Good intentions
Forum Replies Created
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I had an odd dysfunction wherein the corpus cavernosa would not fill with blood but the glans, and I assume the corpus spongiosum (hard to tell but I think it’s the pathway to the glans) would. I had normal sensation but no erection, just a swollen glans. The problem got worse and worse over the months of the third year of having implanted mesh. After having the mesh removed all functions returned to normal, including the odd pulling sensations that I used to get in the first year of mesh, before things really started going downhill in the third year.
I tried to describe this to my first surgeon, who said “that’s not my area” and referred me to a urologist, after getting angry and asking “can’t you just take a pill?”. The urologist was clueless about it and couldn’t even make a guess, even though, supposedly, he was a urologist. Right before I had the mesh removed I had to see another urologist to have my bladder examined for mesh intrusion/erosion, via internal camera. Her expertise was in women’s issues and she proposed that pelvic tightness might be a cause.
Unfortunately, it’s just the nature of the area that people don’t really want to break things down in to the nerves and hydraulics and how it works. Even the pros don’t really want to talk about it, in-depth. They ignore it or pass it off to someone else or give you a prescription for one of the pills.
My basic point is that I had correct function before mesh, slowly degraded performance with very specific anomalies compared to the usual “fix it with a pill” dysfunction when I had mesh, and that all of the correct function came back once the mesh was removed. I had had bilateral implantation of Bard Soft Mesh using the 2014 “state of the art” TEPP procedure, done by the chair of surgery at a large clinic who also was part of a group that taught laparoscopic methods and certified the students who completed the course as “trained”. I did all of the things I was supposed to do to get a good result, finding an expert surgeon who had done many procedures, and used the latest greatest material (lightweight mesh) but got a three year nightmare instead.
Just one true story to consider. My problem was either due to nerve’s getting “numbed” so that they couldn’t control the vessels that control blood flow or because there was an actual physical blockage occurring, I think. It’s the only explanation that makes sense. But the fact that I could get 1/4 of an erection shows that the impetus was there but the work just could not be completed. Mesh can cause erectile dysfunction. What the odds are is not defined.
Good luck. I would think twice or more about the Desarda surgeon’s comments about Shouldice. The number of Shouldice operations performance is probably thousands or even millions of times more than Desarda. I think he was talking his book, as they say. Making a sale. If they don’t have actual numbers, then they don’t really know.
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“Chronic pain” is a term that didn’t really exist for hernia repair until mesh was introduced. So I don’t know about its association with any of the pure tissue methods.
It looks like your meeting with the Houston surgeon actually went very well. I don’t see the horrible manner described that you mentioned. And I don’t think that any doctor can guarantee a successful result or no pain. The best that they can do is to improve the odds, based on up-to-date high quality information. That is the main problem with medicine today I think, there are more powerful organizations controlling the information for the purpose of generating revenue or profit. Medicine is being controlled by business entities.
Your connective tissue disorder seems like one of the original reasons that mesh was developed. For extreme and specific instances. But because mesh had other business related benefits it has expanded in to the mess that it is today. It might actually be that mesh would be the best for your condition, if you could find a surgeon who knows how to use it properly. But doctors have to stick to the “standard of care” so that they don’t get sued for “malpractice”, so most surgeons use it in a way that makes the organizations safe and healthy, not the patients. If all practice is bad then malpractice is invisible to a jury. “Everybody does it this way”.
I would just keep searching and reading and thinking. One benefit of finding this Houston surgeon, an opportunity that you didn’t take advantage of, would be to ask him if thinks a pure tissue repair or mesh would be best for you. Also ask him what type of mesh he would use and how he would use it. There are so many different types of mesh and so many different ways to use it that any good attributes of mesh are overshadowed by the bad. It is chaos that is protecting the companies that profit from mesh.
Anyway, here is Dr. Kang explaining his views on the original Bassini procedure, and what he calls the corrupt Bassini procedure, linked below. I wish I had better answers. I can say that when I had mesh implanted I didn’t really feel comfortable with the surgeon that did it, he didn’t really seem confident in what he was proposing. I don’t think that he believed in the material or the procedure but it was “how it’s done”. Standard of care for hernia repair. But I trusted a surgeon friend who vouched for him and went ahead with it. On the other hand, when I had the mesh removed three years later, I trusted Dr. Billing just through talking to him over the phone. He was confident and understood the problem and felt that he could help, and he did. So, your own personal feelings come in to play I think, if you feel that you’re a good judge of character and ability. I should have trusted myself when I had doubts about the surgeon who was doing the mesh repair.
