope you find the help you need. It really is hard.

I can relate somewhat since I have had only complicaitons from my surgery and I have had similar results with doctors who cannot or will not help and insurance companies that dictate treatments that are not in the patients best interest. The system is broken and it lacks both the internal and external willpower to address the problem. There should be specialist hernia repair surgeons only given the number of people requiring this procedure and number of complications that arise. I foolishly accepted that a general surgeon was the right person to go to based on the advice of 3 MD’s and the recommendation of the insurance. Hindsight is looking out my asshole. Some people on here don’t like my negativity and I am cool with that but hopefully my feedback will give someone else the foresight and the chance to second guess what is going to be the first recommendation they receive…to see a general surgeon.

Don’t trust the data either. You can research a surgeon to find out their success rate for this procedure but what if they don’t report that a patient has persistant and chronic complications. Or maybe it does get reported but it is through an anonymous source so it limits ones ability to assess a surgeon. There is no record of my problem for others to be aware of other than what I write here or on surgeon review websites. Do surgeons ever meet with a prospective patient and say, “oh well yeah the last guy that was in here didn’t recover from the surgery and that was done 1 year ago….or 5. His post-surgery quality of life is far worse.” It is more important to have an umblemished record than to have accountability. How many other people are suffering under the radar because the information on complications is inaccurate and the support for those suffering is full of road blocks and stigma.

Think twice future patients.

Susan, hang in there and hope you get some help.

[groundfaller]

future of inguinal repair and PT

I was really hoping for better results. I am feeling incredibly depressed. I am just shy of one year now from when I had my surgery and things are markedly worse than before the surgery. I have been to many doctors and health care professionals in different disciplines and there is nothing they can do. I have grown tired of the blank looks and the mystified responses. I don’t trust doctors any more.

I opted for having my inguinal hernia repaired for ‘quality of life’ reasons and now I profoundly regret it. General practitioners, surgeons, urologists, and physical therapists have all seen me and decided they can’t/don’t want to help.

I caution anyone considering this surgery. I know statistically there are more successes than failures but that hardly matters if you are one of the people who ends up with chronic complications. The doctors are almost running from the exam room to escape a conversation they don’t want to have. They don’t know how to manage these problems. Know that you can potentially be that person they dont want to work with and it is not a small percentage of patients. It is not a fraction of a percent. It is not even in the single digits. The number of people with chronic pain is a percentage in at least the teens and some suggest it may be as high as 30 percent. That is a lot of people and if you get this surgery you can be one of them. I don’t say this as a scare tactic. I say this because I am living it. I say it because I wish people would have been more honest with me. Honesty is a hard thing to come by these days, especially by surgeons who have a conflict of interest. To make money they have to perform surgery but sometimes it may not be in your best interest. How sad.

[groundfaller]

Chronic pain and recurring Hernias

Mamadunlop,

How have you been doing with the nerve blocks/treatment?

Dr Goldstein,

Can you direct me to research or an abstract about nerve blocks when used to treat post hernia pain syndrome. I have trusted doctors too much throughout this process and I want to make sure if this is what the pain management person wants to do, that it is best for me.

[groundfaller]

Concerns with laparoscopic repair

I had open repair and still had significant nerve damage. At least that is my best guess since the surgeon who performed the operation discovered nothing afterwards and is offering no more treatment advice. I am on my own to find a doctor/treatment that will help me. The options seem pretty awful and with daily pain and limited activities, my funds are running out and my patience has worn thin. Find the best doctor that money can buy or keep the hernia. I have serious regrets. This is a nightmare. I could have been much, much, much happier without medical “help.”

[groundfaller]

future of inguinal repair and PT

For those considering surgery, I would strongly suggest, if you are in a situation to wait a little bit (even though I dont advocate waiting until it gets worse), find a PT that can help you work on some issues ahead of time.

Ironically, the exercise that is proving most beneficial to me is the one that most stay away form after hernia surgery – squats. I am talking no weight squats that focus entirely on form; driving the hips back, chest out and head up, with an even press through both legs. It is incredibly hard giving the years I spent not moving right because of the hernia. It is a total adjustment but I also found relief when done right. I have also found a lot of relief from clamshell exercises, bridges (when I can do them right), and anything that activates the glutes. That is my personal weakness but I wish I had some direction ahead of time. I am now trying desperately to fix my bad mechanics between episodes of inflammation and pain from bad mechanics. No bueno.

