The Truth about Partial Mesh Removal

The last post I wrote I titled The Truth about Mesh, because I read so many myths and non truths about the issues with bladder sling mesh and it bothers me tremendously. They say ‘without truth there is no justice’. However, those of us who are mesh injured, do wonder if justice will ever prevail. Justice to us means these products will no longer injure women.

Now I am tackling partial mesh removal. Not just my own opinion but the opinions of the thousands of women who have had partial removal surgeries and are still suffering the many issues they still deal with, having mesh left in the body. They write to me, leave comments here and they want you to know the truth. Removing part of the implant ‘may’ alleviate symptoms for a period of time for SOME women, but IF it does it will only be a temporary band aid. To understand why, you have to break things down into common sense.

First I want you to know the truth about my own situation. I had a partial removal nine weeks after the sling was implanted in my body. However, I had no clue I had had one until Dr. Raz told me, after he removed the rest of the bladder sling mesh on October 11th 2012. This is how ignorant I was of my own situation. I knew I had had a second surgery because I could not pee on my own for those entire nine weeks. I was desperate. All I could think of was “please let my bladder work again”. Nine weeks of a catheter and infections and I was scared stiff. I was afraid that I would use an internal catheter the rest of my life. When I came to after that second surgery, I asked my surgeon if she had removed the sling? Her face was like a deer caught in headlights and I will never forget the answer. “No, it is not possible to remove it”. I was shocked. Why wasn’t I told that BEFORE it was put inside me. Why was I not given a pamphlet and had a complete explanation in her office before a surgery date was set. I now know I will never get that answer, so I work hard to try to make it happen for new women who seek medical help.

So the gist of my story is this. Dr. Raz walked into my room after I was awake and alert, holding a jar with my mesh in it and he explained to me what he had to do to remove it from my body. I will forever be grateful for this man’s expertise, because it was entwined in my nerves and muscles. Had I gone to another removal doctor I could very well be living in extreme agony the rest of my life, because I know other women who do just that. Not all surgeons are this good at their jobs. But I digress. Dr. Raz told me that he got it all but the piece that had been removed from the center. He showed me the two parts and explained. This was my first encounter with the truth. He told me at that time how much was removed. They know this because it must be measured and recorded when it is taken out of your body. So I knew then that I had had a partial removal in the past.

So why is removing part of it NOT a good idea? Well, while helping so many women who tell me their stories of hell after implant, I have researched Patent information. What I read was shocking. They are NOT supposed to be cut or stretched
after implant. So what is a doctor supposed to do when there are issues? Well apparently there are no explanations. That is a terrible fault of the mesh implant systems.

To understand why it is NOT a good idea to remove part of a sling, you have to break it down into common sense. Layman’s terms if you like. As I have told you before I have no medical knowledge or medical training. What I do have is a good logical mind. I am a designer. A creative person. That makes my mind work by putting puzzle pieces together. If something does not fit, I take it apart until I understand why it doesn’t fit. I like everyone during my younger years, did study human anatomy. However, I quickly discovered I did not like blood and gore. I admire those who are, but I was not a candidate for a nursing career. That is why I tackle my own issues from a logical point of view. I ask questions. I study the answers. I then make a decision on how to tackle my own issue. That common sense did nothing for me when I tried to tackle the biggest medical problem in my life because the information was not out there for me to read and understand when this implant was put into my body.

So here is the thing. We all know the human body is made up of 60% of water. Then there is all the other stuff that takes up the rest of the space. Our intestinal and reproductive tracks, like the rest of our anatomy are amazing and work very efficiently unless it is messed with. So inside us is a whole bunch of squishy stuff that is constantly moving while it does its job. We eat, it goes down, round and round and out the other end. Simple terms, but amazing how it gets there at the end. So when you wrap mesh around something it will go astray UNLESS you anchor it, right? To understand where I am going with this, you must understand that the early slings were NOT anchored. I never understood any of this until women began contacting me and to try to help them with their pain I had to understand what brand of mesh was in them and how it worked.

