When Family Members Suffer – Watching a Loved One Hurt by Transvaginal Mesh

Jul 25th, 2013 | By | Category: Patient Profiles
Aaron Leigh Horton

Aaron Leigh Horton

Your Call to be a Mesh Warrior

July 21, 2013,   by Aaron Leigh Horton,   themeshwarrior@gmail.com

For many of us, family members of those implanted with transvaginal mesh, life is now largely about watching someone we love writhe in unendurable pain for days on end, staying up nights kissing foreheads, caressing locks of hair, whispering prayers or songs of comfort, locking eyes with a bottomless suffering we feel helpless to stop, trying to do or say anything that will MAKE. IT. STOP. for just a moment.  The focus is and always should be on our injured loved ones but this, as we now know, is a family illness that reaches through them, sprouting tentacles into everyone they love, making its home in all of us.

“Mothers are the backbones of our families,” said one of the many women sometimes called “Mesh Angels” whose own body now fights against her every day as it tries to heal from what initially was described to her and thousands of others as a minimally-invasive, outpatient surgery.  Her comment struck me as incredibly profound, since even through the blurred and shaky lens of chronic pain, she sees what happens to all of us, when an offender, especially one that came so neatly packaged inside the proverbial Trojan horse, steals our matriarchs so suddenly.  The culprit has many names “Transvaginal Mesh,” “Pelvic Mesh,” “Synthetic or Polypropylene Mesh,” and though the product has been scientifically proven to be harmful and toxic to humans, it’s being sold this very second to patients all around the world, through trusting doctor-patient relationships.  The mesh is often presented as the gold standard, state-of-the-art solution used to repair two common medical problems: POP (Pelvic Organ Prolapse) and SUI (Stress Urinary Incontinence).

The reality of the mesh’s impact has nothing to do with a reliable solution and certainly nothing of gold.  Our mothers, aunts, sisters and grandmothers have been directly injured by surgeon’s knife and we- daughters, nieces, grandchildren, and husbands have been injured too- by the loss of our most precious family relationships, and we are all wondering, “How could this have happened?”  The answer is lengthy, with many entities and systems, corporate decision makers, manufacturers, and yes, doctors, who share culpability.  There is much we now know, about what was known, and when it was known with respect to the toxicity of mesh and its success rate against the more tried-and-true non-mesh methods used to address these medical conditions for decades (Read more here, from Dr. Philippe E. Zimmern (here) ).

My story is as the older of two daughters trying to cope with a new reality, a new family dynamic, one with Mom still at the center but in a different way.  My mother had the mesh implanted in December 2009.  The last “normal” memories I have of her are sometime in early March 2010, while on a family vacation.  She was in pain the entire trip, but she fought through it courageously, as her surgeon kept telling her the pain was just post-surgical.

Mom, a retired head-of-the-class RN, knew the pain was different somehow and tried to explain that to her surgeon.  The doctor simply wouldn’t listen, wouldn’t return calls, wouldn’t lend credence.  The doctor didn’t have an answer and seemed to me to be afraid of finding one.  Steadily, my mother declined as we tried to find out what had gone wrong.  More than a year of multiple nerve blocks to try and locate the source of the pain, agonizing diagnostic tests, various specialists, and still no answers.  Early on my sister and I attended one of these diagnostic tests, signifying our support and declaration to be part of the solution.

My mother has, sometimes what seems to me, a freakishly high tolerance for pain, partially genetic I guess but also, I figure, a result of years suffering through debilitating migraines.  For whatever reason, she has what you might call a thick skin.  I believed I was there during this test for moral support or as a chauffeur mostly, in the way I had been as a teenager during trips to the ER, when her migraines would rage so out-of-control, that only IV morphine could come close to taking off the stabbing, relentless, throbbing pain.  But this time was quite different.

As the doctor performed the test, I saw a look in her eyes I’d never seen before: all-encompassing, far-reaching, out-of-her-mind terror, the kind you usually only see in a child’s eyes.  I have never been to the place she visited that day.  And I have never been to the place she has lived every day since. 

That appointment, in early 2011, was the real start of the journey for me as a caregiver, as I asked myself, “Is the treatment worse than or equal to the pain of this condition?  Where does that leave us?  Who can help us now?”

Mom has always been the one who knows what to do.  Normally I would have asked her those questions, and she and my step-dad would have had a very pragmatic plan for success, one I would have confidently followed to its end, expecting the results we all anticipated.

By March of 2011, my mother begged to be admitted to the hospital.

My step-dad presented her thrashing and crying inconsolably to their family doctor – out of ideas, completely devoid of another way to soothe.  No amount of healthy eating, attempts at something like stretching or yoga, massages, breathing exercises, guided imagery, prayer, healing chants or other well-intentioned suggestions could reign in her pain.  Even the meagerness of a steady regimen of oral, opiate-based medications against the adversary of this chronic condition was now apparent.  IV narcotics were the only solution presented to us.  She was kept in the cancer unit since the high doses of medication needed to keep her somewhat comfortable required observation by nurses experienced with the unrelenting pain of terminal patients.  I spent most nights with Mom, keeping a blog to communicate with extended family and friends.  Here is an excerpt from my blog that March:

March 23, 2011 11:12pm

“Earlier this evening we all agreed to seek out every last bit of hope from the good news of today. I asked Mom if she could just visualize basking in it, and she said she would.

After a very trying couple of days, we had a break through today. We finally met with Dr. X, a pelvic pain specialist. I think I’m beginning to develop a sort-of Pavlovian response to her, and upon hearing her name, I instinctively relax and associate her with good news and a prolonged sense of calm. Dr. X is thorough, patient, focused and reassuring in a sincere and confident way. I feel like we’re made of flesh and bone in her office. She has other patients with similar symptoms to what Mom is experiencing, so she speaks our language. She uses as many polysyllabic words as all the other doctors, but when she speaks, it just makes sense.

We left there with a comprehensive course of action and a plan that we will be following and testing for the next 8-10 weeks. It includes all the elements that we’ve been discussing as a family:

 

  • Is the approach focused on diagnosing the cause of pain? 
  • Does the approach work together with pain-relieving medications while not relying on them as a long-term solution? 
  • Is the approach focused and systematic? 
  • Do we have a contingency plan if this approach is not producing results?
  • Will Dr. X be willing and able to work together with the pain management/medications specialists?
Prolene mesh

Prolene mesh

The answer to all these questions is yes. That means we finally have a “treatment plan”. It’s simple really, but it’s the first time we have felt that a comprehensive, cohesive outlook is coming together.