Here is that link to Dr. Kang’s thoughts – https://herniatalk.com/forums/topic/kang-repair-question/
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You could just try to push through his bad manners and contact him again. You might end up surprised. At least ask him if he knows the difference between the modified Bassini and the original Bassini. You could also pose the question to his staff and ask if they can relay a reply back to you. I always tell people to write their questions down before their visit so that they don’t get the stage fright that you got and leave without answers. You could even write him a letter so that he can respond in his own time. Doctors have to limit the time of their visits because they have a day’s worth of appointments to get through.
He’ll either get angry, maybe defensive, and cut your questions short, or he’ll realize that he’s talking to somebody that has done their home work and change his tone. I am sure that most doctors get simple nonsensical questions on a regular basis. It must be tedious.
Good luck. You don’t have anything to lose, really. He’s not going to refuse to operate because you ask too many questions, I’d guess.
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Dr. Kang has written about the Bassini and the “modified” Bassini procedures. His impression was, if I recall correctly, that the modification actually made the results worse and that’s part of what gave pure tissue repairs a bad reputation. It was, apparently, a simplified version, not taking the extra care needed to get a good result. Remember, hernia repair is a high volume procedure. The simpler the better. Get ’em in, get ’em out.
Does the surgeon still prefer the Bassini method or does he only do it if asked? His manner might have been brusque because he doesn’t really want to use that method. He might already be a mesh convert and would rather do a mesh implantation.
If you post his name there might be info out on the web. Of course, if he found out he might not be happy.
Really though, the fact that you think his manner was horrible is enough isn’t it? I would just move on and find someone you can trust. If he doesn’t have empathy for your concerns about mesh then he probably does not believe that there are problems with mesh. Subconsciously he’ll even have a reason for you to have a poor result. Because he believes in mesh for hernia repair.
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The damage that the mesh does can never be undone. The tissue that is left behind when the mesh is tediously peeled back out is not the virgin tissue that was there before the mesh was implanted. There is a new layer of “scar” tissue, thicker and stiffer than what was there before. That was my point.
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Here is a link to Dr. Kang’s hospital. There are testimonials and maybe more of the information that you’re looking for.
http://www.gibbeum.com/main/main.html
You have probably read about Peter C’s bad result from Dr. Brown’s attempt to fix his problems from prior surgeries. But you might also read dog’s account, and others, of Dr. Brown’s hernia repair results. He seems to know how to repair a hernia.
The one thing that you should consider is that if a pure tissue repair fails, you can get essentially the same results from a mesh repair afterward. No matter the method, the surgeon will just lay down a piece of mesh that covers all possible future hernia sites, including recurrences from pure tissue repairs.
But if you have mesh problems you can never go back to a pure tissue repair.
Your hernia sounds like my direct hernia in the early stages. Direct hernias form what looks like a small pyramid, that disappears when you lie down. Indirect hernias work their way down to the scrotum through the inguinal canal. I was very physically active, going to the gym, playing soccer, running, and working around the house. I tried to learn to live with it but playing soccer made it bigger. If I was starting over with what I know now, from my personal experience, I would get it fixed via a pure tissue repair, as soon as possible. I almost did that for mine but a surgeon friend convinced me that I would be okay with a laparoscopic mesh repair.
Don’t try to work out or lose weight, beyond changing your diet and doing more walking or light running or biking. Avoid any exertion that causes you to hold your breath to generate power. Avoid twisting and lifting at the same time also, that seems to cause abdominal pressure and uneven load on the abdominal wall.
I would let Dr. Brown repair mine, if I was starting over. Or Dr. Kang, if we weren’t in the middle of this mess.
Good luck.
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You can call her office directly. @drtowfigh
https://twitter.com/Herniadoc/status/1010040439401877504
Dr. Shirin Towfigh
@HerniadocNot near? No problem.
I offer “Online Consultation” to those who cannot physically see me for surgical consultation. I’ll review your history, images, & help w/ a diagnosis & plan.
Contact my office (310-358-5020) or email (info@beverlyhillsherniacenter.com)
Not near? No problem.
I offer “Online Consultation” to those who cannot physically see me for surgical consultation. I’ll review your history, images, & help w/ a diagnosis & plan.
Contact my office (310-358-5020) or email (info@beverlyhillsherniacenter.com)#ItsNotJustAHernia pic.twitter.com/SVTkEFRAUh
— Dr. Shirin Towfigh (@Herniadoc) June 22, 2018
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Here is a good place to get a fourth opinion. Their focus is on athletes and core injuries, the professionals go here. Free consultations.