Now this is where I need to stop and give you a link I just discovered this morning. What I did to understand a brand or type of mesh sling, I put into Google that name and added ‘patent information’ on the end. I had to dig through piles of people who wanted to make money from women’s suffering and a pile of links with information that were scholarly written medical papers, until I found what I needed. How a sling was anchored and if it was anchored. Then I passed this information along to the woman who needed to understand how her sling worked before she had mesh removal. Most doctors will tell you that the arms/anchors are impossible to remove. That is IF you ask them outright if they can do this. If you do not, you will assume he/she knows what they are doing and leave it up to them. That can be disastrous for your body. So to give you an example here this morning, I put into Google ‘bladder sling patent. I hit the BIG TIME LINK which shocked me and I am giving it to you so that you can read up on your sling type.

http://www.google.com/patents/US6110101

I do not know if this link has all the patents on bladder slings but the shock is that there are so many from MARCH 21ST 1958 to JULY 12TH 2012. Why is this so important you ask? Because it explains the logic I am sharing with you. There are only a few medical mesh manufacturers. (AMS and American Medical Systems are the same company) What makes you understand the reason for your serious illness is in these links.

So here is the logic. Everything has to be designed and there are two ways designers work. Some sketch the design while others, like me envision a design. Then that design has to be worked out in reality and has to be tested. If it does not work properly or there are issues, there has to be adjustments to fit right? Now here is where we all became guinea pigs. Slings cannot be tested outside our bodies, so they use us to experiment how to adjust and make a sling work better. Terrible right? Not only that but as a designer I work under the principal that there is no such thing as one size fits all. How could there be when the outside of our bodies can be a size 0 to …………….. So how can they make a ‘one size fits all’ bladder sling?

And here is the rest of the logic. The original slings did not have anchors. I never understood any of this until I looked into the various types that women sent to me. The logic was that the mesh would stick to a bladder and hold itself in place. HOWEVER! The reality is that mesh moves. It shrinks. It curls and rolls up. As the mechanisms of our body do the work that needs doing, the mesh does not stay in place. It slowly migrates to other organs, bones and anything it can find to stick to. That is why so many women are so screwed up over time. Not only can mesh erode but it can cause extensive damage wherever it decides to attach itself.

So the designers adjusted the slings, added anchors and more patents and tested it all over again, inside YOU.

So with arm/s anchors there came about a new logic. A sling had to stay where it was designed to go. However, when you read up you may be shocked to find out how barbaric some of those anchors were/are. Screws to hold into your pelvic bones. What are screws made of? How does that material react inside the human body? And then there were more adjustments and patents. And once again women were the test subjects.

If you are now riled up and angry then you know how I have felt so many times during these two years of trying to help women in pain. Shock and anger are key factors as to why I keep doing this.

So now you ask why NOT have a partial removal. Because once mesh is cut and is partially removes, you are at serious risk. Your doctor won’t care where it winds up. He/she will not feel the terrible agony as it travels and sticks itself to something that will cause you serious injury. Spine, nerves, muscles and a whole bunch more. Not only that but you may think the anchors will stay in place because they are embedded in you pelvic bone. Not always. A woman in Florida has seven scars where her surgeon had to dig to trace the last surviving anchor because it had migrated. She never got well after the first surgery where he had removed the mesh and told her he could not get to one anchor so she went back for a second surgery and he finally found it after digging around plus he found mesh he missed. It had migrated. She had had partial mesh removals before this surgeon tackled her issues and she remained ill. This makes a perfect logical reason why a doctor needs to use and understand how a translabial ultrasound works.

