Tag Archives: urinary retention

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.

twitter-iconfacebook-icon



 

 

 

 

 

 

 

 

 

 

 

Monarc™ Subfascial Hammock

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon


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.

 


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

    .

twitter-iconfacebook-icon


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 any slings or sutures in the pelvis). 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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon


Partial Pelvic Mesh Removal — Wrong Solution to Permanent Problem

Your surgeon says he or she can snip the part of the mesh sling they can see, a quick operation and you’ll be better. Or says he can cut it to release it because it was put in too tight. Or, he promises a full removal but the operation takes less than an hour and, if the parts go to pathology, most of the mesh is still not accounted for.

Women who knowingly or unknowingly have partial removal surgery come to regret it. They issue strong warnings for the lucky women who read or search for answers online before signing up for a partial removal. Thousands of Urogynecologists and Urologists do partial removals. The very people who profit from mesh tell those specialists how to handle complaints: just cut a little out. Some heartless doctors cut it right there in the office with no anesthesia whatsoever.

The woman who have been through this tell newcomers not to allow a surgeon to cut bits and pieces of mesh but to leave it whole for a qualified surgeon with the skills to necessary to remove the entire device in one operation. They warn that doctors are not telling the truth about those partial surgeries.

Frayed rope is like sliced mesh

Partial removal can be a temporary solution to a permanent problem. Nearly everyone gets temporary relief after a partial surgery. When a rope breaks, the ends fray. That’s what happens with partials. All the ends leak toxic chemicals, stirring up a immune storm inside your body and spring back, eventually attaching to other parts of your vagina, bladder, intestines, bones, nerves, and blood vessels. After a year or two, you develop new symptoms and go looking for a doctor who can help. More than 99% of board certified surgeons will do another partial. Some women have dozens of surgeries before finding help from advocacy groups.

Be very careful. Get the whole thing out in any way you can because you are in the best possible shape to have a good outcome when your surgeon goes after the whole thing and it’s still intact! When mesh is cut, the next surgeon must go searching for shreds of it. They compare that surgery to trying to get bubble gum out of hair or searching for shrapnel.

POLY IS FOR CUTTERS

If your surgery took less than four hours, consider that it may not be a complete removal, get your medical and surgical records and your pathology report. Learn the dimensions of your implant and ask for an accounting for every piece of it. Before your explant surgery, demand a micro and macro pathology be done. Afterward, get those reports!

We’ve found only five surgeons in the U.S. who consistently prove they removed complete pelvic mesh including arms or anchors (fixation devices):

  • Shlomo Raz, UCLA
  • Dionysis Veronikis, St. Louis, MO
  • Una Lee, Seattle WA
  • Dmitriy Nikolavsky, Syracuse, NY
  • Michael Hibner, Phoenix, AZ

The surgery is very risky but research has shown that is in no more risky that partial removals.

Beware of sugeons loan companies Beware of Mesh News
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon


It’s Not Your Fault – By DebC

Below is an excerpt from another blog, MESHMENOT, by DebC who makes a very important point, especially for women. Simply put, it is not your fault that you had mesh implanted.

It Is Not Your Fault
Are you suffering from mesh complications and feeling guilty for “allowing” mesh to be implanted in your body in the first place?
Well then, I think, that you should think again.
No one  suffering from mesh complications should be feeling guilty.  This is not the patient/victim’s fault.  They should not have known better.  Nobody that is mesh-injured should be blaming themselves regardless of what kind of mesh it was or when they had it implanted.
Many who get mesh are not even given all the facts and options upfront.  I’ve heard from many who did not even know their doctor planned to use mesh until after the fact. The sad truth is that if you walk into almost any doctor’s office today and say you pee a little when you sneeze, he (or she) will probably recommend mesh, despite two FDA warnings, FDA adverse event reports of severe complications, and over 100,000 lawsuits.
Most likely, when you visited your doctor, he downplayed your valid concerns. He may have said the mesh, or tape, or sling he used is not the same thing that’s in the news and he’s chosen a safer product. He may have said his product was your only option. Serious and debilitating mesh complications rarely are acknowledged by most members of the medical community, so those who seek a second or third opinions find no real answers.
You are not to blame. When it comes down to it, most people trust their doctors. Period. That’s what we were taught to do: listen to our doctor.We are not medical professionals and some doctors will take advantage of that, chastising us for searching for answers online and trying to diagnosing our own complications. Many doctors take offense when their skills are questioned but, fortunately, there are doctors out there who listen and sincerely engage with their patients. There are even a few doctors who remember how to make repairs without using synthetic mesh–they are worth finding.

