Good intentions
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quote kchabot:Thank you for all your help and guidance . My Dad’s challenges are now a “full body” experience. He also has a pacemaker (2013) and bilateral knee replacements (2015). I’m certain we are dealing with an autoimmune response to all his implants. I hope there is something we can do to alleviate his suffering. It is comforting to be validated. Best to you all.Dr. Earle is newly active. I hope that you sent him a message and that he replied. You can use the “at” sign to contact him indirectly. It doesn’t always work though. Good luck.
[USER=”1292″]DrEarle[/USER]
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I read the article that Dr. Earle linked and can’t get past the fact that even she, the author, “chooses” to believe the story that is told over and over, despite well-documented and available evidence to the contrary. It’s not the mesh, it’s the skill of the surgeon. The cognitive bias is incredible, but understandable. It must be very hard to accept that you’ve been harming one out of six of your patients, by the inherent qualities of the material itself. Not the technique, or placement of the material. Accepting that the device makers have pulled a fast one.
Very frustrating to see well-educated people avoiding confronting a very important health issue.
“The “standard of care” now is to do hernia repairs with mesh, a plastic like substance which allows for less pain (if inserted properly), earlier return to work, and decreased recurrence rates. ”
Any problems with the Shouldice method are completely unrelated to the problems with mesh implantation. That’s where true progress in health care can be made. We should focus on mesh.
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Thank you for commenting Dr. Earle. I think that the more salient point is not that he chose Shouldice, but that he did not choose one of the prevailing laparoscopic mesh repair methods from an American clinic.
Is he really choosing Shouldice or is he avoiding mesh? He is from Kentucky, why didn’t he go to the University of Kentucky’s clinic? Good political publicity, keeping it in state, advertising the capabilities of a state university.
https://ukhealthcare.uky.edu/services/hernia-program
Or he could have gone back to Duke, his alma mater.
So, not only did he miss the opportunity to keep it in state, he even left the country. There are plenty of well-known American clinics that accept cash payment. The stated reason for going to Shouldice seems disingenuous.
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Actually, I just found one. You can click on his name, or the little word bubble by his name,and send him a message. Post #7 from 2016. Sounds very promising. Good luck.
https://www.herniatalk.com/393-chronic-pain-after-inguinal-hernia-repair-boston
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He seemed to be thinking right in 2007, see the image and the first link below. I have not seen a single post from him on this site though. There are posts where people respond to Chaunce1234 (I did once before Chaunce1234 corrected me) as if he is Dr. Earle, but no confirmed Dr. Earle posts.
No idea what his thinking is today. He consults for Bard though, apparently (see the springer.com link below), so might have some internal conflicts, not so free to act on his opinion. Might be a problem.
Good luck to your Dad. Is his problem centered around the hernia repair site or is it a general overall physical problem? I know of at least one person who had a “full body” reaction to his second mesh implant.
https://link.springer.com/article/10.1007%2Fs00464-016-5072-x
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[USER=”2042″]Jnomesh[/USER]
[USER=”2754″]PowerSeed[/USER] -
quote PowerSeed:Also would appreciate comments on…
- Living with it as long as possible vs. actively seeking repair surgery?
- Necessity of mesh removal?
- Patching mesh on mesh?
- Anyone aware of issues with Ethicon’s SecureStrap absorbable tacking system–mine must have come loose?
- Intrigued by simplicity of the Desarda procedure vs. Shouldice but note Dr. Tomas, for one, only removes mesh that is placed from an OPEN surgical hernia repair technique—is this due to liability risk? Are there others who remove lap mesh and do Desarda?
Thanks again!
Bard’s 3D Max product is supposed to be designed to eliminate the need for fixation. Finding a different surgeon certainly seems reasonable.
I would find a surgeon who has experience in fixing mesh failures. The expertise used for laparoscopic mesh implantation is probably quite a bit different than an open repair of a mesh failure.
Jnomesh is deeply involved in the problems with 3D Max. You might check out the Facebook pages he has linked in previous posts. There are probably others who’ve had a failure and had it repaired and might have real experience with surgeons who have that expertise. Experience is supposedly the number one attribute to look for when choosing a surgeon. Find one who has experience in fixing mesh failures.
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I don’t think that “Da Vinci surgeon” is actually a thing. The Da Vinci system is just a tool to get the work done. Seems like some good branding though. Da Vinci is a very famous name.
Some coincidental comments on Dr. Towfigh’s Twitter page.
https://twitter.com/SuEller4/status/1079182637217054720
So, same hernia expert surgeon, robot vs lap, does robotic have more complications than lap? I believe the saying is “A fool with a tool is still a fool”. A bad surgeon with a robot is still a bad surgeon?! Thankful for the good surgeons, especially you hernia surgeons!
