Jane Akre & Periscope Group

Why I stand alone. I am not going to go back over my history as a mesh injured woman, because it is all here on this blog and you can use the categories list on the right-hand side, to learn more if you wish to.

As you can see by the date of my last post, it is rare for me to write a blog anymore, because I now post on my Mesh Angels Facebook page and save my free time for my family. However, sometimes I know I should write one, if only to share something I know, that can affect other women who are vulnerable.

We are all vulnerable after we struggle with injuries due to medical implants, devices and drugs. At first, we are hit with disbelief that something like this could ever happen to us, when we are supposed to be protected by the FDA. After it finally sinks in, we then search for answers, which usually means we find others just like us. That is why I first began this blog, late in the year of 2010, a few months after I had the implant surgery.

I had never had anything like this happen to me and I was totally unaware of all the pitfalls, after I signed up with a lawsuit against Boston Scientific. Honestly there is no way to protect yourself, except to be aware and learn to view everyone as suspect and listen to your gut instinct.

The reason we become vulnerable is because we want to change what happened to us, so that no one else winds up like we did. So, we often don’t believe what is right in front of our eyes, when someone approaches us, who is going to use our bad situation, for financial gain.

Fast forward to now. A few days ago, I was asked if I would speak to a woman I have spoken to in the past. I will not name names, because I honestly feel, she has no clue why she is being used and perhaps she would rather not know. However, I cannot live with my conscience if I do not let ALL women know and they can then decide who they want to donate their hard-earned money to, or not.

When we spoke, she asked me to share a link on my Mesh Angels page about the fact that Mesh Victims United, is now a 501c-3 non-profit. It I hard for me to say no, because I know she is a good woman, so I thought about it and did my research. I checked out the board members of Mesh Victims United first. I will give you that link at the end of this post.

I did not see who all 13 members are, of the board, but on the board member page, the 8th person is Jane Akre of Medical Mesh Device News Desk. I was not shocked at all, because I knew she had wanted to get everyone together to begin a worldwide group, some time ago and I refused, based on my prior history with Akre. My thoughts were “Never again would I get involved with this woman, or anything she is tied to”.

When I looked to the right side of this post about board members, I saw something that caught my eye and wanted to know who they were. So, I googled them, until I recognized the logo, and then I could learn more about them. This is because there are other sites with the same Periscope name and there is even an App.

Since then, I have been told that Periscope Group paid for the 501c-3 non-profit status with a donation.  This of course is hearsay on my part.  Before we accept a donation, we should research ANY company, very carefully, so as not to make a serious mistake.  I don’t think this was done, but by taking money, from any company, law firm or corporation, it puts us in a very difficult position, and we have to decide if we accept the terms and the fact we are beholding.    

In other words you are part of promoting whatever the company does, whether you want to believe this or not.

Once I was sure who these people are, then I went to their Facebook page and it was even more clear what they are doing.

Their Facebook page states what they, and who they are is basically a law firm collection service for injured people. Once they have you signed on, they will turn your case over to any lawyers who are out for a percentage of what you get and could care less about your injuries.  In turn they all collect a percentage of your lawsuit payout, when the time comes for you to receive your settlement.

This means the Periscope group are going to take money from your case, without doing anything and the lawyer they turn it over to, will probably expect you to sign whatever you are offered, or you won’t get one penny. Simply put, you won’t have any negotiating power at all. That is how they can make millions without doing any work, while you get pennies.

This is their statement on Facebook, which leaves no doubt that they are a clearing house to turn your case over to any lawyer who will take it.

“Have you or a loved one been injured by a faulty drug or medical device? We can help. Periscope Group has been connecting victims to support for 20+ years.

Periscope Group connects consumers who have been injured by a drug or medical device with qualified, vetted attorneys who can help them recover compensation for their injuries.”

Why is signing up with a clearing house this this one a bad thing?

Because you have no idea how experienced the lawyer will be or even if they are tort lawyers who actually do this kind of work for a living.  You may also find it very difficult to communicate with a lawyer who does not have a vested interest in your case, except as a percentage pay out.  This is the new world of ambulance chasing lawyers.

Why is finding an experienced tort lawyer so important? Because the law firm needs a lot of experience and have good negotiating lawyers in the firm who have dealt with the manufacturer of your implant, drug or device in the past. Believe me I was very fortunate, because my lawyers did this.