So what about partial removal for erosion. This really makes me sick. Surgeons trim off the bits that stick through the wall of the bladder, vagina, urethra and anything else it erodes through. Including the colon! For some women the ‘sticking into them like knives’ issue is relieved for a short time. But the problem is it does not stop the mesh from continuing the erosion. By the time a woman gets to Dr. Raz he has to work through all that scar tissue that has built up from many partial removal surgeries. Scar tissue that blocks those small pathways where we relieve ourselves of urine and waste. Then it affects everything. Kidneys can deteriorate. Waste going out into our bodies can poison us leading to all kinds of immune issues. And the list of complications goes on……..

Not only are you at risk when a mesh section is set free but tiny pieces can be broken off because over time mesh becomes brittle. Where do those pieces go? EVERYWHERE! Then those tiny pieces can attach themselves to other tissues and organs and cause havoc.

So now you know what I know and why I stress go to the right doctor BEFORE you have any surgery if you are having complications. If you want to have a partial mesh removal after you read this, I am not going to beat you over the head with a big stick. It is your choice to do as you wish to your body. But at least you now have the truth! That is all I care about.

Once again here is a link to take you to doctors who do know what they are doing. http://meshangels.com/2012/08/so-much-hope-for-mesh-removal-surgery

 

 

 

13 Comments

  1. nadineb

    I was told there where anchors bone drilling and a sturdy product that would cese the suffering of peeing on myself and stop my bladder from falling and at the same time fix my rectum which had fallen out so far it was very very bad. He however forgot to remove the IUD i had and inserted a Mesh tvt sling without telling of warnings because he thinks and for all he knows it was 1100% safe. 3 weeks later he revised telling me i must wait that long to fix a bladder issue where it had basicly died on me and that the bones had to completely and utterly become part of the anchors before he could do the revision where he also fixed a tear in my anus causing diarea to come out my vagina along with blood in my cathitor. After the revision, he then decided to remove and when i asked how many he had done he would not say till the end and the number was 15 including mine. this doctor i still trusted and let do a surgery where he told me the anchors never where in my bones but wrapped arounded them. A lie from what he said before the second surgery so he did the third only two weeks after the second and removed the anchors only which where 4cm and 2cm on one side and the other then dug for the rest around and through my vagina and utterous finding none closed me up and said to me after he had removed it all but surgical reports show a diffrent story for all he had done and the same for many of us. These doctors are being peedled products and told how to us them and then destroying us never once admitting it is mesh that causes our suffering. In 6 months I have endured so much pain and agony I can not yet fathom it from the destruction of my bladder to the loss of my son in court and now two herniated disks and anal fissures causeing my intestines to fail and my stomach as well along with something jammed in my urithra causing jults of pain when i guess to use the potty and cath myself and now i can not even poop either. this story of mine is horrific and so much more than this is wrong but I will not say all. My point is look before you leap read everything before it goes in you and do not use mesh in any form shape or way it destroys your body your soul your heart your life your family and everything you have.

    Reply
    1. lavalinda

      Thank you. Yes I know how much this has destroyed your life and a petition does not change anything because they are ignored. You speaking here will change more than any petition and I applaud you for that.

      Reply
  2. nadine

    Than you and you are right speaking here says things to others and hopefully helps them even if it doesnt help me.

    Reply
  3. Alice

    I also am trying to survive after mesh surgery , one week after the hysterectomy and / bladder sling surgery I knew something was horribly wrong but was told no its just the hysterectomy I could actually feel my body pushing something out , still was told no its fine I repeatedly ask my Dr could it be mesh he replied no we don’t use mesh ordinal surgery was August 2011 by Nov I was having bladder sling erosion surgery clipped off excess pieces that had eroded through given pain meds and sent on my way approximately two wks later it had came through again was told to go hospital for pain management then was told sorry nothing can be done cannot come out been in to long !!! Needless to say my husband would not except that he started making phone calls took me to Cleveland Clinic was seen there and was told it had been put in wrong !!!! Went back one month later to have it removed , after surgery Dr told my husband there was a piece that could never come out because it had adhered to something , never stating what ,but I would or should be fine well its been a yr since that surgery am I am constantly on antibiotics for infections chronic pain extreme pressure in my rectum and vagina I no longer have insurance so what am i to do ? Just wait to die ?

