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Global Mesh Awareness Day Twitter Party, Sunday, May 1

Mesh Medical Device News Desk, April 29, 2016 ~ The women behind the Facebook group, Mesh Awareness,  will be Tweeting all day and night Sunday, May 1 and will be joined by mesh awareness groups across the globe.

That would include women in Scotland, the UK and The Netherlands, all of which have very active social media group surrounding the mesh complication issue. 

The event will last all day.

Dora De Wilde of The Netherlands designed the poster. Global Mesh Awareness is growing in numbers and began loosely about two years ago.  It is growing as mesh injuries are growing.

The hash tag is #MeshAwareness. Social media abounds with mesh-injured women and many find unity in talking and offering support to each other online.  Many are relieved to find out they are not alone.

Hernia mesh is included among polypropylene mesh injuries. There are now  more than 90,000 product liability cases concerning pelvic mesh filed in federal court in West Virginia as well as thousands filed in courts around the country.  Internationally, mesh injury lawsuits have been filed in the UK, Scotland, The Netherlands, Israel, Australia, Belgium, Canada, England, Israel, Italy, the Netherlands, and Venezuela seeking damages.

Major mesh manufacturers include Johnson & Johnson/Ethicon, C.R. Bard, Boston Scientific, American Medical Systems, Cook Medical, Covidien and Neomedic. Women report chronic infections, pain, mesh erosion, mesh shrinkage, and many are disabled and unable to leave their beds.

Janis Urban

Janis Urban

Janis Urban writes about Mesh Awareness Day,  “Along with our Posts and Tweets to bring awareness to the Risks of Mesh. Let us Share Pictures, Memories both past and now. It’s not all bad… Good Things, Blessings that still remain in our Lives. I’m grateful for the love and support you all give to me and sharing your joys of family activities always lift me up! Let’s spend the day be grateful and happy! “

I have said we have the World at our Fingertips lets use it!

Urban (@janurban12) is a lead participant along with Mesh Awareness Movement (@MeshAwareness) and Tammy Jackson (@TammyJa54001341). Thousands of women are online with Facebook pages including Mesh Problems, Links on Mesh, Deb Meshme not, Scottish Mesh Survivors, Meshed-Up, among others.

Urban says if you don’t know how to tweet, go into the pages of Mesh News Desk or find a mesh-related story and hit the little Twitter bird, that will send it to Twitter.  You don’t even need an account but signing up is also very simple.

(Here’s one Pelvic Mesh 101: The Basics  https://www.meshmedicaldevicenewsdesk.com/mesh-101-basics/  (find the twitter bird at the bottom of the story);  or this one Reporters Resource on Covering Mesh Issues, (again look at bottom of story for the little blue Twitter bird, https://www.meshmedicaldevicenewsdesk.com/reporters-resource-on-covering-mesh-issues/)  

Friday Twitter Parties

So far the group has sent out about 1,500 tweets, every Friday night between 8 pm and 11 pm EST. Many of them are directed at J&J, the largest manufacturer of pelvic mesh.

J&J is monitoring tweetsThe parties began on March 11 and the focus of the Tweets for two weeks was on J&J – #JNJHurtWomen, #JNJhurtsforprofit,  @MeshAwareness, #FDA.

Jackson wrote directly to Johnson & Johnson at @JNJcares and #JNJNews.

Don’t think J&J didn’t notice, in fact, a tweet claiming to be The Johnson & Johnson Team even replied to the latest!

The reply was:

“Thanks for alerting us to these Tweets. We’ll continue to monitor the situation, and we appreciate you letting us know. Sincerely, The Johnson & Johnson Team.”

 mam poster

 

 

 

Twitter 

Twitter allows you to talk directly to anyone crossing continents and oceans. The Twitter campaign of MAM includes support messages for support groups of people injured by pelvic mesh around the world including:

scottish mesh survivors

Scottish Mesh Survivors

Sling the Mesh @MeshCampaign, #ScottishMeshSurvovirs, and groups in New Zealand, Australia. In the U.S. there’s been a growing population of  the mesh injured community taking to social media including Mesh Me Not, Mesh Problems, MAM, Mesh News Desk, Peggy Day Writes. They may have websites, or blogs but they are unified by a common thread- injury from a polypropylene implant.

The participation among mesh injured has been good, says Janis, who plans to reach out to other support groups such as @EssureProblems and @PowerMorcellator, medical devices also allowed onto the market by the FDA that are injuring women.

How do you use Twitter?

It’s easy.

For those uninitiated to Twitter, a # is a Hashtag and it opens up a general topic of interest.  Put in a # and pull up a general topic that follows the hashtag, also known as a number sign. For example #toxicmesh,  or #FDA.

