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Dear Doctor, Dear Doctor, Lend Me You Ear

Graphic by Jay Lee

Graphic by Jay Lee

April 19, 2013~ This essay is written by contributor, Nonie Wideman of British Columbia, who has suffered with mesh injuries for years. As a research and writer, Wideman has been a voice of the community of mesh-injured women.

MDND supports more open communication between doctors and their patients who are suffering mesh complications.  Thank you Nonie.

 

Dear Doctor, Dear Doctor, Lend Me You Ear

Dear Doctor,

If you are reading this letter handed to you, you most likely have a woman in front of you, with systemic health issues and complications that started after being implanted with a synthetic medical mesh to repair a prolapse (POP), and or stress urinary incontinence (SUI).

Time is of the essence

If this woman is lucky her symptoms started not long ago, or shortly after mesh implantation before her tissues had a chance to integrate tightly to the mesh, and foreign body reaction (FBR) has not had time to degrade the implant, releasing degradation products from polypropylene or other similar polymer constructs, which in turn cause free radicals like hydroxyl to be released into her tissues.  If you have the skills to diagnose mesh complications and FBR accurately and quickly she may stand a chance of having the mesh removed with the least amount of damage possible.

If you do not have the skills to diagnose suspected mesh complications accurately she is at risk of multiple erosions, extrusions, mesh migration, shrinkage, adhesions, constant infections, bladder and urethra damage from mesh perforations. She is at risk of mesh fragmentation, and chronic FBR leading to autoimmune vulnerability. The longer it takes to get biologically incompatible mesh removed the more tissue damage continues to occur. Delicate and very important nerves, especially pudendal nerves, are at risk of permanent damage, if they have not already been compromised by the blind procedure of mesh implantation.

However most chronic FBR to medical mesh implants goes unrecognized as it is an insidiously silent downward spiral in health that may first present as fatigue, anemia, heightened chemical sensitivity, allergic reactions exacerbated and more frequent, with an achy all over body feeling, with pain in muscles and joints.  Studies show the average time for Implant Syndrome to be recognized is 2.7 years. Sometimes pain is the first red flag that does not go away after a reasonable healing period from the time of the implant procedure.  The pain increases until is not easily controlled by anything but Morphine or Oxcycodone, which means most women afraid of drug addition will suffer with inadequate pain control while doctors fumble around prescribing  estrogen  therapy and pelvic physical therapy. Wake up docs!!!! If FBR is causing implant failure and internal erosions you cannot see, thickening the vaginal mucosa is not going to stop the FBR or erosions and extrusions but delay having the incompatible mesh removed as soon as possible to prevent complications from multiplying. Having any manipulation of the pelvic floor when mesh is degraded and brittle enables fragments to break off and migrate causing a case of “looking for the needles in the haystack come explant time,” not to mention that mesh being manipulated during physical therapy when erosion is happening is akin to rubbing a cheese grater over your skin.

Who do you refer this woman to?

A woman with transvaginal mesh complications needs a highly skilled urogynecologist who can quickly validate mesh implantation failure, has a high patient satisfaction rate, and is recognized as being an expert having done mesh explants daily if not exclusively, and recognizes that because FBR caused the implant failure it is imperative to remove as much mesh implant material as safely possible to stop all FBR, as well as remove mesh from organs and tissues where it was not planned to be.

This specialized surgeon must display an intimate knowledge of nerve pathways in the pelvic floor and be able to preserve as many  nerves as possible without compromising any more nerves than already damaged by erosion or surgical incisions. It would be beneficial to the woman in front of you if this surgeon had access to 3-D ultrasound imaging to help with the diagnosis of mesh complications and the mapping of mesh placement, migration, and fragmentation to assist in the best outcome from diagnostic assisted explantation surgery.

It is time for the standard of care to be upgraded when the current standard of care does not take into consideration new technology or knowledge regarding resolution of less than satisfactory current practices.  Who would you send your wife mother or daughter to? Would you send your loved one to a surgeon who has not done hundreds of mesh excisions and reconstructions after mesh injury?  Would you send your loved one to a doctor who will not consult with the experts in the field of mesh removal and diagnostic imaging of mesh, who is not confident of his skills to remove mesh adhered to pubic bone when mesh is going to:

1)  enable the FBR reaction to continue,

2)  cause systemic illness for as long as mesh incites inflammation

3)  incite FBR that degrades mesh via oxidization so that mesh leaks toxic  products  such as hydroxyl (a destructive  dangerous free radical)

4) harbour dangerous bacteria in its filaments

5)  trigger and enable autoimmune disease pathogenesis

6) cause chronic excruciating pain

Why should you care?