In short, Dr. X’s theory is that Mom’s last nerve block sent her abdominal and pelvic muscles into spasm, and that this flare up in pain is coming from, not the nerves, but the muscles. She believes we can release the spasms with frequent physical therapy. She believes this is quite possibly a long-term solution that will provide significant pain relief. With all the customary caveats, she even shared that some of her patients have become pain-free with this regimen. Dr. X was very supportive of the other therapies we’ve been discussing, so we’re full steam ahead on those as well.

So Mom saw the physical therapist late this afternoon, and starting with next Tuesday, she’ll begin a weekly regimen of traveling on Tuesday and Wednesday for appointments with the physical therapist and also with the psychologist who specializes in treating the mental and emotional distress associated with chronic pain.

In a way, we’re back to where we started, but the difference is that as a family, we’re all in agreement with the courses of action we’re taking; we have doctors we trust as partners; and we have all of you who are now intimately aware of how to support Mom in healing so she’ll never feel totally alone in her pain or God forbid it, forgotten or lost in that dark place from which she can’t return.”

16But that was more than two years ago now.  After these therapies failed to alleviate the constant pain, our “treatment plan,” quickly faded, as did our family solidarity, into a silence of confusion, fear and sadness, everyone in their neutral corners, no one with answers.  No one.

The experience with her roster of doctors left me confused about the bigger picture.  How do you make the original urogynecological surgeon communicate with her pelvic pain specialist?  How does the pelvic pain specialist maintain a comprehensive plan with the pain management specialist?  Why isn’t our family physician at the center of this medical mystery, and most of all, “How is it that I am the only one asking these questions?”  I’m no doctor or specialist, but this is logic, project management, common sense.  Why aren’t any of these doctors interested in the cause of such an enigmatic syndrome?  Why don’t they have a hunger to know more, or at the very least, a compassion that would drive them back to the curiosity of their med school years?

We had few facts:

-          Mom is in miserable, insufferable pain.

-          It’s inhumane to allow someone to remain in this condition.

-          The original surgeon who implanted the mesh won’t talk to her/us and doesn’t know what to do.

-          The pelvic pain specialist doesn’t know what else to do.

-          Mom is too precious to lose.

aaron horton two edited

Aaron Leigh Horton

-          A life of indefinite treatment of symptoms with medication, without regard for cause, seems to be a fine solution for every doctor.

I have never doubted my mother’s pain.  Never.  But I know many sufferers are doubted by their own family members and by doctors, simply because their wounds seem invisible.  My mother’s eyes have made those wounds visible to me.  I can read her beautiful, Caribbean-sea-blue eyes as if they were translucent, and I have sorrowfully become all too familiar with what was once an unrecognizable plea for help, and which I can only now describe as a daily terror.

At the expense of seeming biased, my mom is brilliant.  She is creative, educated, informed, a lovely person.  As a former RN, she knew something quite extra-ordinary was wrong.  I ask myself, and so too should you, why would a doctor not listen to someone like that?  And if someone “like that” isn’t given real audience with her original surgeon, then what about the rest of us who aren’t well-versed medically, who don’t have a medical career to lend credibility to our pleadings?

Mom didn’t give up.  She was a student of her own body.  She instinctively knew of the recurrent infections lurking in the mesh and the different type of pain brought on by cysts in and around the mesh.  Imaging tests revealed that she was right.  I have to fight the temptation towards sarcasm at this moment, because I’m amazed that somehow my mother was able to be patient, patient advocate, nurse, doctor, diagnostician, and healer – all in her unthinkable condition.

With the imaging tests confirming her suspicions, she knew the mesh had to come out.  Through the confusion, doubt by other trained professionals, misunderstandings by family and a lack of education about what I’ll call “the mesh syndrome,” she knew the mesh was the culprit.  She called it “the alien” and insisted that it had to come out.

As women, we are taught to become students of our own bodies, understanding them through pregnancy and that surge of monthly hormones, self exams, etc. and with that knowledge, the phrase “a mother’s intuition” makes quite a bit of sense, doesn’t it?

Doctors know what they’ve been taught.  But patients know what they have lived, and we all know that knowledge and experience are very different things.  Neither is more important.  Both are necessary.  Collaboration, based on a shared desire to know the truth, is the highest ground.  Some of the worst emotional and mental agony for my mother and for our whole family has been due to continued invalidation by doctors and the medical community.  Not knowing the diagnosis for medical symptoms that present is not an excuse for lack of compassion, feigning ignorance or negligence.  There are skills our loved ones have had no choice but to develop to endure the excruciating physical therapy; humiliating, soul-assaulting exams; degrading treatment by uncompassionate doctors; and yet another “this surgery will be the one that works” attitude from us who “just want you to get better.”  It is a lot of pressure for anyone, and certainly for someone in debilitating pain EVERY. SINGLE. SECOND.  As doctors, caregivers, family, and friends, we must accept that we have the same responsibility to learn new skills, not by necessity, but by choice.

Our loved ones have no choice.  Mom sat through birthday dinners in thinly-veiled pain; cried alone after having to decline social engagements, grandkids’ soccer games, phone calls from cherished friends; and she sat feeling purposeless, unable to participate in vocations and hobbies that once called to her.  My mom still wrapped Christmas presents, responded to texts, and asked about mine and my sister’s lives, all the while trying to make sense of her new reality life, a life of constant pain and tears, too many to count, and that most damning and worst of all emotions, guilt.  Maybe she’d chosen the wrong surgeon.  What if she had just endured the original pain and discomfort from organ prolapse?  What if it was “all in her head?”  What did she do to deserve this?  And like many of the other raw, unanswered questions, the answer is nothing.  Nothing.  Nothing.  Nothing.

Woman statue resizedIt’s been just over two months since my mother had her explant (mesh removal), but as is often the case, the surgeon could not safely retrieve all of the mesh.  We’re in a holding pattern for now, as she heals and tries to tease out post-surgical pain from the uninvited guest of chronic pain, which has been her constant companion for almost four years now.  We’ve been down this road before.  Do we dare hope this will be “the answer” or do we risk pessimism, so as not to be devastated for her and with her once again when the pain does not abate?   Time will tell.  For many women, including my mother, multiple revision surgeries are needed to remove mesh, reconstruct injured organs and eliminate infection.

This experience has taught me that a life that can be lived while heavily medicated- always trying to stay ahead of the pain- sometimes to avail, sometimes not.  A life can be lived being made to feel like a street thug-drug addict because insurance denies payment for necessary narcotic medications, or family members can’t comprehend the pain level.  A life can be lived with invisible scars and wounds that others can’t or won’t see.  A life can be lived immersed in a lonely, internal, altered state of reality that friends and family are unable to share, understand, respond to or cope with adequately.