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The gastro surgeon makes the most sense. One thing that you should consider is what, exactly, any surgery would be. What would the surgeon do to fix your problem, and what unintended consequences might you suffer? Surgery is very specific to the problem being addressed, and, ironically, incisional hernias are a very significant problem, after surgery. In other words, your small hernia repair could lead to a big hernia later, just through the act of surgery. Even laparoscopic surgery has the risk of adhesions and/or unintentional nerve damage.
The pain specialist story is a good example of what’s happening in medicine today. Specialists that can only see the world through the lens of their specialty.
@drbrown might have some thoughts. He has probably seen similar over the course of his career working on athletes and “sports hernias”.
It looks like you have been very healthy for most of your life and maybe have not had any significant medical problems. So, as a “first-timer” you might be expecting too much from the medical field. They are excellent at getting people back close to normal after disasters and major events, but recreating perfection from small amounts of damage doesn’t really happen. All of our bodies take some damage over time. Be careful trying to fix what looks like a minor issue. You might end up in a loop of fixing new problems created from the prior fixes. No offense intended, but if you look back through the posts in the forum you’ll find several stories from people who thought they were going to be fine after a “simple” procedure but ended up in terrible shape afterward.
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Dr. Todd Heniford is in North Carolina if you can go there, link below. He seems very conscientious and aware of the problems with mesh. You’re probably going to get mesh unless you travel so make sure you choose a surgeon who is aware of the issues and working to deal with them. Dr. Heniford might even do non-mesh procedures, I would be surprised if he didn’t, considering his involvement in the various hernia repair focused groups.
Dr. Voeller is also at the UT Medical Center but he is 100% a mesh surgeon, and considers the problems with mesh unsolvable. Be careful if he comes up as a possibility. Good luck.
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There are insidious side effects to the mesh pain. You might eventually realize that you’ve been getting weaker and less healthy because you’ve been less active, to avoid the pain. If you try to become more active to get your overall fitness back you might find that the pain grows with the activity level. That is the bind that causes people to have mesh removed, I think. Either accept a weakened, less healthy life, or get the mesh out and hope that your body recovers.
The recovery from mesh removal does take a long time. The patient’s body has adjusted to the mesh for as long as it’s been there and now must readjust to having it gone. Mine has been out for just over three years and I still feel twinges and swollen feelings sometimes, but overall my activity potential is back to normal. Even the small mesh fragment that was left seems to have settled in, it doesn’t get sore as much as it used to. And, no new or recurring hernias.
I think that longer it is in there the longer it will take to normalize after it’s removed. It makes sense. But only the person with the mesh can tell which way things are going. It’s a difficult decision. Take an assessment or where you are physically and where you want to be and evaluate whether things are stable or getting worse.
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The surgeons at OHSU are known for their expertise in hernia repair also. In Portland. They have a very long waiting list though.
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Dr. Towfigh does remote consultations and might know someone in your area.
https://twitter.com/herniadoc?lang=en
Dr. Shirin Towfigh
@Herniadoc
Not near? No problem.I offer “Online Consultation” to those who cannot physically see me for surgical consultation. I’ll review your history, images, & help w/ a diagnosis & plan.
Contact my office (310-358-5020) or email (info@beverlyhillsherniacenter.com)
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Your surgeon was right about the timing, in the early days you just can’t tell what the final result will be. Make sure that you stay active, walking and moving, but nothing extreme, so that things can settle in to the places that they’ll be in for your normal life.
I had odd sensations that only resolved after about a month, when I was stretching in bed after waking. But, in the end, I did not have a good long-term result. You probably will do better, it can’t be determined ahead of time.
In the early weeks, there is not much that anyone can or will do unless you have obvious physical problems.
As far as right versus left, direct versus indirect, with mesh they just do the same on both sides. Lay the mesh over all of the areas that might herniate in the future, after they pull the material back from the wrong side of the abdominal wall. Your surgeon probably had to dissect the “fat” from your spermatic cord and the trauma is where your pain is originating. The cutting/peeling of the material from the cord, leaving a raw surface behind.
Don’t do anything crazy. Wait, stay active, hope. Odds are you’ll be okay.
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Hello Star. Dr. Towfigh is well-known for her methods of diagnosing hernias using imaging. If you read through the many posts on the forum you’ll probably find a wide variety of symptoms from hernias. It seems like you’ve followed the normal path of feeling pain, seeking help, and getting a proper diagnosis. Are you wondering if you can avoid surgery? Or are you second-guessing whether or not you really have hernias?
