Good intentions
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The one question that you really want to ask is “how are your patients doing after many years?” with regard to chronic pain and/or discomfort. The “standard of success” is non-recurrence, not the patient’s quality of life. Many surgeons will avoid considering the quality of life of the patient, because it is not part of the overall equation at this time. It can’t be seen physically. They typically lose track of their patients and have no idea how they are doing.
So, if your surgeon avoids talking about quality of life, or makes glib comments like “I haven’t heard any bad news”, or, even worse, discounts chronic pain/discomfort as not a real problem, that is a warning sign. The issue is well-documented and easy to study.
Part of a successful surgeon’s skill-set is getting the patient to accept the procedure. Surgeons are in a box right now with little choice for repair methods. The best you can hope for, probably, is to find somebody that understands the situation and knows which of the mesh products have the lowest odds of chronic pain or discomfort, and how to use the mesh in a way which lowers that probability. There are people out there who had mesh implanted 15-20 years ago who were fine until their second implantation more recently. Something is different, either the mesh or the method. It might be that the latest greatest repair methods for minimizing recurrence are actually the cause of the increase in chronic pain.
So, an old-timer who is using the same method for the last 15 years and can say honestly that his/her first patients are in good shape, recurrence-wise and pain-wise, is what I would look for. Good luck. Take a list of questions with you on paper and use it. Once you get in to the medical setting, it’s easy to lose your train of thought.
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Forgot to add these [USER=”2772″]uneducatedaboutmesh[/USER] [USER=”2608″]dog[/USER]
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quote dog:Dear Good intentions I meant to ask you. When they removed mesh ,what kind of repairing did they do on you .? And no problems with hernia recurrence after that correct ? So if they could do good pure tishies fix
after mess already was created with placement and removing implant ….What kind of problem or what kind of doctor stupidity happened , that they didn’t offer you to do without mesh in the first place?..that could be done even more easy and more durable ?Dr. Billing just removed as much of the mesh as he could and left as much of the surrounding tissue alone as he could, as I understand his notes. No neurectomies, and signs of small indirect hernias on both sides when he was done. The tissue was very edematous, or full of fluids of inflammation, by the notes. I assume that the areas around the mesh were distorted and deformed. No repair work was done, I would guess because the tissues were inflamed and it’s better to let the body adjust and heal before attempting repairs. I think also, that the soft pliable material that would normally push through a defect is now tough and less likely to push through. Not much is written about the omentum but it is actually a part of the peritoneum, that can react to trauma, unlike “fat”. Omentum is one of the materials that typically push through a hernia defect.
I think also that much of the area around the defects are adhered to each other. It’s probably a large mass of scar tissue after removal, not the same physiology as a normal human.
Mesh implantation is the “standard of care” in the hernia repair field at this time. Doing work that is not “standard of care” exposes the surgeon to higher risk. It is also more difficult to get reimbursed for doing work that is non-standard. It will take a large sub-set of all of the surgeons to change the views about the standard of care, in order to change the standard itself. I am sure that there is great pressure from the device makers to keep things as they are. It is a multi-billion dollar business, for them.
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quote uneducatedaboutmesh:I went back with the pain I was experiencing 6-7 months out and I got the “everything looks great” response. I have not been back since my other issues began. I’m going to start by having my regular doc run blood work and go over my symptoms with them. It is so frustrating to know that this is such a serious issue that not many doctors are proficient in. I really want someone to evaluate if I am crazy or is this evil inside me really needs to come out. I wish I knew more before let this happen to myself.
I think that the best way to deal with your situation is to consider it as a completely new health issue, starting now. You have it and you need to figure out how to deal with it. You can’t undo what has happened and make a different decision. So, one option is to learn how to live with it. I found that certain activities, like working out at the gym, or hiking, helped a lot, for a while. Eventually though I made the decision to have the mesh removed. I do know of other people who have had the Prolene system and say that they’re fine with it. One was on a body building site, so his main concern was being able to continue working out. I am not a body builder myself, but am physically active.
Moving forward, try to find ways to make things better and you might find that the situation stabilizes at a point that is better than having mesh removal. That is your basic decision at this point as far as your future health is concerned. That is how the doctors and surgeons that you see will think about it also.
In many ways, it’s like being in a bad accident and learning how to live with the results. It’s not right, it’s wrong in many ways, but that’s the way the hernia repair field is at this time.
Good luck.
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quote uneducatedaboutmesh:I’m quite concerned about mesh that was placed for right inguinal indirect hernia. It was done a little over a year ago and a large prolene hernia system was used.