My challenge to YOU, husband; YOU, daughter; YOU, aunt; YOU, sister; YOU, friend is:

How will YOU choose to live life alongside your injured loved one?  What gifts and talents do you already posses to understand, respond to, better cope with and support?  Can you use your skills to help make the voices of victims heard?  If you don’t have the skills, get them.  And if you don’t know how, ask me.  Ask someone you know.  If you don’t, who will?  We are their only hope some days and have the power to be part of their hope every day.  I’ve heard it said that having the mesh feels like slowly dying from the inside out, rotting and disappearing.  When our Mesh Angels can’t fight anymore, we must fight for them, be their Mesh Warriors.

Eglise e Saint Maimboeuf de Montbeliard, WikiCommons

Eglise e Saint Maimboeuf de Montbeliard, WikiCommons

Above all what I have learned as the daughter of a Mesh Angel is this: 

ALWAYS, ALWAYS BELIEVE THE CRIES OF PAIN AND AGONY FROM YOUR LOVED ONE, NO MATTER HOW ODD THE COMPLAINT MAY SEEM TO YOU.  AND NEVER, EVER, EVER GIVE UP HOPE that you will get it right, that we as a community will get it right, and that the family life we once had, can be made whole, but it will not come easily or without strife.  Good things seldom do, and it could be argued that our matriarchs are the most good we can experience in life.

Written especially for my mother

 

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61 Comments to “When Family Members Suffer – Watching a Loved One Hurt by Transvaginal Mesh”

  1. Wendy says:

    YOU are a wonderful daughter. As another woman who has had a mesh implant….I applaud the attention that you have obviously paid to your mother. You understand this trully horrible predicament as if you have mesh yourself! The only way that you could know all of this is by trully listening and being “present” for your Mom. So many of us meshies do not have this type of support. Your mother is SO very lucky to have you. God bless you.

  2. Carmel Berry says:

    WOW! What a beautiful piece of writing, what a fantastic grip you have on your mother’s situation. Congratulations Aaron Leigh. I wish you all a fast healing and some peace at last.

    • Aaron Leigh says:

      Thank you so much for your kind words Carmel! I wish you the best as well well. We’re in this together, so let me know anyway I can help. I am always open to feedback/suggestions at themeshwarrior@gmail.com! God bless you!

  3. Nonie Wideman says:

    amazing duaghter with amazing mom…. beautiful writing that touches hearts and describes what so many women suffer through without that loving support …may your mom’s pain decline as her body tries to heal ….it is a long slow process that takes faith , patience and care provided by empathetic skilled doctors who understand the nerve damage done by mesh …….bless you for sharing your journey with your mother …..

  4. `Tammy says:

    May the Lord heal your mother from head to toe, from all pain and infection. God Bless you for being there for her and beside her. Most of all for believing her. Faith is believing without seeing. I will pray for her and her family. Thank you for sharing her story. I have a wonderful 7 yr old daughter who has watched me live a life of mesh pain and many surgeries. The whole family suffers from the battle against mesh and its pain.

  5. Aaron Leigh says:

    Thank you Nonie! I am so grateful to be able to contribute in some way. I often say that the more I help, the more I HOPE, so I’m going to keep doing that until I know what else to do. God bless.

  6. Aaron Leigh says:

    Thank you for your words Tammy, and I’m so sorry that you have been hurt. Please feel free to offer my email address to any of your family members if they need someone to talk to…. God Bless you!

  7. Caroline says:

    Oh, your letter made me cry (again).
    I have just had my second mesh removal and can so understand your poor mums pain, aggravated by the constant invalidation of doctors . Thank goodness your mum is on the way to reduced pain, and maybe at some point no pain. What a wonderful daughter you are to be able to understand and support your mum. Your mother sounds like a lovely women, mesh is so bloody cruel.
    . How incredible that you can describe so well the journey that most mesh affected women find themselves on have.

    Love to your mum and you xxxxx

  8. Julie says:

    Thank you so much Aaron Leigh, I shall ask my own daughter to read this very moving piece you have written, as she understandably struggles to comprehend what has happened to me. I had a mesh removal recently and much of what your mum has gone through resonates so painfully and I am still crying. What a wonderful daughter you are. My heart goes out to your mum and I wish her lots of healing and love.

    Love to you both xxx

  9. julie says:

    Thanks for sharing your very personal story…your level of empathy is amazing…and yes …there are so many unanswered questions …..much love and healing to you and your mum, and all those offering supportxx

  10. Betty says:

    Thank you for writing this! I have thought many of the things you have said, but I’m the patient. I made a comment that “I need a patient advocate-like I am for others in my life”. This was after I had surgery and was given an experimental pain treatment that was supposed to last for 3 days. It was cut short because I became very sick and had the worst migraine ever! I’ve had many migraines also, and like you said it does not compare to the pain of mesh. In my drugged state I was at the mercy of the nurses, my husband was there – but he has not been trained to be an advocate and believed what the Dr.’s and nurses said. He means well, I love him dearly, and he has supported me the best that he can and he is getting better at it. I am so fortunate just for that. The nurses were asking me what should be done! I remember thinking “I can’t even think right now!” I told them to stop the experimental medication, thinking maybe I was reacting to that?? I also had botox shots and a very long surgery of just under 9 hours. They stopped the experimental medication. My head became clearer, but the migraine became worse and I was throwing up every hour. On the 4th day of the hospital stay they came in and had my morning meds. I asked them what they were giving me. One of the medications was at 3x’s my dose – and I had a history of it causing severe migraines and nausea with vomiting. I Immediately notified the nurse I wasn’t taking it. When I asked what had happened, I was told “it was human error”. If only I had a patient advocate, one who knew to ask the nurse what meds, and all the detailed questions that are necessary when we cannot advocate for ourselves. My husband now carries a list of my meds, allergies, surgery history and pain journal. I have suffered through Dr.’s telling me there is nothing wrong. Through multiple surgeries. Through numerous shots, physical therapy, bladder installations. Through humiliation of wetting my pants in public and even having to walk into a Dr. appointment with wet pants. I just saw another Dr. His first comment was “mesh has revolutionized the women’s urological field”. YES, I LET HIM HAVE IT. Later he told me “You’re the poster child for what can go wrong with mesh”. He said he tells his patients it can happen, however he really believes it is “very rare”. Does that really matter? Would we allow drunk driving because the rate of accidents that killed or maimed people are “rare”? We know that is not the case. But there are too many drunk drivers that get away with it. They deserve to go to jail just for taking the keys into their hands and putting them in the ignition. The same is with the Dr.’s who peddle this, the pharmaceuticals who produce it and the FDA who does not do their job of watching over it. Thank you again for writing your letter and validating us one more time. I cried through the whole thing.

    Also, I would like to encourage you that it can get “better” now that the mesh is out. The remaining mesh may cause some problems, and as so many have said “Dr. Raz, will aggressively go it and it is a brutal surgery”. I’ve seen him several times and need to go again. Botox is experimental but I will say it has helped me a lot. I’m not near pain free or medicine free, but I’m getting some things that I’ve lost back. God Bless You for taking care of your mom with your sisters. Incredible in this day and age.