[groundfaller]

Chronic pain and recurring Hernias

Are nerve blocks a treatment with a solution or are they mostly diagnostic for future surgeries?

[groundfaller]

future of inguinal repair and PT

Thanks again RJ. I appreciate the supportive comments.

The last 1-2 of weeks have produced some good results in my physical therapy. I am not out of the weeds yet by a long shot but it is a promising sign. I have added some new exercises and I am seeing a combination of them being really helpful. It is starting to feel like with continued daily work and a careful, gradual increase I might feel normalish again. Here’s to hope.

I think you are spot on with the pain threshold and movement triggers. I am starting to learn those limits but I am also incorporating small approximations of what I used to do. In time I hope to be able to slowly add to that. I am going to give this a solid, thoughtful effort.

[groundfaller]

future of inguinal repair and PT

Yeah, lots of questions and comments there and I will just speak to the gist of it. Hernia repair is a major surgery with the potential for major complications. I knew that going into it. I have lived a very healthy life and wasn’t emotionally or psychologically prepared for those complications. I still believe my problem is the result of a biomechanical imbalance that came from living with a hernia for many years and being very active and doing very heavy labor. Bodies have a way to adept their movement to things that just aren’t right and that is what mine did. Now I have a pelvis and supporting muscles that want to behave one way out of habit and the repair “expects” it to do something different, hence the swelling and discomfort. If you rub two things together long enough you get friction. The exercises produce good results but I am very congnizant of my movement when I do them. The trick now is training my mind and body to move again in a way that respects the repair without having to be so focused on moving that I can’t concentrate on anything else.

As for comments about surgeons, I have three:

1 – Choose the most experienced surgeon you can. Simply put, you should expect the best.

2 – Choose a surgeon that you feel like you can talk to and one who doesn’t quickly glance over potential complications. Should complications arise, you need someone you can talk to.

3 – And this should probably be first, if you discover a hernia early on which is not problematic, be very careful if “watchful waiting” is recommended. Hernias do not heal on their own. If you do heavy manual labor and/or you have an active lifestyle, it is almost guarenteed to get worse. That means a bigger repair with the potential for more problems. I was in my mid 30’s when mine was found, felt healthy, and when the doctor said, “this can wait,” I didn’t hesitate to wait. I didn’t want to be cut open. Of all the things I have tried to make excuses for, I truly believe this was my biggest mistake – waiting!

[groundfaller]

future of inguinal repair and PT

Thanks for the reply WasinTN and thanks for sharing your story. I think the more information that is available for future patients so they can make good decisions the better. I am glad you found a good surgeon.

I did have the surgery over 10 months ago and I am still having complications. My lengthy rants above are just ways for me to seek advice, vent, look for support, or whatever.

Future hernia surgery patients…choose wisely! It’s the best advice out there. Again thanks WasinTN.

[groundfaller]

future of inguinal repair and PT

Thanks again for the feedback RJ. I spent most of December on a regular dose of NSAIDS although my body never really responds to them in terms of pain and it is hard to tell if I get any reduction in inflammation. For the first 2/3 of the month I was taking ibuprofen regularly and then I switched to sodium naproxen to see if there would be any more improvement. I didn’t notice much. About 2 weeks ago I decided to switch to tumeric capsules with bromelain. I generally don’t turn to herbal/supplemental remedies too often but at this point I am desperate, so what the hell.

Regarding the physical therapy progress I was doing pretty good until today. Recently I even managed to add in two 5-10 mile flat bike rides the week before. Things didn’t feel 100 percent but they felt ok. Monday I tried a 10 mile bike ride home from work which didn’t bother me and on Tues I went shopping in an outdoor mall where I was on my feet for more than an hour. Sadly the pain and swelling began to return today and I have been very frustrated. I will return to just my physical therapy for activities again and see if I can reduce the pain once more.

These relapses are taking a big toll on my self-esteem. The prospect of ever seriously climbing and biking is dwindling pretty fast. If I had any notion a year ago that this would be my circumstance I would have never opted for the surgery. That pain was somewhat manageable then. I know I complain about my hobbies being the big sacrifice but the scary part is the loss of ability in my daily living, ie home repairs and the belief that i can put in a hard day of work.

Keeping my fingers crossed.

[groundfaller]

future of inguinal repair and PT

So after almost 2 weeks of physical therapy, I have noticed an improvement in the pain. That is a quick response and I consider it very promising. The pain has not yet resolved of course but the improvement is significant and I expect the recovery to require a lot of time. Nevertheless, I am more optimistic than I was a month ago and I wanted to share a few thoughts just in case someone finds it valuable for their situation.

