I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Not a Mesh Post but a post on my daughter’s Wedding…I needed a change tonight…hope you enjoy…

I think at some point in all of our lives we have defining moments. At some points those moments come rushing back to us sparked by some event we have just gone through.

 I have to admit that at the time of Ron’s death, I felt like that was the most defining moment of my life. I had survived the horrors of my husbands Cancer and fulfilled my promise to him to die with peace and dignity in his own home surrounded by his greatest loves, his family, friends, but most of all, his children. At that time we were a family broken by pain and death and I remember thinking how would we even begin to carry on from this tragic event.

Over the course of the next few years, my kids and I became inseparable at times…we forged new bonds and picked up the pieces of what was left of our broken family and put one foot in front of the other each day treading new unchartered territory. What we did not know at that time was how strong that bond would become and that it would never be torn apart again.

 Michael’s wedding last November was the start of new lives for us…he was now a married man and was making his own decisions about life and what lay ahead. On his wedding day I looked at him in total awe and amazement at how he had come through such pain from his Dad’s death and then his battle with Cancer and yet he was truly truly happy, he laughed, he cried, he loved  and on that day, my precious baby boy became a man. That was a very proud day for me.

During this time I had met James and my life was filled with such happiness, my kids were settling into their own lives and things were really really good. We had challenges to over come but we stood together and faced them head on. There were times though I felt like our family was being torn apart again by certain events, but once again we emerged renewed and stronger than ever. 

Now came the announcement of Letisha’s wedding so we once again pulled together and had fun planning and celebrating.  Teisha’s wedding for me was much harder as it signified the actual acknowledgement of the death of her Dad. It’s interesting to me how the weddings of both my kids were so different at times and yet so alike. I knew Teisha’s would be more painful in some ways as she did not have her father to walk her down the aisle or dance the first dance with…all the things a little girl dreams about.  So we came up with ways of making her special day just as happy and memorable as Mike’s wedding was.

One of her bridesmaids, Stephanie, came up with a wonderful way in which her Dad could “escort” her down the aisle, and that was to pin a picture of her Dad to her garter belt!!! My little girl had her Dad beside her just as she had dreamed of.  Teisha also gave me the great honour of “giving her away”…I shed a tear or two as the Commissionaire asked “who gives this woman too..” and I very proudly stated. “I do”…my heart was racing with joy and sadness at the same time. For her father/daughter dance, I once again had the great honour of dancing with her to a song her Dad sang to her every night at bedtime, “You are so beautiful to me”…It was a bittersweet moment.

But even with all of these wonderful events taking place, I think that my most proudest and most defining moment of my life came when my son escorted his sister down the aisle. It represented the love of two siblings becoming stronger together and sharing what must be one of the best moments of their lives as siblings. My heart was ready to burst at that moment. I have never had a feeling of such overwhelming love for my kids (aside from the day they were born of course!!!) until this point. I love my kids to death every day but that particular moment was beyond how I could ever find words to describe it. I looked at these two souls who have endured so much in their short lives and thought My God, they are the most wonderful and beautiful people in my life. They came through such adversity to this utmost defining heart warming moment. They put all of their differences aside and joined together in celebrating this moment in time as a brother and a sister who truly love and respect each other.  I have never been more proud of OUR children. At that moment, I knew in my heart that Ron and I had done a damn fine job of raising our children.

I now know that no matter what challenges we have ahead, Teisha and Michael will always have each other to turn too. There are so many people I want to thank but I think its best I just send out a HUGE THANK YOU  as you all know who you are!!! So many people contributed in many wonderful ways for each of my kids weddings and my heart is overflowing with the love that has been shown to my family.

As I sit here writing this, I must admit the tears are flowing because I realize how special so many of you are to me and my family and how grateful I am to have so many wonderful people in our lives. I hope that many of you have such memorable defining moments of pride and love in your lives as have I.

I truly believe that through our darkest most painful times, we emerge as much stronger, tolerant and compassionate people. May all the days of your lives be filled with much love and happiness as mine have. Hold your family and friends close to your heart always….

Love,

Diane

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Never give up Hope….

I am thinking that sometimes life just throws you a curve ball and then tosses you out there to figure out what to do with it…I am needing to dig deep into my soul to figure out what I need to do to get well, focus Diane, fight Diane, never give up Diane.

I was raised with “Can’t or Won’t” are not options and don’t belong in our vocabulary, so now I need to figure out the alternative. The one thing I know for sure what keeps me going is the thought of my beautiful sweet little granddaughter, Lily, she is my reason to fight.

ILY my sweet sweet Lily, you give me hope for a better tomorrow…your beautiful smile lights up my world on the days I am feeling down.

I Love you to the stars, the moon and back again, always and forever,

Nana xoxoxoxo

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Part 4 of Mesh Resources….

In part 3 of my Mesh Blog, I gave you some resources to go to for more info on mesh and the support forums for you to tap into and find help and solace. I hope you are finding the information you have been looking for and I hope you have joined some of the forums and have bonded with some of the most amazing people I have ever come across!

Now in this part, I will give you some very daunting and more than likely overwhelming studies that have been done on mesh and the havoc it plays on your system. This is solely for your information as I am not in any way affiliated with any sites and studies I will recommend. I do not gain anything from the information I pass on, it is simply that, information I pass on to you. Ok, so the legal aspect is taken care of, let’s get down to business with the stuff I am going to give to you…it is raw and scary and there have been articles I still can’t read because all I can say when I do read them is, WTF….

I also have to say that without the hard work, research and dedication by my dear friend and fellow meshie, Nonie, this list would not be possible! She has done the hard work in finding the info and I am simply supplying you with her findings…Thanks my favorite Meshie!!!!

