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Mesh Autoimmune Registry Seeks Comments, Will Close in Oct.

UCLA Autoimmune Registry

Mesh Medical Device News Desk, September 25, 2017 ~ The autoimmune registry, which is collecting comments from mesh-injured and non-mesh injured, is about to close its questionnaire.

UCLA researcher, Dr. A. Lenore Ackerman asks all to add their voice, whether you have autoimmune reactions to mesh or not since they need a control group.

She thanks all who participated!

You made this possible!

In August of last year, Mesh Medical Device News Desk asked mesh- implanted persons to respond to data being gathered by researchers at UCLA concerning autoimmune reactions to mesh, whether hernia or pelvic.

Autoimmune responses to a mesh implant are anecdotal at this time and include, rashes, fibromyalgia, overall flu-like symptoms, loss of teeth, brain fog, Lupus, among other impacts. These symptoms are reported after a mesh implant by so many it became tough to ignore and UCLA researcher Ackerman knew that.  Collecting data is the only way to study an issue and is a start.

Hope Pagano

See the Hope Pagano story here. 

Researcher, Dr. Lenore Ackerman tells MND she will close the survey and finalize the results at the end of October of this year.  Until then, she is asking us to recruit folks to participate.

There are about 450 responses so far!  Fantastic!!

“I would love to make it to a nice round 500 – which would make any results pretty hard to dispute with that large a number,” ~ Lenore Ackerman, MD  

If you are interested in participating, please click here for the UCLA survey.

Please feel free to share the survey, which will be conducted anonymously! And if you have contributed to the registry, please take the 15 minutes or so to take the survey so that results can be tabulated into the UCLA database for consistency.

You do NOT have to live in the U.S. to fill out the registry.  Men with hernia mesh can also participate.  You can participate anonymously so please do not be dissuaded from participating!  Thank you all!!!

 

NO MESH SURGERIES – You Can Still Participate!

If you have folks in your family or friends who HAVE NOT had mesh surgeries who are willing to fill out the survey, it will provide a comparison population.  The need is to find a comparison population so they can serve as a sort of  control group that can be measured against the mesh-implanted population.

Early reports are the results are profound – the devastation and impacts on life are tough to argue with.  Results of this data should be issued shortly and Mesh News Desk will stay up on it!

Thanks you for your efforts and patience as we try to address this serious and poorly understood problem and for all of your help trying to bring light to it. ~ Lenore Ackerman, MD PhD, Assistant Professor of Surgery, Urology, now at Cedars-Sinai Medical Center, UCLA Health

Dr. Ackerman thanks Hope and all of you who participated. You made this research possible!

 

LEARN MORE:

MND, The Links Between Surgical Mesh Complications and Autoimmune, July 2017
https://www.meshmedicaldevicenewsdesk.com/the-links-between-surgical-mesh-complications-and-the-development-of-autoimmune-diseases/

MND, May 2016, Autoimmune Registry Brainchild of Hope Pagano
https://www.meshmedicaldevicenewsdesk.com/autoimmune-registry-continues-grow-mesh-related-complications/

MND,  UCLA Partners with Mesh News Desk, August 2016
https://www.meshmedicaldevicenewsdesk.com/ucla-partners-mesh-news-desk-autoimmune-registry-pelvic-mesh-complications/

 

 

 

49 Comments

  1. Anna O says:

    I had 1 mesh inserted when I was 26 in 2011 I have been ill since the day, but the last two years my body has gone like a 90 year old. So much pain so many pain killers and no light at the end of the tunnel … No relationship and in need of hysterectomy worst thing I ever done and my children are now my careers that’s just a quick note also from been very fit to a fat whale and tried suicide 3 times this year

    • Anna O says:

      2 mesh inserts sorry and 1 is missing and 1 has gone through my vagainal wall

    • Jane Akre says:

      Anna- Please let us know where you are located,,, there may be doctors who can help you and others in your area who can offer some support. please get back, janeakre@meshnewsdesk.com

      • bejah blue says:

        Dear Anna, Please talk to us, we are here for you to the extent we can be. Talking about it with your support folk does help if even just a little…don’t be alone, isolated. We love you, feel so helpless but love is powerful medicine. Bejah

      • Terri says:

        I had one time surgery and the doc that put it in told me that it couldn’t be took out and it needs to come out

        • Jane Akre says:

          Would love to help with a recommendation as would many readers here… Could you tell us what kind of mesh you have, what it was used for, where you are located and whether or not you have insurance and/or can travel? You should consult with an expert. Thank you.

