Symptom Spotlight – “Ascites”*

Today’s Spotlight Symptom is:  “Ascites”

Many mesh-injured women and men suffer from this condition, yet it seems to be one of those symptoms that many doctors write off as “idiopathic” when seen in mesh-injured patients. Please refer to yesterday’s blog post to understand how doctors use the term “idiopathic” in a clinical setting.

Click here to learn how to Pronounce Ascites

Definition of Ascites: Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) that accumulates in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure. (SOURCE: http://www.medicinenet.com)

Medical-Diagnosis-2-callout-EN1

Below are actual pictures of Ascites in mesh-injured patients. These four women have shared these intimate photos in hopes that their injuries will help YOU, the reader, or another injured person you may know.

THANK YOU TO THESE MESH WARRIORS!

Ascites_Picture_Mesh_Injury

 

“While a tense abdomen filled with fluid is easy to recognize, initially, the amount of ascites fluid may be small and difficult to detect. As the amount of fluid increases, the patient may complain of a fullness or heaviness in the abdomen. It is often the signs of the underlying disease that initially brings the patient to seek medical care.” (SOURCE: emedicinehealth.com)

As I explained in yesterday’s blog, when a patient goes to the doctor with a symptom that doesn’t present in the most common medical context, many doctors do not pursue further understanding about why a common symptom is presenting in an uncommon way.

For example, the most common cause of Ascites is cirrhosis of the liver. So, say a mesh-injured woman presents to her physician with Ascites, but has no history of liver disease or alcoholism, and no cirrhosis of the liver. What happens next; or more appropriately, what should happen next?

The process of diagnosing the underlying cause of any symptom is performed by using the method of differential diagnosis. In the case of Ascites, one other possible explanation for the symptom is:

“Those who have spontaneous bacterial peritonitis (an infection of the peritoneum) develop abdominal pain and fever.” (SOURCE: http://www.emedicinehealth.com/ascites/page3_em.htm)

It is now well known that mesh can cause life-threatening and recurrent infection. So it seems to me that further investigation would be crucial to any patient with mesh who presents with Ascites.

Differential Diagnosis – the determination of which of two or more diseases with similar symptoms is the one from which the patient is suffering, by a systematic comparison and contrasting of the clinical findings.

Physicians are taught to follow these procedures to continue to rule out every cause, until a fotolia_5910589_XSshort list of possible causes remain. Ruling out underlying causes of any symptom(s) is carried out through a sequence of examinations and diagnostic testing.

With this symptom in particular, I am hearing from many women who are sent away by their doctors with some variation of an excuse, claiming ignorance, or at best, simply treating the condition with pharmaceuticals while refusing to perform simple diagnostic procedures and testing that could provide that doctor with more information and eventually to a better form of treatment, or cure ,and the underlying cause of the symptom.

So, when a mesh-injured patient presents with Ascites, and the physician has ruled out the most common cause of this symptom (cirrhosis of the liver), then his training requires that he begin to rule out additional possible causes.

In graph form, the process of ruling out causes for Ascites might look something like this:

ascites

 

Doctors are trained to use the above method with every symptom or illness. It is part of their daily scope of work, so why do I so often hear from women that they go to the ER, to their family physicians, to their OB/Gyns, and to their Urogynecologists with this disturbing symptom only to be told something like this, “I don’t know what this is,” or “I’ve never seen this before.”? The above process for differential diagnosis is relatively simple. Even the diagnostic testing is relatively simple, as noted above.

To find out more about testing used in the diagnosis of suspected Ascites, refer to the below pictures, and click on these links to learn more.

Abdominal Ultrasound

abdominal ultrasound

Diagnostic Paracentesis

drainas-300x206

Computed Tomography (CT Scan)

anatomy_of_a_CT_scan

These women describe to their physicians that this symptom is not simply uncomfortable, but it’s PAINFUL. They describe shortness of breath, difficulty breathing, naseau and vomiting, and the obvious limitations in lifestyle and decreased quality of life – not being able to fit into clothing, not being able to lie on their stomachs, pain when sitting, etc. Imagine all the uncomfortable symptoms of being nine months pregnant, except this situation doesn’t end in the birth of a beautiful new family member.

