World Mesh Awareness 2019 Part One
This blog would be far too long to post, so it will be posted in more than one part. This is the first.
This year I want to honor a woman who helped many get through their own mesh journey, during a time when she was struggling through her own injuries. First a little background about our own relationship.
I saw a memory a few days ago through my personal Facebook page and it was to tell me how we only became friends four years ago. I sat there reviewing this and thought about the fact, that almost two years ago, she died and what an impact she made in two years during the time I knew her.
Some of you may know her as Beth Berry, whereas her true name was Davonne Atkins. I myself knew her as Beth Berry for a long time, before she told me her name. I had been reading comments she left on my blog and knew she was a true warrior, fighting for truth and justice for other women.
If you look up the word ‘activist’, this is what you will learn. ‘A person who campaigns to bring about political or social change.’ You may not realize this, but over eight years, many women have posted comments on blogs that I have written and without knowing it, they became activists for change because of mesh implant and helped many other women, during their own ordeal.
One such woman is now an angel who is no longer with us, but she became an activist when she was suffering, not just because of her implant, but she also suffered even more, at the hands of a doctor who attempted to remove her mesh.
Her name is Davonne and whenever I receive a comment now, which I have to read and approve, I often see her comment words on the same blog, sometimes it was when she answered another woman who was going through her own complications.
Mesh complications can be vastly different for each woman. For some it affects their bladder. For others the colon. Then there is a slew of autoimmune diseases, let alone all the issues of financial burden and loss of relationships.
Recently when I approved a new comment, I saw Davonne’s first post, telling part of her horrific story about what happened to her. I realized that her words live on and what she did to help other women was an act of kindness and bravery. So, I wondered if I could do a search in comments on my blog, using her pen name of Beth, to read them all and share them with you. I had not tried this before, and it worked.
When I reread her words, I knew I needed to post them in a new blog under, because if she was alive, she too would be part of World Mesh Awareness Day 2019. Now she is. I want her family to know that she was a wonderful woman who was more than a wife, daughter, sister and mother. She was a true activist who did what she could, in the fight against the War on Mesh.
I am going to give you her comments by date and if she answered another woman, I will share that too, along with my answer. When I first began reading her comments, it was another day of answering comments, for me, while I was going through my own mesh complications. Some days I struggled and wrote short answers. Some days I was enduring lack of sleep due to pain. However, I did what I could to let women know their voices were heard and I cared about what they were going through.
Now here are her own words.
June 30th 2014 This was the first comment she left on a blog called Miniarc System.
thank you for your website….. I’ve read and read for almost a year now.. I am 42 years old, used to be a very healthy go getter, love to work in my yard, love to be outside, very active, married, 3 kids. I’ve never posted.. as I type this I am laying in my bed (when I was a little girl) at my mom’s house.. she is having to take care of me..
I just had surgery last wed to remove the mini arc anchors and mesh and stones. I’m really not sure what they removed.. I do know that I went to surgery at 730am and at 530 pm I had to have emergency surgery..
when I came out to recovery from my 1st surgery, I woke up , I just didn’t feel right… I had this pain in the top of my bladder it was real hard , my catheter was full of bright red blood, they sent me to another little area after recovery I guess post op? I was in PAIN SEVERE pain! I kept saying something was not right. the nurse had this huge syringe, she had sterile water that I was holding with my right hand, she would draw up water and then push it in my catheter, it would not go every time, there was blood all over the room, all over me, it was terrible, I think I was butchered. my mom was in there, I kept crying out in pain, the nurse just kept “retrograting”(not sure if that what she was calling it), my mom went for help because the nurse I had, nobody would help her.. a nurse would come in, they would just look and ease out. the head nurse came in seen what was happening, went out and came back with versed(sp). Then I went to surgery again.
this was going to be outpatient. I ended up losing ALOT of blood.. they kept me till Saturday. I am so sick and weak. I don’t understand why this happened. I’m devastated. my 65 year old momma and dad are taking care of me from this surgery, this is not fair to them. I’m sorry if none of this make sense. my mind is not working right.
I’m so sorry that we are having to deal with all of these problems. it is so, so sad.
much love and hugs to you all
Also on June 30th 2014
I should let you know I had a mini arc sling in may of 2011 because I used the bathroom when I coughed or laughed or ran, by my gynecologist. started having multiple problems July 2011. but was told it was UTI, yeast, hormones, lupus, fibromyalgia, blah blah, had ovaries and tubes removed July 2012, then placed on tons of hormones. I am a total mess.. (had to have hysterectomy 2-02 after my 3rd child. got infection in my c-section incision, was told it was staph. this was before sling)
I’m in Tennessee
This was my answer.
Beth I knew how bad this sling was for women and just because it says ‘mini’ does not mean it is any safer than any of the other types. I wrote a blog about it. Thank you for adding again that women need to first look through the operative report and if they cannot find the name, get the nursing notes as you suggest. The information I needed about mine was on there not on the operative report. This is the mini arc.
http://meshangelnetwork.com/2014/06/mini-arc-system/ Dr. Raz will help you I have no doubt, so you just go and then work on the future.
It was after reading her comment, I contacted her by email and I talked to her over the phone. Even though she was clearly suffering she had a tinkling nervous laugh, with her wonderful Tennessee accent. We spoke over the phone when she was up to it and I learned more about her. She did not post comments all the time, because she was going through so much sadness and depression, just like most of us do. But she began working towards her own future, enlisting her family for help to get out to UCLA. Now read on.
January 5th 2015 This blog was called Mesh & the Elderly.
THANK YOU…I don’t know where I would be if it weren’t for You…
To anyone that has been effected by this Hell..