First of all, I still believe that the lingering problems I am experiencing are the result of a bio-mechanical problem. My logic is as follows: I spent many years with a hernia including ~4 years of watchful waiting but with no symptoms which were disruptive to my active lifestyle. One thing I did notice over time though was that my movement was favoring the side with the hernia. I wouldn’t sit as flat when riding my bike or when standing I noticed myself always leaning more to one side. I did also notice minor lower back aches on the side with the hernia and my hip joint would occasionally go in and out of joint in an audible fashion.

My theory for my pain is that once the prosthetic mesh was placed inside me, and I had a large inguinal hernia according the surgical report, it was done so with the expectation that my pelvis and hip joint was moving in a normal fashion but because of years of improper movement from the hernia, I was “twisted’ out of proper posture. It has been especially noticeable when standing in place or when squatting to lift where I am not engaging my glutes correctly and therefore exhibiting a sacroiliac joint dysfunction.

The second theory I have for my pain – and this is insight which comes from noticing what does and doesn’t feel good from the PT exercises – is that when performing the exercises or for that matter any other normal daily movement, I am not breathing deeply. I also feel like that habit might have developed over time as deep abdominal breathing may have started to irritate the hernia.

The above is all pure speculation on my part based on how my body is responding to activities and the history of my hernia development/treatment. My PT routine is a very simple set of core exercises which include a series of leg lifts in each direction, clamshells, planks, and kegels (a theraband has been added to many of these for more resistance). I have also noticed the most relief from pain comes from when I do glute exercises and when I do simple planks and focus on deep, full breathing that allows my diaphragm to expand. This observation leads me to believe I had a specific area of weakness that hopefully if addressed and continued over time, I will continue to see more relief in my pain. I have carefully selected and added a couple more exercises which include push-ups and a face done prone glute exercise that seems to really activate that muscle group. When done properly, these exercise seem to benefit my situation. My day starts off better and if I find at the end of my work day I am experiencing pain then a few of the exercises such as the clamshells, take the pressure off the surgical site where the pain originates.

I certainly am nowhere near my ability to go on 30 mile expert level mountain bike rides like I could a year ago but I am hoping with with some carefully directed exercise routines I will be able to enjoy biking again.

Again this is entirely my own experience and I am far from pain free but it is meant as food for thought for anyone desperate to resolve their own pain.

[groundfaller]

future of inguinal repair and PT

Linda, it sounds like you have a very good handle on things as well as a good head for making decisions. I am especially glad to hear that you have found a surgeon that comes well recommended. I wish you the best and hope that if you have the surgery that it is a speedy recovery. Let us know.

Troy

[groundfaller]

future of inguinal repair and PT

I am no doctor and I am only speaking from experience but here are a few of my thoughts.

1) leading up to your surgery, do whatever exercises that build a better core and proper movement. Consider glute exercises, gentle abs exercises like planks, kegel exercises, quads etc and walking. If you have a professional PT that can help that is great. Better movement is the key afterwards right? Seems like learning how your body moves now, right and wrong, is a good thing.

2) (And I offer this with great caution) but consider the surgery sooner rather than later. I say this only because I exercised years of watchful waiting when I had a small hernia that was pain free and mine become large and problematic. It won’t just heal itself. If you are active, like I was, the risk of it increasing in size is risky, especially if you do any heavy lifting, intense exercise ,etc. I can’t help but wonder if I had the surgery sooner that my outcome might have been better. Please take this recommendation with a grain of salt though. Everyone is different and choosing to have surgery is a very personal decision, which leads to my next recommendation.

3) Choose your surgeon very carefully. Don’t be afraid to ask pointed questions about their experience. Their experience is the most important factor. Find someone you can trust and talk to. If complications arise, which they can, you want to know you have someone you can talk to. If you have time to look for a surgeon, use it wisely. Research, research, reasearch!

I am only 41 and before my surgery I would mtn bike and rock climb and ski. It was a central part of my identify and I have doubts that I will ever be able to enjoy those things again.

4) Get advice from others who have had the surgery. Talk to nurses/staff at hospitals to get honest feedback about who performs your operation, especially if you don’t have the luxury to travel to one of the surgeons who seem to truly be experts. http://americanherniasociety.org/find-a-hernia-specialist/