I find it maddening, sickening, detestable, and downright cruel that so many doctors refuse to treat mesh-injured men and women, especially when these patients present with odd or “out of the box” symptoms.

I encourage you to print and use the above graph if you suspect you have this symptom. Bring it to your doctor. Earlier this week, I spoke with a woman who went to her Ob/Gyn with this symptom, and he simply told her there was nothing he could do to help her. What?! She even asked for some of the testing in the above graph, but still the physician refused to help her.

The question we should be asking is “Why?” The action we should be taking is to educate ourselves about our own bodies and what our bodies are trying to communicate to us through symptoms. Our physicians must understand that we know they are refusing treatment, and we know that it’s wrong to do so.

Stay tuned for tomorrow’s “Spotlight Symptom.” I hope this information will help you when you visit your doctor, seeking treatment and a better quality of life.

The_Mesh_Warrio_Flower_logo_150x150_thumbnail

*I am not a doctor. This information is for educational purposes, and is based on my own experiences. Seek medical attention for this or any other symptom.

 

 

 

“A Doctor A Day” – Costas Apostolis, MD/Akron Urogynecology Associates AND What Would You Say?

Hello Warriors;

Here is your “Doctor A Day,”  Costas Apostolis, MD at Akron General. You know what to do!

Costas Apostolis, MD is currently recruiting new patients for mesh implant in Akron, OH.

Costas Apostolis, MD is currently recruiting new patients for mesh implant in Akron, OH.

Akron Urogynecology Associates

Akron, Ohio, United States, 44333

Contact: Connie Cottrell    330-344-7681

Principal Investigator: Costas Apostolis, MD


Science with Hope

Many of you may have seen the recent video posted by Dr. Shlomo Raz and his team at UCLA. Associate Professor, Division of Pelvic Medicine and Reconstructive Surgery, Department of Urology, Ja-Hong Kim, MD, and a fellow of Dr. Raz, hosts a 20-minute video presentation titled, What You Need to Know About Vaginal Mesh for Female Pelvic Surgery.” Dr. Kim opens her talk by saying, she will provide a “clear, concise overview of mesh.” Finally, a well-respected surgeon is putting transvaginal mesh in plain English. This video will surely provide a much better education for women who are considering mesh as an option for repair of POP or SUI. Please watch the video below, and then read the rest of my post.

  • 1:25 – Dr. Kim defines Stress Urinary Incontinence (SUI) as a loss of urine during physical activity due to weaknesses of the pelvic floor. Dr. Kim notes that a woman’s lifetime risk for developing SUI is 20% – 40%. A 20% variability represents several standard deviations. I believe it is the most conservative approach to cite the highest level of known risk in treating SUI with mesh: 40% LIFETIME RISK.
  • 1:42 – Dr. Kim defines Pelvic Organ Prolapse (POP) as a vaginal bulge of pelvic organs resulting from weaknesses of the pelvic floor and cites that a woman’s a lifetime risk for POP is 30% – 50%. Again, with a 20% variability, I believe the most conservative approach, when contemplating repair with mesh, would be to use the highest incidence of lifetime risk: 50% LIFETIME RISK.

The Coloplast Restorelle® Mesh Versus Native Tissue Repair for Prolapse study for which I’ve been posting “A Doctor A Day,” has INCLUSION and EXCLUSION criteria.

I’m concerned about two of the INCLUSION criterion, specifically:

  • Subject has pelvic organ prolapse with leading edge at or beyond the hymen. At or beyond the hymen is defined as POP-Q scores of Ba ≥0 and C≥ -1/2 tvl or Bp ≥0 and C≥ -1/2 tvl
  • Subject reports a bothersome bulge they can see or feel per PFDI-20 question 3, response of 2 or higher (i.e. responses of “somewhat”, “moderately” or “quite a bit”)

These two criterion for INCLUSION are part of a longer list of criteria that defines a “good candidate” for the study. A woman who has early stage prolapse (Ba ≥0 and C≥ -1/2 tvl or Bp ≥0 and C≥ -1/2 tvl) and/or answers questions about how “bothersome” a “bulge” is with the answer of “somewhat” or “moderately” bothersome is considered a “good candidate” for the study.

