MESH INJURY – “Spotlight Symptoms”

Hello Warriors;

Today, I’m starting a blog series called, “MESH INJURY – Spotlight Symptoms.”*

TVMI encounter an alarmingly typical and recurrent problem when advocating for and with mesh-injured patients. It goes something like this:

  1. Mesh-injured patient develops a disturbing symptom.
  2. Mesh-injured patient visits his/her PCP or a specialist to seek diagnosis and treatment.
  3. Physician performs a physical exam, and says something like, “I don’t know what that is,” or I’ve never seen anything like this [symptom].”
  4. Patient is confused and bewildered and asks if there are tests that could be done or another doctor or specialist who would know more about the symptom.
  5. Physician says, “No,” and doesn’t perform any diagnostics to find out the underlying cause of the symptom (environmental cause, disease process, injury, or infectious pathogen).
  6. Physician prescribes medicine to mask or alleviate symptom(s) (e.g. topical creams for rashes, antibiotics for a suspected infection, maybe some other pharmaceutical to control pain or discomfort, or even an invasive or non-invasive form of treatment).
  7. Patient goes home still symptomatic, with no diagnosis, and with one or more pharmaceutical or other treatments to consider, which may or may not work, since the UNDERLYING CAUSE or UNDERLYING PATHOLOGY, which caused the symptom to manifest, was never studied in depth by the treating physician.
  8. Patient goes home and follows pharmaceutical regimen or advice for treatment.
  9. Pharmaceuticals and treatments do not alleviate symptom(s). Symptom(s) continue.
  10. Patient is left untreated and without a next step.

Paternalistic-vs-Patient-CenteredOftentimes a physician will refer to a symptom as “idiopathic,” which in layman’s terms simply means, “Who knows where it came from?” There is a responsible use of this term, but I see it used irresponsibly too often.

Some diseases are generally agreed to be “of idiopathic origin,” because no one in science can definitively identify an underlying cause. In this case, “idiopathic” is often part of the name of the disease or syndrome itself. Some examples are:

  • Idiopathic Thrombocytopenic Purpura (sometimes called Acute or Chronic ITP) is a bleeding disorder, in which a patient has abnormally low blood platelets, and thus their blood does not properly clot.
  • Idiopathic Hemochromatosis – is another bleeding disorder, in which an abnormal and dangerous amount of iron accumulates in the body’s tissues or organs, including the liver and lungs.

Both disorders are life threatening if left untreated. These disorders present with SYMPTOMS, and when doctors invest in diagnostic procedures, these diagnostic procedures, coupled with symptoms, lead them to a diagnosis, which then leads to a treatment or even a cure.

A serious problem arises when physicians use the word “idiopathic” irresponsibly. In all cases, any particular symptom or cluster of symptoms do originate from some cause, from something, from somewhere, and any doctor who does not search for the underlying cause of a symptom is negligent. “I don’t know,” would be a more accurate physician response in this situation, however; “idiopathic” sounds so much more, you know, medical and stuff. Odd or uncommon symptoms can often co-occur, simultaneously with other more salient symptoms, and when viewed together as a whole, the underlying disease process in these cases, can be more obvious, leading to a higher chance of diagnosis, or a more rapid diagnosis, which then leads to the correct treatment, to the best of the physician’s actual knowledge.

Puzzled male shrugging wearing lab coat

But, what if a patient presents with an idiopathic symptom that does not have a common accompanying symptom or cluster of symptoms that is easily recognizable to an average physician? In my personal experience, this situation is when physicians can get a bit lazy with the use of  the term”idiopathic.”

“Of idiopathic origin” is so much more dignified on a patient’s chart than:

“I have no friggin’ idea, but it’s not my problem, so I gave the patient some samples.”

So, has your physician ever told you, “I’ve never seen that symptom,” or “Your symptom seems to be idiopathic and will most likely resolve on its own.”?

If so, I’d love to hear from you.

Have you had the experience I describe above?device-transvaginal-mesh-edit

If you have, what was the symptom?

Did you ever get to the bottom of it?

Did the physician suggest diagnostic testing, or did you ask for such if he/she did not?

Did you find your doctors to be helpful in assisting you as you continued to pursue a cause, or did you find that your doctor quietly excused himself from your care, and left you to find some other doctor who might help?

Tuesday we’ll talk about the first of many symptoms which are commonly seen in mesh-injured patients, but for which doctors often say there is no explanation or that physician seems to have no drive to find an explanation.

