This is Why You Hurt with Mesh Inside by Stacy Dean Seymour

Today’s blog is by a guest host: Stacy Dean Seymour

Why we hurt?
The anchors are thread through the sacrospinous ligament that parallels the pudendal nerve and branches. (Nerve damage) They are anchored with a grommet on both sides of pelvis. This is why you have pelvic pain, hip pain and every pain, as well as lower back pain. Then two more needles are thread through blindly ( by touch and expert: cough cough) to both sides of obturator foramen. This is why you are unable to sit, your hips are killing and your bum feels like glass is in it.

And as time goes by- providing you didn’t wake up in the PACU hanging from the ceiling saying “WTF” the mesh tightens as you heal, it calcifies like hard melted plastic, and or when you heal your body heals from the inside out and eventually rejects it and or begins the protrusion into your orifices. Your bodies autoimmune response kicks in immediately and produces killer cells-that begins another cascade of immuno response! I can’t sleep tonight and saw a few new people and took my nursing knowledge, research and personal experience of WTF happened to me. I hope this helps and sometimes visualizing is the best way to understand a process. I wish you all well and hope we all can find peace in some shape or form. – Stacy Dean Seymour

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Can You Help Keep Pelvic Mesh Owner’s Guide Going?

Finally, after all this time, it has become a little too expensive to keep this page going on a limited income. If you can, would you donate a bit to help defray the costs of keeping it on the internet?  Specity your own amount.

With much heartfelt appreciation, Peggy


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Eyes Wide Open – Poem by Leslie Capel Werner

Eyes Wide Open

I can hear my silent scream bursting and pounding through my mind…
Feel tears flow freely down my face
In sorrow
Not only for me but also for you.

How do selfish hearts of our loved ones turn away from our suffering
As their time is spent meaningless
while people they claim to love are dying with their eyes wide open?

It is not their fault-they are also suffering the loss of us
Their fathers and mothers, husbands and wives, sisters and brothers

Naruto Whirlpool, Awa Province, from the series Views of Famous Places in the Sixty-Odd Provinces Circa 1853

We all will go when it’s our time they say
But what about us whose time was robbed
By greedy people who put money before humanity?

I cry for me but more for you
Me the victim, you the perpetrator-
How dark your soul is
To profit from my suffering.

Do you really think the years you stole from me
Will be added to the sum total of your time spent living in the lap of luxury?

No, no, no-for surely as I surrender the last days of my life because of you
I will spend my eternity with God who loves me.
Surely, when your end draws near, the score will be settled
And you will die with your eyes wide open.

Open to see and feel the fire surround you, the sum total of it gathered from the burning you afflicted upon us.

Your greed will turn to desperate wanting for anything to soothe you but your cries will go unanswered
Because you stole everything we had.

Though dead you will feel our collective pinches and pulls and searing pain in your spiritual body’s groin
You will feel your phantom skin itch a zillion fold as the plastic seeks to escape but there is no way out.

Your skeleton will scream for the bundles of nerves that will be bound up in places to be relieved from where your pelvis use to be and still is.

You will see your victims that you damaged and violated off in the distance and you will beg for mercy but it will not come.

Telepathically we will transport to your mind all the memories of when we came to you for help and you knowingly took our lives in your hands and murdered us.

You will remember loud and clear, all of our faces and how we came back to you to share our suffering and beg for relief

Clearly you will remember your apathetic response as if it is amplified and then you will gaze upon our faces

As we stand together en masse and
Return our apathy to you.

Your suffering will be eternal
As you lie there forever
Dead with your eyes wide open.

Leslie Capel Werner – February 18, 2018

Vesica Procedure Gives Birth to Pelvic Mesh – Pre 1996

[Trigger warning: This story contains graphic surgical details.]
If you have a retropubic bladder sling, you may want to get familiar with the procedure that paved the way for yours and all pelvic meshes. The Vesica technique was used to implant the ProteGen, the evil grandmother of all transvaginal mesh.

