Tag Archives: Mesh erosion

What Does a Bladder Really Look Like? Pelvic Mesh Implants

The bladder and urethra play a key role in pelvic organ prolapse and stress urinary incontinence. The most frequent cause of SUI is early bladder prolapse.

Figure 1. Illustration from patent application 2004. “u” is called a urethra. “B” is called a bladder.

As we age, the bladder loses support from neighboring fascia, muscles, ligaments and tendons and drops down, folding itself over supporting structures underneath (and over slings or sutures after surgeries). The folding narrows the outlet or urethra. Imagine you are holding a rolled up throw rug under one arm to carry it, it folds over and the hole inside it narrows and flattens.

Figure 2. Offset oil funnel.

Mesh illustrations in journal articles, public information handouts, and patent applications are inaccurately show the urethra as a straw-shaped tube through which urine flows. See example in Figure 1. It is really a sideways funnel — “offset” like the photo of the oil funnel in Figure 2. Figure 3. is a healthy bladder.

Figure 3. Healthy non-prolapsing bladder.

How in the world did the patent office and the FDA clear this product, a mesh tape with wing-like extensions for treating female urinary incontinence US 8047982 B2, when the illustration clearly shows a tube and the device is designed to fit a straight tube?

It is no wonder patients become confused.

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Specialized MRI and 3D Ultrasound See Mesh – CT Can’t

Too many surgeons are sending patients to have a CT (Cat Scan) and,  when the radiologist says he/she can’t see mesh, tell the patient the mesh must have disappeared or dissolved when a CT cannot identify mesh. Plastic mesh does not dissolve. Sadly too many patients have their pain disrespected or disregarded when the problem is the doctor’s. Only specialized 3D Ultrasound with the right technician and radiologist (more on this coming in another blog soon) and specialized MRI’s with the skills to see it and read it can identify mesh.
Here is a graphic, courtesy of www.scbtmr.org that you can print out an take to your doctor.

MRI to find mesh

How to see mesh with an MRI

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Why Not Talk About Hernia Mesh?

I often hear that people think that there is too much attention paid to pelvic mesh victims at the cost to the hernia victims. After all, it’s the same material that is used, just cut in a different shape and placed in a different part of the body. And, truth is, pelvic organ prolapse is very similar to a hernia —both are caused by a weakening of muscles.

When I planned this blog, I decided to focus on one type of mesh because it is the one I know best and because I planned to go into depth with my research. In the back of my mind, I want to do another blog called the Hernia Mesh Owner’s Guide —some day.

POLY IS FOR CUTTERS

I hope hernia sufferers will look at the parts of this blog that apply to them because so many complications are the same: the denial by doctors, the nerve injuries, the salesmen in the operating room, the body’s foreign body reaction and the resulting autoimmune diseases, the cancer risk, the pain, loss of consortium, and the loss of ability to work. The great difficulties getting it removed are similar. Mesh shreds, twists, curls, folds, stretches, migrates, disintegrates, etc. no matter where it is placed.

In looking at why the two entities got separated in the first place, it is important to look at the history of several legal battles. Hernia mesh underwent similar legal attacks about 20 years ago. Many versions of hernia were removed, recalled, and quietly taken off the market. Many people sued and won and many lost. In the end, really, the makers won. They just changed a few elements of hernia mesh, paid for scientific studies that proved it was a great product, and went right on marketing it (the same thing is happening with transvaginal mesh).

So, when the makers found a new application for mesh, putting it into women’s most private, most valued and most delicate place, it cause NEW problems because of the anatomy of the pelvis. The lawyers, like chairs on a tipping ship, rushed to represent this new disaster and abandoned the hernia meshes because there is no longer any money in those cases.

Hernia mesh victims: please be aware that not a single victim made this separation; it was done by lawyers.

Sadly, there are probably no lawyers who represent hernia mesh victims unless it involves malpractice and even that is very hard to prove. BigPharma and the AMA put legislation in place long ago to limit the amount you can win. (Tort reform only benefits those entities). BigPharma also controls much of major media. Thank goodness for social media!

 

Peggy Day is working on a book to combine all these stories. She welcomes any input you may have.

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.




It’s the Polypropylene, Margaret. Not Fit For Humans

“For the want of a nail the shoe was lost,
For the want of a shoe the horse was lost,
For the want of a horse the rider was lost,
For the want of a rider the battle was lost,
For the want of a battle the kingdom was lost,
And all for the want of a horseshoe-nail.” Benjamin Franklin

Polypropylene has been found to be responsible for more deaths than just mesh patients as a recent examination of MAUDE reports to the FDA reveals. Meanwhile the plastic surgical mesh continues to be sold to patients.