    • Bejah Blue says:

      Oh God, please help us…how can they get away with doing this to us. I ran out of pain medicine Friday last. I am in agony. Yesterday I called to ask if I could come in before this Wed. and they gave me an appt for today at 11am so I am waiting for the special bus to come to my house to take me down to Palm Springs. I realize more than ever that I would take my own life if I did not have enough pain medicine and I fear that eventually I will come to that place. To make matters worse Good Morning America had a segment about the dangers of opoid addiction this morning. Curse them, fu** them. I am in horrible pain, I am dying and they would deny me pain medication and tell me to take Tylenol. This is about saving money for insurance companies and keeping workers doing their jobs for corporations that use and abuse us all. The HE** with them all. So EVIL…. Bejah

      • Jane Akre says:

        Bejah- Please let us know you made it for your appointment today…..

        • bejah blue says:

          Love ya Jane…I did somehow make it…and they let me lay down before my appt. Put me in a private room with fan, AC and closed door. Somehow it helps to lay down. They also took my BP. Again it was just under 200/105 or so. I saw a new “provider”, this time an MD, not a PA. He was a young fellow and he changed me to a stronger muscle relaxant (I have been having a lot of muscle spasms and the Trazadine just does not seem to stop them….they are terrifying. I even had one in my tongue the other day and also felt when I yawned like my jaw was going to come unhinged on right side…what is that from. I think the muscle spasms are from my spine issues but not sure. He also wanted me to have imaging of my spine today so I went to hospital to have the xrays of spine ordered by spine specialist as part of a work up in prep for multi level spinal fusion at UCSF. Pain mgt dr. will get copy of radiologist report tomorrow. Sometimes I wonder what the point in spine surgery is if this mesh is killing me anyway. So after I filled the script for OxyContin I went to have xrays of my spine at Desert Regional Hosp. and then took the disc back to pain mgt dr. across the way. He also gave me med. for constipation, do not recall name of it just now. He is going to ask for more spine images…really seems to care. It took a long time for the awareness of the pain to go away today….I also need to start putting the pain med in four diff containers, one for each week so I do not run out again. Also I remembered to ask the pharmacist about AZO (Pyridium) which gives me great relief from the Vulvadynia…it was prescribed originally by the implanting doctor and I took it for three years! It is supposed to be used only short term, not sure why but she kept refilling my prescription even though I did not go back to her more than once. One can buy it OTC but I feel that it may be less costly with a script. The OTC pkg is only for 12 and costs about $8.00 or so. I would recommend it but still do not understand why caution about long term use. Anyone else but me use this? Oh my, such a long and difficult day. I am at Rancho Mirage library and will take bus back to the hospital at 4:30pm so I can get special bus back up the mountain at 6pm. I will be so happy to be home at 7pm with my pain medication. If I were to take my own life I would lose my death benefit from the University and I do not want to lose that, I want to leave it to my loved ones). I talked to other women today about our sorrow and they had been completely unaware. Told them of Jane’s website also. Word of mouth seems all we have so lets use it to save others! Love you all, Bejah

          • Jane Akre says:

            Hi Bejah- I’m so sorry that life is so tough for you. It’s not fair. You are amazingly resilient. Glad you got some relief and found a doc who seems to care. It just takes one.

    • elizabeth says:

      I also had trans vagina mesh implant. I went to the doctor and was told everything was fine. It did not work I have just learned I have pernicious anemia and the severe headaches and pains I have been having for the past years as well as the total failure of the mesh is a nightmare. I i’d nor realize the mesh could cause problems like this.

  2. Sherri says:

    Fibromyalgia
    Mixed connected tissue disease

  3. Wilma I says:

    I have had inguinal hernia repairs 4 times when I was a kid then bladder mesh then stomach hernia mesh in, then a revision on that hernia site.

      • Bejah Blue says:

        BTW they also tell people to “have fun” with the questionaire….how incredibly offensive and inappopriate. Bejah

        • Bejah Blue says:

          Oops, sorry for redundancy…I understand it was not intentional but feel important to call it out. Bejah

          It is now 3:00pm. Just took another pain med. I am very aware of being exhausted, no energy, no appetite and this seems to be an increasing theme as well. I just woke, fell asleap on sofa watching “Too cute”…puppies always make us feel better, smile…no matter what. Feel like I am living a day at a time and wonder why…like this, why bother…quality of life issues loom large some days. Documenting, journaling online for posterity I guess. Bejah

    • Bejah Blue says:

      Wilma, And how are you doing now Wilma? Tell us, we want to know. We need to know. Bejah

  4. Melinda says:

    I had prolene mesh put in me in 2011 and removed in 2017 I had bad infection and I dont know why but the doc used a large mesh ,Im pretty sure I have some permanent issues after removal altho I have not yet been tested for Auto Immune issuses ,maybe I will but after my abdominal reconstruction surgery.

  5. Pamela S says:

    Had multiple gynaecological,urological mesh surgery.

