[jerseattlewa]

One time I talked to the assistant to Dr. Tomas, Rajim, and he told me that it was a 50 percent change of the loss of a testicle for removal of mesh as to an inguinal hernia as there can be damage to the blood flow and nerves. I’ve herd that from 2 surgeons as well. However, there are surgeons that do that type of removal who claim single digit loss of testicle. As I’m on the West Coast I focused on surgeons in the area. As I could not find an in state of Washington surgeon I went out of state. I ended up having William Brown, MD of Fremont, California perform the surgery (open and not .laparoscopic) on May 2, 2018. Seromas can occur after surgery (fluid build up) or even hematomas (blood build up) and these are not unusual. I developed a hematoma and it became infected. I had surgery again on June 21, 2018 for the hematoma by William Brown, MD, and with that (where there is infection) they do not close the wound all the way and leave it slightly open to allow fluids to drain. In my home state I continue on with the local wound care center using a wound vacuum (wound vac) and I continue on with lab testing and medication as to infection. Brown along with Peterson and Towfigh claimed single digit loss of testicle. Could not find anyone else that claimed this. Peterson said open surgery was better for removal and that his opinion was that a surgeon that used laparoscopic surgery for removal would re-implant mesh vs. taking the mesh out and repairing with sutures.

[jerseattlewa]

CONCERNS AND IDEAS FOR INCLUSION:

1) As to the value of having someone, or some people, from the FDA in the patient advocacy group or on a panel it cannot be determined unless we know their job titles, duties and powers. The FDA has 14,824 employees. It’s likely that only a few have any real power. So, I would encourage the disclosure of their job titles, duties and powers.

2) There seems to be little consensus in the medical community as to treatment or diagnosis of the various maladies related to hernia mesh in its use or complications thereafter. Accordingly, it could in effect be a case of the blind leading the blind with any conclusions or recommendations of such a group of limited value, or flawed, working from such a base of no real consensus.

3) My third concern is that as this group is initiated by one person with their own viewpoint, opinion and preferred treatment modalities it would seem possible that there could be consciously or subconsciously some preference in selection to those of a like mind to be on this patient advocacy panel. I believe Dr. Towfigh should be given credit for initiating herniatalk and I believe she acts in good faith. It should be noted that at Dr. Towfigh’s Beverly Hills Hernia Center website it states in part: “We always choose the best mesh for each patient’s needs to minimize risk and maximize outcome. We also offer non-mesh repairs…” However, there are other doctors and patients who do not believe that mesh should be used at all. Such contradicting view point should have voice within the patient advocacy group. Accordingly, I think it would be appropriate to have representation in the patient advocacy group by those who are against using mesh such as, but not limited to persons such as: William Brown, M.D., Fresno, CA and/or Kevin Petersen, M.D., Las Vegas, and/or Shlomo Raz, M.D., Las Angeles (As to Dr. Raz he deals with mainly mesh related to prolapse, but is well familiar with mesh in any event), or other similar persons. Unless there is such representation I think the conclusions or recommendations of the patient advocacy group will lack credibility and/or will be vulnerable to criticism on that basis.

4) I believe that any conclusions or recommendations that the patient advocacy group would come up with should be sent out by email and posted for 30, 60 or 90 days for group and public comment prior to any such conclusions or recommendations being finalized and that such resultant comments be incorporated or at least attached.

5) To disclose my own viewpoint as to my opinions herein; my personal belief, as someone with hernia mesh complications, is that mesh should never be used unless it’s a matter of life or death with then no other treatment modality option available. According to the FDA’s website nearly 100 medical mesh products have been recalled and that does not count those that have been voluntarily removed. One would be hard pressed to find recall numbers like that as to a product class or group in any other industry.