— Susan Eller (@SuEller4) December 30, 2018
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Be careful, and don’t rush. You are on the path for bilateral mesh …. implantation. They are probably planning exploratory surgery based on the imaging results, but ready to implant mesh if any sign of herniation is present. The “standard of care” is to implant as much mesh as can be fit in to the area. Low body fat small women seem to be a high risk category for chronic pain or discomfort after mesh implantation You could easily end up in a much worse situation that you are now with two large pieces of mesh implanted across all of your lower abdomen. It’s what they do now.
You might have better luck contacting Dr. Towfigh’s practice directly. The contact info is on the site somewhere, but also here on her Twitter page, below. Good luck.
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quote Mariel:It wasn’t until I went to a private ultrasound place that they found what appears to be a ” right & also left bowel containing inguinal hernias”.
I am planning/hoping to get surgery by a hernia specialist here in Seattle, WA….. But currently am waiting in the hands of my terrible insurance for them to approve the out of network surgery.I do not trust them to perform my surgery, since they kept disregarding mine as nothing. Especially since I’m female and have 2, would prefer an experienced surgeon.
Be careful, and don’t rush. You are on the path for bilateral mesh implantation. They are probably planning exploratory surgery based on the imaging results, but ready to implant mesh if any sign of herniation is present. The “standard of care” is to implant as much mesh as can be fit in to the area. Low body fat small women seem to be a high risk category for chronic pain or discomfort after mesh implantation You could easily end up in a much worse situation that you are now with two large pieces of mesh implanted across all of your lower abdomen. It’s what they do now.
You might have better luck contacting Dr. Towfigh’s practice directly. The contact info is on the site somewhere, but also here on her Twitter page, below. Good luck.
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quote katiebarns:It’s been a year already and I’m losing hope. I can’t walk and stand without pain anymore.
Hello Katie. I’ve found at times that I can get a persistent sore spot that does not resolve with rest. Instead, working the area by running, hiking, or biking relieves the pain. Vigorous activity that causes heavy breathing and blood flow. My theory about why it works is based on Dr. Bendavid’s proposal that the small pores of the mesh cause nerve damage in the tissue that occupy the pores. The small pores are dead zones, toxic to the nerves that have grown back in.
It’s counterintuitive but if nothing else works it might be worth a shot. I think that the heavy breathing causes more fluid flow in the lower abdomen than just stretching or working out or walking. I have gone several days with no change until I decide to just do something because it’s not getting better.
I am not a medical doctor so use your own judgment. This is just my own experience. Some time on an exercise bike might tell you something without causing too much pain.
Here is a link to Dr. Bendavid’s paper. http://file.scirp.org/pdf/IJCM_2014072117033945.pdf
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quote katiebarns:It’s been a year already and I’m losing hope. I can’t walk and stand without pain anymore.
Hello Katie. I’ve found at times that I can get a persistent sore spot, even after 90% mesh removal, that does not resolve with rest. Instead, working the area by running, hiking, or biking relieves the pain. Vigorous activity that causes heavy breathing and blood flow. My theory about why it works is based on Dr. Bendavid’s proposal that the small pores of the mesh cause nerve damage in the tissue that occupy the pores. The small pores are dead zones, toxic to the nerves that have grown back in.
It’s counterintuitive but if nothing else works it might be worth a shot. I think that the heavy breathing causes more fluid flow in the lower abdomen than just stretching or working out or walking. I have gone several days with no change until I decide to just do something because it’s not getting better.
I am not a medical doctor so use your own judgment. This is just my own experience. Some time on an exercise bike might tell you something without causing too much pain.
Here is a link to Dr. Bendavid’s paper. http://file.scirp.org/pdf/IJCM_2014072117033945.pdf
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quote katiebarns:It’s been a year already and I’m losing hope. I can’t walk and stand without pain anymore.
Hello Katie. I’ve found at times that I can get a persistent sore spot, even after 90% mesh removal, that does not resolve with rest. Instead, working the area by running, hiking, or biking relieves the pain. Vigorous activity that causes heavy breathing and blood flow. My theory about why it works is based on Dr. Bendavid’s proposal that the small pores of the mesh cause nerve damage in the tissue that occupy the pores. The small pores are dead zones, toxic to the nerves that have grown back in.
It’s counterintuitive but if nothing else works it might be worth a shot. I think that the heavy breathing causes more fluid flow in the lower abdomen than just stretching or working out or walking. I have gone several days with no change until I decide to just do something because it’s not getting better.
I am not a medical doctor so use your own judgment. This is just my own experience. Some time on an exercise bike might tell you something without causing too much extra pain.
Here is a link to Dr. Bendavid’s paper. http://file.scirp.org/pdf/IJCM_2014072117033945.pdf
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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]