The FDA’s recent announcement that it would reclassify only one application for pelvic mesh is a disaster for anyone wanting to do no harm because in its statement the agency promoted the use of synthetic surgical mesh for other pelvic applications. The only way to protect women from harm and avoid severe and devastating complications is to pressure the FDA to take all synthetic surgical mesh off the market—for good. A failure rate of forty percent (between 37.8 and 44.2%) and an erosion rate of 41.5% percent (see Figure 1. Lee, SY) represents an unacceptable iatrogenic mass casualty no matter how you toss the dice. It’s not the application (vaginal vs abdominal) or the surgical technique that’s harming many thousands of patients, it’s the material itself: the polypropylene.

Screen Shot 2016-01-15 at 8.44.26 AM

Polypropylene begins its life as crude oil, like any plastic product. Polypropylene is made up of a combination of ingredients combined to produce a product that will resist temperature change and keep its tensile strength when shaped into strands. Microscopically, polypropylene is a polymer—a large molecule composed of many repeating subunits. When polypropylene is stretched into a fiber, its strength is dependent on the quality of ingredients, the width of the strand, and the shape the strand.

438px-Polypropylene_tacticity.svg

Polypropylene Chain

Polypropylene is a favorite child of plastics scientists for containers, automobile parts, rugs, and countless other applications often illustrated on this blog. Patients are told the device is inert, completely safe, does not react with the body yet, it is the same material that is used to make thousands of household 81YYBL4yzwL._SY355_products, like scouring pads. Imagine taking Scotch-Brite Scrub pad and stuffing it into your most private spot.

Polypropylene reactions: Although marketers call mesh inert, when polypropylene materials come in contact with human tissue, both sides of the interchange suffer in very dramatic ways. Plastic mesh reacts, degrades, shrinks, curls, rolls, or migrates in a woman’s body. The human host is vulnerable to allergic reactions, foreign body responses, organ injury and migration of the material. If a patient reacts badly, she is in an alarming predicament: it is nearly impossible to take pelvic mesh out.

Allergic reactions to polypropylene are said to be rare and it is nearly impossible to predict who will react. Allergists disagree on what testing method to use to diagnose an allergy to polypropylene. Foreign body responses are much more common. A few pathologists took a look at hernia mesh and all of the samples they examined demonstrated rejection responses.

POLY IS FOR COAXIAL CABLESAlthough allergists believe that polypropylene carried a low allergic response, they say the longer it is left in the body, the more likely a reaction will occur. The skin is said to spit out a suture sometimes but it is nearly impossible for a body to spit out pelvic mesh.

The same material used in transvaginal mesh was once declared unfit for the human body. In 2013, lawyers uncovered emails showing that CRBard, tried to deny the company knew it was unfit until prosecution lawyers forced them to divulge secret company emails. On Thursday this week, Mostlyn Law filed an injunction against Boston Scientific alleging the corporation smuggled a resin which it added to pelvic mesh products between 2011 and 2012.

•∞•

Recently, I looked at who died from mesh and tripped onto a little known fact–one polypropylene suture, Prolene, was involved in one tenth of the deaths from Ethicon Corporation products—a quarter of all suture-related deaths reported to MedWatch. Over the past decade, Prolene failures were found in 39 of 417 Ethicon product deaths yet the FDA never warned the public about the suture and there is no evidence that the agency is even aware of the problem. MAUDE event descriptions characterized failures leading to deaths from breaks in the suture or knots which unraveled. Reading the stories, I could only imagine the surgeon’s umbrage. After many hours of high-risk surgery where he carefully applied his many years of training and masterful skills to save his patient’s life, he lost his patient—through no fault of his own. A piece of polypropylene suture broke or failed. “All for the want of a nail.”

Prolene maude deaths

Until polypropylene is removed from all medical devices, sadly, women and men will continue to suffer and die.

•∞•

Peggy Day is working on a book to combine all these stories. She welcomes any input you may have.

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.




