My Fascia Sling Surgery Part Nine

Once again I have to write a note before I give you an update on my visit to a new urologist yesterday. Please, please bear with me while I do this first.

This is to the lady who gave her name as Carol Smith and wrote a note here for me that was not true. First, I know this is not your real name. Second there are other Linda’s on other forums and groups and it is possible that you may have mixed up with a different Linda. Therefore I am giving you the benefit of the doubt. I am only on one group and that group is run by Medical Mesh News Desk. I am NOT on any others and only drop my posts there and answer questions, mostly in private. I have never been accused of bullying in my life and if you knew me at all and read my posts you would know I am not that type of person. I believe I deserve an apology and if you sent this to the wrong Linda, even more so. I know there is a great deal of angry mesh women out there but anger does not help us in the long run. Most of my anger is because of what I see and hear about from other mesh injured women. Not because of me. If you truly want to help other women you would have done so without any hoopla. TVT-No is a forum where they take donations and you could do so there privately without feeling you aren’t helping me. Believe me I did all I could to get out to UCLA including selling my older car to pay for it.

Because of what you wrote I made the following statement on the group I am on.

In response to the accusation I received via my blog this morning, I would like to make a statement.  When you post a comment or send an email, it does not matter if you use a false name.  It can be traced back to you, regardless of what you do.  The only FB group I am on is this one and the reason I am here is because of helping other women and the respect I feel for Jane Akre.  Jane knows the truth about me and she has trusted me by sending me and the other ladies who help women, women’s emails so that we can try to wrap our arms around a woman who is desperate for someone to care and believe them.  Jane also does this even though she does not have any mesh implant. 

There are four other ladies who help me and only one is in this group.  She uses her medical knowledge as well as her mesh injured knowledge to help other women, especially the very young women who are trying to raise young children while living in agony.  Not one of us is compensated for the many hours we put in answering emails and talking to women over the phone.  We do this while dealing with our own continuous complications, because we care.

Whatever your experience, good or bad with Dr. Raz is yours.  We recognize this man is not God and cannot change the path of every woman.  Before him, none of us had anywhere to turn.  We are grateful that he was there and did his best to help us.  When I have mentioned the fact that a woman could die from mesh, I have also been criticized.  But unless you do what we do, you would never know how close some women have come to dying.  Regardless of their continuous injury, these women send me notes to tell me how grateful they are to Dr Raz, that they have lived long enough to welcome new grandchildren into this world.

Whatever you perceive of me is totally incorrect.  I do not pat myself on the back, nor have a holier than thou attitude.  In fact I am humbled by this experience and it has taught me to be compassionate.  You said you are well off and could help women with their expenses but you choose not to.  That is your choice.  One other thing.  To state that I choose to support some of the worst bullying you have ever seen on the Internet, is totally unjustified.  I have never bullied anyone and if you read the hundreds of emails I get, you would know the absolute truth.  Not your version of the truth.

If it is your intent that I go away and hide, I can assure you I won’t.  You can hide behind your own identity but I have always used my real name.  I have done this regardless of the consequence to my own future, because I care.   I am sorry you feel the way you do.

No I did not publish your comment because it was worthless in helping others.

I am so sorry that any of this has to be said, because it is a real distraction and does nothing to help other.

Moving on.

I know many of you ladies are waiting to see how it went yesterday. Well it did not go the way I thought it would. However, I understand why the new urologist did not remove the catheter. I had not had a culture done since my treatment ended and if she had removed it and the infection was still there, I would be back to square one with a bladder that would be thrown into multiple spasms. By doing self cath at this point I could make the infection worse and I would be re-infecting myself. So she did the right thing. She carefully examined me around the catheter and told me I had healed. Good news. Then she took the urine sample and sent it off to a lab. She also wrote me a prescription for an antibiotic that is in the same family as rocephin and I should begin taking it by mouth five days before she hopes to remove the catheter, and that would begin this Sunday. I have an appointment to be with her Thursday morning and unless the culture comes back with problems, I will spend time there to see if I can ‘go’. At this point it is in question if it has been the infection causing retention or the new fascia sling. She assured me that if I cannot then she had a lady who would go over self cath with me. This is all feeling like déjà vu and I am truly worried.