The story below was pieced together from historical patent applications, MAUDE reports, and donated personal stories in order to create a composite patient with the pseudonym Abbey Nordell. On the day of her operation for a little bladder leak, her surgeon, Brian Malikoff (also a pseudonym), asked the young woman who peed when she sneezed to sign a consent for a “Vesica Procedure” before he headed off to “scrub in.”

A short while later, Nordell was flat on the table, covered with a sheet,  ankles in stirrups when Malikoff swept into the operating room.. After saying hello, Malikoff watched his sedated patient drift off to sleep. Pushing his foot on a floor pedal, he tilted the table backward until his patient’s head was lower than her hips. The circulating nurse adjusted a powerful light behind his head until the young doctor could visualize the area of Abbey’s body she normally kept very private.
With a gloved hand, Malikoff unfalteringly inserted a sixteen-millimeter diameter Foley catheter, pushed a tablespoon of water through it and inflated her bladder just enough to feel her urethra through the front wall of her vagina with the other. Next, he took a pair of sharp tipped scissors and cut open a hatch-door-shaped flap at the top front of her vagina. He Exchanged the sharp scissors for blunt-tipped ones and, keeping them closed, swept the tips back and forth through the space outside of her vaginal canal, the periurethral fascia (periurethral fascia includes the obturator fascia, covers the pelvic walls formed primarily by muscles that pass from the interior of the pelvis to the thigh), until he separated her bladder from her vagina.

Illustration from Vesica Patent

The fascia around Nordell’s urethra is part of an uninterrupted head-to-toe system that surrounds and permeates every tissue in her body: organ, bone, muscle, skin, nerve, artery or vein. Fascial structures are made of collagenous tissue which is pre-loaded with tension and can stretch or compress in many directions without losing strength. They act as a lubricant to the surrounding surfaces. Cuts to Nordell’s fascia will heal, but will become scarred, more rigid, and change shape. To Malikoff, this was a reasonable trade-off with an acceptable risk-benefit ratio (a complex decision that balances the degree of illness or injury, the patient’s age and health, especially circulatory health, how well the patient is responding to non-surgical treatments, the patient’s feelings about surgery, and how much risk there is for surgical complications).
On each side of Nordell’s incision, Malikoff separated further using both sharp and blunt tools, cutting sideways as far as possible to avoid injuring her bladder and urethra. He then punctured her endopelvic fascia (Endopelvic fascia includes the obturator fascia, covers the pelvic walls formed primarily by muscles that pass from the interior of the pelvis to the thigh) behind her pubic bone and cut a path wide enough to pass a large darning needle-shaped instrument known as a “Stamey needle.” (Stamey needle: used for pulling sutures from a vaginal incision into the suprapubic area during bladder suspension surgery. This needle is reusable.) He then made a half-inch long incision deep enough to reach the next fascial area rectus fascia (thin but very tough layer that covers the abdominal muscles) above her pubic bone where he would soon anchor a suture. The circulating nurse opened a sterile package containing a Vesica kit and carefully dropped the contents onto the Mayo Stand (metal table that holds surgical instruments): two screws with sutures attached and a tube-shaped drill guide.

Two examples of anchor fixation devices

Still gloved, Malikoff grasped a tube-shaped drill guide and used it to insert a tiny anchor. He located specific internal landmarks at the back of Nordell’s pubic bone with his fingertip and aimed the head of the guide into the bone’s periosteum (dense fibrous membrane covering the surface of bones) and twisted the first tiny screw until it was securely seated. The second screw was not so easy. When he realized he accidentally twisted it into a ligament, his heart stopped. Unable to back it out, he cut the errant suture lose with a tiny saw Boston Scientific provided for this kind of mishap and requested a second Vesica kit to access a third screw. (The misplaced screw remained inside her body for years to come. She discovered it many years later.)*