The @ sign is basically used to call out user names on Twitter. @JNJcares will send a Tweet directly to the company.  Its also how you are identified @meshdevicenews,  or @janurban

Remember you are limited to 140 characters, short and sweet!

Hashtags used to spread the mesh word have been:  #Pain, #Autoimmune, #Toxic, #Untested, #Lives Matter #FDA, #Congress, #Media, #Regulations, #Doctors, #Polypropylene, #Justice, #PelvicMesh, #MeshInjury, #HerniaMesh,  #LivesRuined, #MedicalDevice, #HealthcareReform, #HSM,  (healthcare social media),  #healthhacks,  #healthfit,   #ehr  (electronic health records),  #patient safety, #medical research, and the list goes on.

Mesh Art

Social media abounds with clever posters created by the mesh injured community.  Check out Twitter and Facebook and visit the above sites.

posterpost

clinical trials

po

 say n o to mesh

39 Comments

  1. Lisa says:

    Thank you for your never ending support Jane! Its all because of you bringing us together <3

  2. Dore says:

    Thank you For your ongoing support. It’s wonderful to know that there are many people out there who are getting strength from each other.

  3. Patty says:

    I never knew that a quest for bladder could kill me. My transvaginal mesh did just that. Erosion of my vagina by the mesh gifted me with sepsis. If not for my husband and an attentive ER I coded 4 times in one night. It required 2 revisions to close the hole in the vaginal wall. Not fun as I have gravis and locals do not work.

    • Jane Akre says:

      OMG… sepsis is a real concern, plastic and soft internal organs do not mix. Sepsis is a condition where you blood has bacteria in it, usually from the colon. Whoever thought it was a good idea to put this plastic near the colon needs to have his head examined in my opinion

      • Barb says:

        It has also caused me to have sepsis as well! Thank you for sharing up until now no one ever mentioned it!

  4. Barbara says:

    Thank you Jane for all that you do xxoo
    And to all of you that bring awareness!

  5. Barbara says:

    Thank you Janis Urban for not giving up and Tammy Lisa Caz Jennifer Christina on an on such strong souls that really care! Xxxooo and so many more
    Susie Cheryl and all the rest!
    Strong Good Women!

  6. REBECCA says:

    My tvt mesh removal is this month I hope that this nightmare will end.

  7. REBECCA says:

    I pray that May 1st brings awareness to bringing a solution to our outrageous pain and suffering . I wish in the end of our trial that the lawyers not get paid more than we the victims .

  8. Shirl says:

    What about Seprafilm. I’m having the same problems

  9. Doree says:

    I had a tvt in 2007 and some of the mesh removed in 2015 but I’ve been left with permanent nerve damage. Let’s hope one day we will get justice.

  10. Doree says:

    I had a tvt in 2007 and part of the mesh removed in 2015 but I’ve been left with permanent nerve damage. Let’s hope one day we will all get justice. Thank you all and stay strong.

  11. jan says:

    Jane: last week I Spk with my attorneys office about updates on Boston scientific and mailing more medical records to them..she explained please get what I have to them for they are talking with boston regarding negotiations. .she stated could be today,tomorrow ,r 3 days from now..but they are not doing anymore trials Boston scientific wants to settle. .
    Well I phoned today about 5min ago to make sure medical records did make it.well I asked just to see. This lady advised me Boston scientific is not settling they r going forth with bellwether cases.. I asked her about not one case is on docket for them in Goodwins court.
    She advised me they will have them on docket before they go into court
    I really feel these attorneys hire people and they do not know what’s happening r they themselves do not know what’s going on in our cases..
    Please shed some light into what’s the truth

    • Jane Akre says:

      Boston is settling some cases is my memory….. see this story … Of course they will not settle until the day they do!!

      https://www.meshmedicaldevicenewsdesk.com/new-boston-scientific-offers-small-settlement-to-3000-pelvic-mesh-injured-women/

    • Still Standing says:

      I have a question. I have seen other people post that they have had to send medical records to their attorney. I never had to do this. I signed medical releases and my law firm took care of pulling all the records. I did have to list all of my physicians on the plaintiff fact sheet and I would call and tell them when I was having surgery so they could arrange for the tissue to be preserved, but I was not responsible for gathering my records. I just thought this was standard procedure, so I would be interested in hearing how other law firms handle this.

      • Jane Akre says:

        That is an interesting observation. You would think that the firm would want to make sure it got ALL of her records therefore would request themselves. Perhaps not all firms are thorough?