I have my appt with Dr. Raz next Tues.. I didn’t realize that I needed to know exactly what type of sling I had in me until reading Linda’s blogs.. I knew I had a Miniarc sling and I knew that it was put in June 2011, but I didn’t know that I needed that information. I started having problems August 2011, but I didn’t know Any of my problems were because of the sling until July 2013.. I’ve had 4 revision surgeries, oh how I wish I could have waited.. I know there are women that have had many more surgeries, love your hearts…This is so sad. I had this surgery to have a better life.. I did not know that it would RUIN my life.. I am so much worse after the “revision” surgeries. I was told the sling and anchors would be removed.. Not just “clipped away flush with my bladder” My last surgery I was told the sling and right anchor was removed, but he couldn’t find the left one so it’s ok..
The pain, depression, seclusion, the mental fog, the skin hives and eruptions, my hair falling out, my teeth crumbling, sleepless nights ,and many more things, all of this is a total nightmare. I feel so bad for my husband and kids.
I’ve had to quit work, I’m not able to drive.. today my husband took me to the hospital, so I could get my records to take to Dr. Raz, Linda was right, get the PERIOPERATIVE NURSE NOTE!! UNDER IMPLANT LOG.. I had everything except that once piece of information. MiniArc (R) Precise..with a ref and lot #, that piece of Hell is what has ruined my life.. as I was waiting on my husband to come back to get me, I googled that word.. The 1st thing that come up was where a momma had reported the same sling was used in her daughter and she had the exact same problems as myself, it was like reading something that my momma would have written.. The second thing was one FOR Sale on eBay for $299.00!! HOW IS THAT!! So sad..
Thank you again Linda.. You are a wonderful person. I’m very Thankful for you..
I hope and pray that Dr. Raz can help me.(sorry if I’ve rambled too much and misspelled words)
My answer to her comment.
When I first got my operative report from the implant surgery, I could not find the name and number of my implant. So fortunately, I knew a nurse who also had complications and I asked her. It was she who told me to get the operative nurses notes. Then I wrote a blog sharing this information after I found where it was.
So what do you know about your own implant? Have you Googled it? Spent time researching to learn more? I have because I believe knowledge is power. Here is information about Davonne’s sling type.
First when a sling type has been approved by the FDA, Manufacturers (Pharmaceutical company) is quite proud of their new ‘baby’ and then want to tout it to impress, their investors.
FDA Approval For MiniArc Precise Urethral Sling for Stress Incontinence
JULY 6TH, 2010
American Medical Systems just announced that they have received FDA clearance for their MiniArc Precise single-incision urethral sling for female stress urinary incontinence.
Female stress urinary incontinence is a condition in which any increase in intra-abdominal pressure (such as laughing, coughing, or running) leads to the involuntary loss of urine. One of the treatments for this condition is the surgical placement of a urethral sling, a device that supports the urethra in place of weakened pelvic floor muscles.
To treat SUI with the MiniArc Precise system, the physician surgically places a narrow strip of mesh material–called a sling–under the urethra to give it a point of support. Now you know why I and so many women have serious complications with their urethra and you will read more from Davonne, that she did too.) This procedure is minimally invasive with only one small incision. MiniArc Precise is built upon the success of the original MiniArc single-incision sling which since its launch in late 2007, has been implanted in more than 75,000 patients and incorporates proven mesh that has been used in more than 750,000 procedures.
“MiniArc Precise builds upon the existing MiniArc Sling. With the new design and fixed needle to sling connection, MiniArc Precise further simplifies the ease of use while maintaining the integrity of the existing MiniArc clinical evidence,” says John Nealon. (Yes, the nasty person who is now buying up the the AMS devices right now. I will post the link to the blog I wrote about this, at the end of this blog.) “Its slim needle profile minimizes the potential for tissue trauma and allows for precise placement of the sling under the urethra for support. A limited launch is underway with a full commercial launch later in 2010.”
MiniArc Precise’s design incorporates low profile self-fixating tips that provide immediate fixation of the mesh. As an outpatient procedure, the MiniArc Precise generally allows patients to return to normal activities within a few days. The single-incision approach minimizes the potential for tissue trauma, which may provide for enhanced patient recovery.
Here is the site with pictures or how it looks. https://www.medgadget.com/2010/07/fda_approval_for_miniarc_precise_urethral_sling_for_stress_incontinence.html
Here is the AMS (Endo) full press release.
MINNEAPOLIS, July 22, 2013 /PRNewswire/ — American Medical Systems® (AMS), Inc., an Endo Health Solutions Inc. (Nasdaq: ENDP) subsidiary and leading provider of devices and therapies for male and female pelvic health, today announced the U.S. launch of its MiniArc™ Pro single-incision sling system for the treatment of female stress urinary incontinence (SUI). The MiniArc Pro, the third generation of the MiniArc family, is designed with a new visual feedback system that gives the physicians the ability to objectively measure sling tension in a repeatable way to help find the most accurate placement for their patient.
“Slings are the surgical standard of care in treating women with stress urinary incontinence and a valuable treatment option for many women in the U.S. who suffer from this disruptive condition. However, continence slings I used previously did not provide an objective indicator of sling tension, which is different based on each patient,” said Nathan Guerette, MD, FACOG, FAAFP, Director, The Female Pelvic Medicine Institute of Virginia, Associate Clinical Professor, Division of Urogynecology and Pelvic Reconstructive Surgery, Medical College of Virginia. “With the advancements in the MiniArc Pro system, I’m now able to objectively measure and record the sling tension for each patient.”
To be continued.