This woman before you trusted a doctor when she consented to a surgical mesh implant. She and the surgeon that implanted her synthetic TVT were most likely not fully informed of all the serious complications of medical mesh implants: that the complication rates are not rare unless you consider a 30 % or higher complication rate as rare or acceptable. What manufacturers failed to warn about is not their fault. Manufacturers have to face juries now.  J&J has been penalized, ordered to pay over 7 million dollars for failure to warn of all the complications and seriousness of the complications of its product in the recent Linda Gross vs. J&J lawsuit. J&J took 4 of its meshes off the market last year. Are you now sitting up and taking notice? Did you realize medical meshes can get fast tracked  without any or any substantial testing onto the market via the FDA’s 510 K process because they are substantially the same as a product that made it onto the market and then was recalled? You probably like most people thought products that were meant to be permanent implants would all have to be thoroughly tested. You probably did not realize there is no protocol to recall the subsequent approved implants substantially the same as the defective dangerous implant product. Are you feeling as let down and disgusted as mesh complication patients are feeling?

Fault should be assigned to doctors who hesitate to educate their peers to respond quickly, skilfully and compassionately to patients with medical mesh injury and complications.  Fault should be laid at the feet of those who failed to report all complications caused by medical implant materials.  In Canada doctors are protected from lawsuits when they inadvertently, negligently or erroneously harm patients, so there should be no excuses for ignoring the harm done and not addressing it. Nothing should protect your consciences if you fail to re-educate yourselves with the firsthand knowledge  and experiences of patients with mesh complications who can deduce for themselves what went wrong by diligently researching the same materials you have access to but failed to take into  consideration.

Many mesh victims are willing to forgive doctors for embracing medical mesh implants before long term studies provided proof of benefit over risk if doctors would listen, learn, and respond to mesh patients without arrogance and self-protective posturing.  We know our bodies. We know how we felt before mesh and after. We know how to “google”, research, and study in efforts for self-advocacy when it appears the medical profession has abandoned us. Mesh complications are very rarely “manageable”. How we hate that word. Mesh complications are endured at great physical, financial, and emotional cost.  Thank you for reading this letter. Please do for this woman in front of you, what you would do for your own loved ones or yourself in this situation. It is the least your profession can do for the mistakes made harming those who trusted doctors to first “do no harm.”

Sincerely,

Nonie Wideman,

~ Advocating for women with medical mesh complications.

1. No I am not a doctor!

2. I have researched medical journals, articles, studies, abstracts and women’s  support groups for TVT complications for  over two years

3. I have experienced mesh injury personally

4. What have you studied regarding TVT complications?

5. Who are you going to really listen carefully to?  Will you listen to patients looking for pain relief and quality of life after mesh gone wrong, or manufacturers who profit from selling mesh? Or will you listen to doctors still defending the indiscriminate use of synthetic medical mesh?

God bless an open mind, a compassionate response, and every effort to change that which we can and should.

 

11 Comments

  1. Donna says:

    Nonie,

    Thank you for writting this….I also had the surgery years ago and now for the past few years the symptoms seem to be getting worse. I am now informed I will have to start using catheters because its to tight and I cant empty my bladder. I am not that old and have been crying more since I was told this. Surgery is not an option for me as it has been too long.I had faith in drs but now I dont and I know I will have to keep seeing more and more of them.And deal with the ones who will say its in my mind,and theres nothing wrong with the mesh. I am unemployed and for me to have to keep paying drs…its just not right

    • Nonie Wideman says:

      Dear Donna, please do not give up hope,there are success stories of having mesh removed after many many years…you have to find a skilled surgeon… there are a few … I pray there is a way for you to fnd one and find relief ..if not throgh surgery at least effective chronic pain management… Nonie

    • Linda says:

      DONNA, PLEASE DONT GIVE UP. My brother had hernia mesh & plugs in for 18 months, before we went to Daytona Fl. and saw Dr.Bruce Ramshaw where he did remove the mesh & plugs. No he is not completely over all of this, but would hate to think where he would be without the removal. Most doctors will say it is all in your head. Do not give up, you know your body better than any doc. I have also heard of a Dr. Raz in LA California, and Dr. Peterson in Las vegas. Also helpful info from North Penn hernia institute. Please keep researching and do not give up. Best of luck to you, you will also be in my prayers.