The Components of Mesh:

            www.bostonscientific.com

    2  This is what MESH looks like under a microscope….

          

     3.   an interesting article where Dr. Raz comments on medical mesh injuries in a round table   discussion:

           www.obgmanagement.com/pdf/2102/2102OBGM_Article3.pdf

   4.   now if researchers find polystyrene containers leach chemicals into their experiments and corrupt them..   why would  the medical world put it in our bodies and corrupt our systems?

        http://www.phys.org/news145545554.html

 Plastic additives leach into medical experiments, research shows November 10, 2008 (PhysOrg.com) — Researchers in the University of Alberta’s Faculty of Medicine & Dentistry have shown that using plastic lab equipment can skew or ruin the results of medical experiments. The researchers identified two classes of chemical compounds in commonly used plastic lab ware that leach could into solutions. They further demonstrated that the compounds interacted biologically with, and changed the behaviour of, human enzymes and brain receptors in different experiments. The researchers describe their findings in an article that appear in the latest issue of the academic journal Science. Using mass spectrometry to analyze the solutions at the molecular level, lead researcher of the study and professor of pharmacology, Andy Holt, and his colleagues identified the presence of two families of compounds from the plastic that had contaminated their experiments and produced biological effects: quaternary ammonium biocides-anti-bacterial agents that manufacturers add to plastics-and oleamide, as well as related chemicals compounds used to improve the properties of plastics. Oleamide and related additives are also known to leach into foods and drinks that are stored in plastic, or plastic-lined, containers, especially those made of polypropylene. However, the potential health effects of that are not known, says Holt. “Because oleamide is a molecule found in the human body that contributes to normal physiological functioning, ingesting molecules that are structurally similar to oleamide may either over-stimulate or-more likely inhibit the body processes regulated by oleamide,” he said. Holt’s lab conducts basic research into how human enzymes work at the molecular level. With a greater understanding of how enzymes work, scientists can design drugs that will regulate enzyme behaviour in order to treat medical conditions. But the effects of the contaminants were, “so potent on our enzymes there was quite a significant effect on our results,” Holt said. They traced the source of the problem back to plastic tubes they had been using to prepare reaction solutions. Use of similar tubes also resulted in substantial effects on the behaviour of brain receptors being studied in a different lab by his colleague Susan Dunn, professor and chair of the Department of Pharmacology. Holt and his colleagues tested pipette tips, Eppendorf tubes and Multiwell plates from several manufacturers. The contaminants leached from all of these items in the majority of cases. But the specific contaminants, and the degree to which they leached out, was different in different products. Given that plastics are in common use in research laboratories, scientists everywhere will likely be interested in these findings. “If you are testing whether a drug has an effect on an enzyme and the results are inconsistent-one day there’s an apparent effect and the next day there’s not where does that leave you?” Holt said. “The time and money that is wasted; there are implications for the public interest.” According to Holt, these latest findings have, “significant and far-reaching implications for the integrity of scientific work.” Provided by University of Alberta.

5.    SPECIAL REPORT: Doctor warns of pain associated with using surgical mesh in hernia operations;

      http://www.ktvu.com/videos/news/special-report-doctor-warns-of-pain-associated/vG67c/

6.   some info on another mesh maker’s brochure…now they tell us in small print..almost oh by the way..our product is good but:

        http://www.americanmedicalsystems.com/DAM_public/5823
        www.americanmedicalsystems.com
7.   An interesting Video to watch:
     http://www.americanownews.com/story/17939546/routine-surgery-for-women-can-cause-lifelong-complicati
   
8.  some more info regarding nonyphenol, the toxic crap that can leaks out of polypropylene..

      www.beyotime.com
    
     Molecular Immunology 43 (2006) 915–926;
 
Nonylphenol (NP) is not produced naturally. It is the major degradation products of alkylphenol ethoxylate and is one of the most common chemical contaminants. NP presents in ambient air, water, soil, sediments and biota. It enters aquatic ecosystems through sewage treatment, pulp mill effluent, industrial effluent, urban and agricultural runoff (Ying et al., 2002). NP is not water-soluble because of its hydrophobic properties. It also favors anaerobic environment and is stabilized, thus there are high concentrations of the toxic compound NP in anaerobically stabilized sewage al., 1984). Studies showed that the concentration of NP in the aquatic environment, particularly in sediment, could reach up to 300 ppb (Nagao et al., 2001). NP is accumulated in our bodies through the food chain. Concern has increased recently about the NP because it can mimic natural hormones and the levels present in the environment may be sufficient to disrupt endocrine, immunology, and reproduction (Chapin et al., 1999; Masuno et al., 2003; Ying et
9. wow, just did some quick math for stats in the Globe and Mail article;
25,000 SUI  surgeries per year yr. in Canada with 90% using mesh equals 22,500 mesh surgeries x 15 % complication rate equals 3375 women per year in Canada with a problem !!!!! and I wonder how many of those problems were accurately diagnosed and addressed with skilled knowledgeable specialists? That does not include the 30% of 5000 POP surgeries that use mesh , so 1500 x 15% equals 225 more women with possibly larger amounts of  mesh in their bodies….so estimate 3600 women having adverse reactions and complications from mesh implants per year…. Yikes!!!!!in 5 years 18,000 women  may have been harmed by medical mesh implants!!!!  that’s just in Canada…..  and using a 15% complication is being very conservative !!!!
10. very worthy of your perusal:
     
        www.acog.org
        ACOG-Vaginal Palcement of Synthetic Mesh for Pelvic Organ Prolapse
  

           www.multiplechemicalsensitivity.org

12. Mandate Compulsory Reporting of Surgical Implant Device Complications – The Petition Site

           www.thepetitionsite.com

13.  How Does the FDA Monitor Your Medical Implants? It Doesn’t, Really

       www.propublica.org

14.  http://www.marketwatch.com/story/transvaginal-mesh-class-action-commenced-in-canada-2012-04-17-   10000

15  Another story, friends, of why we need mandatory reporting of medical mesh complications while we wait for the legal system to bring justice and compensation for women already harmed. Perhaps punitive measures by the legal system can do what the FDA has failed to do…force the re-assessment of the use of synthetic medical meshes as a standard of care for women’s pelvic health.. Manufacturers are …going to resist, and probably going to point fingers at doctor error, as manufacturers make huge profits  from sales to the medical world. Some companies attribute at least 40% of their billions of profit to sales of medical devices. Now don’t you think they have means and power and motive to continue to”fudge” the complication rates,and influence policy making? Let’s hope judges that are hearing the lawsuits of women who are seeking compensation are not in positions where their impartiality can be corrupted. Lets pray the judges make it financially prudent for manufacturers to voluntarily recall their misrepresented medical meshes;  (Taken from one of Nonie’s posts..)
16

17   http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.fertilityfactor.com%2Fhow-environmental-toxins-can-influence-     female-cancers.html&h=-AQGd_Ecy

Well,  I have definitely given you more than enough info for now! It will take you awhile to read through it all and then digest what has been said. The more educating and advocating I do, the more boggled I am as to why this ever happened…that part never goes away for me…

I would like to Thank ALL my fellow “mesh” friends for coming up with this very impressive list of reading material!! We all work together and one persons accomplishment is shared by us all.