There is a medical association known as: Society of American Gastrointestinal and Endoscopic Surgeons aka “SAGES”. Do a Google search using these terms: SAGES use of synthetic mesh in infected field. Do other searches on Google such as: NIH hernia mesh infection; Or; NIH hernia mesh sub-clinical infection, Or; NIH hernia mesh chronic inflammation, Or: NIH chronic inflammation sub-clinical, Or, NIH hernia mesh biofilm infection Or; NIH hernia mesh chronic pain. Note: National Institute of Health = NIH. As to sub-clinical infection alone, or as to sub-clinical chronic inflammation alone, either of these are very difficult to impossible to diagnose with any kind of testing available yet they are very real possible outcomes for those with mesh implants. And, how does a doctor differentiate either of those conditions which he or she can’t really diagnose to begin with from chronic pain which is common due to shrinkage of mesh of up to 50 percent? Good luck! Getting a solution is virtually impossible. In my personal experience, when you complain of pain or symptoms of infection or inflammation/allergy your most likely to get referred to pain management by a surgeon. All of this is reason enough to avoid mesh like a disease. Your just gambling with your health when it comes to mesh. Make no mistake, implanting mesh in humans is an experiment, a fast and dirty method that allows surgeons with marginal skills to do surgeries. Would you get new parts put in your car or computer by a tech who had no ability to remove it later if need be? Most all surgeons that repair hernias use mesh, but good luck on finding one with any experience in removing it or even willing to try. In my experience the threshold/standard is that you have to have a raging infection bursting through the skin before they will even talk about removal.

Further, surgical mesh comes with no warranty. Even a small child knows that anything of value comes with a warranty and that most items without warranty are garbage, worthless or of little value. For contrast, a pool cover made from polypropylene (one of the common materials surgical mesh is made from) can be obtained with a warranty and is typically offered. A pool tarp is exposed to wind, weather, pool chlorine, water and sun, etc. In contrast, an implanted medical mesh is exposed to and interacts with unknown numbers of proteins, enzymes, a constant flow of blood, physical pressures and no one really knows how much more. Until such time as medical device manufacturers are willing to give a 20 year, or lifetime warranty, on mesh it should be banned.

6) I suggest that the patient advocacy group should consider having or creating a clear mission statement to have focus. Personally, I would prefer to see such a mission statement to include in part a recommendation to ban surgical mesh production or use until the multi-billion dollar pharma industry decides to sell all surgical mesh with a substantial warranty like ordinary products you can buy at Walmart, Home Depot, Walgreen’s, Target, Costco, etc. Would a person buy a new computer, smartphone or car without a warranty? Would any person of ordinary reasoning buy a surgical mesh to be implanted in their body that comes with no warranty? They would or might do so only if they had no option.

[jerseattlewa]

I had a hernia mesh implanted in 2002 and soon afterward started having burning sensation. I’ve had problems ever since that get worse. My opinion is to find a surgeon and get it removed. I’m trying to find a surgeon to do it now and have located a few outside of my state. There is no warranty on mesh. Most of the time it shrinks. If you do Google or Youtube searches on infected mesh or mesh allergy you will find the percentages all over the board. As to infection alone the SAGES medical group in its Youtube video states it to be 4 percent to 12 percent based on a review of 42 studies they looked at. I assume that is only gross infection and not including sub-clinical infection which are virtually impossible to confirm by testing and does not even address allergic response. Other results, including National Institute of Health will show the percentages all over the map. As to diagnostic imaging: THE GOLD STANDARD FOR SEEING MESH IS ULTRASOUND. MESH IS ECHOGENIC. Sometimes CT or X-ray can see mesh. Sometimes MRI can see mesh (some mesh manufacturers have added metal flakes to aid detection). Professor Dr. Raz who has removed over 900 meshes only uses ultrasound. Professor Dr. Elizabeth Mueller only uses ultrasound to see mesh. As she says: “Its the only modality we have that sees mesh.” Do a Google search and a youtube search with these terms: Dr. Mueller mesh ultrasound. Also do a Google search using these terms: Dr Raz mesh ultrasound imaging. I have hernia mesh. As these two doctors work on females they use 3D ultrasound, but ordinary 2D ultrasound works. I had a CT scan done and it showed nothing. I then had a standard 2D ultrasound done and it showed the mesh instantly. Just make sure the sonographer is experienced and ask them to show it to you when they find it. If you have a CT scan or MRI that shows the mesh your lucky. And, the CT scan and MRI might be of some benefit in at least showing the surgeon your structures and locations. During surgery to remove mesh, or right before, doppler ultrasound can be used to see arteries and veins. If its an open surgery that is of less value as the surgeon can see structures directly. The risk for men in hernia mesh removal is that the cord to the testicle can be damaged and you end up having to have your testicle removed. I’ve been told a few times by surgeons and assistant’s to them that is a 50/50 chance. The problem is that when it was installed the mesh was wrapped around the cord. So, it takes some skill to remove it without damaging it. However, for the few surgeons that do hernia mesh removals on a regular basis I’ve been told the rate is much lower, in the single digits. One surgeon has stated that you have to remove 50 meshes before you really know how to do it.