In my many discussions with urogynecologists, some of them have been shocked, and even quite upset, that a mesh implant was used for a woman in early or moderate stage prolapse. These physicians said,

“Treatment of POP with surgical intervention and mesh implant should be a TREATMENT OF LAST RESORT.”

According to the University of Virginia, there are stages of POP, 0-4.

  • Stage 0 means that there is no prolapse. The pelvic organs like the vagina, bladder and rectum are perfectly supported by the ligaments in the pelvis.
  • Stage 1 means that there is virtually no prolapse. The pelvic organs are very well-supported by the ligaments in the pelvis.
  • Stage 2 prolapse means that the pelvic organs are not as well supported by the ligaments and have begun to fall down. In Stage 2 prolapse, the organs are still inside the vagina.
  • Stage 3 prolapse means the pelvic organs are beginning to bulge to or beyond the opening of the vagina.
  • Stage 4 prolapse means the pelvic organs are completely outside of the vagina.

Do you know which stage of prolapse you have/had at the time of mesh implant?

Do you think it is ethical for a study to recruit NEW patients who are in early-stage prolapse?

If you could talk to a woman who is considering participation in this study, what would you tell her?


NOTE: MY OBSERVATIONS SHOULD NOT BE TAKEN AS MEDICAL ADVICE AND SHOULD NOT BE A REPLACEMENT FOR SEEKING THE MEDICAL OPINION OF YOUR DOCTOR. THIS INFORMATION IS PROVIDED AS AN EDUCATIONAL TOOL ONLY. MY COMMENTARY IS MY OWN OPINION, BASED ON MY OWN RESEARCH AND MY OWN EXPERIENCE. THE QUESTIONS I RAISE ARE MEANT TO BETTER EDUCATE YOU, SO THAT YOU MIGHT HAVE A MORE PRODUCTIVE CONVERSATION WITH YOUR MEDICAL CARE TEAMS.

“A Doctor A Day” Keeps This Study Away/Novant Health Urology Partners, Winston-Salem, NC

Hello Warriors!

Dr. John J. Smith, III of Novant Urology Partners in Winston-Salem, NC

Dr. John J. Smith, III of Novant Urology Partners in Winston-Salem, NC

Please be aware if you live in the Winston-Salem area. Dr. John J Smith, III of Novant Health Urology Partners is recruiting for implant of new women in a study sponsored by Coloplast and ordered by the FDA.

Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Novant Health Clinical Research

Winston-Salem, North Carolina, United States, 27103

Contact: Kim Robinson       krrobinson@novanthealth.org

Principal Investigator: John J Smith, III, MD


A Crazy Little Thing Called Hope

In the midst of working our way through the crazy-making maze of our healthcare system as it is now, how do we stay HEALTHY? How do we avoid danger?

I am not suggesting that you follow this physician’s advice, but I find it very telling. The last time I was in the ER with my mom, her admitting ER physician came to speak with me about some of her test results. Completely unsolicited, the FIRST thing he said to me was,

“The best way to keep your mom healthy is to keep her away from doctors.”

WOW! This unsolicited advice from a doctor I had NEVER met, who knew very little about my mother’s medical history! Honestly, I was not surprised he said it. I was just surprised it was the FIRST THING OUT OF HIS MOUTH!

While we still have the ability to CHOOSE which doctor we believe will best provide care for our speciality care needs and our total health, we can continue to educate ourselves – about our personal medical history, medical terminology, and the benefits and risks of any medications or treatments that may be recommended to us by our healthcare professionals.

Pause-iconLately, I’ve been learning to “push the pause button.” Stop and think. If my doctor recommends a treatment, it’s responsible for me to research the risks and benefits and then ask for a second consultation once I have more education about any treatment that will affect my body and my life.

So today, as you think about your own life, your own body, your own health; think about pressing the pause button. Stop. Think. Research. Consult. Decide. All of those actions do not have to be done in one consultation with your doctor.