A firm who does not have negotiating lawyers will have to hire an outside negotiator if your case is serious.  They probably won’t tell you this and if you insist on a better offer and they do hire one, the money will come out of YOUR settlement.  Believe me, they don’t come cheap.

I have learned after the fact, that not having the right lawyer, will mean that once they give you an offer, all they want is for you to sign on the dotted line, regardless of your injuries, then they can pocket their money and they won’t do you justice for you, AT ALL.

Believe me I learned a lot from women, who were drawn in by the TV adverts for mesh implants in 2011 and 2012 and they are not happy, because this happened to them.

When I found the correct site for the Periscope Group, it was perfectly clear I had not made a mistake as to who they are. I will give you that link later, so that you can scroll down and see for yourself. They are after anyone who has been injured, either by an implant, device or drug and will use anyone to get to them. Have no doubt in your mind, they already have lawyers at the ready, who are part of this type of quick money scheme.

The reason why I am posting this, is because I got caught out by Jane Akre, all because of my blog.  She wanted my story for her own site Mesh Medical News desk and that story was valuable, because it brought more injured women to the table.  She then turned them over to law firms she was already hooked up with.  It took a lot of hassling by me, to get her to take that article down, once I realized what she was doing.  I wanted it down, because I knew hat not being able to choose your own lawyer, could be disastrous for a decent settlement.  I wanted no part of hurting women who were already suffering so much.

Before I give you that link, I want to share with you some of my history with Jane Akre, in a blog I wrote in September 2016, I titled ‘Story Tellers’. You can see for yourself if you choose to, that I was once taken in by Akre, but I have learned my lesson well. I will never blindly trust again, let alone have anything to do with this woman.

When I found the correct site for the Periscope Group, it was perfectly clear I had not made a mistake as to who they are. I will give you that link later, so that you can scroll down and see for yourself. They are after anyone who has been injured, either by an implant, device or drug and will use anyone to get to them, including YOU if you give them your story. Have no doubt in your mind, they already have lawyers at the ready, who are part of this type of get rich quick scheme.

To see who the Periscope Group is, you can scroll down and see all the devices, implants and drugs they plan on collecting millions from. It takes a while for a pay out, so they set up an office Facebook page and website, and then begin ways how to find more victims, without paying anyone. for their story That is why they will pay for the nonprofit paperwork.

By doing this, they are no different than Akre’s Mesh Medical News Desk, or Drugwatch, because they will use anyone who is gullible. If you still choose to give some of your settlement money by buying their book, or your hard-earned money to these people, then at least my conscience is clear, because I wrote this blog.

https://meshvictimsunited.org/board-members/  This link shows board members.

This Periscope group is pushing videos and a book called Crystal Mesh, which I am sure a lot of women may have already seen someone pushing for book sales. However, who is collecting the money and what is it being used for? Two questions that need answering with the truth, not some lackluster explanation. I have not see this book, but of course women do inform me about things that upset them.

This is one thing that had them very upset.

“Jane Akre is thanked in the acknowledgments”

I noted there are 4 women who post on the Periscope Facebook page. At first, I had no idea who they are, but I did look at their pages first, but nothing to tell about who they are. Then I began digging deeper for information.

Banmiller is the head of Wingtip Communications, Inc., which is also the book’s copyright holder. Her intro states “For 25 years, my company has given consumers help connecting to credible legal access in an overcrowded industry that is hard to navigate.”

Now, if you are in doubt as to who and what Wingtip is. Here you are and this is what they advertise to law firms.

Based in the San Francisco Bay Area, with law firm and individual attorney clients nationwide

Since 1995, Wingtip has developed and refined an arsenal of marketing tools designed specifically to help law firms and individual attorneys across the country meet and retain clients. We literally cover the entire spectrum, from television and mass media to the internet and social channels. We operate an in-house, consumer advocacy call center and maintain a vast network of community outreach programs. We custom tailor campaigns based on your specific needs, timeframe and budget with unparalleled results.

We’re an end-to-end marketing firm focused exclusively on legal.

There is no one-size-fits-all solution when looking at opportunities to increase your client list. There are thousands of agencies specializing in web marketing, agencies specializing in television and media production, companies operating call centers and more. The problem is each are positioned to sell you their service as the key to lots of great leads.