With this series of blogs, I hope to highlight some very common symptoms, for which mesh-injured patients are turned away, left with no medical solution to pursue. Let’s use our collective knowledge as a community to help one another and to help those who don’t understand the realities of ongoing mesh injury.

The_Mesh_Warrio_Flower_logo_150x150_thumbnail

*I am not a doctor. This information is for education purposes only and is based on my personal experiences. If you have a symptom, please find a doctor who will help you identify and treat your symptoms.

12 Days of Christmas: The Mesh Warrior’s Guide to Handling the Holidays

My blog this week over at Baron and Budd’s site: 12 Days of Christmas: The Mesh Warrior’s Guide to Handling the Holidays.

Thank you Consumers’ Union & The Safe Patient Project!

Hi Angels & Warriors!

There are so many wonderful Warriors among us, as evidenced by the below:  A wonderfully written letter, signed by many leaders and patient advocates urging (strongly urging) that the FDA RECLASSIFY POP and SUI MESH to a HIGH RISK DEVICE/CLASS III DEVICE, which it certainly is!

Thank you Consumers’ Union!  A very thorough and well written letter.  Thank you for helping our voices to be much louder!  And if you, dearest reader, have not submitted your request to the FDA, you can do so here before Midnight TONIGHT, July 30, 2014!

http://meshsurvivors.org/tell-fda-reclassify-meshScreen Shot 2014-07-28 at 1.39.41 PM

READ THE CONSUMERS’ UNION LETTER HERE:

CONSUMERS’ UNION/SAFE PATIENT PROJECT REQUST TO FDA RE: RECLASSIFICATION OF PP MEDICAL MESH FOR POP AND SUI

The Mission & Vision of the Mesh Warrior Foundation

Mesh Warrior_Headshot_1mb

The Mesh Warrior

Click the link below to browse a PDF which includes a basic overview of the problems with medical mesh.

Thank you for visiting the site!

051214_General_Educational_Fundraiser_Preso

Click to review a general presentation about the dangers of medical mesh.

Click to review a general presentation about the dangers of medical mesh.

Please consider donating through PayPal:

DONATE TO HELP AN INJURED PERSON

6/2014 – The Faces of Mesh: Heather Zuk – Her Passion for Plenty

Heather Zuk is a breath of fresh air.  She has a light and airy countenance about her that makes you want to float into her realm.  She is creative, witty, hard working, heart warming, and all of 20 years old.  Over the six or so months that I have watched her online, followed her posts and giggled at her shenanigans, one word comes to mind immediately: BEAUTY.  

Heather playing guitar

Heather playing guitar

She surrounds herself with it.  She embodies it.  She has a lovely outlook on life, not an ounce of bitterness in her tone or, I imagine, even lurking around in the roots of her heart.  She never has unkindness at the tip of tongue; never a shaming remark; never a desire to tear down. Quite the contrary, she is the consummate builder: she builds flocks of chicken; libraries of photos; books filled with poetry.  She’s a creative mind, and it’s on that gift that she chooses to focus.  She’s kind and a brilliant and creative steward of all things lovely in the world.  I see her in pictures of meadow-filled flowers; in pictures with family, smiles broad about their faces, clearly enjoying the company of one another; in pictures adoring the relationships she’s built with her brood of chickens.

When I ask her what the mesh has taken from her, she seems not to understand the question.  Innocence maybe, but her youth has not afforded her the hindsight to gaze upon the bodily sacrifice of bearing and rearing children.  I ask again.  This time, the answer comes more naturally, “Well I used to love to help out with the farm more, you know, milking the cows and stuff, and I can’t do that anymore.  I miss helping with the work on the farm that I used to do.  But I can still do a lot,” she concludes.  Our vignettes of conversation never end on sour notes, or lingering notes of fear, or uncertainty.  That’s just not who Heather is.

She is a 20-yr-old who knows what she wants and is content with what she has, and what she’s able to do, despite what’s been taken from her by the hernia mesh that was first implanted in her as a 17-yr-old.

Playful and fun!

Playful and fun!

When I interview her, it’s more like a girl chat.  It’s fun and fresh and spirited and upbeat.  It feels like mesh is someone else’s problem.  We talk about maybe getting to meet someday, about her photography and, dare I say, quite eccentric interest in poultry.  New York feels closer than ever during our discussion.  Heather is multi-dimensional, and she’s not afraid to show it.  I love that about her.  Oh ya, and she works at a body shop. “Just in the front office,” she reminds me, but inside I think, “How cool! I just love this kid.”