[jerseattlewa]

THE GOLD STANDARD FOR SEEING MESH IS ULTRASOUND. MESH IS ECHOGENIC. Sometimes CT or X-ray can see mesh. Sometimes MRI can see mesh (some mesh manufacturers have added metal flakes to aid detection). Professor Dr. Raz who has removed over 900 meshes only uses ultrasound. Professor Dr. Elizabeth Mueller only uses ultrasound to see mesh. As she says: “Its the only modality we have that sees mesh.” Do a Google search and a youtube search with these terms: Dr. Mueller mesh ultrasound. Also do a Google search using these terms: Dr Raz mesh ultrasound imaging. I have hernia mesh. As these two doctors work on females they use 3D ultrasound, but ordinary 2D ultrasound works. I had a CT scan done and it showed nothing. I then had a standard 2D ultrasound done and it showed the mesh instantly. Just make sure the sonographer is experienced and ask them to show it to you when they find it. If you have a CT scan or MRI that shows the mesh your lucky. And, the CT scan and MRI might be of some benefit in at least showing the surgeon your structures and locations. During surgery to remove mesh, or right before, doppler ultrasound can be used to see arteries and veins. If its an open surgery that is of less value as the surgeon can see structures directly. The risk for men in hernia mesh removal is that the cord to the testicle can be damaged and you end up having to have your testicle removed. I’ve been told a few times by surgeons and assistant’s to them that is a 50/50 chance. The problem is that when it was installed the mesh was wrapped around the cord. So, it takes some skill to remove it without damaging it. However, for the few surgeons that do hernia mesh removals on a regular basis I’ve been told the rate is much lower, in the single digits. One surgeon has stated that you have to remove 50 meshes before you really know how to do it.

[jerseattlewa]

PARTIAL ANSWER REGARDING TESTICLE. THIS IS A COPY AND PASTE FROM DR. BROWN’S WEBSITE; [h=2]Testicle[/h]
The spermatic cord can become scarred to the mesh. Within the spermatic cord there are multiple, very important and sensitive structures: the genital nerve that innervates the testicle, the genital artery and veins that supply blood for the testicle, the vas deferens that transports the sperm, and the cremasteric muscle that retracts the testicle.

If the genital nerve is injured or damaged, you will have pain in the testicle (not the scrotum), and:

• The pain is constant and gets worse with activity or pressure.
• The pain can be debilitating, and sex is often impossible.
• There is severe pain in the testicle.

If the blood supply to the testicle is damaged:

• There is severe pain in the testicle.
• The patient is debilitated
• The testicle slowly shrinks and dies.
• An ultrasound can help confirm the diagnosis.
• The testicle may have to be removed.

If the vas deferens is damaged, then sperm cannot get out of the testicle. There will be:

• An ache and a swelling of the testicle.
• Intercourse is painful.
• The sperm count may be low.
• A steroid injection may help.

If the cremaster muscles become attached to the mesh, then the testicle will no longer retract upward in response to cold and sex. Surgery can help.

Learn more about about William Brown, M.D. go to his website: sportshernia DOT com

[jerseattlewa]

Yes, a good idea to do a brief summary as it would also act as an index to my records and documents to which I have a copy of everything. Moving forward I’m going to implement that. As to Dr. Billing, he does not accept my insurance. As to Dr. Wright I’ve seen him and its not something he does. As to Dr. Towfigh, I found her name on this forum prior to joining and have already started an email exchange with her office manager. As to the other 3 I can certainly contact their offices and attempt to find out what capabilities they have. I will update my post as to my progress and as to any information that I discover that may assist others in the same situation I find myself in.

