Mesh Removal Who to Choose
I truly did not expect to be writing a new blog on this subject, but I now know I cannot put it off or women will be fighting when they should be supportive of others who are mesh injured. So I am once again taking time out of my day to try to help women sort out their own feelings and to make sure whoever they choose to do their surgery is THEIR choice.
Because the mesh injured count has been rising over time, there are also more support groups everywhere. They can be excellent for those who are bedridden because of mesh and cannot get out of the house. Loneliness can also induce depression and it is good to have others like you to reach out to. Because of this, many women have formed lifelong friendships because they have mesh in common. So there is a great deal of good that comes from the support of others.
However, not all is good. There is also pressure on sick women to follow those who say a doctor is great whether or not they have made a decision to go to him/her. So this is why I am addressing this issue. You may wonder how I know what is going on when I do not go to any support groups any longer. Well, I know hundreds of mesh injured women and I have met many face to face, either at UCLA or locally. Many of us have formed comfortable friendships and can say whatever we want to each other. So when women are telling me personally about what is going on, on these support groups I try first to deflect so that they can stay on the track of their own health, and also I advise them that if they are getting in arguments on these groups, then the best way to handle it is to break away from them.
I just had a conversation with a mesh injured woman in the last day or two. We are all stronger because of our mesh injuries. Not stronger health wise, but to move forward in life and try to improve our health, we often have had to do battle with local doctors, family and partners to go where we need to go to have our mesh removed with the best outcome possible.
So here’s the deal. I have not lied to you that I am still mesh injured even after mesh removal. I am. I have told you that nine weeks after the mesh sling was put into my body it was cut in the center during a second surgery. At the time I thought it was being removed and was devastated when I found out it was still in me. Then because I was out of money and had no health insurance, I turned to writing this blog. What did I learn? Well you could ask what I didn’t learn. But it did not happen overnight. I did what few women would ever think of doing. I picked up the phone to listen to hundreds of women over a two year period before my own mesh was removed. At first I did it all alone, but then other women wanted to help and pay back the fact that they got their lives back again, and they began helping me. When you listen to other women you have to be open minded to learn and sympathize. You have to realize life is not all about you and give up many hours, days, months and years out of your own life. And you have to do it without pay or your own ego wanting to become famous for doing it. In other words you have to really care about others in the world.
By doing all this the rewards are that you also learn all the pros and cons of the quagmire of mesh removal which means you try hard to sidestep those yourself. And it is because of all this, that I am truly grateful to so many women who did not just take, they gave of themselves.
During the time I was speaking to so many women I was given a short list of other doctors who it was thought at the time, could remove the mesh out of women’s bodies. This list came from UCLA and I assumed these doctors had to b e as amazing as the doctors of that University. I was quite excited to be able to pass the list on to others but I did warn the women that I knew nothing of these doctors and I asked if they would stay in contact with me if they chose to use any of them. Some women thought it could be very important so they did just that. They went through surgery and reported back to me. They waited many months and then reported back to me again. I was taking a poll so that as few women as possible would not be injured further than they already were. All that time I worried about it because I did not be responsible for the deterioration of other women.
During that time I learned that the partial removal I had had so early after the mesh was placed into my body was also causing me more issues. The cut apart mesh was moving and it began attaching itself to my nerves and muscles. Not only was this happening to me, but it had happened to so many other women who did not have the money or insurance to go out to UCLA, or their family did not want them to go, believing that all doctors were equal. By listening to other women it sadly became apparent that they were not.
So ever so slowly I realized I had to make the financial sacrifices needed to go out to UCLA the second my Medicare kicked in so I sold my car. Five days after Medicare began I was in Dr. Raz’s office. It was there I learned that I had femoral nerve damage, but I had hoped that once it was removed from my body, my nerve damage would heal. I now know that often nerve damage is permanent. However, I still feel hopeful that over time it will diminish. First let me reiterate that I had the BEST doctor in the world to remove my mesh. He has the most experience of a lifetime devoted to helping others. He does not have a giant ego so you won’t see video interviews of him boasting about his achievements all over the Internet. In fact he does not have time because he is in surgery trying to help as many women as possible, even though he is well past retirement age. You should also know that he will be at your bedside more often than any other surgeon in the world, after he has removed it. I would describe him as being a mother can, making sure her delivered kittens are okay. So many families have told me they were amazed at how much he cares, so this is not just my opinion.