22+ Crucial Questions to Ask Surgeon Before Mesh Surgery

 1. What is the operation being recommended? Is it necessary?

 2. Why is the operation necessary?

 3. I am aware that a bladder sling or hernia mesh is made of polypropylene and the material is the same, whether it is called a “tape” or “minitape.” I do not want polypropylene in my body. Are you willing to do the surgery without the use of synthetic surgical mesh? {__ I am allergic to polypropylene (check if applies to you).}

4. What are my alternatives to this procedure? (for example: I am aware the Burch Procedure has the same rate of success as synthetic surgical mesh. Are you able to do an alternative procedure)

 5. What are the benefits of the surgery and how long will those benefits last?

 6. What are the risks and possible complications of having the operation?

 7. What are my possibilities if I choose not to have the surgery?

 8. How many of these surgeries have you performed?

9. For which specialty do you have a board certification?  Urology, Urogynecology, Gynecology, General Surgery, Colorectal Surgery?  Other?

10. Where will my surgery be performed?

11. How long will my operation take?

12. Why type of anesthesia will be administered? If it is not a hospital, is there emergency equipment if I should have trouble with anesthesia? What is the plan for emergencies? 

13. What type of incision will be used? Will it be an open procedure, minimally invasive or laparoscopic?

14. Do you have to cut close to larger nerves to complete this operation?

15. What are my chances for getting new nerve damage?

16. What is the risk of mesh erosion into healthy organs from this surgery?

17. What are my chances for getting a wound infection? What is the hospital’s nosocomial infection rate? Do you provide antibiotic prophylaxis?

18. What are the specific risks of this procedure?

19. What will my operation cost? What else will I be charged for?

20. What can I expect during recovery?

21. How will my life be changed for the good or bad after this operation?

22. How many future surgeries might I expect after this surgery if there are complications?

Added question: Are you planning to have a salesmen in the operating room with you? I do__ do not___ prefer to have a sales representative in the OR with me.

(Click here for download of copy with fill-in-the-blanks.)


 

 POLY IS FOR ADA RAMPS


 

Places to check-up on your surgeon

It is important to have confidence in the doctor who will be doing your surgery and you can make sure that he or she is qualified. Each state licenses its physicians. Take the time to search for:

       “[Name of State] physician license verification” for your own surgeon.

Make sure to check for disciplinary actions taken or whether the license is current. Example here.

  • Ask your primary doctor, your local medical society, or health insurance company for information about the doctor or surgeon’s experience with the procedure.
  • Make certain the doctor or surgeon is affiliated with an accredited health care facility. When considering surgery, where it is done is often as important as who is doing the procedure.

From PelvicMeshOwnersGuide.com                        © Peggy Day November 27, 2015





25 Crucial Questions to Ask Your Mesh Removal Surgeon

1. What is the operation being recommended? Is it necessary?

2. Why is the operation necessary?

3. What are my alternatives to this procedure?

4. What are the benefits of the surgery and how long will the benefits last?

5. What are the risks and possible complications of having the operation?

6. What are my possibilities if I choose not to have the surgery?

7. How many of these surgeries have you performed?

8. For which specialty do you have a board certification?  Urology  Urogynecology  Gynecology √ General Surgery  Colorectal Surgery?  None Other 

9. Where will surgery be performed?

10. How long will my operation take?

11. Why type of anesthesia will be administered? If it is not a hospital, is there emergency equipment if I should have trouble with anesthesia? What is the plan for emergencies? 

12. What type of incision will be used? Will it be an open procedure, minimally invasive or laparoscopic?

13. If mesh is embedded in my bladder or urethra, do you have the skills to take it out?

14. If mesh is embedded into my obturator spaces, do you have the skills to take it out?

15. If mesh has eroded into my colon or rectum, do you have the skills to take it out?

16. If I have more than one mesh, do you have the skills to find it and take it out?

17. If mesh is close to a blood vessel, do you have the skills to remove it?

18. If mesh is close to a large nerve, do you have the skills to remove it with the least amount of damage?

 19. What are my chances for getting new nerve damage?

 20. What are my chances for getting a wound infection? What is the hospital’s nosocomial infection rate? Do you provide prophylaxis to address biofilm-related infections?

21. What are the specific risks of this procedure?

22. What will my operation cost? What else will I be charged for?

23. What can I expect during recovery?

24. What are the ways will my life be different after this surgical procedure?

25. How many future surgeries should I expect?

(Click HERE for Printable Version with Fill in the Blanks.)


Mesh is not for bodies in motion

Places to check-up on your surgeon

It is important to have confidence in the doctor who will be doing your surgery and you can make sure that he or she is qualified. Each state licenses its physicians. Take the time to search for:

       “[Name of State] physician license verification” for your own surgeon. Example here.