I forgot to ask you what might be the most important question, big-picture wise. Have you contacted the surgeon who did the repair? He/she needs to know so that they can keep track of the success rate of their work. Many surgeons lose track of their patients pretty quickly. Many patients don’t go back to the original surgeon because the results don’t match what they were promised. It’s important that the surgeons know so that they can make changes.
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I found this also while looking around.
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If I was in your situation I might start at the University of Oklahoma Health Sciences Center. They have been doing research in the field of mesh prosthetics, transvaginal mesh but still mesh, and might have some advice. See the link below. The primary author seems to be gone from there, but a letter to the chair of the department might get you somewhere. They might have specific advice or know local surgeons who can help.
Write a good descriptive letter and send it to them to start so that they will have a good feel for your problem before you talk to them. Good luck.
[USER=”2772″]uneducatedaboutmesh[/USER]
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I wrote a long post but got blocked by the green screen. I should have copied and saved it first. Can you help with that [USER=”935″]drtowfigh[/USER]
Find a surgeon who removes mesh but does not do so as their primary business. One who might be familiar with the Prolene System. Your mesh is polypropylene. Keep a log of your activities and compare them to what you used to do, to see the rate that your life is changing. My personal opinion as a mesh “survivor” is that if the body does not accept or incorporate the mesh that the damage will accumulate over time. Constant inflammation is generally not healthy, I think. Healing and recovery after removal will be more difficult the longer that it is in place, and beside that, the time with the mesh in place is like a sort of limbo, once you know that it’s not getting better. It can’t be enjoyed. In many ways, it is wasted life.
Post your general location and people might know of surgeons to to talk to.
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The Prolene Hernia System is a trademarked Ethicon product which uses polypropylene mesh. It is two layers of mesh connected by what is, in essence, a “plug”.
I personally, as a person who had Bard Soft Mesh (also polypropylene) implanted then removed three years later, think that the constant inflammation and damage that the mesh causes, if it doesn’t work for you, builds up the longer that the mesh is in place. The damage seemed to be cumulative in my case, getting worse as time passed. All of the tissues in the vicinity of the mesh are affected by it, and the loads and stresses on those local tissues are also changed. Some areas will stiffen and toughen up while others will get weaker. After the mesh is removed those areas have to readjust, and it takes a long time.
If you’re not doing so already, keep a log of the things that you do and the after-effects. Your life can be diminished very slowly as time goes by, as you avoid doing the things that are uncomfortable, and with a record of your activities it will be easier to recognize. Compare what you do now to what you used to do. It will help you organize your thoughts also for communicating with surgeons, wherever you find them.
Your best option is to find a surgeon who removes mesh but is also very objective about their profession, as a surgeon and doctor. Surgeons are normal people, and you’ll find good and bad as you search. Talk to as many as you can, via written letter, internet, or phone, to find one who is familiar with the Prolene System and may recognize your symptoms.
Post your general location and people might have suggestions for surgeons to talk to.
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On the other hand, Dr. Bendavid seems to be thorough in his research but also seems very biased. He could probably persuade more people to examine their methods and materials if he was not so critical of the surgeons who use mesh. I suspect that he offends many surgeons that use mesh, which makes them more defensive, resistant to exploring the possibility that some or all mesh devices might be bad. Closing ranks, as they say. Dr. Bendavid might actually be contributing to the continued use of mesh by polarizing the subject, instead of fostering an objective analysis.
Although his comments about conflicts of interest are probably very relevant. Many surgeons who support the use of mesh are getting paid by the device makers that provide it, apparently. Consciously or subconsciously, they have a financial interest in promoting its use.
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The comments at the bottom of the article are worth reading too. One is a student of Dr. Voeller, who “attests” to his method and says that he has a low chronic pain results. But he offers nothing to support the statement. He does seem to be aware that there is little followup, for recurrence, but seems to overlook that the same lack of awareness applies to chronic pain. Almost like he doesn’t really know what it is, or that it can manifest years later. He might be using the two week followup as evidence of no chronic pain, or “nobody has mentioned it” as evidence.
“I’ve copied Dr Voeller’s approach in over five hundred TEP repairs with two recurrences (that I’m aware of) to date over eight years and can attest to the lack of chronic pain with this repair with mesh and glue alone.”
Another surgeon comments about removing mesh, and avoiding plugs. But he still seems to assume that his method works well, not discussing his method’s chronic pain level. John Morrison might be a good surgeon to contact for mesh removal, since he seems to have experience.
” I do not advocate using mesh plugs in any patient.”