[jerseattlewa]

“Seeking an experienced hernia mesh removal surgeon.” Thank you for your time, effort and leads. As to Dr. Billing he does not take my insurance. As to Dr. Wright, I’ve been to see him and it’s not something he wants to do. As to Dr. Towfigh I found her name on this site yesterday within a report by a patient who had good results in her removal of his hernia mesh and I emailed her office yesterday and a conversation has been initiated. As to the other 3 MD’s leads listed, it’s possible that I’ve gleaned through a name or two in the past, but I will check them out as to to if they actually have done successful hernia mesh removal, really know what they are doing and if they will take my insurance. I agree with your concept of brief summary of the facts and I’m going to adopt that idea moving forward. Its a good one. I have all of my records and always bring them with me to all appointments. But, a brief summary will be helpful with that as well as it will act also as an index to the records and documents.

[jerseattlewa]

Seeking an experienced hernia mesh removal surgeon. To answer your question, the surgery was open and I do have a copy of all of the related medical records. If a doctor wants to spend 5 minutes to read my post they are welcome to do so. But, my post is also for those who are suffering and offers them some possible education as to elements and issues they will likely deal with. I’m looking for a needle in a hay stack as to a well qualified surgeon that really and truly knows all the ins and outs as to hernia mesh removal. Your point as to length of the post may or may not be of value as to making it shorter and so I may create a separate post, a kind of help wanted ad, more cryptic, a 1 minute read, but then there will be more questions for a doctor to ask. You mention a medical facility that you think may have doctors that remove mesh. Good luck with that fishing expedition. I don’t think you’ve been through the search process. If so, provide the name of the surgeon you found that actually and successfully removed your hernia mesh. In my experience, it’s near impossible to verify ahead of time, or even after the the first visit, that any health practitioner is really qualified, highly knowledgeable and experienced for what I seek – hernia mesh removal. I think your intentions may be good, but its the actual experience where you learn. After going through with hundreds of searches, emails, phone calls and maybe 15 to 20 medical appointments in the past year plus this has taught me that it’s near a mission impossible to find practitioners that I need. So far, when I get into the appointments, face to face, most do not seem in my opinion do not have much of any clue with a few limited exceptions. Its a sad state of affairs when you go to a medical appointment and end up providing education to someone you were hoping to get answers from and where it ends up going nowhere as seems to be my most common experience to date.

[jerseattlewa]

SEEKING AN EXPERIENCE MESH REMOVAL SURGEON. Reply to your response. I’m aware of how mesh embeds itself. Point of clarification. My problem is minimal or moderate as to pain so long as I’m on antibiotics. Otherwise it escalates and I suffer red eyes, foggy brain, loss of libido, feel sick all over. I have found it to be a wild goose chase as to finding surgeons. At first I would call the front desk and most of the time it was negative, but some assured me the doctor was able and knowledgeable and experienced, but none were and only 1 had removed a hernia mesh and had a bad result. Then I started asking for, or selecting, (on phone calls) to talk with the doctor’s medical assistant or surgical nurse. Again, most were negative (the doctor had no experience) and a few assured me the doctor was experienced. The last two of these did not work out well at all. About 10 days ago, upon my second visit, the surgeon came out and said he had never actually removed a hernia mesh and suggested I “find” someone that actually had experience. I’ll leave it at that. It seems to me that in my past research I’ve checked out Billing, MD. But, I’d have to go back and look in my notes. I will check him out again. I do not beat around the bush with any of these people. For me, its not about groin pain. Its about infected mesh and if the doctor has ever removed it. I have little interest in discussing with a surgeon what other doctors know or do not know as that would tip them off. I prefer to ask direct questions and listen to whatever they have to say on their own as so I can figure out if they actually know anything about mesh and in my experience very few do and most of them have mistaken or incorrect knowledge. They have biologic mesh, but really I believe that most repairs can be done without any mesh. There are a dozen different non-mesh methods of repair and such non-mesh methods are combined by some surgeons. Thanks for the tip about starting a new thread. I’m new to this and it seems like a good idea to start one.

