Breaking the Silence: Nancy Gretzinger, Author, Educator, Patient Advocate, Mesh Victim

//Breaking the Silence: Nancy Gretzinger, Author, Educator, Patient Advocate, Mesh Victim

Breaking the Silence: Nancy Gretzinger, Author, Educator, Patient Advocate, Mesh Victim

Dr. Nancy Gretzinger and Christian Twiss, MD

Mesh Medical Device News Desk,  Nancy Gretzinger, Author, Educator, Patient Advocate, mesh victim is Breaking the Silence

Like many women, Nancy Gretzinger experienced mild incontinence.

Since she was having a pool installed in her Phoenix backyard, she thought it might be a good time to check out her treatment options.

The 66 year-old, with a doctorate in education, is no dummy, however Gretzinger admits today she did NOT do her research. She figured with two spinal cord surgeries this incontinence surgery would be a piece of cake. The doctor said mesh was the answer. The doctor never told her that in 2009 there was an FDA warning about mesh, though it said complications were “rare.”

The doctor did give her a pamphlet and told Nancy she had implanted many meshes successfully. For Gretzinger, the doctor chose two meshes to use that December day in 2009 – the Ethicon Gynecare TVT sling, to treat incontinence, and a Boston Scientific Uphold to treat pelvic organ prolapse.

Gretzinger had already endured a spinal cord surgery and a malignant tumor in the bowel and bladder area removed. She told the doctor about that surgery, but it had no bearing on the mesh surgery.

Unfortunately, from December 2009 until June 2010, Gretzinger could not urinate on her own.  The mesh was too tight, restricting her urethra.  So the same surgeon attempted to release the mesh in her office. It didn’t work.

Then in 2010, she performed a 7 hour surgery, picking out mesh from the urethra. At this point, Gretzinger was totally incontinent and she decided not to return to her surgeon.

After shopping around for a new doctor, Nancy decided on Dr. Christian Twiss at the University of Arizona Medical Center in Tucson. Dr. Twiss trained under UCLA’s Dr. Shlomo Raz, considered a leading authority on mesh implantation and removal.

DR. TWISS

Dr. C. Twiss, Urologist, U of Az.

Nancy called Dr. Twiss “The Man” because he was so thorough and patient. The three-hour round-trip drive completed in a day was well worth it. Even though her outcome was not the best, he was with her every step of the way.

She tells MND he was a very caring doctor. He listened and explained all that could go wrong for least to worse.  He did surgery June 2010 and implanted what he called a sling made of Ethicon Prolene Soft mesh. This was the first time she had urinated on her own since December 2009. The bladder did not drain completely, so she had to self-cath.

Gretzinger underwent multiple surgeries for the next four years including medication, nerve stimulation and Botox, all in an attempt to have a normal urination.

Before, during, and after the surgeries, Nancy was administered Cipro to prevent infection. Cipro, in the fluoroquinolone class of antibiotics, is associated with tendon rupture, nausea, vomiting, rash, headache, and an allergic reaction. Researchers are now saying Cipro and Levaquin elevate the risk for Aortic Aneurysm. See the BMJ. 

It brought on its own host of problems for Nancy, among them tendonitis, pancreatitis, UTIs, increased resistance to antibiotics necessitating PIC lines for intravenous treatment. The FDA conducted a study and the results can be found here.

She retired in January 2014, believing it was in her best interest for her health. Working with special needs preschool students, she found she caught everything they brought into the classroom. Her immune system was compromised and so was her urethra.

In December 2014, her urethra was removed and closed; the sling/mesh had entwined within the urethra.  A suprapubic tube was inserted into her bladder, so urine could be released.  A larger tube was also changed to stop any further blockage.

To address the depression that followed she met with a life coach who told her, “You have to say goodbye to the old you and hello to the new you. We have a lot of ladies who are still angry, rightly so, and keeping them from moving forward. The stress is likely causing more damage or increasing the likelihood of immunity problems and other medical complications.”

 

WRITING FOR RELIEF

Gretzinger started writing a blog, she says for “cathartic reasons” and did contact some mesh sites about tips to living life with mesh.   She couldn’t find them, so she tackled that gap too.

Her tips included, triple sheeting your bed with inexpensive plastic waterproof mattress pads and made up with sheets and pillowcases. If you do leak in middle night, strip a layer and go back to sleep; wearing incontinent panties that will hold up to six ounces of urine; anyone with a UTI must have it cultured so they know what kind of UTI it is and what kind of medication to pursue.

The list went on and it, with additional amounts of research, gave Gretzinger enough for a book to share with others facing their new normal.

Enmeshed – The Truth about Treating Incontinence and Mesh Complications” was published in March 2018 and is available on Amazon. Dr. Twiss wrote the touching Foreword to this book.