Make sure to check for disciplinary actions taken or whether the license is current.

  • Ask your primary doctor, your local medical society, or health insurance company for information about the doctor or surgeon’s experience with the procedure.
  • Make certain the doctor or surgeon is affiliated with an accredited health care facility. When considering surgery, where it is done is often as important as who is doing the procedure.

 


 

  • If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here. Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.


26 Pelvic Mesh Complications Your Doc Never Mentioned

Welcome to the Pelvic Mesh Owner’s Guide! This page is like a Table of Contents.

Over 4.2 million women have the implants and a quarter to a third of them suffer debilitating complications while doctors say, “It’s not the mesh.” The FDA warned in both 2008 and 2011 that complications are serious. Too many women are finding out they were right all along, it is the mesh. 

If you’re having trouble with mesh, here is a list of 26 complications in the Pelvic Mesh Owner’s Guide. Sign up for updates to learn more and take the first step on your healing journey.

POLY IS FOR CABLES copy

26 Mesh Complications Your Doctor Never Warned You About:

1) Intractable Pain (pain that doesn’t go away) – Some people wake up from implant surgery knowing something is wrong. It is too tight or the pain is beyond measuring. Part 1 talks about the post operative pain from pelvic mesh & Part 2 is one woman’s journey with pelvic mesh pain.

2) Excessive BleedingBleeding happens but when is it too much? When to call the doctor? How to regain strength after heavy bleeding

3) Urinary tract infection, Kidney infection – Urinary tract infections are serious health-risks and can involve the bladder and kidney. When mesh is stuck in the bladder it continually irritates the bladder until it is removed surgically. Learn how to prevent UTIs and test yourself at home and to distinguish a bladder infection from a kidney infection.

     4) Wound infectionsA bladder sling can act like a petri dish harboring and incubating strong, sometimes drug-resistant bacteria. Left undiagnosed, they can lead to a delay in wound healing, even open up wide and deep surgical wounds and putting your life at risk.

5) Bladder injuryA slip of the knife, a puncture from an ice-pick like trocar, sling pulled so tight that it cuts the bladder. A bladder injury is one of the most difficult to repair. One study says it happens 10% of the time, another say 75%!

6) Bowel InjuryWhen a part of the bowel is nicked, fecal matter seeps into the interior of the body, when it the diagnosis is delayed or completely missed, patients become extremely ill.

7) Fistula (a hole between two organs) – Imagine your urine draining out of your vagina or your stool coming out. Fistula is all to common and deeply embarrassing for women.

8) Wound Opening Up After Stitches(also called dehiscence) – You think your surgery is healing and you are trying to get back on your feet and back to normal. Then your wound starts to open up. Dehiscence delays healing for a very long time.

9) Erosion – (also called exposure, extrusion or protrusion) As many as one patient in three experiences erosion from mesh. Would you agree to mesh if you were told the odds that you wouldn’t enjoy sex ever again were one in three?

10) Incontinence “I sneeze, I pee.”The odds that mesh surgery won’t cure your incontinence is the same as other surgical repairs: one in three.

11) Urinary Retention “I can’t pee right.”A mesh that is implanted too tight can slow down or stop your urine stream for about four percent of patients. Why does your surgeons “handedness” (right- or left-handed) affect your outcome?

12) Dyspareunia – pain during sexual intercourse One study found 26% of women found sex too painful after mesh surgery.

13) Multiple surgeriesWhen things go wrong, often the solution is another surgery and another. Some women have had over a dozen surgeries to correct mesh complications. More surgery = more scarring.

14) Vaginal scarring/shrinkage – Vaginal scarring: one of the most emotionally and physically difficult problems to heal.

15) Emotional DamageNaturally, an injury to a woman’s re-creative center causes emotional pain but can we allow doctors to blame the women?

16) Neuro-muscular problems – nerve damageStinging, burning, pins-and-needles, numbness all are signs of nerve damage. Even the way your body was positioned during surgery can cause nerve damage.

17) Obturator Nerve – Symptoms in your mid-thighs (saddle region).

18) Ilioinguinal/iliohypogastric Nerve – Symptoms in your pubic region.

19) Genitofemoral Nerve – Symptoms in your inner groin.

20) Femoral Nerve – Symptoms in your outer thighs

21) Pudendal Nerve Entrapment – Symptoms in your “sit spot.”