    Reply
    1. lavalinda

      I am so sorry this has happened to you and I feel so awful. I am going to suggest you join a support group and I will email you. I don’t know when you can get insurance again but hopefull next year. Then please go out to see Dr. Raz. My heart goes out to you.

      Reply
  4. peggy

    I had a partial mesh removal some of it was left in but things did not show up right away but now I am having all kinds of immune issues wondering if sores on my legs could be from the mesh .Has anyone else had this problem They said it was porriassis but have no history now wondering if it could be one of the side affects Took me a year a year to be diagnosed and now have scars on my legs .went on humira to heal them but now i wonder if anyone else has had that happen

    Reply
    1. lavalinda

      Peggy many women have sent me photos of sores on legs and other areas and the mesh remaining is attacking your immune system. The only place I know who is diagnosing these disorders is at UCLA. My advice is make an appointment to see Dr. Raz, Dr. Kim or Dr. Rodriguez. You need the translabial ultrasound done out there to see where the mesh is. Once part has been removed, it can move around.

      Reply
  5. Theresa

    I wish I had read this article a few weeks ago because I just had a partial sling removal. The sling had eroded into my vaginal wall making sex impossible. This was my fourth surgery. I’m only 8 days out from the last one and I’m having problems already. Just started bleeding again and I think I have another infection. I got an infection right after the surgery because they forgot to give me my pre-surgery antibiotics.
    Also, I guess they must have anchored my sling to my pubic bone because I have been in pain in that area since my sling first was placed in 2004. I asked for them to remove it, but the doctor said there was a high risk of cutting a small nerve in that area which would leave the outside of my labias completely numb! I’m so pissed. My first surgeon NEVER went over any potential risks. Now I’m worried this thing will travel! I will be discussing this with him on my post-op visit. Any suggestions as to other question I should ask him would be greatly appreciated. Thank you so much!

    Reply
    1. lavalinda

      Theresa if you can get out to UCLA and see Dr. Raz it will be the best thing you ever did. Make an appointment now because it will take awhile to get in, and your body cannot handle another surgery for awhile. These blogs may help you get the answers you need. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
  6. beth

    i soooo wish i knew this back in JULY 2013….but i had no idea, about you or mesh complications! i thought the urologist was removing a bladder stone emergency surgery. makes my blood boil! I am having such a terrible painful day.. both sides are hurting so bad, my groin, my back. i have this pulling/grinding feeling. oh its so bad today. I’m so lonely. so miserable today.. my husband is mowing our yard.. that was my job, i love mowing, weed eating. i can’t do a damn thing.

    thank you linda… you have helped so many women, and men. You help me everyday… One day I’m gonna try my best to help you.. i hope you and your daughter are having a good saturday.

    Reply
    1. lavalinda

      Beth kidney stones and crystals are caused by urine retention. I know how hard it is but you don’t have long to go now. Please check out this blog and order some things to help you. You will have to stop taking these 2 weeks before surgery, but I took marshmallow root up until a week before. But as soon as surgery is over and you are at the hotel take them again. http://meshangelnetwork.com/2013/05/mesh-my-triple-three/

      Reply
  7. heather

    Hello i recently had hernia operation and found out after it was repaired with mess. I had this done jan 27 and ever since then havevhad severe pain on right ab they thought was appendix but nope now they dont knw what it is and it makez me angry thry do nothing for pain as they tell me we dont know how to treat your pain so we cant cause we dont know why you hurt. Not sure if this is samr mesh but i was told on scans that i have curled edges on mesh and liquid bubble under it. Also since this my blood work is comong back as liver failure. Not sure what to do anymore! Thankvyou for sharing.

    Reply
    1. lavalinda

      Heather mesh is mesh, it is just manufactured and sold by different companies. Please look at the link at the top of this blog called doctors and hopefully one of the hernia doctors can help you. I am truly sorry for all you are going through.

      Reply

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