  11. linda says:

    It took me a day or two to read this, because I send a lot of time answering women’s questions about their own pain, because of my blog. I have watched my own daughter struggle with how this has affected me and I often down played my pain to save her more anguish. I am lucky she supports me just as you support your own mother and often without my knowledge she is busy doing research to try to find me something natural to fix me. Then she will send me a link to read in hopes it could help me. Her research has brought me things I would never have thought of and many things have helped me so much. I am on the other side of a full explant and doing so much better, but the damage was done over a long period. I wish your mother well.

  12. AnnMarie says:

    I am also a retired RN due to mesh injury. I had total removal by Dr Raz at UCLA, of the anterior prolift. I highly recommend a consultation with him. He is an amazing, caring doctor with precise surgical skills. The translabial ultra sound shows the remaining mesh arms, so he does not go in blind to remove them. I had gone to another surgeon before him and had a partial removal, I continued with pain. I am doing well, no narcotics, just muscle spasms at time that are controlled with med as needed. The remaining mesh arms were very infected and imbedded in my pubic bone. ALL of it must come out, if at all possible. The surgery was hard, but worth it.
    Your mother is so blessed to have you as her daughter. I also have daughters and a son and have tried to live my life as best I could through this mesh hell. It has been very hard with all the stuff I missed a long the way. I was a healthy 49 yr old. I am on the road to recovery, will never be the same, but have a chance now at a full life with some limitations. This madness has to stop. God bless you, your mom and family!

    • curiousaboutmesh says:

      Hi AnneMarie,
      I was wondering if you could share some more specifics about your surgery. I am curious which product you had been implanted with and when you were implanted with the mesh? My story is similar in that I too had a partial removal that created other problems. I go in September for complete removal with Dr. Raz. Can you tell me how long you were in LA after your surgery and if you had any complications that will make you return to Dr. Raz? I would shout it from the roof tops for every single woman to go to Dr. Raz. He is an amazing physician. I understand if you do not feel comfortable sharing these specifics. Thanks for your post.

    • Sandra Moore says:

      Hello Annemarie. I have had a very similar experience as yours and am scheduled for “lots of mesh” removal with the ends still embedded after 5 years from the initial operation. I know from past blind explorations the surgery is brutal. Could you please tell me how long you stayed before going home. Did you have to travel by airplane and if so do you have any travel tips such as what type of clothing to wear. Regretfully, your sister in agony. l

      • Betty says:

        Hi ladies,

        I know I’m not Anne Marie and not an RN. But I am an experienced mesh survivor. After reading so many blogs, reports, etc. Get the mesh out in one piece if at all possible. If going to Dr. Raz stay 10 days min. He tends to say you can go back much earlier for money’s sake, but I did that and barely survived. It’s the worth the extra if you have it. The plane rides are so painful, it helps to get a backpack or carryon that you can put at the edge under the seat and put your feet on. I got a letter from my Dr. stating that I needed to keep my feet up because of pain. Also, we have rented a car several times in LA. Not worth it. They have a shuttle that is much cheaper. The hospital has paid parking. If you stay at the Tiverton you get a discount – tell them you’re going to UCLA, also they have their own free shuttle back and forth to the hospital. Ask for wheelchair assist on the way home if you’re mobile now. Bring a pillow. It is very helpful if you have a companion – this is the worst pain I’ve ever experienced and I had many, many surgeries before mesh. Make sure you talk about pain control, especially if you have issues with it. These are just some hopefully helpful hints. Blessings,

        • Betty says:

          Sorry I missed the clothing question. Loose fitting is the best. Pants – because the airplane has lots of cold air which can set off muscle spasms if you’re prone to them. I hate to admit this – I have lost bladder control and just wear pads, but I wore depends on the plane – I’m not in control. After the surgery my daughter helped me to change in the family assistance bathroom. Not where I expected to be at 50!

  13. Aaron Leigh says:

    Thank you… ALL of you for your beautiful, heartfelt comments. I have read them aloud to my mother and she is still stunned that so many of you understand and are living what she has been living. The isolation of this injury is one of its most subversive and damaging symptoms. Thank you for reaching out to me and to one another and for considering my words worthy of your time. You are all precious!

  14. Tammy says:

    I cried reading the journey with your mother, it was as if I read my own story. I remain in so much pain, and remain silent, no one gets it, your absolutely right about that. It s a lonely journey and a journey I hope will end soon. Thank you so much for sharing your story.

  15. Barb Vance says:

    Aaron~Your story brought the same tears and goose bumps as I felt the day we met. You truly are in touch with this mesh nightmare that not only your mom is going through but the other family members as well. I can’t wait to share this with my daughters in hopes that they may understand a little better about how mesh has affected my life as well as theirs. You have been blessed with an amazing gift of writing. I as a mother am overwhelmed by the love that you have for your mother and the strong desire to want to help her. I pray that this recent surgery is a success and that she is pain free soon! Much love and many blessings~

  16. Ruth says:

    Aaron Leigh, thank you from the depths of my heart for this stunning piece of writing, laced through with love! Not only have you exquisitely described your mother’s suffering; you have also given us a glimpse of her beautiful spirit! I, too, am blessed with a daughter who deeply understood and sacrificed to support me during the most difficult part of my mesh journey, so I know what a blessing it is for your mom to have a daughter like you. In fact, my husband and entire family could not have been more supportive, and because of this support I was able to get the help I needed (full explant) at UCLA, despite the dismissive attitude of my surgeon and other specialists, and the refusal of our provincial and other insurance to cover the removal surgery. My heart goes out to those mesh sufferers who are not believed by their families–I cannot imagine how unbearably crushing that would be. It does take a long time for our bodies to recover from removal surgery, so please keep up hope!

    • Aaron Leigh says:

      Ruth,
      I am so glad to hear of your success and the support you got from your family! I often say “The more I help, the more I HOPE,” and it is so true. I will keep it up, and thank you for your encouragement and for taking the time to read our family’s story. God Bless!

  17. Linda Ammons says:

    God Bless you Aaron and your mother. I too was implanted in Jan 2006. Over the next 2 yrs suffered every day with constant pain and many ‘repairs’ to help.. Was turned down for the botox treatment by my insurance company because it was experimental. I found a surgeon at the end of 2008 that removed partial mesh and was at least released from constant pain. Since have many other problems perataining to the original implant. My family was not aware of what I was experiencing, so I admire yoru abiility to become one with your mom and support her through this miserable journey. Missing family activities and unable to actually live a complete life, either one of you. You are a remarkable woman and I wish your mom and you a speedy recovery from the agony of what this mesh product has caused to you and many other families. My God be with you and provide you the strenght to recover.

