Conversation with Dr. Twiss

Over two years ago when I began this blog, I did not know where to turn and who to turn to help me with my mesh complications. I had run out of money and was abandoned by my doctor to face life alone and in pain. That is the story of many women with mesh complications. Because of this blog I ‘met’ women around the country and the world who began giving me an insight as to how difficult it was to get this mesh product out of my body. When I first began this journey, I did not know its name or what it was made of. It has been a long journey of knowledge gained by other women’s experience and finally my own. These lessons I have laid out here so that you do not have to jump hurdles to know where to go and who can help you. But the choice of what you do is your own.

During this journey, thousands of women email me and leave comments about their journey through mesh hell. I have spoken to hundreds. Cried with many. Comforted and helped them through to find a new life. It has not been easy and what I have learned affects what I write here. It is because of this that I have held off giving you another doctor who can help you until I had all the facts. I take what I write very seriously because your life is at stake. Your future could be jeopardized when you choose the wrong doctor.

I heard about this doctor a long time ago by the office of Dr. Raz. Dr Twiss learned from the best, but that did not necessarily mean he was good at his job. I knew of other doctors in the past that I believed were good surgeons and women kept in touch with me to share what happened to them through their removal surgery and over a long period of time. They faithfully shared with me privately if they felt better or worse after surgery. How much of the mesh was removed. How long it took for surgery to be performed. How they recovered, their pain level and had surgery improved their life or made it worse. What they told me is why I stopped giving out other doctors names except those at UCLA.

I know the desperation of women searching for mesh removal doctors. It is a mine field. Women no longer trust doctors when they most need them. They are living in pain and the idea that they have to travel far and wide to have the mesh removed, is beyond their imagination. And yet hundreds have taken a journey that gives them hope. It is worth the effort and the expense even when you do not have the money. Somehow you have to find it to give yourself a chance at living again.

It is because of one woman’s journey through mesh removal that I decided to write to Dr. Twiss. I already knew he was a good surgeon by what I had been told. I knew he was a very caring human being. But there were two issues that I needed to clear up. Both are very important to women who suffer from mesh complications. I truly did not expect this man to put anything in writing because most doctors will avoid doing this. I was surprised when he answered my questions candidly and honestly. I applaud him for doing so, knowing full well that what he said would go public on this blog. I am making it public because I know your fears. The very word mesh throws you into despair. The idea that a hospital uses it where you go to have it removed is torture to those of us who are mesh injured.

In the past I wrote a blog about you thinking that if you take a paper into a doctor’s office and have him sign it, you will be sure that no mesh will be used. I heard from a twenty-six year old woman who thought she had done what was needed so that mesh would not be used in her body and it was placed in her anyway. She wrote because she was having immediate complications and did not know where to turn. I consulted a lawyer friend and asked him did she have any recourse. No she did not. Doctors are protected and can do as they wish if they think it is ‘right’ for their patient. Once under you are at his/her mercy and his/her honor as to whether his/her word will be kept. You must always remember that. You must take charge of your well being and ask questions.

This is most of my questions for Dr. Twiss and his answers. I have removed a small portion of my email because I did not want to give too much about the person who had her mesh removed by him in November last year. She has kept in touch and has been a great part of helping me in the past. She continues giving me updates on her recovery from mesh removal by Dr. Twiss.

From me.
Hello Dr. Twiss.  I had complete mesh removal by Dr. Raz at UCLA last Oct and he helped me immensely.  I write a blog to help women and one of the ladies I know went to you in November for mesh removal. Recently because of her experience, I have been given your information to women behind the scenes, who cannot travel out to UCLA and I also gave it to a man who has bladder sling complications.  There are two things I have to ask you.  I understand you still use mesh slings in your practice. Can you tell me if you would put mesh into any woman now?  This has become a terrible issue for many sick women.  Also she told me that you do not have the translabial ultrasound.  Can you tell me why?

Dear Linda,
 I am sorry you have had such a terrible time with mesh and I glad Dr. Raz was able to help you. I have done my best to respond honestly your questions below.

We do have an ultrasound protocol in place for vaginal mesh.  I am removing a lot of mesh these days so I worked with our radiologists to develop a protocol.  The translabial ultrasound is still considered “experimental”.  