Happy Reading and I will post another part to this list as we build it! We have many researchers and the amount of time put into one of these lists is mind-boggling!

“Often daunted, NEVER defeated”

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Mesh is “meshing” me up badly…

I havent written for a bit as I’ve been thinking about the course of my life as it is and having somewhat of a struggle with accepting where I am at.

I never in a million years thought this is what my life would be like at this age. You can call it a pity party or a feeling sorry for myself week or what ever you want, but to me it is watching my life spiral out of control, a slow painful spiral downward to god only  knows where. I have noticed a significant decline in my health over the past few months and more so in the past few weeks.

I used to have a few good days or even a good week in a row and then I would have a few bad days…not ideal but manageable. Now I’ve noticed that my good days are few and far between and even on the good days I have to really pace myself because if I over do it I will end up on the couch for the next 3-5 days.  That was also not ideal but manageable.

That has now been replaced by a good day here and there in a 2 week span and the rest are uncomfortable, painful days filled with a lot of anxiety and panic attack issues. The anxiety level has noticeably increased in the past 4 weeks and I’m not sure how or why they have become a part of my everyday life. Only 4 weeks ago they were maybe once or twice a week and now they are daily and sometimes more than once or twice a day. I have also started having “night terrors”…these are horrendous, you wake up and try to get up but it feels like someone is on your chest holding you down, you literally can’t lift your head off the pillow. It is terrifying. I discussed it with my GP and he said that although I “feel” like I am awake, I’m actually not. I think all of these symptoms are because my body is under attack on a daily basis from the mesh that has taken up residence in my pelvic area. This is only an assumption on my part, due in fact to the medical profession not wanting to actually come out and say, “yes, the mesh is messing you up”.

I am involved with a group of people I liken to my second family…they “get” me on the good days, the bad days and everything in between, just as I “get” them. We have a bond that is unbreakable as  we all go through our daily trials and tribulations. I don’t feel like I am “whining” when I spew off my disgust at everyone from Doctors to Manufacturer’s who  clearly do not have our best interest at heart, because I know I am only saying out loud what everyone else is thinking. We take turns on a daily basis taking care of each other, helping whoever needs a big hug and pat on the back, and some days giving some people a good talking to about taking responsibility for their lives and the path they have chosen for themselves. We are good together and we do not fight or name call, we are family and we treat each other with respect. Today I am feeling like I am not involved with them as much as I should be. I need to deal with this issue. I will sleep on it for a few nights and I know I will have more clarity on what to do.

I feel like my pain is overwhelming and taking over me. It’s not just a physical pain, it’s a very emotional pain and that for me is the worst part. I can deal with physical stuff pretty good as I watched my husband die from Brain Cancer over a 7 year span and when I feel like I am at my wit’s end with my pain, I think of all that he went through, and very rarely was there ever a complaint. He was truly amazing and to this day remains an inspiration to me to keep going and never give up. “Do not let the pain take hold of you” he would say, “You are stronger than it and it will only take over if you ALLOW it to”.  So on a physical level I can cope pretty well. The hard part for me is the emotional part.

I feel like I am drowning some days, drowning in too much information, drowning in not ENOUGH information and drowning in all the things I have to stay on top off…its a constant daily struggle to be on top of all your various medical appointments for all your various doctors, specialists and surgeons.  Then you have the political aspect of this whole damn mesh, sure I could just lay down and let someone else do it, but that’s not me…I am more determined than ever to see that the powers that  be take responsibility for what has been done to me and my fellow mesh family. Somewhere someone dropped the ball on this and that needs to be brought to the forefront of this fight.

I personally don’t think there will ever be a day when someone steps up to the plate and says, “We messed up and we are sorry for your pain and for what your future holds in terms of future surgeries and ongoing medical issues”. If that day comes, I will probably cry because that would truly show to me that the “industry” does indeed care about me as a person, not a “lot number” for my implanted medical device. There have been so many times during this journey that I think back to the movie, “Erin Brokovich” and how she fought so hard for those families and there was never an apology from the company involved but at the end of the day, the families were monetarily compensated but more importantly, their voices were heard and the companies were “shamed” into admitting they had done these people wrong…to me, that is sweet justice.

The other issue that is weighing heavily on my mind at present is waiting for surygery…I would be a liar if I said I was looking forward to it…I am in one way but there is another part of me that is wondering are we just opening up a whole new can of worms. There are so many differing opinions on whether to have “total” removal or “partial” removal and then there is the issue of who is capable of doing the surgery. So, that is another avenue I am researching daily…I spend hours checking out all the Surgeons and who is capable of what. It is scary, you have to go into this surgery armed with information or pay the price if you don’t. 

As of today, I have been told to pretty much stay immobile to aliviate the pain and pressure of the mesh erosion until surgery which is not going to be for another 1-3 months. Apparently there is a shortage of anesthetics at the Hospital I am going to so that has cut the surgical hours back for my Surgeon. I have been advised to not lift anything heavy, stay off my feet as much as possible and try not sit in an upright position due to the location of mesh erosion. I think its going to be a long few months. When this information was delivered to me, I initially cried and then I felt guilty, something I am working hard to overcome.

I hate the feeling of being dependant on people…for me that is feeling incapable of looking after myself and being a burden to my family and friends. I know it is my mind running away with me because I know with 150%  certainty James is here for me and so are my kids…my family and friends are always here for me as well but I try not to ask because they all work full-time and have their own issues in life. My sisters are busy caring for my Mother and all of her health issues and appointments, I can’t thank them enough for all they do for her and yes, I used to feel guilty about it. In the past few weeks I have been able to get my “guilt” issues under control by coming to realize that I DID NOT ASK FOR ANY OF THIS TO HAPPEN TO ME, however, it DID happen and I have to deal with how it affects every aspect of my life. So I have finally cut myself some slack in the guilt department.