Pubic bone

Malikoff then pulled the two properly secured sutures around her urethra and up through the incision above her pubis. After placing two fingers through her vagina and between the sutures and her urethra he estimated the amount of tension and then tied the ends above with a square knot “I’ll tie eight knots just to be sure. We don’t want this unraveling,” he said to no one in particular.
To make sure there was no injury to Nordell’s urethra and that the sutures were not to tight, Malikoff passed a cyctoscope (slender, cylindrical camera for examining the interior of the urinary bladder) into her bladder to look for signs of perforation. Happy there were none, he closed her vaginal and suprapubic incisions with absorbable sutures, inserted a Foley catheter and vaginal packing and signaled the anesthesiologist to wake her up.
* * *
Nordell’s procedure never worked to stop her leakage but put her into a world of pain. She began to suffer from UTI’s and the sutures cut her husband making love-making an ordeal.
The F.D.A. provides a place to report disasters like Nordell’s but the vast majority of tragic outcomes never make it there. Doctors are not required to report complications and company representatives rarely follow the reporting mandate. Medical personnel, lawyers, and patients themselves can report negative experiences to M.A.U.D.E. (Manufacturer and User Facility Device Experience), however. That’s how we know that, before pelvic mesh caused a slew of problems, patients were already suffering.
Look for more stories about other mesh inventions as I attempt to cover each different type of pelvic mesh.

* * *

*When the circulating nurse cleaned up after the surgery, she threw away a small folded paper that dropped out of the Vesica Kit package called the “instructions for use” (IFU). Those instructions recommended surgeons prepare for Vesica procedure surgery by planning in advance a way to replace “dropped, contaminated, mal-positioned or non-working screws” and by having extra supplies and extraction tools on hand—as Malikoff had done.

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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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, join my group, Surgical Mesh or 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.

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Why So Many Deaths From Monarc Slings? Pelvic Mesh Disasters

The FDA received 193 reports of death after Monarc Subfacial Hammock placements—by far the highest number for a specific brand of pelvic mesh. The FDA MAUDE system admits their reports are notoriously unreliable for accurate statistics.  It isn’t inconceivable that the number is nearer to thousands because the Government Accounted Office estimated only about 1% of complications are reported. (Physicians aren’t mandated to report illnesses, deaths, or injuries.) If the one percent statistic is accurate, then 19,300 deaths have occurred. Given that 4.5 million women across the globe had pelvic mesh implants, it is entirely possible.

With the FDA’s blessings, American Medical Systems rolled out the Monarc in 2005. The half-inch wide strip of loosely-knitted, clear polypropylene monofilament sling came with two stainless steel curved needle passers with plastic-handles that looked like grappling hooks. The top of each passer is intended to grab the ends of the sling and pull it through the vagina and obturator membrane. The sling assembly also included two plastic insertion sheaths attached to the mesh and removed after placement. An absorbable tensioning suture, threaded lengthwise through the mesh, allowed the surgeon to adjust the tension before closing the surgery. AMS declared the mesh would remain in the body permanently.

Illustration used under Fair Use Act for Educational Purposes

AMS’s illustration (and it’s understanding of female anatomy?) of the obturator was pictured as a vacant space with no purpose, but in reality, it is flush with blood vessels and nerves supplying the bladder, vagina, vulva, and hips. Those were more vulnerable to injury than AMS acknowledged.

On October 15, 2014, the FDA issued a recall for Monarc sling passers along with other AMS products due to compromised sterile packaging.

If the sterile packaging was the only problem, the deaths might be predominantly due to infection, but the MAUDE death reports include autoimmune diseases like diabetes and several types of cancer (e.g., lymphoma, large and small cell, and lung cancers).

Jenny Wallace (pseudonym) traded her prolapsing bladder for urinary tract infections, pain, infection, vaginal scarring, urinary problems, adhesions, recurrence, emotional distress, apical mesh erosion, extruded vaginal mesh, and bleeding. She was implanted with a Monarc in 2008. She underwent several partial removals and, on October 24, 2010, died of metastatic small cell cancer.

More research needs to be done to determine why Monarc has so many more death reports than other products and to quantify types of death. But, for now, if you have a Monarc, you might consider having it removed by a competent removal surgeon. Fortunately, AMS no longer sells slings.

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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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, join my group, Surgical Mesh or 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.