MESH IS NOT FOR BODIES 9
It’s human nature to kick ourselves in the ass.  Guilt comes too easily for most of us.  It may be because we like to believe we are in control of most things and feel we should be. It’s easy to feel like we should have known better, especially when we start doing more research and realize just how dangerous mesh is.  Then we wish that, somehow, we would have  known better than the doctors who recommended mesh in the first place.  But, hind-sight is 20/20 and most of us do not believe we know better than our doctors until we wind up dealing with all kinds of unnecessary mesh complications. – by DebC on MeshMeNot

 


“Even paranoids have real enemies”—Delmore Schwartz 1913-1966


 

The definition of paranoia is “an unfounded or exaggerated distrust of others.” When thousands of mesh victims gather and share stories of horrific infections, injuries, illnesses, disabilities, and even death, distrust of the maker of the product is certainly not unfounded.
If you’d like to read more on this mesh topic and many others, start at Deb C’s website here and look around while you’re there for more of her well-researched and fascinating writings.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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..

twitter-iconfacebook-icon



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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon



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


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon



Handling a Trip To The Emergency Room With a Mesh Problem

Once upon a time, a more experienced emergency room nurse than me said doctors treat patients with headache and backache badly 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.

Screen Shot 2015-08-23 at 4.30.12 PM

Published under Fair Use Act as Educational

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.

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…
◆    Be as personable as you can given your condition.

Maslow’s Hierarchy of Needs

⁃    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 in commonly understood terms.
⁃    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.

Another blogger addressed “ER visits” for chronic pain sufferers:
◆    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, ir makes it clear you are 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.
◆    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?


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon



Mesh-Related Urinary Retention: A Kink in the Works

If you’ve ever bent your straw and tried to keep sipping your drink anyway, even though you hate the way your delicious milkshake comes up in dribs and drabs, fits and starts, you can imagine what is happening to your urethra when you have mesh-related urinary retention. It is an extremely painful condition and, if it is left untreated, it can cause extensive damage to your kidneys and urinary tract. Yet another mesh trouble.

“I really miss the way I used to “tinkle!” When I had to go, I could sit down and have a good, steady flow that came out fast. And I would be done. Now, I can’t seem to get it out like I used to. It’s almost like an unsatisfying feeling. I have the urge, but it won’t come out right. And I need to stand up and squat over the toilet to get the last part out.
It seems I always have to urinate now…the more I push, the less it flows.”

“I really don’t enjoy urinating anymore! Before, it was such a relief to go to the bathroom! Now, it’s annoying.”

“I have trouble with pain while walking and sitting.”

“Ever since the sub-urethral sling I have had some voiding dysfunction.”

“I saw a really good urologist and he said he would never have used the sling I got and it was a ‘little’ tight. This has caused me lots of pain, some erosion, etc. He recommended removal for me.” – personal accounts

The women above can describe what urinary retention due to bladder mesh better than any medical author. The problem lies in the very design of the transobturator tape. Surgeons are human and human skills vary. No two human pelvis’s are shape alike and fitting one product to all means that some slings will be placed so tight they squeeze off the flow of urine. One study found 3.7 percent of mesh implants result in urinary retention requiring additional surgeries.