Its been a long day and I have had a lot to think about… tomorrow is a new day and with a new day brings hope, hope for a better day and a step closer to getting my life back in track.

 

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I’m pulling the “mesh” out of my head today…

I didn’t finish my mesh post until 2am this morning…I wanted to get all the mountains of information out of my head and yet there is still more there! So here I go with some more tid bits for you to do whatever you want with, at least they are not swimming around my head all day!
 
My goal from day one of this BLOG was very simple…ADVOCATE AND EDUCATE, a role I am very comfortable in from life experiences….For whatever reason there are people who are not able to do this for themselves and need a gentle little push to get them started. I sat in your same spot for a awhile, feeling sorry for myself and whining and complaining to family and friends how sick I was “AGAIN”…I remember the day AND the turning point for me was the day the person whom I love so much said, “I can’t help you if you wont help yourself…you are strong, you are diligent and you are stubborn, you have weathered many storms and won them, quit your pity party, get off your arse and do SOMETHING to put an end to your suffering”! I have to be quite honest, at first I was humiliated…why would someone say that to me? I’m in enough pain as is and that certainly did not help.
 
As the days turned to  weeks and the weeks turned to months, I slowly began to realize that I was not being true to MYSELF. I have weathered many storms in my life so it was time to weather this one.  Some of them I won and others I “lost” (as in my husbands Brain Cancer journey and eventual death)  but I don’t call it a loss because I  fought for his dignity and pride, I fought for my kids to have some type of “normal” life in a world of Brain Tumors,  to this day I am not even sure how I pulled that one out of the hat! I look at my kids now and they are the most wonderful, compassionate fun-loving people ever…did their experience make them this way, I believe so…they lived the horrors no teenagers should have to live and yet they were able to take that situation and take the good of it and use it in their own daily lives..I Love you guys more than I could ever possibly tell you…Ok, a little off track here but it needed to be said.
 
After I was given a swift kick in the arse, I got mad and when I get mad, look out! I hit the internet and I was relentless in my search becasue I KNEW I was sick, I just couldn’t connect the dots.  I persevered and finally found the source of my health issues…mesh…Now it was time to get my Dr’s on board, not an easy quest and still to this day it is not fully agreed by the medical profession that mesh has done this to me. HOWEVER, I KNOW it has and to be true to myself meant I would have to do away with the mainstream norm of thinking, which is; if the Dr can’t find anything wrong, then there mustn’t be anything wrong! So I had to step outside of the “norm” and try a different approach, educating myself and advocating to others about the dangers of mesh. I armed myself with ridiculous amounts of information initially but it was empowering to be finding the source of my health issues.
 
 I was more motivated than ever when the same person who kicked me in the arse said to me, “I am so very proud of you for stepping up to the plate not only for yourself but for all the other suffers and victims out there, you are an inspiration to all of us”…my heart missed a few beats and it was in that moment I knew I had found my true calling life…fighting the injustice’s of mesh and a Health Industry and Corporate Industry who do not believe mesh can do this so they are still producing it…I will not give up in my quest for justice and the right to a normal healthy life as was with, pre-mesh.
 
Its not an easy task because a lot of my days are filled with pain and I still have many days that just getting off the couch is a days work done, but I have set goals and challenges for myself, simple ones and attainable ones. Some days it may simply be something like, get out of bed, shower and dry my hair, other days I may have a little more energy and those are the days I try to capitalize on bearing in mind that on my good days I usually over do it and end up on the couch for quite a few days to come. But I believe you have to be involved and keep moving to keep your mind from wandering to those very scary dark places in your mind that can overwhelm you, if you let them. DONT let them, stay focused and stimulate your mind with what you NEED to do to get back to being well again. Dont let the fears creep in…please dont misunderstand me here, I DO have those days but I fight really hard to change my focus on those days, it is very easy to fall into “victim” mode if you allow your mind to go there…you are only a “victim” if you allow yourself to be one…
 
Well, my head feels clearer now and I think I can finally sit down with a nice hot cup of tea and relax for the day feeling satisfied in the knowledge I will win the war, not just for myself but for all of you who need a little nudge here and there…
 

“Often daunted, NEVER defeated”

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Part 3…Resources for Mesh complications…

This blog is solely for mesh resources if you think you may be encountering mesh complications.

Assuming you have already been back to your Surgeon and have confirmed mesh erosion, the next steps you will need to take are reporting your mesh complications to: the FDA, Health Canada and The College of Physicians & Surgeons (if you live in Canada) to start .

The web address’ are as follows:

1) FDA: 

  www.fda.gov/medicaldevices/safety/alertsandnotices/publichealthnotifications/ucm061976.htm

2) Health Canada:

  ww.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/prof/_2010/surgical-mesh_nth-aah-eng.php

3) The College of Physicians and Surgeons:

 www.cpsbc.ca  find the Mandate and Role section and read through it…interesting read…

Some other Websites very worthy of your perusal are:

4)       www.meshmedicaldevicenewsdesk.com  look up an article by Jane Akre dated March 21, 2012 called:

           “Breaking News…J&J Sold Vaginal Mesh Implant Without FDA Approval”.

5)        www.injuryboard.com  read the article called, “Suffering in Silence from a Medical Device-Surgical Mesh

             There are FOUR parts to this article, I recommend you read ALL four!!

6)        www.topix.com  you can register to this site and post your comments

7)        www.tvt-messed-up-mesh.org.uk   this is a FANTASTIC site full of resources, highly recommend it!

8)        www.vaginalmeshhelpline.com 

9)        www.patientsafetyinstitute.ca

10)     www.pslc.com 

             this is a great site which explains what PolyPropylene is (in case you don’t already know, mesh is  from

            PolyPropylene) and why it does what it does to the body.

11)     www.rightinginjustice.com

12)     www.yourlawyer.com    TVM & Pelvic Mesh Complications & Failures

13)     http://www.teapapers.com/bladdersling/2012/05/   this is a WONDERFUL BLOG that is filled with so many 

            resources, mesh stories and personal mesh complication stories for the owner of the BLOG. She has become

            a dear friend who will help you in any way she can. She lives in the USA so has a lot more access to the many

             resources we don’t have in Canada.

14)   If you have a FACEBOOK account, there are many, many resources available to you through different  

          FACEBOOK PAGES, listed below:  I would highly advise you to go to the FACEBOOK PAGES, there is so much

          more information that I just can’t possibly put into this BLOG.