22) Fibular Neuropathy – Symptoms on the outside lower legs

23) Saphenous Nerve – Symptoms on your inner lower legs

24) Piriformis Syndrome – Symptoms across your buttocks.

25) Sciatica – Symptoms all the way down your leg.

26) Peripheral Neuropathy – Symptoms from the bottom of your feet and up your legs, even your hands can be involved.

MESH IS NOT FOR BODIES 2


If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.

Did a Salesman Oogle Your Pelvic Mesh Surgery? – Salesmen in the OR

You may be surprised to learn just how your doctor purchased the pelvic sling he put in your body. Truth is, he didn’t have to lift a finger. His sales rep brought it to him. Moreover, there is a good chance your salesman watched your doctor put it in you and, he may even have “scrubbed in” and performed part of your surgery.

It is no accident that your surgeon “forgot” to mention the manufacturer’s rep might be in your surgery. Manufacturers are well aware that the practice is very controversial and don’t want you to know. David S. Hilzenrath discovered the obfuscation while preparing for his 2009 Washington Post story about salesmen boosting sales by participating in operations:

“(S)ome companies want nothing to do with a story about sales rep in the operating room.
“‘I would hope that you would not mention Boston Scientific in your story,’ a spokesman for that company e-mailed.
“Major device makers such as Johnson & Johnson, Stryker and Zimmer declined to arrange interviews for this article.”

POLY IS FOR ELECTRIC WIRES

Mesh injured women began realizing that manufacturers invaded their surgeries, not when they were asked to sign a consent for an observer to be there while their genitals were being operated on, but afterward when they found evidence by reading their own charts. Detail men around the world routinely attend surgeries to make sure doctors don’t use competitors’ products.

In 2008, Ronda Yancy (not her real name) was appalled when she retrieved her own medical record: “I found out, after my surgery, that a Johnson & Johnson Gynecare sales representative was in the O.R. with me.”

Yancy, who died at 52, after living her final years dealing with mesh complications and a string of illnesses, had been implanted the Gynecare Prolift (a polypropylene-based surgical mesh device used to treat pelvic organ prolapse). The Prolift was first introduced by J&J in 2005 without an F.D.A. approval and was soon the source of alarming federal complaints. It wasn’t removed from the market until a year after Ronda’s death, in 2012.

Ronda’s pelvic sling sawed itself out of the space it was supposed to be and into her vagina, causing her suffer years of infections and disabling pelvic pains. “I sure never thought that some day I’d be crying just cause I can’t stand to wear underwear anymore, much less pick up my grandkids,” said Ronda. “After the surgery I couldn’t walk properly and am in constant cutting pain. Doctors say I am the first patient to ever have problems.”

After Ronda posted in an online support group, others began to look at their operative reports and at least three found that salesmen had been in the room with them while they slept. One said she felt like she’d been “drugged and raped.”

One nurse wrote to the group, “The hospital loves for the reps to come in because their labor is free and they provide free products to use. The reps bring in pizza dinners and cater lunches from time to time and so the O.R. staff loves them too.

Trendelenberg

Jack-knife position for vaginal surgery. (Posed by clothed woman)

Bill Mackay, a high school drop-out and device salesman who performed the major part of a surgery that crippled a man in 1975, was never mentioned in that patient’s chart. He later wrote in a tell-all book, Salesman Surgeon, that he took over lead surgeon, David Lipton’s position during a hip replacement, ordered the nurse to hand him sharp instruments, hammered and chiseled away at bones and removed one hip prosthesis and implanted another. He said it was the “one of nicest pieces of surgery (he’d) ever seen or done”  but the patient, Franklin Mirando didn’t agree. The forty-two-year-old service station owner never walked again after Mackay was done with him.

In 1977, criminal charges for assault and misrepresenting business records were made against salesman Mackay, two surgeons, a nurse and the Smithtown General Hospital. Investigations were launched by both state legislators and the Sulfolk County Medical Society. Despite all the hoopla, the charges were eventually dropped and the manufacturers across the country began to have free rein inside operating rooms.

