Mesh Complication Education
The object of this blog is to give you the right questions to ask your doctor and know what test can reveal the mesh in your body and which organs it has attached itself to. Without this information we are at risk of doctors who lie and leave us with pain and anguish. I thank all the women who have helped educate me and I share their combined knowledge with you.
Next month will be two years since I had this ill fated surgery, that sent me into a life of hell. I am not alone. Thousands of women suffer as I do, far more than the FDA knows. So to help myself and help others, soon after this surgery, I began digging on the Internet. It wasn’t easy. Two years ago I found nothing except that the ‘offending mesh’ had been removed after a lawsuit in 2008. Bad mesh gone right? Sadly know. Those of us who suffer every day, know that all mesh is bad for a large population of the people whose bodies it was placed inside. It wouldn’t be so bad, but not one women who lives in pain and has contacted me, ever knew they had an ‘implant’ in their bodies until the complications began. Me included.
The complications from mesh are so many and so varied. Our bodies are not one size fits all and neither are our complications. How our body reacts to mesh is no different than how we react to various prescription drugs. The problem is, these reactions are not easily seeable. Therefore our doctors stare at us when we tell them of our pain and dismiss us. We are the problem. It’s all in our heads.
It is not in my head and neither is it in yours. Time to get educated so that you can ask the right questions and let your doctor know that you are not stupid and do not deserve to be put down when you question him or her.
This blog today came about when one lady who contacted me late last year, called me last night to let me know of a second opinion update. When she called me last year, she told me she had had mesh removal and was doing well. As we talked, something didn’t seem quite right. I asked her was she sure she had full mesh removal included the arms. They are also called anchors. She said she had great faith in this man because she had been seeing him for thirty years and trusted him completely. I of course had heard many stories from women devastated over the broken trust of their long time doctors, so I trod very carefully, just telling her that she needed to ask him the right questions the next time she saw him. Lo and behold she did! When she questioned him about the ‘arm’s she noticed a change in his body language. He was angry that she dared question his ability. This brave lady insisted. Before he left the examining room, he said that there may be the arms left in her.
This very brave and determined woman called me the next night and told me. For the sake of her future I suggested she go to see one of the doctors on my list. Fortunately she lived one and a half hours drive from one of them and she quickly made an appointment. This doctor knew how to examine her and after she told him her story, he suggested he run tests. This man had been trained by the best doctor in this country and when she mentioned his name, he was impressed that she had done her homework. (This is a good sign)
She went for the tests yesterday and last night called me to give me the results. Her long term relationship with her doctor is now no more and she is saddened that she cannot trust him again because he lied to her. The test she was given revealed that her doctor removed a tiny portion of the mesh and left the rest and the anchors. Why did he leave it in her? More than likely he did not know what he was doing and without training and expertise, the wrong doctor can kill and maim when ‘practicing’ removal. Why did he lie to her? Only he can answer that question. I do know this. We, you and me cannot trust blindly. We have to get educated.
When this lady talked, she mentioned the name of the test she took and that he had given her the disk showing her that the mesh was there. Good doctor! He also told her that he couldn’t promise her that every piece would be removed until he did the surgery, but he thought that it could be. Good doctor! Never promise. Never put yourself on a pedestal.
So what do you need to know? I knew that the best doctor in the country used a test to ‘see’ the mesh, where it is, what problems it caused and it guides him to doing the best job he can do when removing it. I did not know the name of the test until last night, thanks to this lady. With a name at last, I researched the test and found out that it is normally used for pregnancy complications. I read several articles and finally stumbled upon this one written by the foremost removal surgeon in the country. I will include the full link at the end, but have copied two paragraphs for you to read that are very important. With this new knowledge you can go back to your doctor and demand the right test to see what is going on. Or better still go to a trained removal doctor and ask the right questions. You need to know that all the mesh is removed, or if it isn’t, you need the truth. Why is this so important? Because your symptoms may leave with partial removal and you feel better for awhile and then the symptoms begin again. If you think it is all out of you but it isn’t, then you may not understand that the culprit is the remaining mesh. This can lead to you being misdiagnosed with immune disorders and other diseases that you don’t have, but worse yet be on a drug treatment that could lead to kidney and liver disease. To me it is unscrupulous of any doctor to not tell you the truth about what he/she did or didn’t remove. It is your body. You have to know!
Before I end this blog, if you need a doctor, send me an email. I will do my best to help you. The following is an explanation of the machine/test that can see the mesh in your body. All other tests cannot see it and what it is doing to you inside your body.
Use of Translabial Ultrasound
The use of translabial ultrasound increasingly has become a helpful tool for diagnosis and preoperative planning of mesh complications . Mesh is not detectable with X-ray or CT. Ultrasound is superior to MRI in detecting mesh implants. Translabial ultrasound can confirm the presence and location of residual synthetic graft material (see Fig. 2a and andb).b). The technique involves patients in supine position with knees flexed or in lithotomy, with the bladder moderately filled. Coronal, sagittal, and axial views are obtained with the 5–9 MHz-translabial, curvilinear (Philips IU22; Philips Healthcare, Andover, MA) transducer placed on the perineum near the introitus. A dynamic evaluation is obtained with Cine image (real-time graphics on cine playback) in the resting state, squeeze, valsalva, kegel, and cough. Translabial ultrasound can assess the structure of mesh and helps to correlate clinical findings. It does not help to diagnose vaginal, bladder, or urethral erosion. Further studies on evaluating the clinical use of translabial ultrasound imaging are needed.
This is another paragraph about mesh use and it’s complications.
The use of Mesh for prolapse-Complications
The surgical treatment of pelvic organ prolapse from a vaginal approach experienced a surge in the use of graft materials. The use of mesh in vaginal prolapse surgery stems from a desire for improved anatomic outcomes. Interestingly, vaginal mesh kits for prolapse repair were given US Food and Drug Administration (FDA) 510(k) premarket approval by demonstrating “equivalency” to existing devices. Mesh augmented prolapse surgery demonstrates better anatomic results but has a higher risk of complications (0%–23%) [26••, 27]. However, complications from vaginally placed mesh are likely underreported. The full range of complications is also difficult to quantify. Using the Clavien-Dindo Classification system , mesh complications that require a subsequent procedure under anesthesia falls under class IIIb. However, the degree of bother and impact on quality of life after a complication of vaginally placed mesh is difficult to fully evaluate. Mesh complications range from minor to major, and can include vaginal wall exposure, bladder and urethral mesh erosion, vaginal pain, vaginal wall induration, dyspareunia, leg pain, difficulty walking, and temporary or permanent neuropathy. Age-related changes of the vagina contribute to the development of these complications over time. An additional criticism of most mesh prolapse kits is that some do not correct vault prolapse.
This is the full article.