We made the trip to see this doctor at 1.45 in the afternoon and knew that by the time we got out of there, heavy Houston traffic would be in full flow. It was. It was after 3.30pm and it was at a slow pace. The normal two hour drive was going to be three. We arrived home at 6.30 to find a hungry and lonely little dog waiting on us. I was so tired and travelling with a catheter was very uncomfortable, so all I wanted to do was lay on my memory foam mattress and rest. However my little dog wanted to show me how much he missed me, so I piled pillows on top of my stomach and gave him some time.

My lack of sleep the night before made thinking about any of this nothing but a muddle in my head, so after a good night’s sleep, I arose this morning and all of it came back to me. I have so many questions in my head and of course more anxiety. I am now on my 5th catheter week and it is very hard to deal with. So I began writing what I wanted to say to this doctor and questions running through my head. They say it is better out than in and frankly writing is the only way I can relieve my stress.

I should tell you that this doctor was extremely nice and she was gently when examining me. She also listened, took notes and well you can read the rest here……

Dear Doctor,
Yesterday I met you for the very first time and I recognized immediately that you are a kind and caring woman. I had spent a night of very little sleep before coming to see you and was on edge until I met you in your office early that afternoon. I had worked myself up into a state of high anxiety. I knew my BP would be very high and I warned your nurse that it would happen. Otherwise my BP remains extremely good. You see before I had this sling put into me three years and two months ago, I had already had very bad experiences with drug reactions and doctors who did not believe me. I expect that the moment I meet any new doctor, I will be put on the defense and that is a part of my anxiety. The other huge issue is all I have been through since the sling was put into me and once again I was not believed when I complained of constant pain in my groin that became relentless as time went on.

I do believe you are a really good doctor and will do your best to help me through this new phase of my terrible mesh hell journey and I do appreciate your help. I do want to ask you a question. When we first met you were gracious enough to sit and read what I had handed to you. My journey has not just taken me through a simple non invasive surgery, but now there have been four surgeries as I stated in the paper I gave you. You did something right and I appreciated it. First you read it all and asked me to explain a few facts so that you understood my case. Second you put in a call to Dr. Kim who had performed my last surgery just four weeks ago. I applaud you for doing this and listening to your patients is an excellent quality. There was one thing that worried me. When you found out Dr. Kim had performed the fascia sling surgery recently, you made a statement that surgeons no longer do this surgery because of retention issues. I responded by saying “But look what happened to me with the surgery I had to begin with”. You did not say anything to this and I am glad you did not.

You see doctor; I had no clue what I was dealing with when I had the first surgery. I was not given any proper explanation nor ever saw a pamphlet from this surgeon even though I asked for one more than once. You mentioned retention when it comes to fascia surgery. Like I stated in my information, I had immediate retention which was never addressed. Immediate infection after infection and countless antibiotics, none of which worked. I was told all this was nothing to worry about by my surgeon. She insisted that all this was normal and all would be well. It wasn’t. After nine weeks she went back in and cut a tiny piece out of the center. I know this now of course, since my removal surgery by Dr. Raz last October, because he brought the mesh to me and explained everything.

So now my question to you is, “If I had walked into your office after all this happened after the first surgery, what your plan of action have been?”

That did not happen of course because I had gone through all my savings by that time and my credit took a huge decline. I could not pay all the hospital, doctor and lab bills that rolled in. So I waited two years until I became eligible for Medicare last June. However, I spent time doing research and knew the only place I could have it all removed was out at UCLA and the surgeon for the job was Dr. Raz. I had to take a chance and go there and had a plan of action in place three months before my Medicare Birthday.