The answer to your other question is more difficult.  The short answer is yes I do still utilize mesh for repair in appropriate candidates.  Due to the nature of my practice, I often see patients who have failed other prior surgeries and therefore mesh is an option for them.  I realize that based upon your experience, you have strong feelings on this topic.  However, I offer all patients both mesh and non-mesh options and we discuss the risks/benefits of each.  Ultimately, the decision rests with the patient and I don’t “push” mesh on anyone. I am doing more and more non-mesh repairs these days and those patients understand that there failure rate is higher–as long as they are happy with that, then so am I.  Also, anyone who gets mesh from me has to agree at least annual follow up even if they are doing well so we can check it and collect the follow up data.  The autologous fascia sling (using your own tissue) is making a comeback due the mesh problem and this is the sling I offer to patients who have had their mesh sling removed.  This sling carries a different set of complications= wound problems, inability to urinate, and bleeding. No operation is without complications.  Ironically, it is these complications that prompted the use of mesh for slings in the first place!–Things are really coming full circle.  Don’t get me wrong.  I am neither for or against mesh.  I counsel patients about the evidence, risks and benefits and help them to make the best choice for them.  I think the real tragedy of mesh is that patients were having problems and they were ignored or abandoned.  One thing Dr. Raz taught me was “surgery is marriage”–you don’t abandon your patients who are having a problem after surgery.  You help them and fix the problem!

From me
The other really important issue is can you make slings without using mesh?  Many women are incontinent after removal and I am one of them.  Dr. Raz had to rebuild my urethra because mesh was cutting into it and this happens to other women.  I will go back to UCLA in April to have the fascia sling surgery.  I do know that you trained with Dr. Raz but I needed to ask these important questions before I write about you.

Yes I offer the autologous fascias sling.  It is making a comeback.  But beware, it has its own set of possible complications.  There is no perfect sling.

From me.
There are few doctors in the world who can remove mesh without injuring women further. The one thing I have learned it isn’t just about removing it, but how many hours a woman has to be under anesthesia to have it removed and how many tries it takes.  By what she says you are an excellent surgeon and take mesh removal seriously.  I am just trying to verify things because I did give names to women of other doctors in the past and the doctors were not up to the job.  I believe you are.

About 50% of my practice is removing other doctors mesh implants.  It is much harder to remove than to put in and yes it is very tedious surgery.  Sometimes not all the mesh can be removed in one setting safely so I do have some 2 stage removals as well.  Seeing all these problems has caused me to alter my approach and counseling and offering of mesh in my practice.
You are a hero. God Bless You.

Back to me and this blog. Not on record with Dr. Twiss..

I truly believe in the translabial ultrasound as a tool to detect where mesh is before surgery begins. It may not give all the answers, but if it shows where mesh has moved to, I believe that any tool to help surgeons do the best job possible is invaluable. Many women contact me who have had more than one partial removal. They have no clue what is left inside them regardless of what a doctor has told them. They know they remain sick and in pain, and all they have is the word of a doctor who did not give them the full facts BEFORE they put the product inside them and they are worried about what was really done and how much was removed.

We have all learned over time of dealing with mesh that it can migrate and break up. Where did it move to or go to? I just had an email yesterday who had hers removed by Dr. Raz last Thursday. She said he told her that hers was breaking up and he found pieces in various places. Fortunately she had removal by a surgeon who knows what he is doing, but he has no problem saying he needs all the help he can get. So I decided to ask him his view about the translabial ultrasound.

My question to Dr. Raz.
Why do you feel this test is invaluable in mesh complication cases?

My purpose is not pit two doctors against each other, but to clarify how you both feel about this test.   Thank you.  Linda Kilpatrick

His answer

In my view the protocol that we have for translabial ultrasound is very important to take care of patients with mesh complications.

It is the only test that can locate the mesh.

In patients with prior surgery for mesh removal, you can find where is the residual mesh located.

The ultrasound will tell us the proximity to the urethral wall and the bladder well (erosions).

Since is done outside the vagina there is no pain from the insertion of a probe.

I will continue to use it.

So now you know about Dr. Twiss. I truly do believe he is an excellent surgeon who cares about his patients. As the volume of mesh removal surgeries grow in his practice, I hope he will instigate a no mesh policy as has happened with the urologists of UCLA. It is a big step I know, but good surgeons can be at the forefront of change. No there is no perfect sling. However, mesh slings have a limited life as do fascia slings and I believe MANY more complications, with women very ill after many years it has been in their bodies. I do believe using your own tissue cannot damage and leave your life without family, career, financially devastated and no future. Mesh is the terrible gift that keeps on giving. A gift no one wants, nor asked for. You must now decide how you feel and be responsible for the choices you make. That is your life and you should live it with knowledge. It can be very powerful.

The FDA has suggested that when a woman has a sling placed in her body, there should be a three year follow up to detect any complications. They do not consider that many women are abandoned by the doctor who placed it inside them because of serious complications, or that they have no recourse when they lose their jobs and no longer have insurance or have run out of money. It takes years to establish disability and then they are at the mercy of doctors who have no clue about how to fix their bodies. Also not considered is that women are told for many years that it is not the mesh, but a series of other illnesses that have no bearing on mesh. They live in pain for many years and their bodies are ravished from the serious side effects of mesh. I have heard from women who have had it in their bodies up to fifteen years, long before it was approved by the FDA. I have written the story of one woman who could no longer sit, nor walk and she had to be driven out to UCLA for Dr. Raz to remove it. That length of time in her body has taken its toll. No surgeon regardless of his brilliance can remove the serious complications from long term mesh. I do hope Dr. Twiss will discuss with Dr. Raz what he is seeing and why they now have gone mesh free at UCLA. Yes, there needs to be other answers to help women and I do know Dr. Raz continues working on new techniques when there are serious issues with women’s health.