           A) Canadian Victims of Transvaginal Mesh

           B) Medical Mesh Device News Desk

           C) Fighters of Hernia and Pelvic Bladder Sling Mesh Surgery

           D) Medical Mesh Legal Support

           E) Medical Mesh Complications Survery….PLEASE TAKE THIS SURVEY!!! We are trying to compile an     

                number of Mesh Victims through this survey.  

15)    www.thepetitionsite.com   Mandate Compulsory Reporting of Surgical Implant Device Complications

16)  ww.ctv.ca/CTVNews/TopStories/20120417/transvaginal-mesh-women-lawsuit- incontinence  -120417/  

You will find a lot of information in the above WEBSITES but I would still like to urge you to simply GOOGLE

TVM, TVT-O, TVT, Bladder Sling Surgery, PolyPropylene. There is a ton of information to be found, you just need to dig in and do your research and homework. It may seem like a lot of work especially if you are not feeling well, but you are your own best advocate!!!

My last piece of advice after you have confirmed Mesh erosion is to seek legal advice. I am not able to give you any advice as to giving out any Lawyers or Doctors names (as I am in litigation myself) but GOOGLE them and you will find what you are looking for!

I will post more information as it becomes available in terms of resources and will continue with my blog from a personal stand point on my own health battles with mesh! I live one day at a time and make the most of what the day has to offer me! Life is good as long as you MAKE IT SO!

Happy “Surfing the Net” and remember, “Life is Not Measured by the Number of breaths we take, but by the Moments that take Our Breath Away”…

“Often daunted, NEVER defeated”!!!!  

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Part 2…So, you’ve decided to go with the Mesh…now what…

You’ve had your bladder sling Mesh surgery and something isn’t quite right but you can’t put your finger on it. You don’t feel right, your having some odd symptoms but you ignore the signs and try get on with life, after all, you’ve solved your bladder problem, you should be thrilled! NOT!!!

So, what things are going on that is making you think your problem is not solved and is actually a lot worse than prior to surgery, here are a list of symptoms women are coming forward with and you can find more by doing a “Google” search and simply typing in, “Transvaginal Mesh”… that will open doors that you never even knew existed! 

    Gynecology Symptoms:

Recurrent Bladder and/or kidney Infections

Recurrent pelvic organ prolapse and incontinence

Vaginal or Uterine hemorrhages’

Feeling a very obvious “lump” in and protruding from the Vagina

Always feeling like you have to urinate but you actually have to push in on your bladder to urinate

Feeling of very severe menstrual cramps all the time

Sharp stabbing pains in lower abdomen, back, down legs, ovaries, pelvic area, hips and back

Painful intercourse for you and your partner

Loss of intimacy

Vaginal odour and discharge      

   Other Symptoms:

Lots of headaches

Sore Muscles accompanied by spasms and/or twitching

Numbness or tingling in hands and toes

Swollen joints in fingers and toes

Restless legs

Dizzy Spells

Ringing in the ears

Extreme Fatigue

Poor Concentration

more colds or flue than usual accompanied by a general sense of not being well

osteo-arthritis

 

If you are experiencing symptoms of this nature, you might want to go back to your Gynecologist to discuss what is happening. The symptoms listed above are generalized and you may not have many of them or you may have A LOT of them. At this point you need to start doing your research and looking into the possibility that something is wrong.

If I can stress one thing to you it would be: KEEP A DAILY JOURNAL of your symptoms!!!! Even if it’s just a sentence or two at the end of the night to say you had a good day or you felt crappy! LOG IT!!!!

Carry a little notebook in your purse with the following information:

A list of  all of your Doctors and Specialists with phone numbers

A list of ALL medications including any vitamins, herbs or over the counter meds

A list of all illness’ previous and current

A list of any food or drug ALLERGIES

An emergency contact person(s)

If you have a Medic Alert Bracelet make sure ALL of your information is current

If you have a cell phone, make sure you program ICE (in case of emergency) into it!

Some parting last words on Part 2:

So, I have provided you with some basic information…you must be proactive in your health care, educate yourself and be prepared for the “Medical Profession” to dispute your concerns. I believe in Women’s Intuition and if your gut says something is wrong, SOMETHING is wrong! Stay true to yourself,  your beliefs and your convictions. You are the one that is going to have to do the hard work to get your voice heard!

The next chapter of my BLOG will be on the many resources available to you through the internet. I will post important FDA and Health Canada warnings regarding Mesh complications and I will also provide you with many Websites to peruse at your leisure…websites where you will meet kind, caring and compassionate people who will help you on your journey and be there for you in the still of the night when you don’t know what to do or who to turn to next. The nights are the hardest because it’s in the quiet of the night those little voices in you head start to roar loud and let fear creep into your world…STOP the voices by allowing fellow “meshies” into your life and your world and you will never look back…even when you have resolved your health issues, these people will be there for you…I love all my MESH friends, they have held my hand through many dark days and nights of self-pity and tears but have always managed to make me laugh when all I really wanted to do was cry…So through such adversity has come much strength because I finally let down my wall…

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If you are just starting your Mesh Journey, HERE IS PART ONE OF A SERIES OF MESH RESOURCES…What to ask BEFORE Surgery and Reporting problems to the FDA…

This post is dedicated solely to resources for any mesh related questions or enquiries. I will try my best to give you places to find information and connect with people who are also suffering from mesh related issues.

If you have NOT had mesh surgery yet but ARE contemplating it, please read the following FDA warning FIRST!

“FDA Safety Communication: UPDATE on Serious Complications Associated with Transvaginal Placement of Surgical Mesh for Pelvic Organ Prolapse

Date Issued: July 13, 2011 Audience:

  • Health care providers who implant surgical mesh to repair pelvic organ prolapse and/or stress urinary incontinence

  • Health care providers involved in the care of patients with surgical mesh implanted to repair pelvic organ prolapse and/or stress urinary incontinence

  • Patients who are considering or have received a surgical mesh implant to repair pelvic organ prolapse and/or stress urinary incontinence

Medical Specialties: gynaecology, urogynecology, urology, general surgery, internal medicine, family practice, emergency medicine

Device:

Surgical mesh is a medical device that is generally used to repair weakened or damaged tissue. It is made from porous absorbable or non-absorbable synthetic material or absorbable biologic material. In urogynecologic procedures, surgical mesh is permanently implanted to reinforce the weakened vaginal wall to repair pelvic organ prolapse or to support the urethra to treat urinary incontinence.