    • Aaron Leigh says:

      Linda Ammons-
      Thank you for your very kind words. I am so honored to have a voice in this struggle and to be at the service of such a valuable group of ladies- mothers and grandmothers I’ve realized, primarily. I’m so sorry that you’ve felt the pain that so many others have- that your family isn’t aware of your struggle. That is the very reason I wrote the article- to help family members understand what is often too hard to communicate when you are injured and in so much pain. I hope you will share my story with your family and that it will help them to understand better the road you’ve traveled. I also welcome you to share my email address with any of them if you think my support would be helpful to them or you. God bless you as well, and thank you for reading.

  18. InAz says:

    Wow…written so eloquently, all of us mesh victims can completely relate to every word that was professed by Aaron Leigh. It is a tragedy Aaron had to be so educated about this horrible product, when it should have never been made to be implanted into a living person. But we are grateful she had the insight to learn and try to help her loving mother as much as she can and continue to help. Just by reading Aaron Leigh’s writing, I feel I know what kind of mother she has and what a great awesome mother she has always been and always will, no matter how much she suffers from the pain. Although she suffers from excruciating pain, she is so blessed to have such a caring, loving, intelligent and understanding daughter. I am sure many of us would appreciate any family member or friends that understood us like Aaron Leigh. It washonor to read your thoughts and experience. Thank you very much for sharing your moms story thru your eyes and heart. You are beautiful inside and out. God bless you and your family…

  19. Aaron Leigh says:

    InAz-
    Thank you so much for your kind words and for spending your time reading mine. That is the highest compliment of all. I share each comment with my mother, and while reading your responses to her story, I’ve glimpsed a budding sense of purpose in her again- even if only for a few moments a day. Even from bed, she can help me come up with ideas, read the uplifting words left for her here and feel valuable and VALUED again. I think that is so important for those of you who’ve been injured by the mesh. You are all so valuable. God bless you too, and thank you again for reading and for reaching out.

  20. Jane Akre says:

    Aaron Leigh-

    You are an amazing woman. I hope your mother is inspired by your words. How could she not be. Thank you so much!!

  21. Dawn says:

    Aaron, the pain that we mesh victims feel is indescribable … But when I read your words about looking into your Mom’s eyes I knew you understood 100%. :( …. Sadly , so many women and men are all alone in their hurting world.. Even though they are surrounded by family and friends. I cried reading your wonderful write up for your hero… Even the best of families sometimes just can’t see the real picture, and for me that’s what hurts the most. I have great support from my family, it had its bumps in the road early on , but because of wonderful sites like this and Facebook support groups , I was able to let my family and friends see the truth.
    Your love for your Mom is wonderful and I can tell you as a mother(48) that having your children understand and acknowledge your suffering brings at least a little light to the very dark place we have all been kidnapped to. God bless you and your Mom.. You are in my prayers.. Thank you for sharing

    • Aaron Leigh says:

      Dawn- thank you so much for your kind words and for taking the time to read mine. I read your comment to Mom just now and she said, “Honey, you are doing so much good. And I know your article was a love letter to me. I feel so loved.” Your comment and all the comments here are helping us and so many other families with a little inch of healing. Thank YOU so much.

  22. Lisa says:

    What a great daughter you are….and what an insult to your mom’s intelligence as an RN, to deny it is the mesh causing her pain….there was a study in 2005, that showed repeated infections were due to the antibiotics not being able to get through the pores of the mesh. Doctors have known for a long time about mesh complications, but deny, deny, deny is the protocol, mostly because they were told the mesh was permanent, and have no idea how to take it out. Partial removal is all you will ever get, and as my infectious disease doctor told me, “the bacteria has colonnized around the mesh, and will only go away temporarily with antibiotics.”
    Dr. Larissa Rodriguez at UCLA saved my life a year ago. I had 13 bladder infections in 9 months. I could have died.
    Thank goodness for ucla, the only ones that do FULL removals and have the translabial ultrasound to “see the mesh”, so the surgeon doesn’t go in blind. Dr. Raz recommended Dr. Rodriguez, and she can get you in sooner if you can’t wait.

    • Aaron Leigh says:

      Thank you Lisa- for your kind words and advice. I am so sorry for your pain and loss. Thank you for taking the time to read my words, and please share with your family or any other Mesh Angel family members that might benefit or need someone to talk to. God Bless!

  23. christina pannell says:

    Thank you so much for sharing. As I read I had tears because I had the horrible mesh placed summer 2007 and my life was never the same. Such a great daughter to support your mom the way you do. I’m 32 and I have no control over my own bladder and pelvic floor most days because of this horrible sling. Thank you on so many levels for sharing. Will be having people read This and hoping for better understanding.

    • Jane Akre says:

      I’m so sorry Christina… at age 32 you have a long road again. I hope you can find a path to healing.. If many women would choose to do so, please share your choices with Christina here. Again, I’m so sorry.

    • Aaron Leigh says:

      Christina;
      I am so, so sorry for your injury. Please share my email address with any friends and family whose burden I could help to carry or share. I know how hard this injury is on everyone. Thank you for your kind words, for reading and for making the commitment to share the story. My hope is that it helps or gives hope to as many people as possible. God bless you and your family. Hoping and helping, ~Aaron

  24. Shana Briceno says:

    Dr raz just saved my life!!!! I had surgery 8/15/2013 and going home 8/24/2013 that man saved my life! I had 3 different kinds of mesh! I am mesh free! There is a better life!

  25. Aaron Leigh says:

    Thank you, Shana for telling us, and for providing hope to others! I am so happy for you!! Please keep us updated. Wishing you a speedy recovery. God Bless. ~Aaron

  26. […] 8,000 claims over the Avaulta mesh, which it’s since taken off the market after women claimed it left them in constant pain as the mesh migrates, becomes infected and perforates organs and nerves. Aside from the lawsuits […]

  27. […] Once my “hearticle” (as I like to call it) was published, and my mother saw the response and how many like us are out there, she became hopeful for the first time in years.  She wanted to help; we wanted to help together.  Here is the article that changed my world, and because of it, I will never be the same- life will never be the same:   When Family Members Suffer – Watching a Loved One Hurt by Transvaginal Mesh. […]

  28. Hope Pagano says:

    I am so sorry for your mom and your family. Your mom is lucky to have such a strong and compassionate daughter.
    As a “Mesh Suffering Mom”, I feel so horrible for becoming such a burden to my family since developing Lupus shortly after my initial mesh implant surgery.
    Your are so right when you said in the beginning of your piece that is us the “Mesh Mom” who is suppose to be taking care of you the “Mesh Kids”. They truly have taken everything away from us, when simply being a good mom is not possible.
    I would never wish this fate on another woman or an other family. Through your eye’s I can see what my family has been going through. Painful and frustrating. Helplessly hoping for a cure.
    Hope

  29. vickie says:

    Is there a Dr. on the East coast that can remove mesh?