Unfortunately, that’s simply not how the legal space works. Unlike most lead generation companies, Wingtip manages the end-to-end process, using the entire marketing spectrum. This means we don’t need to sell you our particular “service du jour”. We use the platform(s) that will work for your case, your clients and your budget and provide you with gift-wrapped, ultra high quality clients.

Over the years, we’ve become a trusted partner, not just another vendor. Rest assured, that’s the commitment you’ll receive from us as well.
Wingtip has been efficiently and cost-effectively locating legal clients since 1995

Mass Torts, Class Actions, Drug & Product Recalls, Off-Label Use & More

Since 1995, Wingtip has been in the business of mining diamond leads through engaging, cost effective marketing campaigns exclusively within the legal vertical.

We’re an end-to-end marketing partner for both large and small firms, as well as individual attorneys looking for an edge. We cover everything from television & web marketing to client intake, community outreach and more.

So, after reviewing all of this, I believe Periscope and Wingtip are one and the same in what they do and MAY be connected in some way.  Frankly, you would do well to avoid anything to do with any of them. But of course, that is up to you.

Here is the link for you to see for yourself
https://www.wingtip-online.com/about.php

There are three other women who comment on the Periscope Facebook page, but as yet I have not delved into who they are.  This is their names.

Betty Moore, Mary Worden Underwood, Tracey Smith  

When going to the Amazon advert to sell the book, I found this information.

Crystal Mesh book information.

About the authors
Alicia Mundy is an award-winning author, reporter, and columnist in Washington, D.C. She has covered health care and the pharmaceutical- and medical-device industry for twenty years. She focused on Congress and the lobbying of powerful corporations and interest groups representing health care companies, such as vaginal mesh makers. Her first book, Dispensing with the Truth, revealed company secrets about the fen-phen diet drug scandal and was a semifinalist for the Robert F. Kennedy Memorial Book Award. She was a reporter in the DC bureau of the Wall Street Journal and later was chief investigator for Democrats on the Senate Budget Committee, looking at the high costs of medicine.

Banmiller’s name came up once again

Jennifer Banmiller has been involved in the consumer marketing and media business for thirty years. She is the founder of Wingtip Communications, Inc., as well as legal consumer advocacy sites such as Periscope Group. The author of “Salesmanship 101” for attorneys, she is a fervent advocate for consumers in the healthcare field.

So you will be spending $19.95 for this book, without knowing who exactly, is the money going to. So think before you act and be cautious.

If you wish to let other people know about any of these people, but are afraid to use your name, leave a comment using a fictitious name, so that you are protected.

If you have already contacted this group and signed up with them, please understand that until you receive a package of paperwork to fill in from a tort lawyer and it has been filed, you do not as yet have a case.

This means you can search for your own lawyer, without getting caught up by these people.  To find out if your case has been filed, ask for a dated stamped coping of the filed paperwork to verify it has been filed.  One it is filed, there is nothing you can do.

I will never be part of anything, anymore, and will continue to stand alone. At least then, I am not hurting other women who believe it is safe to give money, because they don’t have the truth.  

Here is more for you to read.

First, I want to share with you some of my history with Jane Akre, in a blog I wrote in September 2016, I titled ‘Story Tellers’. You can see for yourself if you choose to, that I was once taken in by Akre, but I have learned my lesson well. I will never blindly trust again, let alone have anything to do with this woman.

This is the link for that blog. http://www.meshangels.com/story-tellers/

There are plenty of blogs here that I wrote about how Akre collected money from injured women over a period of years and I always gave evidence. So, I am not surprise by anything she does anymore. You can use the search engine at the top right-hand side of this blog, to find them all.

The reason I am giving you Jane Akre’s name is not only because of my history of her taking advantage of me, because of my connection to other injured women,

My daughter had a blog for a long time, researching all that was going on and the lies. It is called Stop the Mesh Madness. It is now at the top of my blog and here is the link, if you choose to learn about all the players in the game of ‘medical injured, screw the victims’. 

http://www.meshangels.com/waronmesh/?s=jane+akre 

My daughter has not worked on this blog for some time, due to her working to help me and my future, so the links may not work, unless you copy and past them.

My case has been settled for some time and I am not at liberty to share any details.  However, I spent 3 years on and off, researching and learning all I could about the tort law process.  I have written several blogs about law suits, pharmaceutical companies and things you can do, to put your case together, for a better outcome.  All you have to do is search.

