Mother’s Day 2015

Before I post this blog I received the best Mother’s Day gift ever. A phone call from an eighty two year old woman who contacted me some time back because she had been dealing with a lot of pain. The mesh had been in her body for seven years and everyday things were deteriorating. I took time to speak to her over the phone as I needed to know enough to help her through it and I was extremely concerned about her age as this surgery is rough. I asked about her bowel and yes it had affected that too. So I told her that it was a huge difficult decision to make but her best chance at saving her life was to go out to UCLA and Dr. Raz. Honestly I know someone her age is at huge risk for a surgery like this, but without it I also know she would have deteriorated down to nothing and wind up dying a very painful death.

I did not hear from her until a few weeks ago when she called again to tell me she was heading out there for surgery. She had already had a consult with him and the date was set and had at last arrived. Her surgery was on the 13th of last month and she said after she was home and doing better she would call again. Two days ago I began thinking about her and wanted to know she was okay. So I called and left a message.

You cannot imagine what it is like to be me. I hear all the bad stuff of what goes on in the medical field and hearing good stuff is so refreshing. So yesterday when the phone rang and it was her on the other end, I was thrilled. Thrilled because I knew her surgery was going to be very hard. She told me she had been in a nursing facility after flying back from surgery but was going home this coming Wednesday. She told me Dr. Raz got it all out and said it was wrapped around many areas where it shouldn’t be and that is why she was living in so much pain. Less than one month later she can walk again although it will take up to six months for the healing is finished. She also said she was in hospital four days and never needed a transfusion and they cared well for her. What a testament to the skills of a man who really cares about women’s health. Once again thank you Dr. Raz.

To hear the voice of this woman was such a thrill for me and made my day. She is no longer on any medication and is so glad she went to him. So ladies, stay as healthy as possible and take a lot of supplements because everything you do can get you through the waiting time and get you back on the road to a better life. Not the same one you had but a better one than while mesh is in your body.

Today is Mother’s Day and two days ago I posted a blog called Children of Mesh. I wrote that blog because I wanted to give younger children a voice to tell the world what it is like to have a mother injured by mesh. Jacob lives with his mother in England and is ten years old and at age seven his world changed and so did his mothers. I will give you the link at the bottom of this blog so that is you come here at another time you can read it and understand the cause and effect of medical mesh. Today on Mother’s Day I want you to read a tribute from a nineteen year old daughter whose mother will have surgery tomorrow the day after Mother’s Day. Right now they are out at UCLA and her mother came down ill just before leaving home. But she did not want to miss her surgery after waiting such a long time. So she went to the doctor next to Dr. Raz’s office and got treatment. I am hoping she will be okay and will be much better by Monday and her surgery will still take place.

I have literally spoken to hundreds of women in the past five years and I know what a long journey this is. It is the same for every woman who lives in pain while she waits to see the great Dr. Raz and gets the mesh and the anchors totally removed. It is scary to wait so long and the fear of not being able to make it for surgery is very real.

A few days ago a woman posted the following comment and I want women to understand that if you are having serious complications, don’t wait until you become so ill before you make an appointment. I know you may have to find the money to travel out to UCLA or get family members on board, but make the appointment first and then work on everything else.

“I’m glad I found this month’s ago as I see Dr. Raz May 13th; however, as I type this I lay here in pain scared I won’t make next week. Yesterday I started having a new pain. It’s a stabbing inside my “v”, and when I looked I was bleeding from a small tear near where I feel the stabbing. I’m afraid the sling has broken, and the stabbing is a piece of the broken sling. I don’t see anything but the tear. No sling like material. What do I do? The doctor who put it in has already tried to clip me on the exam table when he told me it was too tight and extruded. If I go in with this, what would happen? The doctor may want to do a revision. I don’t want to let him touch me. But how can I let this keep stabbing me? I might miss my shot at UCLA. I’m already worried they’re going to turn me away due to malnutrition. I’m down to 98 lbs. cause of the “unrelated” GI issues I never had before this surgery. I’m scared and confused. Linda you are great. Ladies, prayers for us all!!!! God, help us please!”

