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Mesh News Desk: October Turns and the Falls Ahead

Fall leaves

Fall leaves

Mesh Medical Device News Desk, October 2, 2016 ~ Welcome to Mesh Medical Device News Desk.  I feel as though we are entering the final phase of 2016.  It has streamed by at lightning speed, time seems to be running faster all of the time.

If you are new to the mesh mess, welcome!  Mesh News Desk (MND) has  been covering this issue for five years now.

We are not beholden to any influences here, just coverage that is in the public interest. Advertisers or sponsors are clearly labeled. I look forward to receiving any essays by you all – doctors, lawyers, mesh-injured, observers of this phenomena.

This is not medical or legal advice and you should always check with your professionals, but time and time again we hear from women who express the same issues – their law firms are not talking to them, their doctor is not responsive, or if he is, he is unable to remove the troubling mesh.   Some patients are still even told mesh doesn’t cause pain!logo

The wiser docs will ask, “Did you have pain before the mesh?  Did you have autoimmune issues, rashes, Lupus, fibromyalgia, chronic infections and UTIs?  If not, it could be the mesh. Do you think?

I just returned from the American Urogynecologic Society’s annual meeting in Denver where about 1,300 urogynecologists gathered to learn the latest their profession has to offer.  I registered with my name and yes, paid membership to do so. Members are allowed to take photos and use them as they want.

Many stories will be generated from that visit and I plan to be fair to both sides. I’m convinced there are urogynecologists who have no idea that thousands of women are suffering?  How could they?  AUGS had no information about the abyss many women find themselves living in –  the inability to function any longer and a loss of health.  Lives altered, some permanently.

AUGS members who sat in one session listened to a plaintiffs’ lawyer talk about the issues.  But there were only 20 folks there.  By the next day there was scheduled to be an expanded Mesh Debate with lawyers from both sides of the issue.  On second thought, the society decided that wasn’t such a good idea and the session was cancelled that morning. The purported reason was the slides weren’t submitted in time, that is, in time to be vetted by the society lawyers.

AUGS decides the session was not in its best interest, said an AUGS employee.  The society wanted to avoid exposure to its corporate sponsors, and there are many, said one doctor in the know.  What a shame. It was to be held in the largest room and it was a good idea, though the format might  have been a bit contentious – a mock trial was the format. A little too close for comfort.

There no doubt are doctors who would be open to the message that there are many truly injured women, not just those looking for a payday.  I look for ways to connect with those doctors because they are in the key positions to bring about change.  Operating with blinders on is not serving their patients in the long run.

Jane Akre, editor, Mesh News Desk

Jane Akre, Editor, Mesh News Desk

I look forward to any thoughts from readers on how to bring about this change.

Meanwhile, stay tuned, stay well, learn from each other. Life for many has gotten better after they followed the course that was right for them.   Please feel free to share you experience. You can write anonymously and your names are never shared.

Stay well friends,

Jane Akre, Editor

MND

 

 

 

40 Comments

  1. Betty says:

    Thanks Jane, for all you’ve done for all of us who suffer everyday with this mesh inside of us.

  2. Barbara says:

    Thank you so much for going and telling us the truth!
    The corruption is so un real!
    I again missed family outing after major nerve pelvic pain all night !
    I don’t get why they are allowing them to injure and kill more family’s yes it hurts our family’s friend when we can’t do all we could before !
    I hope so that I will be asked to speak or they play our interview !
    We deserve justice !

  3. Nameless2 says:

    I received a Caldera T-Sling S10 and had 3/4 removed I know now that I am not going to be as I was nor will anyone else in that group , some I heard almost died from sepsis I guess we are to celebrate their survival and that is about all you can do when the FDA accepts another 510k T-Sling and it’s on the Market bust they (Caldera) are insolvent and cannot pay those injured and those whose Dr.’S Malpractice Insurance could have paid the statutes have long since expired …, or have they ?

    Seems to me a Discovery in your case or mine could bring a whole new time frame for them to deal with in the Courts of the State your Mesh was given and I am intending to follow up with my Care givers as I do and until which time I am without a discovery I will remember never to allow another Dr. Or a student Physician to work on me in any capacity … I have pain I have blood I have UTI’s and I have a Marriage of twenty years still on the if status ! If he can handle it any longer … he is a Saint !

    Good Luck to all and just know what was happening we had no idea or we would have never ever allowed our lives to be so screwed up as middle age was in progress thanks for nothing and thanks for all who hung in there with us … thank you Jane … thank you so much and all the other reporting people I have forgotten because thinking is. Real problem now for me as well !

    God help us we have more and more to worry about don’t we ?