YOU are the most important person in the room when you’re with any doctor. After all, it’s your life. With “pressing pause” comes hope and a renewed sense of control over your own health destiny. I hope this little, seemingly obvious, technique helps you regain a sense of your options and a sense that YOU are the MVP in your healthcare decisions.

A “Doctor a Day” Keeps This Study Away/Karolynn Echols/Cooper University Hospital, Camden, NJ

Hello Warriors;

Here is your doctor-a-day to call regarding the Coloplast Restorelle vs. Native Tissue Repair study, currently recruiting new patients for implant.

Karolynn Echols, MD

Karolynn Echols, MD

Karolynn Echols, MD

Cooper University Hospital
Camden, New Jersey, United States, 08103
Contact: Gunda Simpkins, RN    856-968-7547    simpkins-gunda@cooperhealth.edu
Principal Investigator: Karolynn Echols, MD, FACOG

“A Doctor A Day” – Douglas Van Drie of Grand Rapids, MI

Dr. Douglas Van Drie of The Institute of Michigan Female Pelvic Medicine & Urogynecology is actively recruiting for the FDA 522 Study:

Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Dr. Douglas Van Drie of Grand Rapids, MI is participating in the study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

Dr. Douglas Van Drie of Grand Rapids, MI

Female Pelvic Medicine & Urogynecology Institute of MI
Grand Rapids, Michigan, United States, 49503
Contact: Beth Rogers, RN    616-588-1800    brogers@grwh.org
Principal Investigator: Douglas Van Drie, MD

You know what to do MESH WARRIORS!

Previous “Doctor A Day” Blogs:

Dr. Arturo Menchaca/Paris Community Hospital, Illinois

Dr. Sherry Thomas/Angoura Hills, CA

Dr. Ty Erickson of Rosemark Women Care Specialists in Idaho

Dr. Babak Vakili of Delaware’s Christiana Care Health System

Dr. Oz Harmanli of Baystate Health System, Springfield, MA

A DOCTOR A DAY KEEPS THIS STUDY AWAY/Dr. Ty Erickson & Lisa Boozer, CRC, of Rosemark Women Care Specialists in Idaho

Hello Warriors;

As I write what is now the fourth blog, citing “a-doctor-a-day” who is participating and actively recruiting for a study that would implant NEW WOMEN with Coloplast’s Restorelle Direct Fix mesh product, I realize that my blog posts could come across as a “witch hunt” of sorts. This notion couldn’t be further from the truth.

I have a genuine and deep concern for the 900 women who would be participants in this study if it proceeds, and I am trying to engage physicians. I reference fact-based evidence, cite published scientific research, and offer these doctors information about the FDA warnings regarding mesh implant, especially for POP.

If you are a mesh-injured patient, you are keenly aware that many of your physicians ARE NOT AWARE of the FDA warnings but became aware when you, yourself, brought it to your physician’s attention.

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

View my letter to the FDA (left) and CLICK HERE TO READ MY BLOG ABOUT IT, citing specific reasons with third-party sourcing. You may want to use some of this information when you contact physicians recruiting for this study.

In addition to my posts here, I am calling and/or emailing EACH doctor/lead researcher personally. I IMPLORE YOU TO DO THE SAME.

I want our community to engage in a conversation with these folks to explain WHY THIS STUDY IS FLAWED IN DESIGN AND IS UNETHICAL.

I AM NOT MERELY “EXPOSING” DOCTORS OR TRYING TO HARM THE REPUTATIONS OF THESE FOLKS. I am trying to start a dialog, so that our community’s voices are heard, and so that these doctors know how large is our community of severely injured people.

To that end, today’s doctor to call/email is:

Dr. Ty Erickson and his colleague Ms. Lisa Boozer, CRC, of Rosemark Women Care Specialists.

Rosemark Women Care Specialists
Idaho Falls, Idaho, United States, 83404
Contact: Lisa Boozer, CRC    208-557-2981    lboozer@rosemark.net
Principal Investigator: Ty Erickson, MD, FACOG
Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair.

Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair at Rosemark Women Care Specialists in Idaho.

As a gentle reminder:

When/if you call, start by listening and asking the doctor/liaison questions. Try to open an honest dialogue about why you think the study has the potential to seriously harm women, and why this harm is PREVENTABLE, since there is already a population of implanted patients to study.

