News Feed Discussions Seeking an experienced hernia mesh removal surgeon

  • Seeking an experienced hernia mesh removal surgeon

    Posted by jerseattlewa on January 26, 2018 at 6:20 am

    SEEKING AN EXPERIENCED HERNIA 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. The pain increases unless I take the Cipro and with it the pain decreases and sometimes I can go off it for periods of time (shorter as time has gone on). 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 it’s 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 it’s 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 it’s 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 it’s 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. It’s an experiment. It’s 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.

    I’m aware of how mesh embeds itself. Point of clarification: My problem is minimal or moderate as to pain (extreme on occasion) 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. Again, this was a doctor that I thought I had vetted as to having prior experience (maybe he did a mesh removal job in some other part of the body). 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 hernia mesh removal and in my experience I’ve only found 2 with what they implied was extremely limited experience, bad results or they thought it risky and neither seemed to know much of anything about proper diagnosis and had mistaken or incorrect knowledge. There is 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. So, I seek a miracle in finding a surgeon like Dr. Raz, MD or Dr. Mueller, MD (both urogynocologists = work on females) that know what diagnostic imaging to use and can remove mesh successfully. I got an appointment with a local urogynocologist in Seattle and later got a call back that the surgeon only would see females. But, this was early on in my searching – last year. And, just because they remove a lot of mesh from females that was implanted for prolapse does not mean that they would have experience in removing hernia mesh, but when you can’t even get into see one, you can’t find out. Anyone out there have a solid referral to a surgeon that actually knows how and has removed hernia mesh without castrating a testicle of the patient?

    Good intentions replied 5 years, 11 months ago 3 Members · 10 Replies
  • 10 Replies
  • Good intentions

    Member
    July 25, 2018 at 9:49 pm

    Good luck jer. The healing process after mesh removal seems to take much longer than the healing after implantation. Probably because the tissues have been ravaged for many years by the mesh and the collagen types are messed up. Plus there is a lot more of it, in the wrong places.

    I’ve found that letting things settle down completely while trying to get back in to shape helps a lot. Exercise, let things settle way down to a steady state, then start again. In other words, don’t try to push through to strength and health like you might with a normal injury. It’s a very slow process, at least in my case.

    Can you share any details of what Dr. Brown found? It won’t be a surprise if everything looked “normal”. Take care.

  • Chaunce1234

    Member
    July 24, 2018 at 9:35 pm

    Thanks for the update on your case. I’m sorry to hear about the infection, but hopefully overall things are improving.

    Have your original aggravating symptoms changed since your surgeries? Are you feeling any better, worse, same, or different? Aside from the hematoma/infection of course.

    Can you share any additional thoughts on Dr Brown and the surgeries?

    Follow the wound care clinic instructions closely and eat as healthy as possible (try to eat more protein and vegetables than usual, and try to avoid excess sugars and junk food). I know that some clinics recommend to drink protein shakes too, specifically the “Ensure” and “Ensure Enlive” drinks with HMB protein, so that may be something to look into and ask your doctors about. Just throwing out some ideas, hopefully they are helpful, I’m just a fellow patient and not a doctor so of course you’ll want to follow the docs orders first.

    Best of luck, heal up and keep us updated on your case and progress!

  • jerseattlewa

    Member
    July 24, 2018 at 2:33 am

    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.

  • Chaunce1234

    Member
    April 13, 2018 at 11:30 pm

    Any update on your progress or case? How are you doing now?

    A few other surgeons elsewhere in the USA who perform mesh removal and re-do hernia surgery:

    – Dr Igor Belyansky in Annapolis MD

    – Dr Bruce Ramshaw in TN

    – Dr Jonathan Yunis in FL

    – Dr Robert Tomas in FL (may be open repair only?)

    – Dr Brian Jacobs in NYC

  • jerseattlewa

    Member
    January 28, 2018 at 9:55 pm

    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

    Member
    January 27, 2018 at 12:03 am

    “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.

  • Chaunce1234

    Member
    January 26, 2018 at 11:00 pm

    I wrote a longer reply but it was held for moderation, hopefully this shortened version will go through.

    Anyway, you will want to seek out a specialist with experience specifically in mesh removal for the type of hernia repair you originally had (open vs laparoscopic), then discuss your specific case with them.