“My referral practice is almost entirely devoted to the care and treatment of hernias and their complications. Make no mistake, chronic pain is a major problem with devastating results. I spend a lot of time in the OR removing these patients meshes, with the majority having their VAS score reduced from 6-8, to 1-2”
It’s good to see individual surgeons thinking about these things but the lack of organized research is incredible. So many individuals making their own guesses, experimenting, but no quantifiable evidence of effectiveness.
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quote iceflow:I have a bulge of varying size right in the same spot as before. It varies from nothing when standing up from seating or getting out of bed to ‘just proud’ of the original scar tissue once I start moving around to let’s say if you cut an egg lengthwise and stuck the half into your abdomen. The latter is after activity. There is no pain to speak of, perhaps a burning sensation on the very odd occasion but mostly nothing painful.
It might be just tissue damage and swelling. You really need to get a good diagnosis. Don’t assume too much, this early. If there’s no pain and no recurrence your best option might be to accept the unsightly lump and live with it. Don’t get surgery for cosmetic reasons. The risks are too high.
If you can find the details of your surgery there might be something there. Of the many many varieties of mesh and implantation techniques, each has its own unique faults along with the common inflammation problem.
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[USER=”2769″]HerniaQuestions1[/USER]
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I’ve read and heard comments about “angry” or irritated spermatic cords after surgery. I had a small lump like yours after my first repair which eventually disappeared. When the hernia sac is pulled out of the canal I think that it leaves irritated tissue behind.
The plug and patch method blocks the hole with a substantial piece of folded up mesh, backed up by a flat piece of mesh. I think that a recurrence is unlikely. One reason it’s a popular repair method. The plug does sit next to the spermatic cord though so the cord has to adjust to its presence. The 14th is ten days ago. You’re still in the healing response time frame.
Why didn’t you talk to the surgeon who did the repair? You saw an ER doctor and a “second” surgeon. Curious.
Good luck. Enjoy the holidays, if you can.
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I found a page on Dr. Grishkan’s site describing the trend of what’s happening in the insurance industry.
http://www.herniasurgeries.com/cleveland-ohio-hernia-insurance.htm
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I don’ t know if this will make you feel better or worse, but my surgery site from mesh removal is still changing, a full year later. There have been long periods of time where it seemed like improvement had stopped, but then more change and improvement happened. The body just keeps adapting, trying to get back to the original design. Sometimes it seems like it’s on its own schedule, independent of activity. I’m finally to the point where I live a normal life, and don’t hold back to save the site of the former mesh from pain.
Here is the link to Dr. Grishkan’s practice. He says that he does use a “special” mesh for certain cases. Have you seen your surgery notes? I’m not trying to add something scary, just curious about the details. Looks like he’s popular with the body building crowd so you’d imagine that the lump will reduce, but they do seem to recover faster, by the stories.
Good luck.
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I can’t speak to the details of your problems but two things do come to mind.
One is that if you are unemployed you’re probably paying for your own insurance. If so, you might find that your insurance provider will only reimburse for work done by “in-network” care providers. This is a very recent development, for 2019, that seems to be almost industry-wide for individuals paying for their own insurance. This might narrow your choices if you want insurance to pay for any procedures, since 2019 is just days away. Check your coverage. One the other hand, you might find that paying full price outside of your insurance network is actually less expensive, after calculating for deductibles and the percentage that you’ll pay.
The second is on finding somebody who will do a non-mesh repair, let alone consider doing one. Mesh repairs are rapidly becoming the “standard of care”, I believe because it simplifies the whole healthcare process. Healthcare is trending towards more of a triage type system, designed to get large volumes of people in and out and as quickly as possible, and to use the cheapest methods, because controlling costs is so important. Healthcare is not really for the patient anymore, so much as it is a business for taxpayers and shareholders. It is highly likely that you will find many surgeons willing to “try” a mesh repair on you, even though the result of a mesh reaction for you would probably be a disaster.
This might sound discouraging but I think that it is true. Don’t be persuaded to do what you know won’t be right for you.
On your bulge, I think that hernias get larger because more material is pressing through the defect, and also because the defect gets larger. You will want to avoid letting the defect get too large because that is one of the original reasons to use mesh. It can cover a large area, making a difficult job easy.
Since you were and might still be very athletic, consider consulting with physicians who treat professional athletes. They will be the ones most likely to know who does non-mesh repairs, since most athletes avoid mesh. Contact the trainers at teams like the Dynamo, Astros, Texans, or Rockets. You never know, somebody might have advice.
Good luck.
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[USER=”2766″]Katherine[/USER] You can notify people also using the @ symbol followed by their screen name.
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There seem to be certain words or phrases that trigger a spam filter. Dr. Towfigh can release them if she sees them, but your best bet might be to just try again with fewer or different words. Good luck. Welcome.