When you call, be as clinical and brief as possible. Our stories are SO PERSONAL and of SUCH DEVASTATION, that we can be tempted to rely on any ear to listen to the horror of our stories.

I am suggesting that you call these physicians in an effort to help the patient population who is being recruited. Lean into your community for social support for your own injuries and for coping with the significant loss of quality of life that you endure.

The goal is making these calls is to INFORM physicians about the PREVENTABLE harm this study will cause. 

Here are some questions you might start your conversation with:

  • You might first start by asking listening. Document his/her answers.
    • WHY, doctor, are you participating in this study?
    • HAVE you seen the research proving mesh is unsafe as a permanent implant?
    • ARE you aware of the adverse reactions of the patients you have formerly implanted? Would you follow up with them and ask how he/she is doing 3+ years after implant?
    • ASK – What’s in it for you doctor? Are you aware of the legal implications?
    • ASK – Are you being personally compensated for this study and in what ways?
    • ARE you aware of the liability you face In federal Bellwether trials, some physicians who’ve testified no longer practice. Are you aware that significant liabilities may be of great future burden to you and your practice?
    • EXPLAIN the reasons you do not want this study to proceed.
    • EXPLAIN to them that your intention is to inform, give he/she more resources and information to have the chance to CHOOSE to halt participation in this study.
    • BUT, if he/she will not take your call seriously (or take your call at all) you will take other actions, like contacting your state’s AG.
    • INFORM he/she that you will use your voice online to dissuade women from becoming patients of their practice.

Below is a list of physicians/facilities I have already contacted. If you have not yet contacted one or more of these physicians, please click on the link for contact information, and please contact them immediately.

If WE do not make our voices heard, who will? We are PLAN B, and there is NO PLAN A.

Dr. Babak Vakili & Jennifer Mann, BSN RN: Delaware’s Christiana Care Health System

Dr. Sherry Thomas/Agoura Hills California

Dr. Arturo Menchaca/Paris Community Hospital of Paris, IL

Public Access to Mesh Trials – It’s a Constitutional Right

The layout of a typical U.S. Courtroom

The layout of a typical U.S. Courtroom

Please read my most recent blog for @BaronBudd | Protecting What’s Right! In it, I explain how you can confidently exercise your right to observe our judicial system at work for “We the People!” It can be intimidating, but after reading my post, you’ll be “In the Know.” Thank you Baron and Budd for helping us to elevate the voices of those who are mesh-injured and their families.

Access the full post here:

Public Access to Mesh Trials – It’s a Constitutional Right.

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.

Why I Don’t Ask “Why?” Anymore via Baron Budd

I am deeply grateful to Baron Budd for giving me a broader and larger platform to tell my story. I am honored to be part of their mission. They are good people who want the same things we, the mesh-injured and our families wan’t. I am truly grateful for their support of our mission at The Mesh Warrior Foundation for the injured, and I am profoundly changed by their grand influence in my life and the lives of so many.

I invite you all to read my latest blog via Baron Budd & tell me what you think: http://goo.gl/0mjiAP.

I am grateful that they allow me to share my voice, as it is, as I feel. This is simply where I am today: one daughter in one situation, in the struggle to understand the harm that has been done to each of us and our great American “civil” and “just” society:

Read more here:  http://goo.gl/0mjiAP via Baron Budd

I still look up. I just ask different questions now.

I STILL LOOK UP FOR ANSWERS; I JUST HAVE DIFFERENT QUESTIONS NOW. AND MANY, MANY SHATTERED PARADIGMS ABOUT THE WAY THE WORLD WORKS.

Transvaginal Mesh Litigation – Pharmaceutical Lawyers

Please follow the link to watch my public service announcement (PSA) video. I am so grateful to Baron & Budd for giving me a platform to tell my family’s story so that we can keep others from this preventable harm and find ways to help those already injured. Family members and Caregivers are a welcome part of our community also.

Transvaginal Mesh Litigation – Pharmaceutical Lawyers.

 

#NotOneMore

Love, Aaron