        • Still Standing says:

          No kidding, Jane. Especially since the records also have to be supplied to the defense. They literally had boxes and boxes of health records at my deposition…things so long back that I didn’t even remember some of them at all. Had I been responsible for supplying my own records, they would have been terribly incomplete. It would have taken hours and hours and hours to do this. I absolutely think that this is part of what the law firm signed up for. It is their responsibility. It is also the only way they have of insuring that the records are accurate. If you get your own records and see something you dont think would help your case, what would keep someone from just taking out that visit note, especially if you are in that % of women who don’t have a strong case any way. Records should come directly from the doctor or medical facility to the law firm. Way too big margin of error if the plaintiff has do do that. I’ll be interested in seeing how others respond.

          • Jane Akre says:

            For many law firms, gathering records and shuffling papers is basically what they do….. for that they get their 40% …so they need to do their job! I know many paralegals work very hard and feel dedicated to helping you all….. many lawyers too. If they want to share here, they can do so anonymously.

          • Advocate says:

            Well, there are two reasons that many of the plaintiffs are being asked to get their records. Both are rather simple and straight forward.
            First, if the records are for continued care, the client is obviously aware of treatment. If they are the initial records being gathered, the client should know if any visits are missing after review.
            The second reason is cost. Law firms gathering records must pay per page, what a client is

          • TenderLegal says:

            I also wanted to point out that a number of the clients are nurses, some of which still work for the doctors/facilities that performed their medical care. We take great care to preserve our client’s privacy and in order to minimize their workplace from finding out about the lawsuit, we offer the client the opportunity to get her own records. However, we ALWAYS offer to order them and never place that burden on our clients. In addition, to minimize costs to the client, we try to only order the necessary records to assist with their claim. Also Jane, as a member of a TVM law firm, I take umbrage to “gathering records and shuffling papers is basically what they do.” While that certainly applies to some firms, I think it downplays all of the work that firms like mine do on behalf of our TVM clients. These defendants have not been willing to just roll over and cough up money for these injured women. We have had to have numerous meetings with them, fighting both to include all of the medical procedures and problems the clients have experienced, as well as to obtain as high a settlement value as possible. We never treat our clients like just a number and that is one of the strengths of our firms.

          • Jane Akre says:

            I know that firm and know it does not apply to you all. Not meaning to cast aspersions to the hard working folks and I’d like to think most of you are… But there are some less than honorable folks which is a shame.

        • Barbara says:

          I know in my case hospital kept saying they were distroyed ! I had to go to 3 hosp to try get records, then it was the one I thought and after a year of trying
          I got a few! And sent them to my lawyer! Mostyn law said they had told them they dident have them ! It’s crazy why is hosp so worried if it is manufacturer responsable.

          • Jane Akre says:

            Did you have insurance pay for your surgery? I would think insurance would want to know what it is paying for and might request full records. Just my thought.

  12. Rebecca says:

    My surgery was your Monday morning the Dr says he got all out, thank goodness , now the healing part begins . I hope the mesh kit from the lawyer got to them In time.

    • Still Standing says:

      Rebecca, I will be thinking of you as you heal, physically and emotionally. Please give yourself all the time you need to heal.. Be well.

  13. Advocate says:

    Sorry…got trigger happy… the patient gets the records for free.

    • Still Standing says:

      Advocate…most of the doctors I have will send records to other professionals, but charge the patient per page to print them off. They had my medical records back to 40 years ago and actually asked several questions about those events. I would have never even thought to go back that far, and,as i said, I actually didn’t remember it at all.

  14. Doreen Day says:

    It’s good to see you are having some justice in America whilst here in the UK there are no law firms willing to take us on.

    • Still Standing says:

      Dont you think it is because the Canadian courts sharply limit the maximum awards that can be granted to the plaintiff and because the law applies uniformly across Canada, where in the US jury verdicts can award millions and millions of dollars in one court, and none at all in another court? Do product liability lawsuits get a jury trial in Canada, or just an appearance before a judge? Sadly, it appears to come down to the potential money pipeline. Only in the US is the a potential for such wide variations in judgements. Which system is more just? I guess it depends on which extreme a lawsuit ends up on in the US. Im sorry that you have not been able to find a lawyer. On the positive side,there is a great amount of research being done on mesh related complications, which will at some time, strengthen cases. I hooe that you can get the help you need.

  15. Barbara says:

    How would I go about finding out if insurance has all records from 1996 and another mesh surgery in 1997!
    The really tuff part of this is when you are this sick fever and pain dosent let up! No energy and on top of that we have to fight for everything ! At a time when we need energy to just hang on!
    Had all pre test waiting for new surgery date taking forever! Somtimes the thought of giving up is easier!
    Feel like doctors gave up on us!
    And so tired of fighting I have been out of pain pills for days just because I hate to ask and then get someone to drive me hour there and back if I can get doctor! Even though only got one prescription of 30 from her used only 1 to 2 most nights,when waking in bad pain I feel like I have slivers of razor wire rotating thru me! Are they waiting so long to do surgerys hoping we will be dead so they don’t need to deal with us! If I had surgery over a year ago I know it would not be as bad as now ,I am on fire with pain even outside of vagina feels like I have quils from porky pine and fire burning inside out and pain overs back thighs! Never have been addicted to pain Meds never took more then had to ! But now it makes it seem bad to ask when you really need it. Sorry I am really hurting trying to see hope ! But don’t feel it!