    • Diva 64 says:

      Your comment on remembering being a problem > I am having a lot of problems now with my memory. Are we discovering another symptom among the Mesh Sisters just as the autoimmune illness is one of the adverse reactions to the polypropylene.

    • Bejah Blue says:

      Dear nameless, You did not “receive” it darling, it was jammed into you so someone could make money, someone who lied to you, misrepresented themselves and their device of choice, someone who was and is evil because evil can not hide behind any excuses. They either knew or should have known and had a responsibility to do due dilligence and let us remember that hospitals are always reminding us that doctors are independent contractors, not that they are innocent either. From now on we must assume that those lofty vows made by doctors mean nothing and we must research everything ourselves and assume the position that trust is not a given in medicine or anything else. I have probably said this before but again repeat, as “Mulder” famously said, “Trust no one”. I am especially upset today, raging and in terrible pain because I ran out of pain medication and even resorted to taking a second helping of sleep medicine last night when I woke at about midnight not caring if it killed me to take more than perscribed along with other things to help me sleep to escape the pain. I can not get more medicine until after November 1st and I am not sure I even care if I can survive until then. A priest told me not too many years ago when I went to him because of all the horrific things that I experienced in the preceding decade, and I asked him if I would go to HELL if I committed suicide. He said that I would not providing I was in unbearable pain and, or was mentally ill. Now, on this day I feel very depressed, without hope, humiliated, and unbearably sad. How does one bear unbearbale sadness. How can I look at my face and see the ravages of time and feel myself as a soul oblivious to time within…where do I go from here. I can not even clean my house or work in the garden when I feel this way. Thankfully I slept until noon but I do not have enough sleep medication to last until the 1st and could not fill perscriptions in October so have very little left of anything else. I have a lot of Clonidine which slows the heart and makes me sleepy. If only I could just take it all and wake in Heaven. There is nothing left for me here….just my beloved dogs. My son is busy with his own life and I only speak to him when I call and even then he is on his way somewhere often and my brother has his own troubles and heavy work schedule. My life does not matter to anyone and I have learned that we do not thrive and can not even survive in many cases if no one needs us or cares about us. I feel like my power is waning, and the light has gone out in my eyes. But hope will not abandon me nor do I have the courage to take that final plunge into the unknown, into the infinite darkness of the greatest mystery or non-existence.

      Bejah

      • Anonymous says:

        Bejah, my nephew shot himself at the age of 22.It will be the one year anniversary tomorrow.I cannot begin to describe the hole that it left in our hearts, and how the World will never be the same without him in it.I understand your pain.I too am awoken in the middle of the night and have such severe groin pain that sometimes I can barely walk.I am one of the Caldera Desara vitims, and I am one who almost died of sepsis.I had an emergency debridement of the rectum, which causes me to have fecal incontinenece because my sphincter was cut out .My marriage is over as I knew it(we are still friends, but now live in seperate homes).My 12 years of education is for naught.I have a Masters degree, which I can never use.To top it all off, I had a small benign tumor removed from my jaw five years ago, and have permanent nerve damage, and on occasion, disfigurement in my face when it swells.No layer would take my case, even though my dentist told me that after over twenty shots of novicaine in a three hour period, anyone would be damaged.He refused to write that down so that I could sue the endodentist(who didn’t even have me sign a consent form).Most days, it feels as though thousands of bees are stinging my face.Between that and the mesh, I often find myself eying my husband’s firearm, but then I remind myself of what that would do to my family and my pets.I wake up the next day, and sometimes I feel a little less pain. Last month, I had a piece of mesh come out of my vagina, and yet my attorney “isn’t doing discovery at this time, and to keep it or throw it out”-that it didn’t matter.I have had this evil mesh since 2009, and had a “partial removal” in 2011.That is when I almost died( and I hemorrhaged when my doctor pierced my bladder with the trocars.I trusted her, and now I trust no one.Pathology didn’t even see the supposed mesh that she “took out”, and so I almost died for nothing.We are sisters on this board-bound together through our pain and our unrelenting suffering.Please know that I am here for you.I do understand the thought of going to sleep forever, but I am awaiting medical marijuana for my face, and I am praying that it will help my pain from this mesh.I will let everyone know if it does.I am allergic to ALL pain meds, and so I deal with my pain through meditation, and that is it.Hugs to you beautiful lady.Hang in there-no one is going to love your fur babies as well as you do.

        • Anonymous says:

          Please excuse the typos.I had a horrible day with facial pain today and am not into spell checking myself, but I just had to write to you.

    • Anonymous says:

      I also had a Caldera Desara product and almost died of sepsis.I had to have emergency surgery to debride my rectum and now suffer fecal incontinence.Talk about a bummer(pun intended).

  4. Patient Advocate says:

    Thank you for attending. For being where we cannot be. For be our voice when we cannot speak for ourselves.