I am not, and have never been involved with any lawyer, for gain and I never will be.  Another reason why I stand alone.

Here is a footnote that everyone whose name was on the Mesh Victims United list should read.

 My name is Jemima Williams – I am founder of Welsh Mesh Survivor Support Group in the UK. I am also one of the co-founders of Global Mesh Alliance and Global Mesh Memorial Page. I also have an on-line email group of Mesh-injured people who stay away from Social Media.

I had founded the group in 2013 -We’ve quite a large group, for a small country like Wales, but I had only just started sharing the link from that group, publicly, since working alongside WHIG – Women’s Health Implementation Group in Wales, UK, which was set up as a direct result of the work of our Welsh Mesh Survivors Support Group in order to raise awareness and lead our Welsh Government to realise that we actually had a problem with Surgical Mesh, in Wales, and the rest of the UK, and also to make them aware that this was a GLOBAL issue! –
We urged Government to educate themselves to these issues, and investigate, so that they could begin to accept that this was a world-wide Medical Health disaster. My husband (a GP) and I, were also involved with UK IMMDS Review, giving evidence at the Oral Hearings in Westminster, London.

Lady Baroness Cumberlege is Chair of the Review, she called a pause on the use of Pelvic Mesh whilst investigating three interventions in the UK – Surgical Mesh Devices, Sodium Valproate, and Primodos. NICE had asked for the links to Welsh Mesh Survivors, alongside other UK Mesh Support Groups, in order to publish their up-dated guidelines into the use of Pelvic Mesh.

When I read your blog about Jane Akre and Periscope and the website ‘Mesh Victims United’ I noticed that there was a section called ‘Resources’ I clicked onto that page and was shocked to the core; Many of the multi-national Support Group Sites and pages were there, not only that – the NAMES of all of the Founders and Admins of the Groups had been publicly published and also membership numbers, the largest Group of 8,000, in the UK, being highlighted! There was even a telephone number printed on the page. I wondered did they know?

I was thanking God that I hadn’t handed the links out on Welsh Mesh Group before … but I was soon to see that my other Groups were involved.

I have contact with Mesh Survivors from all over the world, so I spoke to quite a few of the Group Admins and we discovered that no-one amongst us, the people I had spoken to, had given our permission for the names of our Groups and Admins to be added to the MVU Resources page! We were also astounded that this websites main contributor was Periscope. Even some their own Group Members did not know this (I was one!)

We were really upset because we all know that many of the Mesh-injured are in litigation with Mesh Manufacturers and Surgeons. We felt that this could have jeopardised their legal cases. We also felt we were being set up as a platform to lead unknown Lawyers to our door – Periscope is advertised on the MVU website as one of it’s main contributors.
Global Mesh Survivors United in demanding that our sensitive information, our groups and Admin names be removed, obliterated from the Resources Page.

We were met with unbelievably self-righteous comments and even though the MVU site says “Open all hours for donations” We soon realised that they were NOT open or available to hear our complaints!
Any comments that we left on their website were deleted, and even comments made to Board Members personal pages. We then had a message from one of the Board Members to say that the Board Members were on Retreat and that I that was spoiling their last day! We knew that they were at Panama Beach AND had access to WiFi, as they were deleting comments, or sending patronising messages – “Dear So-and So, Perhaps you didn’t understand my message …”

Some Board Members lied and they repeatedly asked WHY we wanted our sensitive data removed!! …

Do we really have to spell it out? We did not give permission. We are insulted by the blasé way in which we were being used, AND by the fact that, due to a lack of moral respect and ethics they would not grant us the RIGHT, as set out by data protection ( updated 2018 in the UK) in most countries, to have our information either redacted, or removed.
Those of us who were very upset at this disappointing betrayal of trust, are now happy to say that after a three day repeated demand for our Groups to be removed from the Mesh United Victims Group and their Website, many of them were FINALLY removed.

There are still some people and Groups to contact to make aware, and ask were they fully informed and consented (where have we heard THAT phrase before?!!) We did not want a ‘Witch-Hunt’, our main objective was to have all of our sensitive information removed from public scrutiny – we do not want to be seen as VICTIMS OR AS A RESOURCE – A commodity of Cash Cows for Board Members to possibly milk!
 