    • Aaron Leigh says:

      Hi Vickie;
      Thank you for reading the article, and I hope you have family to help you. I am not aware of any doctors on the east coast who can remove the mesh. If you have any other questions, please feel free to email me. There are also many Facebook support groups you can join, and their members may be able to help you further. Please see a list of Facebook groups and other helpful resources on my blog, here: http://themeshwarrior.wordpress.com/links-resources/

      God Bless,
      Aaron Leigh Horton/The Mesh Warrior

  30. Rebecca says:

    You are a wonderful daughter and even more wonderful friend to your mother. It takes a special person to listen to someone cry in pain knowing that there is nothing you can do about it but sit and hold their hand and cry with them until it passes. It also takes a special person to believe someone is in pain.

    I too am a RN and I have been living with this since 2006 and until a couple years ago never had time to stop and think about why I was feeling worse by the day. I had an ailing spouse and 2 children I didn’t have time to stop and think that something a doctor told me was safe and something I told all those many post-op patients I cared for was safe might actually be to blame for so many seemingly unrelated things. I don’t want to sit and stew over the many things that have failed in my body and the numerous nights I have quietly cried myself to sleep not understanding why my body hated me so. I have one of the most wonderful understanding spouses that God could ever have placed on this earth, but being a male puts him at a disadvantage simply by genetics. I have spent the last 7 years seeing doctor after doctor and never seeming to understand why one diagnosis after another and one treatment plan after another didn’t seem to help. I too thought I had a high tolerance for pain (perhaps it comes with the profession). Since this nightmare started, I have learned that the once thought of as high tolerance for pain has shaken me to the core and tried to destroy my family on a daily basis. I spoke with a lawyer at my husband’s urging about 2 years ago and learned that perhaps some of the pelvic discomfort and returning SUI was related to the pelvic mesh that I was told was safe by a physician that had seen me through 1 normal and 1 nightmarish pregnancy. I felt this overwhelming sense that I needed to call and check on things and make sure that my lawyers had the most current phone # for me. The last time I spoke with them they were still waiting on my op report so even be able to tell me if I was luck enough to be an owner of recalled pelvic mesh. I spoke with them on Wednesday of this week and was given the wonderful news that I was the owner of recalled mesh nightmare. I never dreamed the extent that this mesh could ruin my life. I first logged on to this site Thursday and the more I read the more I cried. I have spent so many days thinking I was crazy and so many nights crying myself to sleep. So many events I was unable to attend. Trying to justify to my now 17 year old why I was able to attend all her sister’s, 4 years her senior, sporting events and games and I was unable to sit through even one football game to watch her perform in the halftime band performance. All the nights I spent feeling guilty for not being able do the things that I had always done. I read only 3 stories and one of them was this one. I can only pray that as I read the first story, the interview with Barb Vance, aloud to my daughters that they can be as understanding as Aaron. My daughters both cried with me as I read it and both had to move the computer from my lap to give me a big hug. I don’t know if they completely understand what is now being revealed as the beginning of my nightmare, but all I can do is pray they one day will understand and will never have to endure something this horrible in their lives. As a nurse, I make an awful patient. I try to endure in silence and have never been able to accept that I might need someone to take care of me as it is my job to care for others. I have always felt that if a patient needed someone to simply hold her hand while she cried it was my duty and honor to grab an extra box of tissues and cry with her. I have not felt that anyone should have to cry with me as I was to be the strong example by which to lead. I have spent the better part of yesterday and today crying and simply feeling lost as what to do next. without a doubt I have to find someone to get this horrible thing out of me before it takes me out of my life!

    I can only pray at this point that I can find a surgeon willing to remove this thing and get on with what is left of my life. As Linda had stated to you while you were building fairy tree houses, you can’t get back to your old life you simply have to pick up what is left and begin anew. I just pray God can give my family the strength and courage to endure what is to come. As I can only pray that I might find the same and the hope and strength to move ahead for what is to come.

    Thanks again for all you have done to bring a voice to this “thing” for which there are no words to describe. You are a true “Mesh Angel” as you provide so much more than you will ever know to each and every victim of this horrible situation. You provide understanding for those that find out they are now a victim of what is supposed to happen to someone else.

    Prayers and Blessings to all effected by this horrible nightmare
    Rebecca

  31. stopmeshimplants says:

    Dear Rebecca,
    Please allow those tears to flow. You are suffering such loss, and we share in your loss. As you read these entries you will hear the similarities among us. Dr. Raz at UCLA in Los Angeles, CA is a mesh expert and physician/surgeon who has lead the way for mesh removal protocol. Call as soon as possible. Get a date for a consultation as soon as you can. It takes months for the consult appointment and then months for the surgery itself. He and his staff are well worth the wait. It breaks my heart when I read your entry. You are not alone anymore. There are thousands of us who share this nightmare of a life. I had my mesh removal and can tell you it was extensive but I am returning to work soon and consider myself one of the lucky ones, who can return to work. I hope you keep in touch with this site. Jane Akre has been a blessing for years for us. Her comittment and dedication to mesh injured men and women through this website is incredible. She will provide you with honest, accurate and the most up to date information about mesh related news. Aaron is a sensitive soul, who writes such beautiful words, about those of us who have suffered, and who have lead the way for so many. I will pray for you and for your family.

  32. Rebecca says:

    You have no idea how much your words, thoughts and prayers mean to me. I am so overwhelmed that even part of this horror of a life I am now living might be related to this mesh implant. I used to be so outgoing and alive and here lately I am having trouble just existing in this hull. I was the picture of health once I had my hysterectomy… until I had my mesh. I used to compete on a horse barrel racing and pole bending. I sold my horse last year. She was more like a family member than an animal. I get up every day and go through my day caring for the most precious Blessing I could have ever wished for, my 10 month old grandbaby that was born in the middle of a snow storm 2 days after Christmas. My mother once saw a plaque in the mall here that said, “Grandchildren are God’s gift for not killing your own!” I never understood that fully until he came along. I was a mom who never missed a play or program at school. I went all over the state to see every basketball game, be at every band performance. I worked days while my husband worked nights. I even did all this while I was in nursing school full time. Now, I walk with a cane. I have had to quit work and file for disability. I have to take 19 different meds a day. Some days I don’t even make it out of bed. There are some days that even my clothes touching me hurts. I had a doctor yesterday tell me that Fibromyalgia is just a diagnosis that doctors give you when you say you’re in pain and there is no clinical reason to be found for why you should be in pain. My husband is so caring and understanding, but there is only so much understanding to be had when someone hurts for no outside apparent reason. I pray for everyone and I’m glad to have something, anything to explain why by body has turned on me when I was the good kid that didn’t ever do anything bad my whole life. Thanks again for all your kind words and prayers. I just pray my family can one day fully understand without ever having to go through this themselves!