Why? A transbobturator tape (TOT or TVT-O) is inserted by hanging polypropylene woven mesh like a hammock— not too tight and not too loose—with exactly the right tension. Trouble is, the patient is asleep when she gets her implant and can’t say, “Ouch! A little too tight!” Or, “Can you loosen it up a bit?” Surgeons have to estimate how tight to make it using techniques that other surgeons have found successful or that they took a weekend course operating on an motionless cadaver. Even the surgeon’s handedness* affects the angle at which they punch the trocar through and how much tension gets applied to each side of the sling. By the time you wake up with that indubitable feeling that its too tight, it’s too late.

While your surgeon is stringing your hammock, you are tipped with your head down in a position you would not assume for a longer than a few minutes because all the blood rushes to your head. To put you in the Trendelenburg position, your sleeping body is placed on the operating table, your legs strapped in stirrups and your head is lowered as much as 30 degrees.

When you first stand up after surgery, the full weight of all the organs above push against the mesh sling below putting pressure on your urethra. If the sling is too tight, your urethra becomes pinched, or kinked. You are about to enter a personal learning curve of discovery–more than you ever wanted to know about urinary retention.

MESH IS NOT FOR BODIES 9

Retention is definitely not fun: Some women with retention are able to trickle their urine slowly, some have to finish emptying their bladders by standing up and bending forward, some must place their head below their knees, and others end up with catheters or urostomies. Imagine that.  You are forced to bow down in supplication, privately humiliated with every bathroom trip while the profiteers of the defective device you just received are sunning themselves on yachts on the Mediterranean. Even the surgeons who put in yours and now are refusing to say the mesh caused your problem, are sitting in the deck chairs.

Catheters: Some women cannot, no matter what they try, get their urine out—not being able to start a stream or to finish emptying due to the angle of the crimp in their urethras. Indwelling (Foley) catheters are often placed but the length of time they can be used is limited because they result in urinary tract infections nearly 100% of the time a few days time. Some women are taught to use intermittent cathaterization (IC) to empty their own bladders. Those smaller catheters are inserted and removed each time and can be rinsed and reused. Learning how to use them is extremely difficult and the inside of your urethra is extremely sensitive to damage and can swell causing more retention. Try laying down in the bathtub the first few times you insert one or lay on a shower curtain on your floor so you won’t get tired as you learn how to insert the catheter very slowly and carefully. Once you learn the shape of your own urethra, it’ll be easier.

Supra-pubic catheters and urostomy: In rare cases, catheters fail or the bladder is so distended that a catheter won’t work so a supra-pubic catheter is inserted. It is a simple surgical procedure where a small hole is cut above your pubic bone and a catheter is inserted to drain your urine until your urethra is healed. The amount of time it is left in varies from patient to patient. If the bladder or urethra is permanently damaged a major surgery is performed to drain urine from your kidneys through a small hole in your abdomen, a urostomy, or radical cystectomy.

Surgical repair: Urinary retention makes it necessary to undergo a battery of urodynamic tests and new sling implant recipients are often told to wait a few months to see if it will somehow magically stretch out. Mesh material is designed not to stretch and making a patient wait months ignores the amount of unimagined agony and personal distress that a tight sling causes. A urologist or uro-gynecologist often will perform a “ligation” or “revision” in which they cut the sling in two. We do not recommended revisions or partial removals as they allow the two ends of the sling to snap away, shred, and grab onto any healthy tissue around—leading to future revision or very long and complicated removal surgeries.

Despite the fact that waiting only prolongs your agony, in order to keep you from having more complications, mesh troubles, be sure to learn all you can about the difference between revisions and complete removals before deciding who will treat you and what procedures to agree to.

More Links:
The Urinary Retention Guide    
http://www.retentionurinary.com/acute.html

About Urinary Retention
    http://www.medtronic.com/your-health/urinary-retention/index.htm
Urologic Emergencies
    http://www.urologychannel.com/emergencies/acute.shtml
Inability to Urinate
    http://www.emedicinehealth.com/inability_to_urinate/article_em.htm

*You are more likely to be injured on the side opposite your surgeon’s dominant hand.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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..

twitter-iconfacebook-icon