 

 

 

19 Comments

  1. Ninette

    Fantastic and very informative content. I am glad this was shared on an Australian Mesh injured Facebook page.
    Thank you

    Reply
    1. Linda (Post author)

      Ninete, thank you for reading this and taking it so seriously. This is how we help each other.

      Reply
  2. Jemima Williams

    Linda, I cannot thank you enough for writing this and exposing everything.

    I wrote a private message to Katrina Spradley, demanding that our Global Memorial Page and Global Mesh Alliance be removed from the Mesh Victims United Site – I also went to the Mesh Victims United Site to leave a comment, but found I was blocked, so I will leave my message, here:

    I AM ABSOLUTELY DISGUSTED THAT THEY SHOULD USE EVER GLOBAL SUPPORT GROUP ON THEIR SITE, NAMING GROUP ADMINS OF CLOSED GROUPS WHICH IS A SERIOUS BREACH OF FACEBOOK RULES.
    I AM APPALLED AT THE LACK OF MORAL ETHICS BEHIND USING ALL OF OUR MEMBERS AS “FODDER” FOR AMBULANCE CHASERS

    Reply
    1. Linda (Post author)

      Sadly Jemima, blocking people when they write the truth, is how these people handle it. Thank you for leaving your comment and I hope others will read it.

      Reply
  3. Ellen

    Thank you for sharing all this good info it is so important for people to know the truth.Thanks for all you Do

    Reply
    1. Linda (Post author)

      Thank you Ellen. This is not easy to do, but I don’t know anyone else who will do it.

      Reply
  4. Karen Neil

    Thank you Linda,

    I was absolutely disgusted at this site (Mesh Victims United) and to target already vulnerable individuals is just,vile.

    We need to just keep posting to our pages and support group pages that we were misled allowing our pages to used.

    All the years of being Admin on Scottish Mesh survivors ( I don’t admin anymore ) I never thought certain people could continue to abuse vulnerable unwell people and to use them for their own gains, it just makes me so angry.
    It feels like we are opening ourselves to be harmed in a different way,
    but harmed nonetheless.
    I hope we can get this site closed down or at least restricted.

    Karen

    Reply
  5. Tonya

    Thank you for the info. I have wondered about the sudden push for the new group Mesh Victims United and the book. I got called out by a board member already for not agreeing with her participation in the AUGS convention recently. It definitely sent red flags my way. I believe knowledge is power and hidden agendas need to be disclosed. Let me know if I can help you in any way.

    Reply
    1. Linda (Post author)

      Tonya, you just helped by reading this post and by sharing your feelings. I have written about AUGS in the past and frankly they do not have open minds. The reason is simple. There is no more training to fix women without using mesh, so therefore this is why these kits will never be removed from the market. Doctors who love them love how they can get women in and out of surgery quickly. Hospitals and insurance companies love them, because it is day surgery and very little time involved to get a woman in and out of hospital. But any injury is at every woman’s expense and none of us are dispensable. So why waste fund to go to see them and try to convince them? My part is always about awareness of injuries due to mesh and I can do that from here, without asking anyone else to fund what I do.

      Reply
  6. Bella

    Once again thank you as always for your informative words. I was able to get out of Akre’s hold because of women just like you, although I was never a huge a fan and once she started advertising certain doctors on her website, well that was enough for me. I hope others will listen cause she will say she is there for the injured, she wants to help to expose, to report but after knowing her and about her and seeing just what she does and will do that is the least of what she is about. She does not want to help those injured with mesh, she only wants to help herself by any means possible even if that means taking advantage of those who are already vulnerable.

    Reply
  7. Jim

    Thanks for the info.

    Reply
  8. Evelyn Airey

    Linda. Thank you so much for this. 💕

    Reply
    1. Linda (Post author)

      Thank you for reading this.

      Reply
  9. Cat Lee

    Thank you Linda for this informative and timely blog post.

    One of the board members on Mesh Victims United is now on a patient advisory board for AUGS. She presented at the most recent AUGS conference as a patient advocate, and her presentation included a slide with the names of all global mesh groups. With or without permission, I’m not sure.

    During the conference many pro-mesh consultants we’re posting about their presentations on Twitter and the mesh Twitter advocates (including some consultants who speak out about mesh complications) were hot on their heels asking legitimate questions and challenging their claims about mesh safety. Some excellent points were raised during this exchange.