Of course now over time there must be more doctors who have jumped on the mesh removal bandwagon, and I am sure some are extremely good. So how can you decide who to choose? What guidelines can you go by? Well to begin with look to the right and you will see a blog I wrote a long time ago with the help of women who had already had their mesh removed. I had not at that time had mine removed and I have learned that experience is the only way you can possibly understand. This is why all the college creative writing classes will tell the students “Write about what you know”. Over time I learned firsthand and then could write my own experiences.
Other than asking these questions, here are some other things you need to watch for. If a doctor’s ego is so large he/she believes that they are God, then step away. Just because they have the most amazing bedside manner does not make them a great doctor. To give you an idea of what I mean, many people can be charismatic, but they may not have the skills. A HUGE problem for me is if they still put mesh in women. If you don’t care and aren’t afraid to risk more mesh being put into your body if your chosen doctor still does it, then that is your choice, no one else’s. I personally cannot go near a doctor who still believes mesh is great. Another thing. Not many people in this world can stand alone. By this I mean peer pressure. Can your doctor stand up to the mesh manufacturers and their colleagues and still continue with their practice. Many can’t. It’s not easy to be the lone wolf and many people want to follow the norm.
Now that brings me to mesh injured women. You were lied to and wound up in a huge mess because of mesh. Most doctors refuse to admit mesh is a giant problem even though the injured count keeps rising. The warnings are out there by the FDA and yet they refuse to admit the facts, learn and tell women the truth. If they do it could mean they will lose their place in the hospital they work in, so I understand. But; to know this stuff injures severely and still do it, is outrageous to me. This is where their sworn ethics come in and yet many knowingly avoid the truth.
So if you have done your homework and made a decision you can live with, please understand that you are an adult and deserve the freedom of choice regardless of what others say. This is YOUR life, not theirs. So whoever you choose, go with it and then adjust accordingly. Please also understand you may not know the true outcome for at least a year. Base your choice upon your own mesh injury. How long it has been in your body. The damage it has caused you. Nerve injuries because it takes skill to hand pick it out of nerves and muscles and not do further damage. Do you have kidney or other organ damage? Is the mesh wrapped around your colon? To do the best for your future you must learn as much as possible and watch for signs from your own body. No one can do it for you. This is YOUR life we are talking about.
If you have done all the research and feel confident that you have chosen the best for your own situation, then do not second guess yourself because of others opinions. No one can be 100% certain of their choice but if you spend all your time doubting your decision, then understand you are doing yourself an injustice. You need all the energy you can get to go through with the surgery and the healing process.
Please, please do not go to support groups and begin infighting among other mesh injured women because you feel your decision is the right one for every women. There are enough right fighters in the world as it is. It can often be misconstrued as bullying if you try to force others to bow down to your opinion. Stay off these groups if you find yourself doing this because it is unfair to others. If you find yourself being bullied in this manner, walk away from these groups. That is NOT what support is all about.
Please, please do not bash doctors who are trying to help women. I know this has happened about Dr. Raz on these groups, but the great thing about this man is he may be of small stature, but he has broad shoulders and can handle it. However, you are making other women doubt their decisions if they choose to go to him. So button up those lips and leave the keyboard if you find yourself getting into it.
Support means you are there to listen and help others. If you find yourself being defensive, it is not helping you either. Use your energy to move past it and become a new and better woman. I know how hard it is believe me, which is why I no longer go to any of these support groups. But it does not mean I no longer support mesh injured women. I do, which is why I have taken the time to write this blog. I hopes this helps many of you who are now concerned over your decision about the doctor you have chosen. Never forget that this is YOUR life and no one else’s.
Update. For new information click here. http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/