This has been a real hardship. Not only am I now severely mesh injured, but I had to make yet another choice to try to live a better life. Either that or I could remain a recluse. Dr. Kim explained the issue with retention before she did the surgery and there was a fine line. I could have cancelled it. But what was I to do? Before the sling was put into me I wore a thin pad just in case I sneezed. I was a happy and well adjusted after getting used to being a widow a few years before the first sling surgery. I had been married thirty-five years and had had to find my way through a maze to start living again. After the sling was removed, the damage was done to my urethra by the mesh and I was TOTALLY incontinent. I could not walk a step without losing urine. I placed several pads in my underwear before I left the house and carried many more with me including changes of underwear. I could not travel like this. I could not enjoy normal things that every woman likes to do. I could not seek therapy for my injured leg because of the amount of urine that constantly flowed.

I do not know of any surgeon who would have been equipped to deal with my nerve and muscle injuries, other than Dr. Raz. For him to do what he did was amazing. I did not come out of this surgery any further damaged, in fact after he removed it, the feeling or a tight tourniquet wrapped around my thigh was gone. I began to breathe again without constant and relentless pain.

I remain living with the injury in my right leg. I cannot walk or exercise the way I did before. My exercise was that of a different nature than most women my age. I was happily working on a new future working on my house and climbing ladders every day was my norm. I did all the normal things I had done all my life. Once the sling was put into me, I could no longer step up one rung of a ladder. Stepping up onto a curb caused severe pain in my groin and sharp pains in my leg, thigh, hip and back. I was asked by the surgeon who had put this into me “Are you sure you did not have this problem before?” That was highly insulting and caused me more anxiety.

Since removal I know longer use a walker, which had become part of my life for fear of falling and breaking bones. Once had been enough, six months after the sling was put into me. I could also get around my house without the use of any walking aid. However, I still need a walking stick when I venture outside of my home. That is the legacy of bladder sling mesh.

I was and am truly afraid for my future. If I have to self cath, how will I ever travel again? My family is in England and it is a nine hour flight. How would I every self cath in a tiny airplane toilet with an injured leg? Does this mean I will never see my birth family again? Also, how long can I be away from my house between self cath? I will have difficulties as it is because of the injury to my right leg which pulls my groin every time I raise my right leg. What will happen to me as I age when I can no longer self cath? Will the use of constant catheters eventually cause an infection that can no longer be treated and I will die an awful death? These and many more questions keep running through my head.

All I can do right now is pray for a good outcome next Thursday. I can hope that by Monday when the culture comes back I will get the all clear from the pseudomonas infection. I am well aware that this strain is regarded as a superbug and does not always respond to treatment. I hope that my refusal of constant antibiotics In the past will give me the best shot at recovery with the ones I am taking now. Like I told you, I lived on Marshmallow root for the entire length of time before I had the mesh removal surgery.

Sincerely…………….a very meshed up woman.

So where do I go from here? I wait until Monday for news of the culture. Then I can go from there……………..
My journey will continue………………………..

 

 

13 Comments

  1. Sharon Mcbride

    Hello ladies, comrades. We all stand here together for the same cause. It is only by standing strong together, with the help and bravery of women who choose to put themselves on the front line do we have hope. If not for these strong blessed souls, many of us would have thrown in the towel by now. I speak form my own experience. This blog, and the women who have risen above and beyond the call of “duty” are the reason so many of us are still here to read this blog.I for one log on first thing in he morning, and last thing at night. This is the first time I post, I’ve not read any other posts because I will admit it, I do not know how !!, plain and simple. Suffice it to say that I read enough of the postings to get my daily dose of affirmation from Linda and all others who post. I feel such compassion for the woman who chose to attempt to “take down” Linda. That is ignorance in it’s pure and simplest form. We must all be mindful, and lack of mindfulness is ignorance. When I say ignorance, I’m not insinuating stupid by no means, it is being aware. Aware of what we are doing, are our motives clean, meaning are they meant to harm another. and last but surely not least, Gratitude… Not just for the fact that Linda
    will do most anything for any one of us, but gratitude for today…
    I leave this blog now not knowing if anyone will see it, also, still without the knowledge of reading other people’s posts on this blog.
    Thank you, for giving me the opportunity to post.