    • Jane Akre says:

      I wish the story was better… I’m tired but not disgusted… onward! I’m producing stories this week, stay tuned!

      • Mary says:

        Jane, I am thanking you from My Mother and my family for all you are doing to help so many in this horrible unseen killer.
        My Moms Funeral was Saturday, Oct1-2016. Her last night was burning up with 104 temp for 36 hours, fighting her hardest for each breath.
        I have no words to say what she went through the past 15 years…or my sister who was her companion and caretaker…or her 16 grandchildren..brothers and sisters and My Brothers and Me.
        She thought she was going to get better, til the last week or so.
        I am in touch and will continue to let you all know if our case goes to trial. The odds will have much to do with her autopsy. I hope somehow, her examination will be beneficial to those suffering from these implants.
        Respectfully,Mary

        • Jane Akre says:

          Mary- With your permission I would love to report what the coroner found…. Please keep us up to date… I’m so sorry for your loss… at least she is at peace now.

          • Sea says:

            Can’t thank you enough for helping us no matter what we have to do to get the answers ….have thought about the above incase something happens to me also …..

        • Sunniee says:

          Mary,
          I’m so sorry. Thoughts and Prayers for you and your family, Today and the days to come.
          It’s just not right.

        • Bejah Blue says:

          Mary, Always remember that now your mom is in Paradise and nothing can hurt her any longer except perhaps your sorrow so try to turn it into action.
          Feeling your loss. As I have said many times here, after losing my beloved mommy in 2010, also due to shameful care (Did they kill her to save the insurance company, United Health Care, one of the worst, money they would have had to pay for her care?) I realized that it was and is one of the deepest cuts we can know, the loss of our mothers, especially under suspect circumstances. As they say, don’t get mad, get even! Bejah

  5. stopmeshimplants says:

    I am not surprised their mock trial was cancelled at the conference. How would it have ended? I’ll tell you. The plaintiffs would have received millions because everyone knows the hell we have gone through. Even these so called “professional urognecologists”. Thank you, Jane. So appreciate your time and effort to continue to follow the truth.

    • Bejah Blue says:

      It sounds like there are two camps within this organization, as is often the case. Those supporting the mock trial are to be commended, and those that killed the plan, well we know all too well who they are, don’t we. And so it continues….Bejah

  6. Sunniee says:

    Thank you for going. This is pretty big news.
    Can’t wait to read about the “live” surgery sessions.
    Thanks

  7. D g says:

    A mesh survivor contacted me after my surgery while I was in the intense pain , just after surgery phase . I just sent her a note thanking her as I wanted to make sure she understood just how much that first contact meant to me that morning. Reach out. You never know who could use those words of encouragement from you. This article is very appropriate for my feelings this morning! Karma , with angels all around us. If we know to listen.

  8. Victoria says:

    I had mesh put it at 21. it ruinedy whole life. it completely When I am in lots of pain and sick with infection every month often find that Im hoping deep down that I will die I’m only 31 and I used to fantasise about walking in front of a truck and ending the misery. I have a 12 year old son who wouldnt be OK with that so I have to do “self talk” and positive affirmations so I don’t get too depressed because sometimes I get so depressed I will find myself thinkinkng of differnt ways to commit suicide, ways that aren’t messy or whatever!!!

    *Isn’t that terrible*

    Thank God for sites like this and women out there like Jane????

    I am afraid to have the full removal surgery but I think I will schedule one if I can ever find a doctor who I trust enough to do it. And he will have to assure me that I will still be able to have children, as I am only 31….
    #fyouJ&J

    • Jan says:

      Victoria. I read your post. Please don’t ever think of giving up. I’ve been reading Jane’s posts and the Facebook mesh groups for over three years now. We all have suffered from the poison of mesh with different symptoms and pain levels. We have to hang in there for each other. God has given you a big reason, a son, to keep fighting. One day you will probably look back and see how mush strength you’ve had and be thankful that you pulled through this terrible time. Some of us have gone to Dr. Veronikis in St. Louis for full mesh removal. It has given me and others hope to get the poison out. Please know you’re not alone.