What could possibly go wrong when you send wet-eared salesmen into an operating room? In 1998, another device rep was sued after he operated a machine during a fibroid removal surgery and 30-year-old Lisa Smart died within hours. Lawyers found Lisa’s surgeons had botched many aspects of her surgery including overloading her with fluid. She drowned. Her husband’s lawyers were also shocked to discover Johnson & Johnson sales rep, David Myers, was operating the dials on the unauthorized machine that delivered electrical impulses to her uterus. “The patient was never given the chance to consent to the use of the equipment or the presence of the salesman,” the New York Times reported at the time. The hospital a was fined $30,000 and Myers disappeared from sight. Yet again, in the face of another disastrous outcome, device marketers stepped up their pace.

Classes for prospective salesmen include topics like: “how to get inside a surgical suite without an invitation” or how “to sell without making the surgeon feel that he’s being sold” or even “the art of engaging surgeons in conversation.”  Candidates are invariably young, good-looking go-getters whose training lasted no longer than a few weeks. Although a college education is recommended, it is not always required. Despite the fact that pelvic mesh sellers are given an unfettered view of your genitals, there is no evidence that they were ever required to go through a background check–although your nurse sure was.

bathing-machine-with-men-ogling-women

Recently, two pelvic mesh recipients found out that salesmen had been with them by reading their charts. One woman noticed a set of unfamiliar initials next to “Ass.,” or assistant surgeon, on her operative report and set out to investigate. She found another document with the full name spelled out and remembered her surgeon mentioning he was going to “ask the advice” of his salesman with the same name. She was never told he would be there. A modest woman, she can’t digest the fact that a total stranger was afforded a clear view of her most private area. As if to compound the emotional harm from realizing a salesman had seen her tilted backward, legs spread on an operating table, she said the same sales rep later visited her in her home–right after she made an official complaint about her mesh injuries.

It the manufacturers are working hard to hide the presence of salesmen in operating rooms, there is no way to know if, when your transobturator-tape was pulled to tight, it was really the detail man who tugged too hard on that trocar or if his scrubbing technique was not up to standard and that’s why you had a post-operative infection.

If you would like to look up your medical record, be prepared to put a little wear and tear on your shoe leather. Go to your hospital medical record department in person and ask for the complete report of your surgery, including the label for you implant. Most medical record departments provide only the surgeon’s dictated report, especially when you ask by mail, but there is a lot more paperwork than that. Look for your consent, your anesthesiologist’s minute-to-minute accounting, your nurse’s count of sponges and instruments, and your interoperative report, which should contain the names of everyone who attended your surgery.

Yancy felt she was invalidated every step of the way after her implant. Doctor after doctor told her, “Mesh is the gold standard, it can’t be the mesh.” She summed it up in one word saying she had been “Gaslighted,” a reference to the 1944 movie, Gaslight, in which Charles Boyer pulled dirty tricks on Ingrid Bergman and then told her she must be going crazy–all the while pretending he had her best interest at heart. What a perfect phrase. Are you being Gaslighted?


Peggy Day is working on an investigative report on pelvic mesh salesmen in the operating room. She welcomes any input you may have about the questionable practice.

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.

Handling a Trip To The Emergency Room With Mesh Trouble

Once upon a time, a more experienced emergency room nurse told me that doctors are bad with headache and backache patients because they can’t see the pain like they can see a broken arm or a heart attack. It is infinitely more rewarding for an ER doctor to put a cast on an arm or order the best medication to stop a heart attack in its tracks than to give a shot to a pain sufferer who will softly murmur a thank you, wrap herself in her blanket, and walk out the door with her head down and her husband carrying her discharge papers and her purse.

Just remember—when you are about fantasizing recreating Shirley MacLaine’s hospital scene, and screaming “GIVE HER THE SHOT!” at the nurse, your nurse is probably fantasizing about reenacting Jerry Maguire’s quitting scene.

POLY IS FOR EMERGENCY EXITS

Here are my thoughts to help you have a successful ER visit.

 

 

In a successful ER visit:
◆    You are treated in a timely manner with respect to circumstances
◆    You are treated with respect
⁃    Your privacy is respected
⁃    You are kept comfortable
⁃    All team members speak to with you as an equal participant in your care

◆    Staff:
⁃    Addresses your problem
⁃    Offers a correct and thorough diagnosis
⁃    Gives you appropriate treatment
⁃    Gives you enough treatment to get you through to your next doctor visit

Now, here are a few suggestions to help you get the best out of your ER visit:
◆    Expect to wait
⁃    The ER uses a system of priorities that is very similar to Mazlow’s Hierarchy with your ability to get air at the bottom platform of the pyramid. Next come your heart beat and circulation, and on and on…
◆    Make yourself personable