  2. Nonie,

    Thanks so much for writing this letter. I plan on mailing it to my former urogynecologist. I went to see her on Wednesday and she would not see me because I was 15 minutes late due to all the construction going on at the hospital her office is in. The 2nd doctor who no longer wants to deal with my problems due to the mesh they implanted in me. I have waited in her office over an hour to be seen. And have also waited in the exam room while she left to see a patient in the hospital and never complained. The last appointment I had with her was 6 months ago and she suggested the old Vagifem and Physical Therapy route. She said she could feel some of the mesh that she implanted in Aug. 2011 trying to come through my vaginal wall. I was so shocked when you mentioned these very things in your letter. I had a feeling she was just stalling, to keep me out of her hair for 6 months. She mentioned she could remove the mesh for me. In April, 2011 she did remove a pro lift that another doctor had put in me in 2008. After the surgery was over she informed me that she only removed the portion that had shrunk or collapsed, leaving the arms of the mesh in my body. I am now having pain in the area where the arms of the prolift were left in, the pain radiates down my leg and is quite intense. I also have a TVT sling, and a sacralcopopexy involving more mesh. When this doc first told me she was going to use mesh for the savralcopopexy I questioned it and she said it was a different kind of mesh. And stupid me I still trusted her and believed her. I kept thinking about “do no harm” even though I had problems with the previous mesh. Funny how we were told mesh would solve all our prolapse problems. I never ever dreamed it might have to be removed one day. And even more unbelievable that none of these docs that were so enthusiastic to put the mesh in could not and would not take it out. It is like a bad dream come true. Oh, and surprise , surprise, no doc mentioned, pain with and after intercourse, daily lower pelvic pain that gets worse as the day goes on impacting our quality of life. I have many more symptoms but I want bore you with them. I just want to thank you again and let you know I will be sending your letter to my former doctor to let her know I am not the only one with these problems and she needs to get with the program. Her cover has been blown. I could not have done this without you. God Bless.

  3. Blanche says:

    My mesh implant was 3 1/2 years ago. My discomfort started almost immediately. I will see the doctor who did the implant in a few days; we have tried many kinds of “fixes” but neither of us has ever mentioned the mesh. I am sure he doesn’t believe that’s my problem and what if it isn’t? I am in nightly pain, and it is more frequent as time goes on but I don’t know where to go to even get a diagnosis. This doctor installed a Medtronics device to help with my pain (he thought it was a damaged nerve) but after initially helping with all symptoms: pain, frequency, and leakage, it no longer helps. Where do I go for help or even a diagnosis? I am constantly depressed and angry and I think I am obsessing over this, and my husband must be sick of it.

  4. laura says:

    My life is in Shambles :shambles plural of sham·bles (Noun)

    Noun

    A state of total disorder.

    A butcher’s slaughterhouse (archaic except in place names).

    Synonyms

    abattoir – slaughterhouse – butchery

    Along with the nightmare of my credit score or achieving my degree in Engineering. My life stopped with mesh and who do you think is going to raise my children to be successful as your parents helped guide you to success. You all took that away from many of us along with our housing and education. How are we to better our own lives and make a living for our children to be raised properly? Tell me our career’s are ruined as well as our credit scores from this. We all live in a world of making history in new medical journals for you but all of our family suffers their own futures because of this domino effect you all put on us.Did you all sell this product to your own family members? What about all the damage to our future generations? Did you ever put this in your equations? What will happen with future births with mesh inside a mother Or father for that matter? I’m sickened by this whole equation of the medical field that is supposed to keep an oath for their patients well being and all this amounts to is a quick buck to help pay all of your own bills. Thanks much for your faith of a physician.Not!

    • Laura says:

      I have twins as well Doctor just as you do. Thanks for your wonderful advice that i did not need. I was better off without it. My girls have and will in their futures suffer more now than they ever had to.

  5. Laura says:

    We ARE and our offspring the Mutants of Mesh.

  6. I am a husband of a mesh implanted wife, who has been diagnosed with SEPSIS, MRSA,and is seeing an Infectuos disease doctor to help her with all the pain she suffers from. She has since had a knee replacement, and is having problems with it due to the infections with-in her system.

    Her original doctor suggested she had a weak immune system, we have not any additional surgerys on the mesh. We were told that repairing the mesh would be like putting scrambled eggs back together, real nice to know! Doctors @ University of Penn recommended no additional surgerys,reason possible risk of more infection.

    Anyone going through this type of complications,and or symptons?

    • laura johnson says:

      Find a doctor that cares and understands the mesh. They are out there. She needs to remove the mesh. Look at chiefs of staff first. uro/gyn and colon.gastro will be next.

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