    Here are a few potential leads on the west coast, you may need to travel unfortunately:

    – Dr Peter S Billing in Edmonds WA

    – Dr Andrew Wright at UW Seattle (unclear about mesh removal experience, contact office for more details)

    – Dr Robert Martindale at OHSU Oregon

    – Dr Shirin Towfigh in LA California (she runs these forums)

    – Dr David Chen at UCLA California

    – Dr William Brown in Fremont California

    There are others elsewhere in the country too if location does not matter to you.

    It may be helpful when presenting the case to doctors to bring your original operative report, medical records, details about original surgery, list and description of specific troubling symptoms, list of what helps and what makes it worse. Having important elements in bullet points can help them scan data, that’s just my observation from being a fellow patient.

    Best of luck, and keep us updated on your case and decision making.

  • Chaunce1234

    Member
    January 26, 2018 at 10:51 pm

    @jerseattlewa I am sorry you’re going through this. Out of curiosity, do your symptoms respond to regular anti-inflammatories like Ibuprofen or Naproxen? Or is an anti-biotic like cipro the only thing that brings relief?

    Removal of mesh is a complex operation that requires significant experience and knowledge of the complex groin anatomy. You will want to seek out a doctor who has specific experience removing the type of mesh you had implanted, preferably using the same method you had the surgeon done from the original operation (ie; laparascopic removal for laparoscopic mesh repair, open removal for open mesh repair).

    You may need to travel because it is a highly specialized procedure.

    Some names that I have seen repeatedly in your general region (Washington / Oregon), and that have been reported on these forums that could be helpful include:

    – Dr Peter S Billing in Edmonds, WA, apparently has some experience with mesh removal as reported by these forums and elsewhere online

    https://www.evivamd.com/about-eviva/meet-our-physicians-providers/peter-s-billing

    – Dr Andrew Wright at University of Washington Seattle, as head of the UW hernia center presumably has some experience on this matter but you should call to verify

    http://www.uwmedicine.org/bios/andrew-wright

    – Dr Robert Martindale at OHSU in Oregon, a patient on these forums reported having her problematic mesh removed and the original hernia repaired without mesh

    https://www.ohsu.edu/providers/robert-g-martindale/332DF38FFB324681949B3E75BD3B492B

    Elsewhere on the west coast are the following options in California:

    – Dr Shirin Towfigh in Los Angeles, has extensive experience with mesh removal (she runs these forums)

    http://www.beverlyhillsherniacenter.com/

    – Dr David Chen at UCLA in Los Angeles, California, performs mesh removal and has a lot of experience

    https://www.uclahealth.org/david-chen

    – Dr William Brown in Fremont, California, has performed open repair mesh removal

    http://www.sportshernia.com/

    Elsewhere in the country, known surgeons with mesh removal experience include:

    – Dr Bruce Ramshaw in Tennessee

    – Dr Jonathan Yunis in Florida

    – Dr Kevin Petersen in Nevada, for removal of open repair mesh

    – Dr Robert Tomas in Florida, for removal of open repair mesh

    – Dr Brian Jacobs in NYC

    There are perhaps others as well that I am forgetting, if anyone knows of any do chime in.

    Best of luck and keep us updated on your case.

  • jerseattlewa

    Member
    January 26, 2018 at 9:02 pm

    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.

  • Good intentions

    Member
    January 26, 2018 at 6:31 pm
    quote jerseattlewa:

    SEEKING AN EXPERIENCED HERNIA MESH REMOVAL SURGEON.

    I had mesh implanted 16 years ago for a hernia.

    Was the procedure open or laparoscopic? Probably open? It might be a factor in choosing a surgeon.

    Ironically, I think, when choosing a mesh removal surgeon you’re in about the same boat as when you were choosing a hernia repair surgeon.

    I think that there are doctors at the University of Washington who remove mesh also.

    Good luck.

    p.s. your posts are very long and unformatted and difficult to read. Even though you’re frustrated and have been dealing with the problem for 16 years, you still have to make it as easy as possible for other people to help you. Especially the physicians since they live with the modern bureaucracy on a daily basis. Their professional lives are complicated. Get your medical records compiled and in order. Write a short concise direct summary of your problem, and make it available. I’ve found that sending letters helps because they can read them (or a medical assistant can read them and summarize) at a convenient time, and because your thoughts will be clearer. The letter needs to be short, direct, and to the point though. If your graduate work wasn’t in medicine, your thoughts on the field will be discounted. Stick with history and symptoms, I’d say.

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