I hope this woman will get there for her appointment and she now knows she will have surgery in the next few months and that will give her hope. However I want women to know that waiting so long can endanger your life, so if you know you are having serious complications don’t put off make that appointment because of fear. I understand how that is because I too was so afraid. First I was afraid because I thought Dr. Raz would not be understand and would blow me off the way other doctors had. But it was the first positive experience I had had in over two years. He is the most caring man you will ever meet and when you burst into tears because you can see he truly cares, he understands exactly what we are all going through. In fact PTSD is so common after mesh.

Now to read the tribute from a nineteen year old woman who was just fifteen at the time her Mother was implanted. Fifteen is an age when life should be about fun, boys and school activities and I am sure this affected her quite badly. Sometimes children act out because they don’t know how to handle a mother who looks fine on the outside but lays in bed sick and is not always in a good mood because of her pain. It is important that we mothers learn how to deal with our children and not expect they get what we are going through and if we can’t we need to ask others for help even if it means getting counselling. I know too many women who are estranged from their children because of all they have gone through and if you can change it, please do. Sometimes outside intervention is the best way where someone else is the mediator.

Believe it or not, I can still remember how I felt at age fifteen, even though it was a long time ago. I know how shy and insecure I was and how the world seemed very confusing. It is a time when we need family. Especially our parents to be strong for us, but mesh injured women can’t be strong when they suffer so much. This is why we have to learn to ask for help.

This woman had an AMS Miniarc sling implanted and I know many women who had this sling implanted and are suffering now. It does not mean if you don’t suffer that you are home free. It can happen any time and often after a few years have passed. Don’t let the word ‘mini’ fool you.

Now read this from her daughter.

“A few months ago my mom was writhing in pain and I asked her what was wrong and her exact words were, “I just don’t remember what it’s like to feel good anymore.” And that’s the moment when my heart truly broke for my mom.

In 2011 she had a bladder sling implanted inside of her to help with stress incontinence. “You will feel so much better.” They said. “Your life will be so much easier.” They said. “You will feel like a whole different person.” They said. But what they neglected to say was that just in time, my momma would make a complete turn for the absolute worse, and she would only continue to deteriorate.

My mom is a hard working woman, one who ALWAYS has to be doing something. She does NOT take naps, or breaks, or “me time” It’s always been about everyone else first, she comes last every. Single. Time. And people who know her can vouch for me on that. But now, my mom is couch ridden for the majority of the day. She went from the most active person I knew to (sorry mom) the most inactive person I know. But I’m sure you’re wondering… why did she become this way? Well, when they (the doctors at the Fort Sanders Regional) implanted a synthetic mesh sling into my mom, no one told her of the many complications that could come along with it in the coming years.

First, the plastic synthetic mesh sling started eroding into her bladder (yes, into her organs), then it went on into her hipbones (yes it can do that), then it started physically coming out of her body (crazy, right?) But what is even crazier is that at first, the doctors didn’t believe her, they said that it was all in her head, and that she was just paranoid and making it up. Because of the disbelief and doubt in my mom, those same doctors passed her off as basically crazy. She’s been bound to the couch. She can’t even sit in a chair, or stand up for longer than 10 minutes. She had to quit doing everything she loves, all because of this one single device, but according to them it is all in her head?

Not only has it ruined her life, but it has also put a damper on the ones around her as well. I just want my mom back. I want to be able to go out and do things with her, and not have to worry about her hurting so badly that she can’t hardly stand up anymore. She is the absolute strongest woman I have ever met.