  33. stopmeshimplants says:

    Rebecca, I can only imagine how you feel after reading these words and these entries of others who have been injured by mesh. I have not walked in your shoes but I have walked in my own and it led me down the most frightening path, similar to your path. I had several women assist me with their kindness and gentle spirit. They directed me to Dr. Raz about a year ago and I am just now beginning to see and feel the end of this nightmare. It is important that we all help one another. I too experienced fibromyalgia symptoms after my first revision or partial mesh removal. My primary care wrote a prescription for Lyrica. I took that 3 times a day, faithfully, in order to get through a day. Now, after my second mesh removal, I am no longer on the Lyrica. Dr. Raz removed a huge portion of my mesh implant and I do not have those same recurring pains that would shoot down my leg or up into my upper body. Your life will come back to you once you get the mesh out of your body, probably a different life, and less painful I hope. I have read these entries and articles for a very long time and learned from so many giving women. Ask the right questions to the most experienced mesh removal physicians and get all of it out if you can. My experience with a partial removal was it left me with more pain. Dr. Raz will tell you he wants to get it all out. Read and read some more. Learn from those of us who have suffered and have an idea of where you are now. We have been there. Ask questions and don’t assume all doctors will tell you the truth. Shameful thing to say but it is a fact. Keep in touch and remember there are thousands of us who have experienced the awfulness of mesh implants. Once you have gone through these stages of grief, the shock, the crying, the anger, you will be ready to move on. We are all here for you. Prayers are coming your way!

    • Rebecca says:

      Thanks again! I just pray for anything to be better than now. I got the name and # of a Dr here close to home. His office was already closed when I called on Friday. I don’t know if he will be willing to help me he is a urologist. I can only pray that God will help me get what I need. I am caring for my husband, 2 daughters, 1 grandson, and a paraplegic friend. I am financially unable to do much at this point since I don’t have insurance after I lost my job. My husband is awesome an agrees this crap needs to come out no matter what it takes. I can only hope and pray I don’t bankrupt my family before I get any help. Thanks again your support and the support of others I KNOW understand what I’m going through helps more than words can say!

  34. […] For our new Blog Members, you can learn more about me, my mother and my family’s journey with transvaginal mesh, by reading our story here:  My Family’s Story […]

  35. Louise says:

    Dear Aaron Leigh, you are such a wonderful daughter for seeing your mom suffer in agonizing pain, day by day, and caring for her through all this horrible ordeal , she had to endure for years. I don’t have daughters but I have 2 sons who are seeing me, suffer too.I’m 62 yrs.old and I had this thing inserted in me in 2008, for urinary incontinence.The same week I started to have problems. First of all my incontinence was worst and the Dr. said that it was impossible and then a lot of problems, began to surface, ever since.I won’t go into details because you already know how much our lives are ruined because of this ” crap”.I just want to tell you, that your Mom is very lucky to have a caring daughter like you and tell her that I wish her well.Good Luck…

  36. Ellen says:

    Dear Aaron,
    I just had the pleasure of reading your Mom’s story and she had a beautiful Daughter who wrote it.First I would like to say you are an amazing writer,.Daughter,and a good person.I am so sorry for all the pain and suffering she has had.I so understand it has been 7 yrs of hell for me and the Night Mare still goes on.You could not have written about this Night Mare any better.Bless you for the support and understanding you have for your Mom.I wish we all had that.Bless You
    Ellen

    • Aaron Leigh says:

      Ellen- Thank you for those kind words. I have not checked these comments in a while, b/c I’ve been just trying to deal, you know? But it helps so much to read that my words help, and thank you so much for taking your valuable time to read them and support me and my mom. God Bless You. ~Aaron

  37. Patricia says:

    My family really doesn’t want to hear about it, especially my husband. I wonder if he really believes me. He gets irritated when things don’t get done around the house, but sometimes, I hurt too much or I’m just too tired, or both. Or I just need to try to hide from it. And the fact that he really doesn’t care hurts even more. Your mom is lucky to have you.

    • Aaron Leigh says:

      I am about to post my first story in a series of “Warrior Profiles.” Similar to the patient profiles I have written, but they will be first person from the caregiver (or Warrior’s POV). My first story is a big strapping man who lives in Tennessee, so I think many husbands will resonate with what he has to say…. The series will be posted on my blog at http://www.themeshwarrior.com . There are a few stories I’ve done that you might share with him that he could identify with and therefore help him to have compassion and extra grace through this journey with the mesh. I wish you the very, very best and please email me if you’d like to speak in a less public forum. My email is themeshwarrior[dot]com Love~ Aaron

  38. Darcey says:

    The story sounded so much like mine, doctor to doctor they won’t listen. I sat and cried in my doctors office, telling him how I have been suffering years with this pain and my condition is just getting worse. I have a little 7 pound Maltese dog, taking him out to potty and a short walk is almost to much for me now. I hear wheezing in my chest.
    I am on medications now for lupus, also, in addition to morphine and hydrocodone for pain. My Primary care doctor wants to get an MRI for diverticulitis- because an ER CT or MRI showed diverticulos- I believe was read incorrectly at a teaching hospital 80 miles from the ER I was being treated in. Strangely enough after the CT with the supposed diverticulos I had numerous unsolicited phone calls coming in wanting to represent me in a mesh case. Seems somebody saw some something. My OB-GYN, – “Male” says yes there is explainable erosion, he has to use a child’s speculme but then fails to chart it.. A Dallas TX OB-GYN doctor had to do a surgery in that area for something unrelated while I was visiting in the area. He wanted my OB-GYN to CALL him so he could discuss what he saw inside me. That phone call has never happened. I have changed insurance companies this year as I was on one that required me to get referrals first- ROAD BLOCKS. I have thought to myself these doctors took oaths to do no harm to help people, that was there reason for going to medical school. I also was a nurse- I use to look at doctors in a Godly fashion but learned quickly while a student, hearing there comments coming out of the OR that doctors are not to saintly. I want my life back. I want energy, I want to enjoy life again. My days start and end with pain pills. I feel like long screws are driven into my pelvic bones , it hurts to bend, it hurts to walk, I walk with a limp from pain left groin area going down the inside of my thigh. , then my leg I am told this is sciatica. I was told that in 2006 also, I have been fighting this fight since 2004 or 2005, my surgery was late 2002. My case is already sitting in a court room, it is not like if a doctor would help me I well get paid more. I will simply get relief. I did the research and found the specialist in Atlanta that also has an office in LA. They don’t take insurance. I don’t have money I have even loss everything I did have. My oldest son just bought be a used car so I can get around to doctor appointments and pick up meds, there is no public bus system in the area I live. I used to feel like someone I was someone that people looked up to and respected. I don’t feel like I hardly exists or matter anymore. My dogie loves me, I know my oldest son loves me, but he feels so helpless and so frustrated. I would gladly travel to LA or Atlanta or anywhere for someone to help me. I have set up an appointment in Orlando with a lady GYN that specializes with pelvic floor pain, so I pray this will be it, and I had to change insurance companies to do that I couldn’t get a referral. It is 80 miles away so I hope my used car makes it and that I have gas money etc. I am ready to fight this war and be a Warrior. I think we should get Hoodies and T shirts and sell them as a fund raising project just as the cancer survivors have. Do walks, TV appearances whatever will wake up the world. I learned the OB-GYN that was treating me recently not the one who did my original surgery- but this particular OB-GYN was still doing bladder mesh surgeries. I well never go back I have my records. and I am moving on We definitely need conferences we can all join together in for encouragement and strength. Thank you for a place to vent, I hope I said enough things in some type of order to make some sense. The doctors I had been going to want to send me to an orthopedic doctor-somehow that does not seem to me where I go with pelvic pain, please correct me if I am wrong