  6. Karen says:

    I know that the mesh has caused my immune system to drop to nothing… A ups box hit my leg and caused me to go septic. I wish I could share the pics

  7. Jimmy says:

    Hi jane i found on law 360 that johnson and Johnson are pressing the Pennsylvania judge to throw put the case for the 51.7 million dollars won by mrs ebaugh. Have you heard anything about this?

    • Jane Akre says:

      Not specifically, but they always file an appeal. Will check it out. Thank you!

      • Bejah Blue says:

        Sorry to be so dense but on what grounds could they throw it out? (Answer: Any grounds they can dream up and BTW how many judges do we think are ultimately for sale?).

        I am still trying to find equilibrium with pain coverage…best not too run out of medication…it seems hard to get back to same coverage. I had a “come to Jesus” talk with my brain and mind….I told my brain to open the fuc**ng” receptors and that I would NOT give it more Oxycontin than one per four hours. It seems to have worked, but now I have a sort of bad frontal cortex head pain that seems settled behind my left eye. I just pray I do not have a stroke. That would finish me off, I am sure. I am going to spill my guts a little now…maybe it will help someone….I was sexually abused as a child for years by my own biological male parent. I prayed to God to take him away. God did but first caused him to have a series of increasingly massive strokes. The final one killed him. I pray that God will not take me that way, I beg for it. It is said that we should forgive those that trespass against us…I try to but with this individual I can not. I must believe God understands. I must believe that in suffering we participate in the passion of the Christ, that our souls are deepened through this fire, that in the end we will understand all things. I watched a program on the History Ch. this morning about the history of drugs. Very interesting. I am trying to develop a better understanding of the effect of long term use of narcotic pain medications on the mind and body. My friend John who is gay lives a few miles away. He is recovering from a cancer of the mouth. He said their water supply is polluted by Uranium and he wonders if that caused his cancer. Now he wants to sell his house and is concerned about property values. He takes Oxycontin also but he takes 60 milligrams every 6 hours, I take only 5-10 every four hours. I hope I never need 60 milligrams, hope I can resist it. The doctor I saw yesterday wants to try to convince me to try other ways to cover the pain but I am afraid…I told him I would take my own life and he relented and said he would not take my medication from me. Still I am afraid. There is nothing I am more fearful of than pain. Today I will rest and tomorrow I will try to clean my house at least a little and prepare for company late in the week. Friday I am supposed to go to a celebration of life for a special person in the community who has done a lot for the homeless and those in need over the years. I hope I am well enough to go. There is also a fall dinner/dance at a casino nearby to benefit the hospitals special house for families whose loved ones are in hospital and struggling to survive. It is a fundraiser. I would really love to dress up and go IF I feel well enough. We must try to participate in life and sometimes if we just get out there we find that to some degree we step outside of our pain which waits for us patiently at home. I have been putting away the summer clothes and linens and getting out the deeper fall colors and decor. It is enjoyable but more difficult than it has ever been. I am not as well as I was a year ago. I wonder what I will be like next year. There is, after all, not real hope for improvement, for a happy ending, for life to become joyful again, at least not as it was. We are, it seems, on that long terrible road to the end in ways other people are not. I pray we all have the courage to make it a good journey, an honorable journey and set a standard that will forever shame those who condemned us to a life of pain and suffering. I will hold high love as my standard as long as I can. Bejah

    • bejah blue says:

      Jimmy means “throw out”…nothing they try surprises me and clearly they think they can do whatever they want and get away with it. I hope none of us buys anything made by this corporation or any of its subs. This is war. Bejah

  8. Lordhelpus says:

    I just saw this the news about the woman who won the 57 million against jnj ethicon in philly. Great news on cbs

    http://cbsloc.al/2xEzYur?anvt=9

      • Lordhelpus says:

        Praise Jesus!!I know you reported about her verdict a long time ago and I thank you for that, but I was referring to it finally hitting the airwaves!! I hope the rest of the networks do the same, I just want the word out…God is good!!

        • Jane Akre says:

          You are right…. finally some mainstream coverage! Wish we were as smart as Scotland!!!!!!

        • Bejah Blue says:

          Yea, GOD is great! We sometimes find it hard to understand that HE does things in HIS way and in HIS time and we must trust that. It is hard sometimes.