⁃    Be honest & don’t exaggerate. Triage nurses have seen a lot of people in pain and a lot of injuries and illnesses and have a natural instinct for dramatic behavior. If they cannot see your pain or injury, help them understand it. Try describing it with commonly understood details.
⁃    Ask for the help that you need. Explain why you are there and what you expect as an outcome of your visit. For example, say, “I have a plan to see my doctor in five days but I need pain medication to get me through until then.”
⁃    If you feel you are being demeaned or talked down to, turn it around without sarcasm and ask the doctor what he recommends you could do or what he might do in the same situation. If you are out and out mistreated, ask for another physician (or nurse).
⁃    If you have an expectation when you arrive that you will be mistreated, check it at the door. Don’t start by saying, “I have pelvic mesh and I am part of a lawsuit.” Those are toxic words to a team that is practicing defensive medicine— which is what all ER’s do.
maslows-hierarchy-of-needs

I found another blogger,  unnamed, who addressed the topic, “ER visits” for chronic pain sufferers. I’ve abbreviated a few of her suggestions:
◆    The emergency room is the last resort after trying every solution at home and calling your doctor or patient care team or going to an Urgent Care center.
◆    Make sure you have a regular physician or primary care doctor who manages your care.
⁃    Look at local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, ask their staff whom they would recommend.
◆    Be ready to show them that you tried to contact your regular doctor before going to the ER
⁃    The ER is more sympathetic to the patient who has been told to go the ER by his doctor or his team.
⁃    It makes it clear you are only using the ER as a last resort.
⁃    Bring a letter from your doctor or your most recent discharge papers from your doctor. Also, bring a copy of your pain plan if you have a pain management doctor.
◆    Bring a list of medications rather than rely on your own memory.
◆    Work cooperatively with the ER staff and don’t call negative attention to yourself. You may be in agonizing pain but the staff is first deciding whether you are exhibiting “drug seeking behavior,” so don’t give them any opportunity to decide wrong.
◆    If you have a rare condition or one that is frequently misunderstood or is thought not to cause pain, bring information about your condition. (I can’t tell you how many times people did that when I worked in the ER. We were grateful not to have to look it up.)
◆    Bring someone with you. This will help because it is hard to explain things when you are sick or in pain and they can help. They also can remember details for you.
◆    If possible, use the same ER as much as possible because doctors become suspicious when they discover visits to multiple hospitals (Hint: They call each other to say so!)
◆    Keep a folder handy with all your details written down so you don’t have to try to put it together in the midst of horrific pain.

Finally, if you feel you’ve been mistreated after your ER visit, please do at least three of these things:
◆    Write your story down.
◆    Contact the Medical Director of the ER during business hours.
◆    Contact the Medical Director of the hospital during business hours.
◆    Contact the Board of Medical Examiners or licensing bureau for your state.
◆    Send your description of your visit, by snail mail letter to each of the people above and include a letter to the offending doctor as well. Who knows? He may see the light.
◆    One final note, after you are treated well, drop a short note to the ER and you can be sure it will be given to your doctor!!

Have you been treated well or badly by an ER? What’s your take?

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Published under Fair Use Act as Educational


 

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.

 

Burning Feet – Another Mesh Trouble

Some people express some surprise that even nurses have fallen for the doctor’s explanation that they should have a pelvic mesh implant, thinking that nurses would have done more diligent research. Nurses were trained to believe that all of the drugs and all of the devices they used had been carefully studied and approved. (Note: none of it was ever approved, it was “cleared.”) In most cases, only after being injured themselves, do they begin to do the careful research. One such nurse wrote this about peripheral neuropathy:

 “I have found that neuropathy is fairly common with mesh patients. Yes, the vagina is considered contaminated, so the surgery is considered ‘clean contaminated’ surgery. The real problem is that these implants should have never been implanted in a contaminated area.
“I kept telling my neurologist that my pelvis and feet and legs are connected. I can go into detail about why my theory we develop neuropathy makes sense to me.
“My theory is that all the nerves in the pelvis—part of the sacral nerves and L4-5 from the sciatic nerve (are involved). Because of severe inflammation, and foreign body response and mesh pulling on the nerves, we develop neuropathy. The gynecologist I am seeing here in Charlotte confirmed what I thought: that the pain we have from the pudendal nerve and the neuropathy in our feet and legs are related.
“The caudal epidurals stopped the pain and tingling, I can have another in August, I still feel some low level tinging and burning, but nothing like it was. The nurses told me they are treating other mesh patients with the same symptoms I have.
NervousSystem PERIPHERAL NEUROPATHY SHADING
Peripheral neuropathy is nerve damage to the nerves to your arms, hands, legs and feet—your periphery. The pain can be felt as tingling, burning, or feeling like you are wearing a stocking or glove. Some say ‘pins and needles,” others that their feet are on fire. More than a hundred types of peripheral neuropathy have been identified. Today’s blog is an overview—look for more about this soon from Mesh Troubles. Peripheral neuropathy (PN) after mesh surgery can be related to many causes.