Background:

Pelvic Organ Prolapse

Pelvic organ prolapse (POP) occurs when the tissues that hold the pelvic organs in place become weak or stretched. Thirty to fifty percent of women may experience POP in their lifetime with 2 percent developing symptoms. When POP happens, the organs bulge (prolapse) into the vagina and sometimes prolapse past the vaginal opening. More than one pelvic organ can prolapse at the same time. Organs that can be involved in POP include the bladder, the uterus, the rectum, the top of the vagina (vaginal apex) after a hysterectomy, and the bowel.

Stress Urinary Incontinence

Stress urinary incontinence (SUI) is a leakage of urine during moments of physical activity, such as coughing, sneezing, laughing, or exercise.

Purpose:

On Oct. 20, 2008, the FDA issued a Public Health Notification and Additional Patient Information on serious complications associated with surgical mesh placed through the vagina (transvaginal placement) to treat POP and SUI.

Based on an updated analysis of adverse events reported to the FDA and complications described in the scientific literature, the FDA identified surgical mesh for transvaginal repair of POP as an area of continuing serious concern.

The FDA is issuing this update to inform you that serious complications associated with surgical mesh for transvaginal repair of POP are not rare. This is a change from what the FDA previously reported on Oct. 20, 2008. Furthermore, it is not clear that transvaginal POP repair with mesh is more effective than traditional non-mesh repair in all patients with POP and it may expose patients to greater risk. This Safety Communication provides updated recommendations for health care providers and patients and updates the FDA’s activities involving surgical mesh for the transvaginal repair of POP.

The FDA continues to evaluate the effects of using surgical mesh to repair SUI and will communicate these findings at a later date.

For detailed information, please see: Urogynecologic Surgical Mesh: Update on the Safety and Effectiveness of Transvaginal Placement for Pelvic Organ Prolapse.1

Summary of Problem and Scope:

In the Oct. 20, 2008 FDA Public Health Notification, the number of adverse events reported to the FDA for surgical mesh devices used to repair POP and SUI for the previous 3-year period (2005 – 2007) was “over 1,000.” Since then, from Jan. 01, 2008 through Dec. 31, 2010, the FDA received 2,874 additional reports of complications associated with surgical mesh devices used to repair POP and SUI, with 1,503 reports associated with POP repairs and 1,371 associated with SUI repairs. Although it is common for adverse event reporting to increase following an FDA safety communication, we are concerned that the number of adverse event reports remains high.

From 2008 – 2010, the most frequent complications reported to the FDA for surgical mesh devices for POP repair include mesh erosion through the vagina (also called exposure, extrusion or protrusion), pain, infection, bleeding, pain during sexual intercourse (dyspareunia), organ perforation, and urinary problems. There were also reports of recurrent prolapse, neuro-muscular problems, vaginal scarring/shrinkage, and emotional problems. Many of these complications require additional intervention, including medical or surgical treatment and hospitalization.

In order to better understand the use of surgical mesh for POP and SUI, the FDA conducted a systematic review of the published scientific literature from 1996 – 2011 to evaluate its safety and effectiveness. The review showed that transvaginal POP repair with mesh does not improve symptomatic results or quality of life over traditional non-mesh repair. The FDA continues to evaluate the literature for SUI surgeries using surgical mesh and will report about that usage at a later date.

In particular, the literature review revealed that:

  • Mesh used in transvaginal POP repair introduces risks not present in traditional non-mesh surgery for POP repair.

  • Mesh placed abdominally for POP repair appears to result in lower rates of mesh complications compared to transvaginal POP surgery with mesh.

  • There is no evidence that transvaginal repair to support the top of the vagina (apical repair) or the back wall of the vagina (posterior repair) with mesh provides any added benefit compared to traditional surgery without mesh.

  • While transvaginal surgical repair to correct weakened tissue between the bladder and vagina (anterior repair) with mesh augmentation may provide an anatomic benefit compared to traditional POP repair without mesh, this anatomic benefit may not result in better symptomatic results.

The FDA’s literature review found that erosion of mesh through the vagina is the most common and consistently reported mesh-related complication from transvaginal POP surgeries using mesh. Mesh erosion can require multiple surgeries to repair and can be debilitating for some women. In some cases, even multiple surgeries will not resolve the complication.

Mesh contraction (shrinkage) is a previously unidentified risk of transvaginal POP repair with mesh that has been reported in the published scientific literature and in adverse event reports to the FDA since the Oct. 20, 2008 FDA Public Health Notification. Reports in the literature associate mesh contraction with vaginal shortening, vaginal tightening and vaginal pain.

Both mesh erosion and mesh contraction may lead to severe pelvic pain, painful sexual intercourse or an inability to engage in sexual intercourse. Also, men may experience irritation and pain to the penis during sexual intercourse when the mesh is exposed in mesh erosion.

The complications associated with the use of surgical mesh for POP repair have not been linked to a single brand of mesh.

Recommendations for Health Care Providers:

As stated in the Oct. 20, 2008 Public Health Notification, the FDA continues to recommend that health care providers should:

  • Obtain specialized training for each mesh placement technique, and be aware of the risks of surgical mesh.

  • Be vigilant for potential adverse events from the mesh, especially erosion and infection.

  • Watch for complications associated with the tools used in transvaginal placement, especially bowel, bladder and blood vessel perforations.

  • Inform patients that implantation of surgical mesh is permanent, and that some complications associated with the implanted mesh may require additional surgery that may or may not correct the complication.

  • Inform patients about the potential for serious complications and their effect on quality of life, including pain during sexual intercourse, scarring, and narrowing of the vaginal wall in POP repair using surgical mesh.

  • Provide patients with a copy of the patient labeling from the surgical mesh manufacturer if available.

In addition, the FDA also recommends that health care providers:

  • Recognize that in most cases, POP can be treated successfully without mesh thus avoiding the risk of mesh-related complications.

  • Choose mesh surgery only after weighing the risks and benefits of surgery with mesh versus all surgical and non-surgical alternatives.