This link will take you to Dr. Twiss information. He is in Arizona. There is an email address so that you can ask him important questions. Keep it short, to the point and with facts of your case. These doctors do not have time to read hours of rambling from you about what it has done to your life. They want to help you by understanding the type of mesh in you, date of implant surgery and any follow up partial removals. Then you can tell them what your issues are. Simple and to the point.
http://surgery.arizona.edu/faculty-profile/christian-o-twiss-md

Please read the previous blog that I wrote to all mesh insertion doctors.

6 Comments

  1. My experience with Dr. Twiss

    Bravo for your research on Dr. Twiss. I saw him once and can say he has a very caring, empathetic attitude towards his mesh injured patients. He acknlowledged my pain. I am one of multi mesh implant victims and when my friend told me about her very positive experience with Dr. Twiss, I had to meet him. I have had mutiple removals by Dr. Raz and love him dearly as a doctor, but he is getting up there in years and it has taken a considerable (to put it minimally) amount of money out of pocket to see him. I was expecting one surgery, but alas, I had to endure several. For me, it has been a rough journey in my life. It’s two steps forward, one step back.

    I have to tell you one thing though, and I understand if you do not post this, but these words came out of Dr. Twiss’ mouth: “Unfortunately mesh has gotten a bum rap”. Excuse me? I was unglued when he said that. That was the very last thing a woman devestated by mesh should hear. I hope he regrets saying those words and never says them again. I would drop him like a hot potato, but my friend had such good results from him. She too had multiple meshes and he apparently did a meticulous job removing them. She is very fortunate not to have incurred serious nerve damage. I am so happy for her.

    Dr. Twiss did recommend a physical therapist that truly understands pudendal nerve damage and I have been seeing her, even though it is a two hour drive each way. I cannot sit for such a drive so my dear husband drives me as I lay down on couch cushions and blankets and pillow. I actually look forward to the drive as I do reading during the trip. I have had physical therapists before and they failed to help me (pre mesh removal). So I decided, why not give this a try as Dr. Raz removed all but one “arm” of my mesh. She is AMAZING!. She has a very different approach, takes each visit very methodically and individualizes a plan unique to her patient. She has me tell her what I am feeling as she does her internal and external work and adjust accordingly. She gives me homework assignments and I can keep in touch with her via email. Her name is Diana Fassett. Every vist she pushes me a little bit more. My goal is to cancel my interstim surgery with Dr. Raz and get off pain meds. It may not be possible, but she has given me hope once again. I truly believe God has directed me to all the right people. This whole experience with mesh, which has robbed me of nearly a decade of my life, give me appreciation for good health and how fragile we are. I have empathy for those in chronic pain.

    Reply
    1. lavalinda

      Thank you for leaving this. No I will not remove it because I too hope no mesh woman will ever hear this again. Yes, multiple mesh women have it so bad with more than one surgery. I stay in touch with many of them and their cases are often serious. I also know from time to time an arm may not be removed due to the danger of hemorrhage or more nerve injury. Many women are enduring so much pain because of this and it is shocking. And you are still dealing with it. Manufacturers of these products should be ashamed, but they continue using it.
      I have read on many sites advertising help for women that this is a witch hunt. The reason they continue to do this is because they do not follow women through all of this and truly listen to them. I had a note from a woman this morning whose surgeon once again says it is not the mesh causing her issues. It still astounds me. Thanks for leaving this comment. This has to change but until doctors believe mesh is doing it, they remain comfortably blind.
      I truly hope you can be helped without more surgery. And I am glad you gave the name of the person you have confidence in. Thank you.

      Reply
  2. Lisa Powers

    I had a second mesh put in and had to have it removed the very next day. I had excrutiating pain on my right side. It felt like a knife was inside me and it was on fire. I would not recommend this procedure to anyone.

    Reply
    1. lavalinda

      Lisa I have met many women who have 2 or 3 slings put in one on top of the other over a period of years. It almost destroyed them.

      Reply
  3. teresa

    I have had the mesh in I have been in pain , bleed when you go to the doctor it’s I sorry but there’s no guarantee to any surgery. I’m I stock with this pain I’m mesmerbale, please any help

    Reply
    1. lavalinda

      Teresa it is time to get to a doctor who knows how to help you. View the doctors link at the top of this blog.

      Reply

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