[jerseattlewa]

SEEKING AN EXPERIENCE MESH REMOVAL SURGEON. I am fairly well educated with a doctorate degree from a major university. So, I’ve really worked and studied and taken actions to get my mesh problem resolved with no luck so far. I had mesh implanted 16 years ago for a hernia. I was not told about it until after the surgery. It’s been a nightmare ever since which has only got worse over time. I started having pain shortly thereafter to which only antibiotics would abate the pain – specifically Cipro being the best. No doctor I’ve ever talked to knows that Cipro is a powerful anti-inflammatory according to NIH research. This is important as if I’m experiencing allergy an anti-inflammatory would work in abating symptoms and so its not clear if the Cipro is acting against infection or allergy. No doctor or surgeon that I’ve ever consulted with has any clue as to this including 3 different infectious disease M.D’s. I’m seeking a surgeon in Seattle or the State of Washington to remove it, or in some other state where the surgeon will accept my medical insurance. Does anyone know of one? I might be open to paying cash, but it will wipe me out financially. It’s near impossible to find doctors that know anything about mesh problems after its implanted or how to remove it. I’m seeking one that has actually done a removal and not just talked about it and one that is beyond the ignorant level as what I’m finding is that there is some back-woods rule that it’s not something to remove unless some kind of gross infection is present. There is also some back-woods rule among many I’ve talked with that its a 50 percent chance of loss of a testicle due to damage during surgery to the cord over which the mesh is usually laid – it’s said that its hard to know where the cord is at. Can you imagine if organ transplant surgery had a 50 percent chance of catastrophic injury to another organ? Well, with organ transplants that is not the case and they get it right. It’s just that the surgeons are not putting in the time and effort when it comes to hernia mesh removal. Surely, diagnostic modalities could be employed to avoid the loss of a testicle. Perhaps, real time imaging or reconstructed imaging. Another thought is to cut 1 to 2 cm around the cord and leave that 10 percent or whatever it is in. As an example, with Staph, to be infectious you need 10 to the 3rd power or 9th power, 1000 to 1 million organisms to get to an infectious dose of Staph. Reducing the load of whatever clinical or sub-clinical or semi-sub-clinical infection or allergy I have to the polypropylene on my body by 90 percent would be welcome. I believe most get to the 50 percent chance by operating “blind” by not having or knowing what diagnostic imaging to use. I’ve been to many doctors and specialists including infectious disease, general surgeons, radiologists and they are all lost. I need the real deal. And, one that is interactive and open to discussion and learning. Get a hernia and a million surgeons are lined up to fix you up with mesh. Now, go try to find one that is willing and highly experienced in mesh removal or in anything related and its extremely difficult. You have Dr. Raz, M.D. out of UCLA that at last report has done 900 mesh removals for females and by now its probably over 1000. You just can’t find surgeons with that much experience as to hernia mesh removal more than you can count on 1 finger. Further, Raz knows that 3D ultrasound is the best diagnostic modality. I can’t find any radiologists that have any clue on doing 3D ultrasound as for mesh. PS: Special note: regular 2D ultrasound will show mesh too so long as you have a stenographer that knows what they are doing. See Dr. Mueller on mesh on Youtube as well. Further, with Raz he’s not at the back-woods standard where he will only remove mesh if there is some gross infection. The truth is that no one knows what mesh of any material does over time within the human body. Its an experiment. Its not something that can be measured. Just as one example, there are over 1600 different enzymes within the human body. None of the mesh manufacturers have ever done any study as to how even one chemical in any mesh interacts with even one of these enzymes. And, its most likely something that can’t be done. The testing is crude, as an example – such as a study that might show that after 12 months the mesh has not failed and therefor the hernia has not reappeared. And, as most mesh is grandfathered in by the FDA under 510k they are not going to do the long term and short term testing as to how toxic or incompatible various mesh is with the human body. Not counting “voluntary withdrawal” the FDA has recalled 95 mesh devices since 2003. What the **** is going on! You can’t find staggering numbers like this in any other industry – not with airbags for vehicles – not with any other product. There are dozens of non-mesh means of repair of a hernia. Surgeons will tell you they will not last, but NIH and other studies show that (as just one example) the Shouldice method has a re-occurrence rate of single digits. Tell a surgeon that and it will shock them. Also, ask them why that would not be a logical option to risk or have another surgery down the road? That line of thinking will shock them as well. They are trained in the fast and dirty method of using mesh, but none were trained in its removal. You’re not going to find any surgeon or doctor willing to risk everything they own that mesh is a safe product. Keep in mind, mesh has no warranty offered. Even a small child knows that anything of value comes with a warranty. Demand a warranty from the surgeon and the manufacturer and none of them will give you one. My opinion is similar to that of Dr. Raz, never have mesh implanted. Find a surgeon willing to do a non-mesh hernia repair.