Good luck. Despite the prevalence of the condition in society the number of possible “solutions” is huge. It’s a difficult place to be.
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Peter C makes a good point about Dr. Muschaweck’s thought’s on neurectomy. He jogged my memory about her reply to my query about mesh removal. Actually, her reply is why I decided she would not be a good option for my problem, I pasted it below. I could tell just by the way the mesh felt inside me that my problem was not due to a specific neve or set of nerves. And that is what Dr. Billing found when he removed the mesh. All of the mesh was surrounded by edematous tissue. In other words everything it contacted was irritated, not just a nerve.
But, she still seems to know how to repair hernias. That is another thing I’ve learned. Doctors can have great expertise in one specific area but just be average in others, thinking along with the crowd. With the mesh companies controlling the discussions, the meetings and topics presented, they control the overall situation, hindering open sharing of information so that people can learn. So, a person has to be very focused on what, exactly, their problem is and choose an expert in that specific area. Your problem still seems a bit undefined. So, a consultation, for information, with her might still be useful.
Here is what she said in response to my question about mesh removal.
“Unfortunately, these mesh complications are very common and sometimes really difficult to treat. We see a lot of patients with these problems, you are describing.
The pain cause always is a nerve irritation because of the mesh, which can be dislocated and can cause a stretching of the nerve. This can be solved with open surgery and neurolysis and possible neurectomy.”
Before surgery, a dynamic ultrasound should be done to see the mesh and a possible dislocation, which we perform by ourselves.
Would it be possible for you to come to Munich?”
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I would start with a consultation with Dr. Muschaweck if you can arrange it. Even if you choose a different option for surgery, the knowledge that you’ll gain about your condition will probably be very helpful. I went through a similar thought process as you, collecting information and considering options around the world. I had considered Dr. Muschaweck for both my original hernia repair and for mesh removal.
One realization I came to and still believe is that most of the surgeons and doctors involved in hernia repair are thinking in terms of the “average” person. A person who just needs to drive to work, do, at most, some light labor, some light gym work maybe, a jog or two during the week. They don’t comprehend that an average person can put as much strain on the repair area as a professional athlete, if they are physically active. You can tell them that you are an athlete but all they will know is the “standard of care” for the average person.
So, if you are planning rigorous physical activity go to a surgeon who repairs athletes. If you want to continue with light jogs and desk work, go to one of the big hernia repair centers that serves the average person.
Do you know what was done for the “sports hernia” work in 2007? There was a time not long ago when surgeons thought that mesh was a good repair tool for that condition also. And, the thinking on athletic pubalgia has changed quite a bit over the years. They might have tied some things together that are now causing tension.
You should consider also, Dr. Meyers at the Vincera Institute. He is known for fixing athletes and is aware of mesh problems and athletic pubalgia. He is kind of like the Muschaweck of the United States. I pasted the link below.
Good luck. 41 is young, take your time to make the right decision.
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The hernia sac can travel quite a distance. It almost like a liquid that just follows the path of least resistance. Imagine the path it follows to get in to the scrotum, and the amount of material that can end up in the scrotum. Softball size is not uncommon. I think that hernia sacs getting underneath a mesh implant is a common cause of recurrence.
You said 4×6 inch piece of mesh, which is large for an open repair. But there are many many different types of open repair. And it is not uncommon for mesh to move, and shrink, that’s why they use such big pieces. Sometimes it just keeps moving until it balls up.
Do lots of research before you see any surgeon. The “standard” for mesh pain is neurectomy, often as a preventive measure. It’s not supposed to be but there is incredible leeway in what a surgeon can do in hernia repair.
Since you’ve had fairly good results so far it would be a great shame to slip down the slope to chronic problems. But you are right on the edge, I think. Make sure that you understand what your surgeon plans to do and that you trust their track record.
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I think that the only thing that is almost certain is that the original mesh will be left in. But there are many ways that the recurrence could be repaired. There are stories on this forum about placing new mesh over the old mesh, or placing new mesh next to the old mesh and tacking them together. Or attempting a tissue repair and attaching to the mesh. Dr. Towfigh has commented on the “proper” way to fix a recurrence but, nonetheless, people have reported that their surgeons did not do things that way.
I don’t think that there is a “standard” for recurrence repairs with mesh. The surgeon’s creativity is the source of what you’ll get. So make sure that you choose a good surgeon. I would not go through the “system”‘s referral process. If you’re seeing the same surgeon that did the first repair, maybe get a second opinion before committing to surgery. Good luck.