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.
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