  • Consider these factors before placing surgical mesh:

    • Surgical mesh is a permanent implant that may make future surgical repair more challenging.

    • A mesh procedure may put the patient at risk for requiring additional surgery or for the development of new complications.

    • Removal of mesh due to mesh complications may involve multiple surgeries and significantly impair the patient’s quality of life. Complete removal of mesh may not be possible and may not result in complete resolution of complications, including pain.

    • Mesh placed abdominally for POP repair may result in lower rates of mesh complications compared to transvaginal POP surgery with mesh.

  • Inform the patient about the benefits and risks of non-surgical options, non-mesh surgery, surgical mesh placed abdominally and the likely success of these alternatives compared to transvaginal surgery with mesh.

  • Notify the patient if mesh will be used in her POP surgery and provide the patient with information about the specific product used.

  • Ensure that the patient understands the postoperative risks and complications of mesh surgery as well as limited long-term outcomes data.

Recommendations for Patients:

Before Surgery

Be aware of the risks associated with surgical mesh for transvaginal repair of POP. Know that having a mesh surgery may put you at risk for needing additional surgery due to mesh-related complications. In a small number of patients, repeat surgery may not resolve complications.

Ask your surgeon about all POP treatment options, including surgical repair with or without mesh and non-surgical options, and understand why your surgeon may be recommending treatment of POP with mesh.

In addition, ask your surgeon these questions before you agree to have surgery in which surgical mesh will be used:

  • Are you planning to use mesh in my surgery?

  • Why do you think I am a good candidate for surgical mesh?

  • Why is surgical mesh being chosen for my repair?

  • What are the alternatives to transvaginal surgical mesh repair for POP, including non-surgical options?

  • What are the pros and cons of using surgical mesh in my particular case? How likely is it that my repair could be successfully performed without using surgical mesh?

  • Will my partner be able to feel the surgical mesh during sexual intercourse? What if the surgical mesh erodes through my vaginal wall?

  • If surgical mesh is to be used, how often have you implanted this particular product? What results have your other patients had with this product?

  • What can I expect to feel after surgery and for how long?

  • Which specific side effects should I report to you after the surgery?

  • What if the mesh surgery doesn’t correct my problem?

  • If I develop a complication, will you treat it or will I be referred to a specialist experienced with surgical mesh complications?

  • If I have a complication related to the surgical mesh, how likely is it that the surgical mesh could be removed and what could be the consequences?

  • If a surgical mesh is to be used, is there patient information that comes with the product, and can I have a copy?

After Surgery

  • Continue with your annual and other routine check-ups and follow-up care. There is no need to take additional action if you are satisfied with your surgery and are not having complications or symptoms.

  • Notify your health care provider if you have complications or symptoms, including persistent vaginal bleeding or discharge, pelvic or groin pain or pain with sex, that last after your follow-up appointment.

  • Let your health care provider know you have surgical mesh, especially if you plan to have another surgery or other medical procedures.

  • Talk to your health care provider about any questions you may have.

If you had POP surgery, but do not know whether your surgeon used mesh, ask your health care provider at your next scheduled visit.

FDA Activities:

The FDA is working in several areas to assess and improve the safety and effectiveness of urogynecologic mesh products. The FDA will:

  • Convene the Obstetrics-Gynecology Devices Panel of the Medical Device Advisory Committee, on September 8-9, 2011.The panel will discuss and make recommendations regarding the safety and effectiveness of transvaginal surgical mesh for POP and SUI.

  • Explore regulatory solutions to answer questions about the safety and effectiveness of urogynecologic mesh products that are now being marketed and those that will be reviewed for marketing in the future.

  • Continue to monitor adverse events reported to FDA associated with surgical mesh used to repair POP and SUI, as well as assessing any and all data as it becomes available.

Reporting Problems to the FDA:

Prompt reporting of adverse events can help the FDA identify and better understand the risks associated with medical devices. If you suspect a problem with surgical mesh, we encourage you to file a voluntary report through MedWatch, the FDA Safety Information and Adverse Event Reporting program2. Health care personnel employed by facilities that are subject to the FDA’s user facility reporting requirements3 should follow the reporting procedures established by their facilities. Device manufacturers must comply with the Medical Device Reporting (MDR) regulations4.

To help us learn as much as possible about the adverse events associated with surgical mesh to repair POP and SUI, please include the following information in your reports, if available:

  • Manufacturer’s name

  • Product name (brand name)

  • Catalog number

  • Lot number

  • Size

  • Date of implant

  • Date of explant (if mesh was removed)

  • Details of the adverse event and medical and/or surgical interventions (if required)

  • Type of procedure (e.g., anterior or posterior repair, sacral colpopexy, sling procedure for SUI)

  • Surgical approach: (e.g., vaginal, abdominal, laparoscopic)

  • Reason for mesh implantation: (e.g., POP of the uterus, bladder, rectum, vaginal apex or bowel, SUI)

  • Specific postoperative symptoms experienced by the patient with time of onset and follow-up treatment

Contact Information:

If you have questions about this communication, please contact the Division of Small Manufacturers, International and Consumer Assistance (DSMICA) at DSMICA@FDA.HHS.GOV, 800-638-2041 or 301-796-7100.

This document reflects the FDA’s current analysis of available information, in keeping with our commitment to inform the public about ongoing safety reviews of medical devices.”

Another article by the FDA worth reading is:

“FDA Issues Warning About Mesh in Pelvic Prolapse Surgeries Thursday, July 14, 2011, 7:49 PM

The US Food and Drug Administration has warned that opting to place mesh through the vagina in pelvic organ prolapse surgeries could lead to serious complications in future.

In pelvic prolapse surgeries, doctors make use of surgical mesh through either the abdomen or the vagina to repair the prolapse. However FDA has said that using the mesh through the vagina could lead to a number of problems for the patient including the mesh protruding through the vaginal tissue, infection, bleeding or urinary problems.FDA’s William Maisel said that the agency is yet to see any concrete evidence that placing the mesh through the vagina improves the outcome and added that it instead exposed the patients to greater risks.

�We do not see conclusive evidence that using mesh for the transvaginal approach to pelvic organ prolapse improves clinical outcomes anymore than transvaginal procedures that do not use mesh. These devices appear to expose patients to greater risks�, he said.”