    However I noted that this particular board member from Mesh Victims United proceeded to criticise those mesh Tweeters calling for us to stop being adversarial towards these pro-mesh consultants. She called us emotional and angry women who were not helping the cause. That in itself raised concerns about her agenda. Has she allowed herself to be unwittingly compromised by these organisations?

    Perhaps her self-interest as a ‘voice for patients’ allowed her to think she now has the right to tell other mesh injured patients how we should conduct ourselves when speaking out about our lived experience of living with mesh complications? Whether she likes it or not, we are going nowhere. We can see she has been compromised even if she can’t. This was the first red flag about this woman and her group Mesh Victims United.

    The fallout over the last few days about how this group has violated data protection laws in respect to naming global mesh groups and the administrators of these groups is warranted and justifiable. However the way the board members on Mesh Victims United have responded to requests to remove this data from their public website and associated social media platforms has been profoundly unprofessional to say the least.

    Reply
    1. Linda (Post author)

      Cat Lee It makes me so sad that any woman who has gone through even half as much as I have, could turn the tables and join up with those who continue to dismiss what is happening to women. The only thing I can think of for her to do this, is because she likes the limelight. All you can do is feel sorry for her and keep getting the word out what a mess, women are because of bladder slings and pelvic implants.

      Reply
  10. Melynda F.

    As you probably know, Jane A. and I have our own terrible history and I feel the exact same way about her as you but for different reasons. She is . . . well, she is what she is and what she told me she was in 2013, which was NOT an advocate for mesh injured women, but just a reporter looking for her next big story.

    I did a great deal of research about the authors of the book before reading and recommending it to anyone and so I didn’t feel blindsided by who they were and what their agenda might be. Not might be – clearly *is.* In spite of this, there is a A LOT of good information, all pulled together into one place and the authors DO NOT let anyone off the hook. Not the mesh companies, the doctors who colluded with them (they name names!), the doctors who continue to put it into women, the attorneys who have screwed us over, the legal system that has failed us. None of them. I think the biggest flaw is that they relied on and thanked Jane A., which I found extremely distasteful based on my past interaction with her.

    What I had NOT realized the authors’ close ties to this new 501c3 org, an org which quickly fell out of favor with me when one of their board members came back from the AUGS conference and told us all to play nice with AUGS. She insinuated that WE – the mesh injured women who have been left with permanent “life altering complications” (JNJ’s words, not mine) – were the problem, that WE were the root cause of all the trouble. Not the mesh-funded organization who keeps peddling mesh and lies, encouraging its members to keep their heads in the sand. It was rather presumptuous of her to feel like she could speak for an entire WORLD of women who are mesh injured and then come back from that and lecture us like little children. That was badly done, badly done indeed.

    Reply
    1. Linda (Post author)

      Melynda, if you read today’s blog, I clarified things and the whole reason I wrote the first blog. I really wish every woman would write their own story and get it out there, because there are SO many seriously injured women. I have posted many in the past, on this blog, many without the authors names, which was their choice. But as always it was their own words, not mine.
      Thank you for shedding light, why so many women were already upset with MVU. I truly had no clue.

      Reply
  11. RR from Oklahoma

    Thanks Again Linda💙

    For using your valuable time to research what few would have the strength or tenacity to.

    God has gifted you with the ability to do so without falling apart. At least you don’t show it if you do. All of us who have been called “emotional” females by Dr.s etc.? Understand how often that sadly happens.

    As Linda knows I went well over a decade before I found a Dr. She recommended to help me get as much mesh mess out of me as possible including hardware screwed into my pelvic bone.

    The Ucla Dr. who did? Told me soon after he examined me the 1st time. That I….

    Had been through..

    TOO MANY THINGS..
    TOO MANY YRS..
    TOO YOUNG AN AGE…
    FOR NO REASON!…

    Then he said ALL my problems were from Mesh.
    +He must remove all he could.
    He knew I would never be 100% again…
    But He promised he would help me as much as possible to get better.

    I still remember vividly 12yr of tears rolling down my cheeks. FINALLY A PROF. SAID WHAT I KNEW WAS TRUE-DAY 1. IT WAS ALL FROM THE MESH! I WAS NOT AN “Emotional” or “Crazy” female as I’d been called before! When you hear things like that for almost 12yrs? You almost begin to believe it.