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Monarc™ Subfascial Hammock

How to Find What Mesh Product is Inside of You

You have a right to your medical records. Here’s what to do if you need to find out which product was implanted inside of you. It should be on your medical record, but when you simply ask for medical records, it’s often excluded, especially if you have an electronic record.

In this photo of an unopened bladder sling, there are 4 sticky labels to peel off and put on the medical record and other documents.

Not every hospital organizes medical records the same way and most made the transition from paper to electronics in the past 2 decades. You may have to do some investigating to see where your label is.

All implants come with a label (or sticker or log) with a unique tracking number and an expiration date and the country where it was made. Your hospital is required to let the manufacturer know who got which product and a record is supposed to be kept with the manufacturer. (Incidentally, I’ve never heard of a manufacturer contacting a mesh patient about a recalled defective device like car makers do).

  1. Ask your medical records department at the hospital where the surgery occurred for your complete “Operative Report” including any product labels. Tell them it might be on a separate piece of paper and may be only in your paper file.
  2. Search your operative report for it or for a notation by the circulating nurse that would name the product and include a serial number, usually preceded by a “#” symbol and, hopefully with an expiration date. (The date only refers to how long the sterilization process will last, not the device.) In an electronic record, look for a typed notation with a serial number. With that number, you can do an online search for your product name.
  3. If you do not find it, go personally to your hospital and speak with the director of Medical Records. Describe what you’re after and don’t take no for an answer.
  4. Failing all that, and if you have a copy of the note your surgeon dictated after your surgery, you are welcome to send it to me and I can narrow down to a few possibilities for what kind of mesh yours is.
  5. As a last (and expensive) resort, hire a lawyer to get it for you.

Notes: Click here for a list of how long hospitals must keep records by state.

Note: You may have to pay a reasonable fee for your paperwork.

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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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, join my group, Surgical Mesh or 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.

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Gallery

Find Your Nerve Injury

This gallery contains 4 photos.

If you are having trouble figuring out which nerve is causing the sensations you are feeling, see if you can find it here and click on it. Please let us know if this helps.           ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ … Continue reading

Childbirth Leads to Pelvic Organ Prolapse and Adult Incontinence. Here’s How

Mother Jones recently published an article that should be required reading for women suffering from pelvic organ prolapse.

“The list of ways in which the pelvis and reproductive organs can be damaged during this process is practically endless. Most women, as mentioned, experience at least some vaginal tearing. But in severe cases, the perineum—the area between the vagina and the anus—rips completely open (http://www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/multimedia/vaginal-tears/sls- 20077129?s=5) , exposing the vagina to dangerous bacteria and leaving the mother unable to control her bowels. Sometimes, as in Claire’s case, the baby is too big to fit easily through the pelvis, and the infant’s head or shoulders can break the mother’s bones on the way out. In yet another harrowing scenario, a piece of the placenta remains stuck to the uterine wall after the baby is born, causing the woman to hemorrhage. If the pelvic floor muscles stretch too far during delivery, the uterus may sag into the vagina: prolapse. And even after a woman heals from her immediate injuries, she can experience chronic nerve pain, muscle spasms, or numbness for months or years. Plenty of women make it through a birth okay, only to suffer from incontinence or prolapse years or decades later, for reasons doctors still don’t understand.”
The Scary Truth About Childbirth | Mother Jones

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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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, join my group, Surgical Mesh or 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..

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Hazards of Laparoscopic Mesh Removal

Online message from Dr. Dionysios Veronkis (slightly edited for clarity) :

Vaginal mesh is placed extra peritoneally[1] (outside the body cavity and away from bowels). Although laparoscopy is touted as minimally invasive, [it is minimally invasive in] abdominal surgery. Vaginal surgery is less invasive than both laparoscopic and robotic surgery.

Robotic surgery is laparoscopic surgery aided by a computer to help the surgeon move robotic arms [which guide instruments].

When mesh is placed vaginally and removal is attempted laparoscopically, the surgeon must place small 5mm to 12mm incisions and ports in the abdomen, [adding] the risk of injury to the bowel blood vessels during trocar insertion. The peritoneum must then be cut and the bladder and vagina or rectum and vagina must be separated [by cutting through the connecting fascia].