  39. Ava says:

    This might detour the conversation away from mesh for a few moments because my experience has to do with a different, harmful surgical procedure touted as being “minimally invasive”, but after reading and forwarding this incredible blog on to multiple people, I feel like it’s time for me to comment.

    I am the one in insufferable pain, (I actually writhe all day long; I’m writhing as I type this), and I want to thank Aaron for expressing the conundrum of medical harm – and the fallout for individuals and their loved ones – so poignantly and honestly:

    I was a fit, healthy, athletic woman who went in for a medically recommended breast reduction. The board certified plastic surgeon (highly referred to me by another doctor as a “reconstructive expert”) recommended that he “add on a tiny, little bit of minimally invasive liposuction, in order to balance my upper lateral hip out from breast reduction.” I had so many questions about the safety and recovery of this “tiny add on.” I was repeatedly assured it would be “no big deal.” In fact, “after my surgery I’d see that all of my fears were totally overblown .” Liposuction, (the surgical expert told me), was common, effective for slight contour irregularities on fit people, and what he’d do on me would be so slight and minimal, yet would result in the fact that I’d be much happier in my body than if it wasn’t “balanced out.” He was the experienced surgical expert, he “knew what to do.” I’d feel a little pain for a few days, but I’d be walking around right after surgery.

    The outcome for me is that I am disabled, disfigured, and this surgery will be the cause of my death. I didn’t know that a human being could experience this sort of chronic, torturous pain and yet remain alive.

    Well, it’s hard to see the forest for the trees. My surgeon was so grossly negligent, he treated my skin as though it was fat. He suctioned out essential connective tissue and grafted my skin onto the underlying structure over most of my body from the shins on up. He operated against my consent while I was under anesthesia in “zones of adherence” that no one should ever operate on. So, he impaled my muscles, nerves, tendons, and ligaments. He over-resected the heck out of my breasts while he was at it. I’m disabled, disfigured and slowly dying from what was to be a conservative breast reduction with a tiny little add on, no big deal. Surgeons pinch the skin and guess with liposuction. As far as I understand, there’s no science about it, and has negative long-term health and cosmetic consequences.

    My due diligence research before surgery led me to a (dangerous) website in which plastic surgeons tout their liposuction wares as being minimally invasive wonders. I didn’t know that site was dangerous at the time. With every question I punched in, the search engine led back to the answers of theses “experts”. “Experts” I now know don’t speak honestly or transparently about the true dangers and harm of liposuction, or the way that surgeons will up-sell a procedure to women who need breast reconstruction or reductions.

    My truly detailed research after surgery (every day for two years) tells me liposuction is structurally a mine field; scientifically proven to to cause long-term disease processes as well as having negative long-term cosmetic outcomes, all based on the Biology of Fat, and the unsound, highly dangerous and destructive process of sticking cannulas into the human body to suck out tissue. Obesity is bad. Healthy fat is good. Liposuction is not a cure for obesity, and healthy fat doesn’t need to be removed, the body needs it to perform biologically necessary functions.

    After being impaled a “multitude of times ” and maimed by this self-professed surgical expert with all of the requisite board certifications, I emerged from surgery convulsing; my extremities numb; a putrid metallic taste in my mouth; with portions of my body sucked out against anatomical suitability or need. Basically, I’ve been in a living hell.

    Most of the people around me have resisted believing that I’m in agonizing hell, which is too bad because the invalidation increases the suffering manyfold. Doctors have tried to medicate me up (against my wishes). This results in horrible side effects, but no remediation of pain. This is why I was astonished to see how clearly Aaron described this process of minimization and gas-lighting.

    I would like to see medical harm irradiated, and for those who unfortunately are harmed, I’d like to see them (us) understood with compassion. We must trust the direct patient experience over the doctor’s analytics. Being in excruciating pain AND not being validated for it or treated with respect and empathy is simply too much to bear.

    Allopathic medicine can do as much (or even more) harm than good. I wish to see more accountability in place in the medical field, (including the minefield that is the reconstructive and surgical field), and I believe the stepping stone to achieving greater accountability can begin by believing the testimonials of those harmed.

    One of the lines that hit home for me the most is this: “Doctors know what they’ve been taught. But patients know what they have lived, and we all know that knowledge and experience are very different things.” I would like to be able to quote from this article, with author credit, if that is okay with the author.

    Thank you for letting me speak out here. Today, I have to send this to another young woman who is disabled by what she was told would be a minimal bit of liposuction that was done in conjunction with a breast surgery.

    • Jane Akre says:

      Ava- I had always intended to expand into medical devices of all kind so think you for your insight. ~ ja

    • Aaron Leigh says:

      Ava- also looking into FIDA- Failed Implant Device Alliance. Jane and I know the woman that runs it. She is awesome and represents all failed devices… that may be a good start too.

      God bless,
      Aaron Leigh

  40. […] first met Lady LoLo briefly online just a few days before traveling to Los Angeles with my mother and Barb Vance my own “Patient Zero” .  LoLo was traveling alone, and I could not stand the […]

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We hope you find this a helpful resource. National News Editor, Jane Akre, began MDND with the hope of providing the latest news, information and perspective from the regulatory, industry and patient point of view, something that goes under-reported in much of the coverage of medical devices. The public is just now becoming aware that many devices do not undergo the same scrutiny as prescription drugs and are instead grandfathered in under an FDA loophole that has gone largely unchanged since the 1970s. As a result, patients become the post-market clinical trial subjects, and many suffer devastating and permanent injuries.