    My husband & I hung onto every word Linda said & a few others who’d been to UCLA who were kind enough to talk to my husband & I both.

    We then KNEW we had to do whatever it took to get me to UCLA. It was 99%Determination +hard work & Prayers. But my life was literally saved.

    Fast Forward to today 18Yrs since the UCLA surgeries?

    I now have had 22surgeries in the last 18yrs (most for mesh mess) since Mesh was put in me 2001 w/o my knowledge by a 2nd Dr.

    After my 1st Dr. Did a surgery I KNEW of.
    (My 1st Dr.-My Oby Gyn) told me to see a certain Urologist. (Responsible for putting the mesh bladder/sling from HELL in me.)

    So I trusted her & did. (Although a small voice told me the minute I met him? “CREEP ALERT!”) SO I told him again I did NOT leak. & He told me he would just “stand by” during surgery in case he was needed.

    He did ALL but that! 😱 I woke w/immediate non stop pelvic spasms like early-late labor & leaked. WORST WHEN I SIT. ALL I DID NOT DO DAY BEFORE.

    In 2001-I was 41 & taught many yrs until that 1day ended my Career & Changed my entire life & families forever.

    I’ve wrote in the past but it’s been quite a while.
    My husband & I both consider Linda-1 of my Best (& few) friends. She’s checked on me when I was in a dark hole of despair not caring if I EVER got out.

    She’s commented on my case many times before because I’ve had effects from mesh SO many yrs-18yrs now. She had her 1st Ucla Surgery 2weeks before I had mine.

    I officially have Pudendal Neuralgia or Pudendal Nerve Entrapment. I think I’ve tried almost everything out there *except Pudendal Nerve Decompression Surgery. (Which is very scary to think of but I’m desperate enough to check out when & if we get funds again to check 1 of few Dr.s who do that.)

    I HAVE A LONG LIST OF ALL PROCEDURES & SURGERIES DONE+ A BAG OF PILL VIALS OF ALL MEDS THAT DID NOTHING-I TAKE WITH ME TO ANY NEW DR. APPT.

    But last yr I had 4surgeries in 12mo. 2-I had planned on. Total Knee replacements. But before May? The batteries in my Interstem died. (An interstem was put in me 2013 at Ucla after Dr. removed as much mesh mess as possible but my spasms & pain never ended.) He did 1day of many tests that show I have MANY TINY PCS OF MESH IN ME-TOO TINY TO EVER REMOVE. So then an Interstem was put in during a 2surgery procedure.

    So I had a Tulsa Urologist put new batteries in. I’d talked to an Ucla Dr. Who told me I should do that & also that any Urologist should be able to do that surgery. I was VERY hesistant to let ANY PLACE BUT UCLA-even replace my Interstem Batteries! But knew we had many medical bills once again.

    So a Tulsa Urologist replaced my batteries last May 2. But my incision never healed despite I saw him 5X after. So when I saw him again May 31st? I was running a fever & the incision was worse. He then did emergency surgery to remove my Entire Interstem & Batteries. I then had 3incisions to heal. (I WON’T BE GETTING ANOTHER) Ironically? Medtronic who made my Interstem? Took over Covidien who made my Mesh & who I took to Dist. Ct. with SO many others. Before I could get my settlement? (2nd one offered to me.) I HAD to sign papers saying I would never sue Covidien OR medtronic in the future for any reason! My Luck the manufacturer of the Interstem put in to help me? Was the same co. Who bought out co. Who made my Mesh So long ago. UGh!🧐 SO even if something was mechanically wrong trying to replace batteries? I had NO recourse if I wanted to take Medtronic to Ct. For THAT reason.
    THAT HAPPENED MANY YRS AFTER I GOT THE MESH BLADDER/SLING!

    I went to a wound clinic all summer through 1st week of October! I had vacuum therapy a few weeks until I couldn’t tolerate the extra pain. Home Health came weekly & my husband put new wet bandages on me daily. I was just released from all the Dr.s for my Incision care 2nd week of Oct.

    I’d had an Interstem since my 2nd Ucla Surgery in 2013. I’ve realized the last 5-6mo. How much the Interstem DID help me. It was hard for me to realize how much? Since I’d had it since soon after Mesh Removal & Back at a time I was given adequate pain meds.