Source-Medindia  Here is the link <http://www.medindia.net/mobile/news/news.asp?id=87730>

This is PART 1 of a series of resources for Mesh Sufferer’s…Stay Tuned for much more!

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Im a big “meshie” mush today!

So here it is, late in the evening and I am just getting my first wind. It has been a really rough few days of feeling like crap, extreme fatigue, achy muscles, sore throat and headache…you name it I’ve had it. The best way to deal with this is to simply let it be and ride the wave. I don’t like doing that because I am a fighter to the end and to me riding the wave out to god only knows where is like admitting defeat, and I will NEVER let the mesh define MY LIFE.

But at this point in time, I do feel like the mesh has defined me in the fact that because of the devastating effects of the mesh, my physical being is defined by the limitations the mesh puts on me. It doesn’t define my soul as that will always be mine to define as not even mesh can take away my inner self.

The last few days have also been busy in the mesh world!! There are lots of things in the works and I will be putting together another BLOG with all the details. It is all very exciting and shows all our ( my fellow mesh friends) committment to advocating and educating men and women of the inherent dangers of mesh if you fall into the unfortunate group of people who are finding out that their bodies are rejecting the polypropylene mesh.

Stay Tuned!!! There is lots more to come!

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I maybe more meshed up then ever but I am also more determined than ever to fight…

I write today from the deepest darkest place in my heart, sharing with you  my most intimate thoughts of my life as a ‘meshie’.

Being a part of this elite group of wonderful people does not come lightly or with a low price tag, in fact it’s quite the opposite, you pay the highest price you will ever pay for something in your entire life, and the price is, your dignity, your pride, your relationships and your heart. You will share every aspect of your life with these people and yet the thing is, you would never want to be without them and ABLE to share, because these are the warriors I have now come to love and understand.

I always thought growing up as a young woman, my life would be a symbiotic event in which everything would fall into place as most of my other friends lives were. However mine had taken a drastic veer off course. I have also always believed that my life took this turn for me to learn and grow from it and to use it with purpose,  I didn’t know how or what I was supposed to do with this divine knowledge I had come to trust, but I knew at some point I would learn of it.

A lot of significant events have taken place in my life which I believe have shaped and molded me into the person I am today…a woman who will fight for justice in a situation in which there seems to be NO JUSTICE and that is the path of Transvaginal Mesh.

At present I am incensed, I  have had two events happen to me between yesterday and today that have shaken me to the very core. I believe I have had my first “Specialist” treat me with disdain…I felt sure he just wanted to tell me to get out of his office. He was abrasive and dismissive with my health concerns, which by the way is NOT Mesh related! I was almost humiliated by the experience but the “old” fighting Diane crept up and gave me a kick in the ass to not lay down and take this lightly. I will follow the issue up once I have pulled myself together and am not so damn angry.

The other event just happened and once again I am left sitting here scratching my head wondering WTF! My own Dentist refused to treat me last year due to my extensive health conditions and basically dismissed me as a patient. I thought I had found a new one until I received a phone call today stating “The Dentist is unable to see you as they don’t believe in “blanket” fixes”…my request was to simply make me pain-free until I can have the extensive work I require, done. When I pulled myself together I asked the receptionist flat-out, “Is it because of my health issues” and finally the truth, “yes”…WOW, that hurts…

I guess the most annoying part of this whole damn mesh deal is that I have been denied CPP disability because my condition is not “prolonged”! I am now having to fight my case in front of a Tribunal Hearing. Ok, lets run through this, I left my job due to health problems, a 30 year job I might add, Doctors have dismissed me, my dentist has dismissed me and now the Dentist I was hoping to take over has also dismissed me. My health is rapidly declining and my social circle is slowly closing in to a very select few people.

I am unable to walk for any length of time, I am unable to do the basic tasks in life-like taking a bath because I can’t get in and out of the tub on my own, grocery shopping is another nightmare because I can’t lift a number of items off the shelf if they are heavy, going for walks is out, looking after my grandchild is out, sitting in an upright position is damn right painful so I spend a lot of my days on my reclining couch so as not to disturb the mesh tentacles protruding into my organs and my vaginal opening, isn’t that a visual you never wanted to envision.

I spend hour upon hour every day researching the best surgeons for mesh removal, which I have already been told will not be TOTAL, which is less than ideal for a complete recovery. I spend hours talking with women who are just starting out with their mesh journey, I cry with them and then try to give them hope. I preach to them, “we must never lose hope” and yet day by day as I see my life as I knew it slipping  away, I am the one loosing hope.

I am now in the midst of a battle with CPP, one more battle I don’t have the strength to fight but rest assured, I will NOT GIVE UP! I believe in the depths of my soul I will fight them because guess what, I AM UNABLE TO WORK! I can barely function in day-to-day tasks let alone having to go outside of my home and work! It’s not that I don’t want to work, I DO, I enjoyed being a contributing member of society and am sad I am not able to do that any longer.

What infuriates the hell out of me is it was our own Government who did not warn me of the dangers of mesh, all the while they knew it was dangerous because they publicly issued a warning through Health Canada, and yet when I am implanted with said device and encounter numerous illness’, too many to list, it is our very same Government who is saying, “No, we will not support you in your efforts to secure CPP Disability”!

 Can someone please explain to me what I am missing here!!! I just don’t get it! Is it me or is it a badly abused system that is now fighting back? I agree the system is abused but you know what, why doesn’t the Government review some of the people on CPP for the past 20 years and see if they are still disabled or could return to work in some capacity? I feel like I am being chastised for even applying for CPP!!! Do I not have rights? How much of my life do I have to validate and justify to prove to the “system” I am unable to work? God knows I have put enough of my intimate details out there already for public scrutiny! End of rant!

However, today I feel validated and empowered to keep fighting, to keep educating and to keep advocating the dangers of mesh but most of all  to keep the faith that one day all the fighting , educating and advocating will pay off in that mesh will be a thing of the past. I will also implore this in my quest for justice with CPP Disability.

“I am STRONG because I am weak…I am BEAUTIFUl because I know my flaws…I am a LOVER because I am a fighter…I am FEARLESS because I’ve been afraid…I am WISE because I’ve been foolish…and I LAUGH because I have known sadness”

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