 When we do enter the mesh realm, she explains to me that when she was 17, she was mounting the stairs to her bedroom, and on the way, she sneezed.  A few short minutes passed, and she began to feel weak, nauseous, fatigued and just “very ill.”  Neither she nor her parents knew why.  After three or four hours of enduring the worsening symptoms; they subsided almost as abruptly, so she and her family thought it simply to be a strange, single incident . . . until it happened again a few months later.

This time, they sought immediate medical attention and discovered that Heather had, not one, but two hernias – one femoral and one inguinal.

Heather was referred to a specialist, and most of you reading know, “the rest of the story,” as the late, great radio personality, Paul Harvey, spoke in signing off at the end of his radio program.  Unfortunately, like many of you, Heather can’t end her story here.  After seeing a specialist, she and her family decided to follow doctors’ orders and have mesh implanted at both hernia sites.  She has never been the same.  In fact a third hernia (femoral) showed up about a month after her first mesh implant surgery.  She has had another hernia since, hernia revision surgery, and attempts at removing some of the mesh, and all this, by the ripe-old-age of 20.

Doctors say the mesh is likely to interfere with her ability to have children down the road, but she doesn’t live in that reality. She tells me, “I guess I’ll deal with that down the road, when it’s time.” I have an online friendship with her, and I delight in the person she is. I watch her post funny videos; take silly pictures with her sister; enjoy her family; playfully, skillfully and artfully enjoy her hobbies. We make a pact on the phone. She will help me learn to raise chickens, and she is excited to share with me all she knows about them, when I tell her I’ll be taking on a few yard birds soon.  We giggle about my neighbors “free range chickens,” and their birdie little antics. We laugh; make pinky swear; and both find a great deal of humor in my chicken-raising neighbor’s name: Mr. Fetherston.  I delight in her joy. Not everyone laughs at that, and I feel a kindred soul. Mesh again recedes from the forefront of our conversation.  I ask why she likes chickens so much, and she says, “I don’t know; I just always have.” I sense that she enjoys them more so now; because, with her injury, she can still participate fully in the activities of caring for chickens, not having to give up facets of their care, like she’s had to with her other bigger barnyard friends, cows and the like. Screen Shot 2014-06-25 at 10.28.55 AM

Her family – father, mother, brother and two sisters – are supportive, and she knows that is a gift. She is wise beyond her years in some ways, but also green, bright and new. I sense she has no vocabulary for what many other mesh-injured women have lost, because she is simply at the point in life where many of us long to be again: she hasn’t gained quite as much to lose as her elder counterparts. That doesn’t lessen her suffering, in my opinion, for pain and suffering is always relative. In a way, I grieve that she may never experience what has been lost by so many of you; deep relationships with adult children and spouses, careers and dignity. It certainly, again, begs the question,

 “Is it really better to have loved and to have lost, than never to have loved at all?”

It’s a question that floats in the Mysterious; hangs in the balance, some days tipping towards yes, some days tipping towards no.  She confesses that sometimes when she ponders the future too much, anxiety begins to take hold – the terrifying type – full blown panic attacks. Having experienced such myself, Heather and I agree; there is no better word to describe them than, TERRIFYING.  On one recent occasion, she began to feel the pangs of anxiety growing stronger. She tried to watch a movie with her sister, but nothing seemed to help.

“I was trying not to burst out crying for no reason [during the movie]. When it finished my sister went to bed, and I stood in the bathroom trying to figure out why I was crying, and I started blaming the mesh. That led to over analyzing all the bad things the mesh has done and possibly could still do, and before I knew it, my pulse had escalated and I started hyperventilating. All of that caused me to panic more, because I couldn’t make it stop; so I sat there sobbing; almost passing out; hyperventilating uncontrollably for about 20-30 minutes before my pulse returned to normal. When it finally ended, I was so completely exhausted I barely made it to my bed before falling asleep.”

In the same exchange she says, “I am in constant pain, and I struggle with depression,” but she is quick to add, “but I don’t focus on that.” In fact, her writing about her experience is quite eloquent. Read more here: http://herpassionforpoultry.wordpress.com/2014/01/25/two-definitions/ from her first-person point of view.

One thing is clear as crystal to me about Heather. She is full of love; full of joy; full of compassion; happiness; empathy; adventure; spirit; and Hope. I believe that whatever or whomever comes her way; she will absorb the Bad, and turn back out into the world the Good. She has a Spirit about her that makes one know her story ends happily ever after, however it actually ends.