    • Bejah Blue says:

      God bless and watch over you Victoria. I know what it feels like to consider suicide. It is like a dark seductive protecter offering to save you from the torment of a life ravaged by Heaven knows what. Not only do your children need you but remember every time a person of light dies, especially suicide, the Universe grows a little dimmer and we might say GOD weeps. Let the Father protect you….let Him take charge. In your own way tell Him to please help you and turn your life over to Him. He will guide and protect you but have faith as you may not always understand. Remember also that we all love you and will always be here for you as if in some spiritual dimension. Call out to God and call out to us and we will “Lift you right on up” (love that expression I credit to Oprah). Take care dear one. Bejah

  9. Tammy says:

    I am still in pain and had the mesh removed any one else

  10. Diva 64 says:

    Jane, thank you just doesn’t sound like enough. I do thank you as I am sure all do, not only your time and expense of attending the conference, but bringing the information to us. The MESHNEWSDESK has been a great source of information, it has taught me, and I have tried to share information with doctors in denial. Or speaking to someone who was not aware of the MeshNewsDesk, so they can learn. It just helps educate us, and to know there are people who care, and you have found Dr that care. Blessings, prayers and a Big Thank you for all your hard work.

    • Jane Akre says:

      Thanks for doing that. I was surprised at AUGS, I don’t think they are aware of it….I look forward to hearing more from doctors and women so this can be a place to share and come together… hopeful huh?

    • Bejah Blue says:

      It is my sense and has been for some time, and I have told Jane this, that this is a divine mission, this is Jane’s gift from God, and she is our gift from the Divine. I believe it is sacred work she does and so God has blessed her and so do we. Bejah

  11. sharon ferguson says:

    Thank you Jane for being the mesh sister’s eyes and ears . Metrontic paid a sponship to have a booth? Makes me wonder about having the stimulator from them, with a company rep there, wonder if I really want one?

    • Jane Akre says:

      Hi Sharon, sponsorship in itself is probably understandable. Get your product in front of the folks most likely to use it. Makes sense. But there is a fine line discussed among medical ethicists, which I will be visiting.

  12. Barbara l M says:

    Need to talk about all those that have died from mesh! And what they and family’s went thru before they died pain infections etc……

    • Bejah Blue says:

      Absolutely! We need to have a memorial page, a wall with links to life story pages in memorial page…to remember those we have lost, a page we can visit, reflect, post notes or poems or drawings or music, a place where we can mourn or weep. I do not know how to make it happen, but I know we need it.

      Bejah

    • Silent suffering says:

      I’ve been in pain all these years and told I was crazy etc… The pain is real never needed a Dr to confirm that but after finding out removing it would kill me you ask yourself how could no one know. I’m annoyed by the fact I’m treated like its unacceptable that I want it out. I was basically given a death sentence…

      • Jane Akre says:

        You should probably seek out another opinion or two…..many doctors do not agree on these things and few can do a full removal, but it has been done, depending on your mesh and doc.

  13. Anon says:

    I just want to share a bit of sunshine with you guys. My implanting doctor just recently apologized to me in writing for the years of pain and suffering that the mesh has caused me.

    • Jane Akre says:

      Wow! Thank you for sharing that. I’d love to know who this is, if it is possible to tell me, even privately. I wonder what finally sunk in? thanks!

      • Anon says:

        Hello Jane,
        Maybe someday I will share his name with you, privately. We have a patient/friend relationship where we are open and honest with each other.
        It took him a while to verbalize his empathy in writing, because I am in litigation. All of my office visits since the mesh implantation has been totally free, 10 years. He has been wonderful to me. So….there are doctors out there that get it and that really care.

        • Bejah Blue says:

          Thanks so much for this luminous message. It gives us hope for humanity. I know in my heart that Michael Margolis is one of these doctors and I know that the two Urologists I see here, who I will not name because there is a strong old boys net here in the Palm Springs area, have both expressed these sentimnts to me. They are terribly sorry about what I have had to go through and they feel helpless when considering what they can and can not do to help me now. They would never turn me away. Bejah

  14. Linda says:

    Victoria,
    I had to respond to your suicidal thoughts and plans. It is obvious you think of ways to carry it out. I think you are so courageous for bringing it up. I felt the same way, fortunately my children were grown and could take care of themselves. Many women on this site understand the fight to continue is grueling. I found it helpful to meet with a therapist and talk about these feelings. I have to tell you the closest I came was right before my removal @UCLA. The removal did not cure it but I have not had an infection since. It relieved enough of the pain that so far, have been able to continue the battle. Every body gets different relief from removal. I do not judge your thought or whatever actions you decide on. I am 28 post reconstruction and I feel better. I have to make careful choices or end up in severe back/butt pain. Today I can tell you I am glad I opted not to make the choice to end it before removal. I pray you find a good support person and I admire you for your honesty. If we are truly honest, we know many women have selected that as an option. I am just sorry that anyone is even having to contemplate this because of MESH. It breaks my heart what all the women, husbands and families have to go through….. Take time and do not be impulsive on your very bad days. Take some time and let your body just rest and often that helped my body to continue. We need a lot of rest

    • Jane Akre says:

      So glad you found some degree of relief from your removal. Docs at AUGS didn’t realize that could happen. I informed one doc that it could.

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