She wrote the book to share her experiences with other women who are suffering from complications after having a mesh surgery or from taking Cipro.

It is the latest media attempt to address the hundreds of thousands of mesh injured patients globally as the mainstream media in the U.S. offers scant coverage, unless there is a multi-million dollar jury award. The Bleeding Edge documentary on Netflix is another attempt to break through the silence.

Gretzinger remains positive.

“Our first goal is to get the polypropylene mesh off the market. I know it’s class II (incontinence) and class III (POP), and I’d like to see Cipro off the market too.”   She is marketing herself as a public speaker through her website,  http://www.drnancyspeaker.com.

Gretzinger sees her future role as a patient advocate.

Her next plan is to take her advocacy, to the urogynecologists who make up AUGS, American Urogynecology Society.

 

AUGS MEETING IN CHICAGO

The group of nearly 2,000 doctors is meeting in Chicago, October 9 -13 at the Hyatt Regency Chicago for Pelvic Floors Disorder Week 2018.

“I plan to distribute my book with a nice letter about staying current and with sites about mesh. Frankly, I would love for the doctors to purchase the book at cost and give to mesh patients who have already had surgery.”

And if doctors are not receptive to her presence?

AUGS has in the past remained an organization that heavily relies on industry support to underwrite its annual convention, including a trade show by industry showing its latest “innovations,” all for sale to prospective doctor/customers. In 2016, the only panel on litigation that would included a mock trial to discuss the issues being brought forth in litigation, was cancelled at the last minute.

Gretzinger says, “Are they telling us mesh is not harmful and all these lawsuits are false? Each of six pharmaceutical companies set aside one billion to pay off lawsuits, that’s significant.”

At the very least she plans on continuing her advocacy.

“We need to push all mesh victims to register with the FDA their adverse events. It must be done. It is under-reported and until the true numbers are reflected, it will remain an insignificant issue,” she adds.

Gretzinger and a number of mesh-injured woman and their families plan to attend a rally October 11, 2018, 9 am outside the Hyatt Regency Chicago, 151 East Wacker Drive, Chicago. IL 60601 during the AUGS annual meeting.   ###

 

LEARN MORE:

AUGS- PFD Week, October 9-13, Chicago, IL

Order “Enmeshed” on Amazon here

How to File an Adverse Event report with the FDA

Facebook Event on AUGS Rally 

AUGS Code of Conduct

MND, Dr. Christian Twiss, Concerns and Consent, October 28, 2013

By | 2018-09-20T16:56:16+00:00 September 20th, 2018|Featured|3 Comments

About the Author:

I’m National News Editor, Jane Akre and I began Mesh Medical Device News Desk aka Mesh News Desk (MND) in the summer of 2011 just after the Food and Drug Administration issued an explicit warning to the public that complications associated with surgical mesh used for prolapse repair (POP) and incontinence (SUI) are NOT rare! That was the starting point for the litigation you see today and thousands of lawsuits have been filed by women whose lives have been altered, some permanently, by the use of this petroleum-based product.

3 Comments

  1. Still Standing September 24, 2018 at 2:00 am - Reply

    While sitting at mayo with the ultimate incontinence device: a permanent colostomy since Thursday I dont have an anus-., a rectum or a vagina since Thursday, and as a former hospice director and grief counselor, with a Masters in Psychology, I find I disagree with the too positive ( some psychologists call it toxic positivity) psychology about needing to say goodbye to the old parts of our body. We didnt just trade in used car parts. Here. There is a need for an integration and reconciliation of the old self with the new reality that should happen with a trained therapist. I took the Harvard Well Coaching in the midst of my ten year slog and just felt that the wellness model didnt do what it needed to do for integration of the two vastly different life expectations. It may be adequate for some women, but if you are struggling, dont be hard on yourself if you cant muster a friendly wave to these at these non functioning parts from the back seat of an old sedan. It is brutal and difficult work and some people need an experienced therapist.

    Good luck at the AUGS conference. Just remenver that a lot of physicL therapists go as well so they learn ways to manage or treat pelvic floor disorders. It is more that a place for industry to showcase their products. Generally scientific organizations will showcase current scientific literature. Dont know what the schedule is this year but I think therr is a lot of interest in treating post mesh pain.

    • Jane Akre September 24, 2018 at 10:47 am - Reply

      Still- so good to hear from you after your ordeal. Again, you impart wise words, I just wish you could have an hour and the ears of all of those in attendance at AUGS. I believe you would change minds and hearts.!

  2. Nancy K Gretzinger October 2, 2018 at 1:32 pm - Reply

    Still Standing-
    Thank you for writing your perspective and hopefully mesh victims have a broader aspect with your input.

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