    But Okla. Passed a new Opiod Law last Nov. 1. that drastically changes limits on amount of Opiods allowed to be prescribed. EVEN for long time chronic pain patients-the way Dr.s are understanding it. They are literally scared to death of the DEA. Who when you actually read the law? Most think they never meant it to be applied like it has been to long time chronic pain patients. My only choice to be able to get the old amount I once did receive? Is if I were to move into a nursing home. No I’m not there yet. PTL.
    I just turned 61 last Spring.

    At the time the Nov. 1 Law was passed? (By a panel of many people-NONE who were Pain Managements Dr.s or Surgeons or Dr.s of any other kind!) my Reg. Dr. Who is also set up as a pain management Dr.-Cut me immediately to less than 1/2 strength meds I’d been on since UCLA Dr. Prescribed them in 2012. NO TAPERING OFF ETC. My Ucla Dr. told me I’d likely need them the rest of my life as bad & as constant as my pain & spasms are.

    So my life has drastically changed since Nov.1. & SO MUCH MORE-when I no longer had an Interstem. I could write a whole other article on The Opiod Scare causing WAY TOO many Chronic Pain Patients to suffer so much more.

    So much that Too many have even committed suicide! +Many who were able to work are now homebound like me. +Statistics do NOT show that 90%+of “overdoses” also include street drugs like Fentanyl and/or Alcohol.

    Because of addicts who gulp by handful? Snort, Crush? Or Inject Pain Pills? People like me are PUNISHED & treated like criminals. I’ve always taken them exactly as told+ passed all urine tests etc. for many yrs. They only took the edge of my pain off & made me feel the outer feelings of Normal.

    NEVER EVER ANY KIND OF HIGH. When you have chronic pain? You take them exactly as told & don’t even THINK of Selling them etc! They were a key that enabled me to enjoy a bit of my former life occasionally.

    YES! To be able to sit in a cafe with my husband? Or see a grandchilds game? Was Priceless. The world has NO idea what to do with someone who cannot SIT. Even riding in a car does me in. Now so much? I only do it to go to Dr.s appts.

    A few yrs ago I missed our youngest sons wedding out of town. I knew there was NO way I could take the ride sitting out of town over 1hr each way. +the ceremony & ride back. It broke my 💙 but our son understood. Things like that? No $ can buy!

    Right before the Opiod Law was passed last Nov? Okla passed a medical Marijuana Bill. Many think one has to do with another. Yes I got a Green 🌿License. But NO-Nothing of any kind of it helped my Pain.

    I COULD NOT get across to the people who owned dispensaries I wanted ONLY to get rid of some PAIN-so I could get UP & DO something.
    I had no desire to be glued to a couch or bed!

    You pay your Dr. Big $ to fill out a few lines on a pg to get a license. Then NO help or guidance by Dr.s on what kind to try or how much etc! There IS Something wrong with that system.

    All forms & types I tried? At $$$cost? Only made me Dizzy, Sleepy & Hungry! All 3-I did NOT want. +The smell of it nauseates me. My husband & I both have NOT smoked for well over 20yrs now.

    So-Our Lungs & Noses say YUCK to “smoke” anything! I know & have heard of people it does help. I am VERY HAPPY it does for them. But not me & I don’t have $$$ to keep trying.

    Thanks again Linda & My Prayers to You & All Fellow Victims of Mesh.

    P.S. I am getting Botox Shots in my Bladder
    Nov. 19. One of the Few Things I haven’t tried. + My UCLA Dr. Told me to try after replacing my Interstem Batteries.

    I’ve had trigger point shots & Pudendal Nerve Shots that deadened my Pudendal Nerve about 1hr each time. But not Botox shots. So If anyone has done that & wants to share? Please respond here. I don’t do FB.

    Blessings, 🐦RR from Oklahoma!

    Reply
    1. Linda (Post author)

      Robin you and I have been friends for a long time, because we have both suffered far too much.
      Kerry Witmitz, I will give you link with what Robin’s husband wrote abut what it was like for him to watch his wife, suffer for years, without any answers. I am so thankful she just updated it here with her comment because we stay in touch and I know how terrible her life is, all because of a bloody mesh implant. Robin, thank you so much.
      http://www.meshangels.com/til-mesh-us-do-part/

      Reply

Leave a Comment

Your email address will not be published. Required fields are marked *