Sadly, what you’re imagining right now does not even compare to what it truly feels like. What I’m trying to say is if there were one person that should be excused from all of the grief, sorrow, heartache, sadness, and anguish in the world it should be my mom. However, as much as I wish she would be, she isn’t. She doesn’t deserve this! No one does! She is in the worst shape she’s ever been in, but this Thursday on May 8th, she will be on a plane to UCLA to see Dr. Raz who will successfully remove this terrible thing from inside of her, and hopefully renew her life. I know you’re probably wondering why I just now decided to say something about it, well today is the 2nd annual Mesh Awareness Day, and if by reading this post helps stop one single woman from having the sling implanted it will be worth it. PLEASE SHARE THIS! And please gain knowledge on this awful device. No matter what they say, it isn’t worth it.”

Before I end this blog I know this is terribly isolating for women. They stay alone often for weeks or longer if they don’t have a caring partner or children who try to understand what they are dealing with. But I want grown children to understand if you walk away from your mother then one day when they are gone you will regret it. An imperfect relationship is better than no relationship. If you don’t give your mother time, she is vulnerable to those who wish to make money off her situation or seek their fame. I am fortunate to have a good relationship with my daughter or I too would have fallen into the clutches of someone who wants to use us for their own purposes. You don’t have to completely understand what your mother is going through just understand she is and care. That is the greatest Mother’s Day gift you can give to her.

Now you can read Jacob’s story.

Now you can read how my own daughter felt and she wrote about this last year. She is forty-three years old now and takes care of me. Read how she felt all the way through my journey. She was thirty-eight when I had the first surgery and since then I have had four more. If you haven’t read it then you can read how my daughter Kim feels.

7 Comments

  1. T

    I hope you had a blessed Mother’s Day! We all should be so thankful for our mothers. I pray next year I will be writing you a “healded” mother. I’m lying in my room at Tiverton anxiously awaiting my appointment with Dr Raz tomorrow!! It’s been a long 16 hour day. My husband is going to eat while I sleep! I wouldn’t be here if not for you!! God bless!!

    Reply
    1. Tammy

      Hi,
      I’m new to this and right now I’m really scared. I just had the vaginal TVT procedure done on April 13, 2015. I don’t have any unusual or painful side effects(yet), but after reading so many horror stories about mesh, I’m rethinking my decision and wanting to have the mesh removed. I met with my doctor, had the tests and the operation was explained to me. At no time did anyone say anything about recalls or the horrible possible side effects of mesh. I might be okay now, but what about down the road? I’m seeing the my doctor next week and want to ask him about this and I’m sure he’ll try minimize all of my worry. I’m really scared.

      Reply
      1. lavalinda

        Tammy no one will remove it now, this soon after surgery or if you don’t have symptoms. Please don’t be scared. It may be many years but you now have to pay close attention to serious signs. Multiple infections. Pay in legs. hip, back and foot that were not there before this surgery. Diagnosis of immune illnesses, Lupus, RA, and many others, if they were not already present. There are many, many side effects, too numerous to list. Right now you need to allow yourself to live. There are few recalls, but many warnings and your doctor should have given you a pamphlet explain the complications that could arise. Please get from the hospital your records of this surgery with the type and keep it with your important papers. Forget getting the doctors records and they leave things out. You will find a name and number of the implant and this blog will help you. http://meshangelnetwork.com/2011/01/report-to-the-fda/

        Reply
  2. Teen

    do you think its safe to go to LA to see Dr Raz by myself we only have enough money for one ticket is for the consultation I’m kind of scared to go alone probably stay at UCLA House any words of wisdom on safety?

    Reply
    1. lavalinda

      Teen Yes it is and I went out there once on my own and had surgery. There are others out there all the time and someone will make sure you are okay. Read this blog and it will help you. It is a very safe area. http://meshangelnetwork.com/2013/02/mesh-is-a-journey/

      Reply
      1. Teen

        Thank you lavalindfa. I am having trouble with getting the money together for flight so I may have to post pone–but I am having scarey dreams prior to reading your responsel. Thank you for your words of encouragement. I have bern reading your blogs for sometime but never responded.

        Thank you for reply. It is reassuring.

        Reply
        1. lavalinda

          If you are low income there is help for flights and hotel discount. http://meshangelnetwork.com/2012/11/mesh-removal-no-money/

          Reply

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