    Reply
    1. lavalinda

      Thank you Sharon. Your words are inspirational because I know the seriousness of your case and how hard it has been for you to hang in for mesh removal. It is a very hard and long journey but you will make it through.

      Reply
  2. Chelsea

    Hello, I sent a previous email just minutes ago, I am curios to know if any of the 3 suggested at UCLA would be ok for removal surgery or just Dr.Raz? Thanks for letting me know I’m not alone. Please email me and let me know your advice on this or post again, thank you so much, Chelsea

    Reply
    1. lavalinda

      Chelsea he has trained both women surgeons but you have to decide which you will go to. Dr. Raz has of course the most experience but these two women often do surgeries with him and they have learned from the best. If your case is extreme, he often joins one of them to help with a surgery. And they also join him. You will be getting a team because he is also there to advise and help. Dr. Kim will have a baby in August. All of these doctors are very busy because UCLA has become a melting pot for removal surgeries. No one can decide for you what you want to do.

      Reply
  3. a meshed-up nurse

    Dear Linda. Thank you for writing about the moment to moment trials of mesh complications. It helps others see more clearly how these problems can impact every moment of your life. And thank you for putting into words the concerns and fears of the uncertainties and unknowns of your future. That is huge because you and others just don’t know h

    Reply
  4. a meshed-up nurse

    (cont) how things will turn out in the end. The huge unknowns from what was supposed to be a “minimally invasive” surgery are life-changing and downright scary. I’m so sorry you are having to go through this. I am thankful that it looks like you have a caring, open-minded, and helpful doctor to help you get through this.
    To “Carol Smith”: Linda has helped so many injured women over these past few years and continues to do so every day, even in the midst of her own daily struggles with her continuing mesh complications. Many write her just to thank her for “saving” them by pointing them in the right direction. We are all just women talking, learning from, and helping each other- everyone is free to make their own decisions. Sometimes it’s easier to learn from others who already have “been there, done that”.
    I hope that if you really are able to help others financially that you do because it’s greatly needed by many without insurance or money for flights/hotels, etc.

    Reply
    1. lavalinda

      Thank you nurse for your invaluable input. Yes mesh is not a ‘one time and you are done thing’. It is something that we live with for many years and fear the ‘what next’ question. It constantly comes back to remind us this is not a simple one time minimally invasive surgery. It is a life time of physical and emotional pain.

      Reply
      1. Helen R

        To “Linda Smith (Unknown)

        Reply
        1. lavalinda

          You are so right Helen and hard work pays off.

          Reply
  5. sylvia Lafferty

    Hi Linda, thanks so much for everything and all of the helpful information. I am a mesh victim, but this post isn’t about me, it is about another dear lady who is suffering. She is from West Virginia, had removal @ UCLA end of March. She has been in 4 different hospitals and still is not home. She is now in a Las Vegas hospital, two blood clots, wound infection from intestinal removal due to blockage, deep seated infection in her bladder, IC and incontinence. She is distraught, and feels she will never make it home. Her husband is by her side 24/7. Could you or one of your ladies contact her? I have her cell phone #, as well as her husband’s. Please email me so I can give you the pertinent information. I can also give you my phone number. I live in the L.V. area and met them both for the first time last week. Thank you so much!

    Reply
    1. lavalinda

      I will pass this on to other women who will try to help.

      Reply
  6. Barbara Vance

    Linda~As I read your update I am crying because my heart truly hurts for you. I am so sorry you’re having such a difficult time. I had no idea as I sent you a few private messages over the past few days (which you so graciously and quickly responded) you were suffering your own pain. I pray you get good results tomorrow and you get that cath out on Thurs! I cannot accept that you will have this cath long term! Stay strong and keep moving “one foot in front of the other”.

    Reply
    1. lavalinda

      Thank you Barbara, I am waiting on the results today.

      Reply

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