Bear in mind that when instruments are inserted thru the abdomen, that port creates a fulcrum and a vertical angle thru the abdominal wall limits the movement of the instruments [while they operate on the horizontally-oriented] vagina.

While all this is going on you are tipped head down pelvis up so your bowels move out of harm’s way. The surgeon is operating while standing at your side with thin 5mm to 10mm instruments pushed thru your abdomen to reach your vagina—17 to 25 inches [away].

[Your alternative is to] find a vaginal surgeon who can forgo all that and go directly thru your vagina to the mesh. Remember, mesh was placed vaginally.

The thin laparoscopic instruments were never designed for the structural stiffness of the mesh. Laparoscopic instruments were designed to be thin and delicate since bowel is always present. Due to the nonspecific delicate instruments used in laparoscopic and robotic surgery, in order to remove mesh in laparoscopic surgery, robotic energy must be used. Laparoscopic surgery uses electricity to cut tissue and stop bleeding which generates heat.

Mesh is plastic. Heat melts plastic.[2] Removals done with the use of electricity will look blackened or burned with no clear edges or ends and small blood vessels need to be cauterized.

Liberal use of energy will melt the mesh, create a thermal injury that will kill tissue days later (and may result in a hole in the rectum or the bladder) or, in order to avoid melting the mesh, more tissue will be removed [than necessary], increasing the risk of a hole or a fistula.

Mesh in both groins from a TOT and mesh under the skin and muscles from a TVT can NOT be accessed by laparoscopy. They [require] an incision.

Finally, you can do all that or have the mesh removed vaginally with sharp dissection using more durable instruments designed specifically for vaginal surgery.

– D. K. Veronikis M.D. of St Louis, MO

[1] Peritoneum: the serous membrane that lines the walls of the abdominal cavity and folds inward to enclose the viscera. Normally, it is separate from the pelvic viscera.

[2] When polypropylene melts, depending on the particular material, it releases plasticizers, stabilizers, and biocides. Most of these materials will have a very low vapor pressure, so they will probably form aerosols (white smoke) and should be taken care of with a little fresh air
Burned polypropylene (black smoke, and/or flames) can form a large number of organic compounds (oxidation and/or decomposition products) including some formaldehyde, an eye and respiratory irritant, as well as related compounds.

 

 

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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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, join my group, Surgical Mesh or 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..

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10 Facts of Life for the Pelvic Mesh Newbie

  1. Mesh injuries and illness rates are much higher than medical studies show. Most published research favorable to mesh is funded by the manufacturer.
  2. Mesh is mesh. There is no “old mesh.” It is all that same thing with minor changes in shape or route. Polypropylene is just plain damaging to human tissue.
  3. The pelvis is a perilous place to conduct surgery. Even human or pig mesh or simple suture repairs can cause problems–but not as frequently as pelvic mesh.
  4. Your new pelvic problem is very likely caused by the mesh itself. Fearing litigation and believing the manufacturer’s advertising, doctors are reluctant to blame the device.
  5. Some pain and infection get better with removal–but not all.

    KIM Mesh

  6. Very few surgeons know how to take mesh out, so they fake it with partial revision surgeries that lead to new complications and more surgeries. More surgeries = more scar tissue.
  7. There is no justice. There are almost no medical malpractice lawsuits anymore. There is no money in malpractice litigation for the lawyers since “Tort Reform” was enacted in all 50 states. Doctors and the AMA lobbied and paid for Tort Reform.
  8. About class actions, there is no money for a lawyer who represents a patient with pain, infection, nerve damage, etc. because recent settlements are based on the number of surgeries you’ve had and not how sick or injured you are.
  9. Don’t wait for legal recourse before finding a competent surgeon. Consider crowd-funding to get well.
  10. You shouldn’t have to do this alone. Join a mesh support group but keep a critical mind and don’t accept advice just because another person is adamant in their post Be careful. Be sure to double check any answers you receive. A good internet search can provide your best education.

 


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Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

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.

    • 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

    .

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