          My pain management doctor gave me a new muscle relaxant. The Tizadine was just not working (I have really bad muscle spasms in my legs mostly, a lot…mostly at night for some reason (very scary!) and I wanted to mention the new medication and ask if anyone is familiar with it…it is METHOCARBAMOL…quite a mouthful. 500MG 2xday. Thanks for any info. Also he gave me scripts for constipation: Docqlace 100mg 2xday and Senna 8.6 mg once a day at bedtime. Does anyone have experience/comments about these to share? Thanks so much. Take care all,

          Bejah

      • Bejah Blue says:

        Ha! “Better late than never”? Thank you Jane for your eagle eye and keen sense of timing. You are rather like a war correspondent methinks. Bejah

  9. Sonja P says:

    I have fibromyalgia and can tell that it is getting progressively worse every day. I also have a mesh implant and I am in so much pain every day that I can hardly stand it. I have no insurance and cannot find anyone to discuss doing a removal. I am not convinced that a removal would help anyway.

    • Jane Akre says:

      Sonja- Let us know where you live…. there maybe a doc willing to work with you, but you do need an expert to access the situation as to whether a mesh removal is recommended.

    • Bejah Blue says:

      Wow Sonja…Maybe you could put up a go fund me page and link it to Jane’s website and perhaps others. Maybe one of the experts would be willing to do surgery at no or low cost for you. I have learned in life that more often than we might think people will do things for us if we just ask, if there is an awareness of our situation. It is worth a try I think. Please consider it. What is the worst that can happen? Take care. Bejah

  10. bejah Blue says:

    Last night I had trouble with my left eye all night. I have been having problems with it since the cornea was hurt in that horrible implant surgery at UCLA in 2010. How they managed to damage the cornea of my eye and wound my abdomen in that surgery remains a great mystery. I think my problems with my left eye stem from then. I have had watering, and discharge of crystalline rocks and pain and a sort of vague itching. I woke this morning and the skin above the left eye was red, there was a red line across along the top of the eye socket. It frightened me. A friend took me to urgent care. The doctor said there was an infection. Nice. What next. UCLA never said they were sorry, barely acknowledged even doing this to me. I had to go to the pharmacy with four prescriptions to fill, one for pain (Narco), one was an antibiotic and I am not sure what the others are. I have an appt. with my eye doctor first week in November. I wonder if any of you have to take sleeping medication now as I do. Between waking to take pain med., to empty my bladder, to maybe take another Clonidine to slow my heart, take another baby aspirin for the Bursitis, apply more coconut oil to my Vulva, sleep is pretty illusive. Sometimes I wonder even now why I go on….I guess it is this man I love, because hope springs eternal, for my beloved dogs, and GOD wants me to, expects me to so long as I can. Misery loves company so tell me how you feel sisters. Now I will try to sleep, bath then prayer, then sleep by HIS grace. Bejah

    • Bejah Blue says:

      I am also using two different antibiotic ointment/drops in both eyes. The antibiotic is for 500MGx4 a day for seven days probably broad spectrum. I always fear everything stems from the toxic mesh. Is it now infecting my mind, my eyes…will I become blind? I do not feel well so going back to bed…at 200 in the afternoon. My puppies stick to me like glue when I am sick…they can tell, I thank GOD for them. Bejah

  11. Cheri says:

    I had a suburthral bladder mesh implant when I had my hysterectomy in April 4th, 2010. Since my surgery I have had pelvic organ prolapse, urinary incontinence, shortening and shrinkage of my vagina. I have had to do pelvic floor physical therapy, I have been diagnosed with Gastroparesis, celiac disease, lactose intolerance, vestibular brain disorder.

    I have a multitude of doctors, medications, and therapy.
    I blame my implant for my immune disorders.
    Finding people to believe me that the polypropylene is at fault will never happen until the media, doctors, and public have been made aware is the only way to get justice…until then the pharmaceutical companies will continue to keep manufacturing and profiting with toxic, faulty, deadly devices. What will it take to stop these fraudulent criminals from continuing making deadly devices!!

    • Jane Akre says:

      It’s a very slow laborious process to gt science to recognize autoimmune reactions to PP mesh…. It must be proven by the evidence in clinical trials,,, etc etc. 4 So the process is slowly starting here…

  12. Bejah Blue says:

    Bless you Cheri, I am so sorry. We live in a place beyond words it seems.

    I want to share with Jane and everyone that I did finally participate in this survey. I did it for you all. I do not think there is any hope for me medically, legally or in any other way that is related to this life. I did it for you all. We do not know what they will do with the data. I do not trust them but I do not trust any entity any more. If there is any shred of hope that it will help us or others, those to come…then I guess it is worth the effort but I remain uncertain and suspect. It comes with the territory, what can I say. Because I am a member of the UC family I should have been protected especially but I was not, I was betrayed, used and broken. I curse Ha-Jong Kim. She should be ashamed. She brought shame to herself, shame to her family, shame to her people, to her ancestors. I curse the department head of Urology. I curse the Board of Directors of the SOM. I will post their names here soon. I will also be posting data re Johnson and Johnson. I will never relent….I will never let go my claws. Bejah

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