    • Jane Akre says:

      I’m so sorry Barbara… do you have a friendly insurance agent who might be willing to help you, especially if you explain that you are suffering from a procedure they covered!!! It was awhile ago before computer likely though……Do you have a law firm that can help you…. do they have all of your records? It is their job to do so… please advise janeakre@meshnewsdesk.com

    • Still Standing says:

      Barbara, you are NOT being properly pain managed at all. Asking for what you need does not make you a junkie. Remember that pain that is out of control takes more medication to bring it down. You need to take your pain medication scheduled throughout the day. Have you described your pain to your doctor as you described it in your post? . That was so graphic and real. Tell him/her what you said here or take in a copy. Do not settle for what you are experiencing right now. Besides, if your pelvic floor is tense and in such pain when you do have your surgery, you will have even more pain post surgery. Do you have insurance that would pay for a few weeks of pelvic floor physical therapy? My Doctor requires it now before pelvic surgery and it does make a difference (I have had 8 major mesh-related surgeries) so I do have some experience in that matter. Also,do what you can right now to ease your pain. I experienced similar pain sensations. I found that alternating heat and ice between my legs helped….wet a washcloth, put in a baggie, microwave briefly, wrap a thin towel around , then do ice. I always have a frozen water bottle, with water in it, and put it in a sock and put in the same place. I actually prefer the ice, very numbing, but in a good way. I would apply abdominal heat via heating pad along with ice/heat. For the pain that goes down the backs of your thighs, try gently rolling a rolling pin down and up. Avoid the boney hip area. Will these things magically make the pain disappear,,no, but it can take it down a notch, which can make a big difference in how you move through your day. When you are in pain, you naturally tighten your muscles as a form of bracing, protecting. Those muscles get shorter and shorter with prolonged pain, and then you have increased pain as a result of more muscle pain. Do you ever feel as if you are tilting forward? Do everything you can to help relax those muscles. Just taking deep breaths is beneficial. Not a certain way, but just a deep noisey exhale allows your pelvic muscles to relax. It also helps to get more oxygenated blood in your system, which will increase a sense of calm ( it also releases seratonin, the feel good hormone which can increase sense of well being) . My doctor told me at first to check myself 100 times a day to become aware of where I was tensing my muscles (i was tensing 24/7. ) i put garage sale stickers on my computer, cell phone, odometer, over sink, just to remind me to stop and breathe out. People in pain do very shallow breathing. I also keep lidocaine handy. Mine is an rx cream compounded, but it is now commercially available. topical application can help that slivered razor wire feeling. Maybe some of these things will help, maybe not, but desperate times call for desperate measures. I was willing to try anything and everything, and to invent some of my own to just have a little relief. But please, above all else, do not stay in such pain without medical intervention. Do you take anything for neuropathic pain or muscle relaxers? What is your sleep quality? All of these should be considered as part of your pain management strategy. Please do not hesitate to ask your physician…you deserve better.

      • Jane Akre says:

        Thank you still standing for all of your wise words…… I can’t believe the medical profession allows people to suffer so and tells them everything is okay! ITS NOT OKAY….

        • Still Standing says:

          It is not OK on so many levels. How ironic that the FDA’s lack of oversight led to so many women with pain and now the FDA’s over-reach regarding opioids will deny the same women adequte pain management. They just need to stay the hell out of mesh women’s lives. Really, they do. Women are paying the enormous price TWICE. Talk about double jeopardy.

      • Barbara says:

        My husband picked up precription for OxyContin 30 tab to take edge off now have surg date June 1 at 7:30
        She will remove two meshes orthopedic surgeon chisel medal out of pelvic bone will be releaved to get done before I end up back in hosp

        • Still Standing says:

          Barbara. im so glad you have some pain medication. Is it helping you at all?
          Can you ask for more if you need it? Please try to rest and relax your pelvic muscles as you more toward your surgery date. It will help you post surgery a great deal. Dont try to get things done ( i used to work myself t the breaking point getting ready for another surgery) My doctor convinced me that was not in my best interest. So, Barbara, you will be in my prayers, prayers for wisdom for your surgeons, and emotional and physical healing for you as you navgate your recouperation. Best wishes.

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