Here are just some things that cause peripheral neuropathy:

•    Vitamin deficiencies
⁃    Alcoholism
•    Hormonal deficiencies
•    Autoimmune diseases
⁃    Diabetes mellitis
⁃    Lupus
⁃    Rheumatoid arthritis
⁃    Guillain-Barre syndrome
•    Compression above area with symptoms
•    Exposure to poisons
⁃    Heavy metals
⁃    Medications
•    Infections
⁃    Viral or bacterial infections
⁃    Lyme Disease
⁃    Shingles
⁃    Epstein-Barr
⁃    Hep C
⁃    HIV/AIDS
•    Inherited disorders
⁃    Charcot-Marie-Tooth disease
⁃    Amyloid polyneuropathy

There are three different kinds of nerves that can be affected by PN: sensory nerves that receive sensations such as heat, pain, or touch; motor nerves that control how you muscles move; and autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder function.
Peripheral neuropathy w foot drop copy
Symptoms:
◦    Gradual onset of numbness and tingling in your feet or hands which may move upward into your legs or arms
◦    Burning pain in affect areas
◦    Sharp, jabbing or electric-like pain
◦    Areas sensitive to touch
◦    Lack of coordination
◦    Muscle weakness or paralysis (motor nerves)
◦    Bowel or bladder problems (autonomic nerves)
Peripheral neuralgia may affect one nerve or more, one area or several different areas.
Treatments: First the good news. Correcting the underlying problem may heal PN. “Peripheral nerves have the ability to regenerate axons, as long as the nerve cell itself has not died, which may lead to functional recovery over time. Correcting an underlying condition often can result in the neuropathy resolving on its own as the nerves recover or regenerate.”

Self-care including maintaining optimal weight, exercise to reduce cramps and improve muscle strength and prevent muscle wasting, a healthy diet to correct vitamin deficiencies an minimize or eliminate sugar intake, limiting alcohol and exposure to toxins and medications, treatment of injuries, stopping smoking to improve circulation, meticulous care of your feet including visualizing them frequently can improve your symptoms.

Non-steroidal anti-inflammatory medications like ibuprofen can help milder cases and narcotic medications may be effective. There are some creams or ointments like Llidocaine or Capsaicin may help.

A “TENS unit” (transcutaneous electrical nerve stimulation)  can provide pain relief for some people. The therapy involves attaching electrodes to your skin at the site of your pain or near associated nerves and then administering a gentle electrical current. TENS has been shown in some studies to help diabetic peripheral neuropathy.

MESH IS FOR plastic_mesh_for_chicken_breeding
Sometimes hand or foot braces or orthopedic shoes help reduce pain or prevent injuries. Acupuncture, massage, and herbal medications help as well. Surgically, releasing a nerve can improve compressions injuries when a single nerve is involved.

Your physician may prescribe antidepressants but we recommend caution with those types of medication because one of the most common side-effects of antidepressants is neuropathy. Recently, anti-convulsant medications have been used to control the pain but  they are fraught with side-effects that are worse than the initial problems.

The very same process that was used to clear (mind you, they never say “approve”) plastic mesh to be irretrievably placed inside your body, is the one that cleared the drugs to be prescribed for nerve pain. The list of side-effects from these drugs (here is one example) is enough to make you run for the hills, yet they are routinely prescribed for peripheral neuropathy—some of them even cause PN! It makes no sense to me. Does it to you? You are the one who has to live with long-term effects for the rest of your life. Not the doctor you saw for fifteen minutes. What you you think about it? Isn’t your life is too valuable to risk taking a medication, like Paxil, that causes you to have suicidal thoughts in the middle of struggling with the devastating consequences of synthetic surgical mesh?

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, check the list of support groups here.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you if you are helped by what you read here or if you need to know more about any particular topic. Comment below or email me privately at daywriter1@gmail.com.