Enjoy her talent as a photographer in the gallery I’ve posted here, and visit her blog http://herpassionforpoultry.wordpress.com to get to know more about this lovely, quirky, genuine and grateful girl with the giant joy that makes up some of her beauty, and a woman I have come to call friend.

Thank you, Heather, for sharing yourself with us. We are all better for knowing you.

 

What could be better than competition?

HOW ABOUT COLLABORATION . . . THAT’S WHAT!

More Media Coverage About the Dangers of Mesh Implants

I forgot to put this on my own blog! Duh!

Maybe we’ll save #justonemore with this coverage. This is my neighborhood magazine in Dallas, and it is delivered directly to the doorsteps of many thousands of homes, most with stay-at-home moms.

 

Maybe we'll get #justonemore with this coverage.  This is my neighborhood magazine in Dallas, but it is delivered to doors and goes to many thousands of homes, most with stay-at-home moms.

 

http://lakewood.advocatemag.com/2014/05/26/medical-mesh-tangled-web/

The Pursuit of Bravery

The United States Constitution and the Bill of Rights

Witnessing a civil trial makes ya kinda wanna remind yourself again . . .

http://www.BillofRightsInstitute.org

The U.S. Constitution – Downloadable PDF
Bill of Rights – Downloadable PDF

Bill of Rights

The Conventions of a number of the States
having, at the time of adopting the
Constitution, expressed a desire, in order to
prevent misconstruction or abuse of its
powers, that further declaratory and
restrictive clauses should be added, and as
extending the ground of public confidence
in the Government will best insure the
beneficent ends of its institution;
Resolved, by the Senate and House of
Representatives of the United States of
America, in Congress assembled, two‐thirds
of both Houses concurring, that the
following articles be proposed to the
Legislatures of the several States, as
amendments to the Constitution of the
United States; all or any of which articles,
when ratified by three‐fourths of the said
Legislatures, to be valid to all intents and
purposes as part of the said Constitution,
namely:

Amendment 1
Congress shall make no law respecting an
establishment of religion, or prohibiting the
free exercise thereof; or abridging the
freedom of speech, or of the press; or the
right of the people peaceably to assemble,
and to petition the government for a redress
of grievances.

Amendment 11
A well regulated militia, being necessary to
the security of a free state, the right of the
people to keep and bear arms, shall not be
infringed.

Amendment 111
No soldier shall, in time of peace be
quartered in any house, without the consent
of the owner, nor in time of war, but in a
manner to be prescribed by law.

Amendment 1V
The right of the people to be secure in their
persons, houses, papers, and effects, against
unreasonable searches and seizures, shall
not be violated, and no warrants shall issue,
but upon probable cause, supported by oath
or affirmation, and particularly describing
the place to be searched, and the persons or
things to be seized.

Amendment V No person shall be held to answer for a
capital, or otherwise infamous crime, unless
on a presentment or indictment of a grand
jury, except in cases arising in the land or
naval forces, or in the militia, when in
actual service in time of war or public
danger; nor shall any person be subject for
the same offense to be twice put in jeopardy
of life or limb; nor shall be compelled in any
criminal case to be a witness against
himself, nor be deprived of life, liberty, or
property, without due process of law; nor
shall private property be taken for public
use, without just compensation.

Amendment V 1
In all criminal prosecutions, the accused
shall enjoy the right to a speedy and public
trial, by an impartial jury of the state and
district wherein the crime shall have been
committed, which district shall have been
previously ascertained by law, and to be
informed of the nature and cause of the
accusation; to be confronted with the
witnesses against him; to have compulsory
process for obtaining witnesses in his favor,
and to have the assistance of counsel for his
defense.
Amendment V 11
In suits at common law, where the value in
controversy shall exceed twenty dollars, the
right of trial by jury shall be preserved, and
no fact tried by a jury, shall be otherwise
reexamined in any court of the United
States, than according to the rules of the
common law.

Amendment V 111
Excessive bail shall not be required, nor
excessive fines imposed, nor cruel and
unusual punishments inflicted.

Amendment 1X
The enumeration in the Constitution, of
certain rights, shall not be construed to
deny or disparage others retained by the
people.

Amendment X
The powers not delegated to the United
States by the Constitution, nor prohibited
by it to the states, are reserved to the states
respectively, or to the people.

Calling all Angels . . .

Do you remember this movie – Pay It Forward- and its last scene?

What is your answer when the child is asked,

“Why won’t it work?”

Please share your comments below.