A Da Vinci Horror Story

It makes me so sad to read many of the comments left on this blog and yet some are sadder than others. This morning as I read through and answered them, I felt such shame at our medical community for doing this to so many women. It is because of that I am re-sharing one of this morning’s comments to let you the mesh injured woman or the woman wondering about mesh, to read what I read. Maybe, just maybe someone will read this and stand up and take notice. But then again, nothing seems to change. This is what women are up against. Doctors turn their backs on them when they suffer and I wonder just how many women do suffer from the Da Vinci method. Who is minding the robot store?

“I found this website last night by accident and I have never really looked up anything about mesh complications and wasn’t then – I was looking up da Vinci complications and then issues with foreign bodies – first I should start with the fact that I do not know if I had mesh used or not – gyno sugeon performed davinci hysterectomy – rectocele – and maybe cystocele (I don’t feel like getting up to get my surgical report) and general surgeon performed appendectomy due to feces in my appendix on dec 2 2011 – after 4 days in hospital I saw my gyn surgeon for first time since surgery when he came in to release me and I asked him what all he had to do – since nurses and dr there over the weekend did not seem know – while reading from his file – he told me da Vinci hysterectomy – he said that bladder was not very bad but rectocele worse than expected and that he has used mesh to repair – when he said mesh I kinda teared up just a little and looked at my husband and my surgeon asked ‘did you not want mesh to be used?’ I replied and said that I had just hoped that it wouldn’t need to be used because I have heard that it can cause problems hand that was before all the commercials and warnings and class action suits) but that I didn’t think he would use it since we had never even discussed it being an option – the dr then said that my prolapse was worse than he expected and that the mesh should not cause a problem – and I had no problems and the day after I went home I went to a ballgame and the next day I went shopping – I felt great until 4 weeks later when something happened – I felt something pull loose – I actually felt it in my upper to mid left abdomen and was almost positive I had pulled something loose because things no longer felt normal like they had since surgery – and 2-3 days later it was confirmed I guess when I went to have first BM since whatever pulled loose and it was very strange looking and then saw blood on TP and then felt like I needed to go more and bright red blood came out of rectum in toilet – quite a lot – I took pictures – called the general surgeon the next morning – Sunday and my general surgeon was on call and I told him what had happened and he said it was nothing and told me that he could not believe I was calling him about that on a Sunday morning – I have never seen him except once and that was before surgery – I never saw him after I had surgery even in hospital – I waited a few weeks and went to gyn for follow up and release and told him about what I felt happen and the blood and asked if mesh was ok – he examine and assured me it was – I kept having more and more issues which just painful and annoying – went back to dr 5 months later and told him that I was still having problems and asked again if mesh was still in place – he again assured me that it was – my husband went with me both times – he usually always does – I went to pain care specialist who thought it was mesh issue and adhesions and referred me to urogynocologist who requested my surgical report and found that it showed I did not have mesh used – of course I was confused and didn’t know what was causing issues until one day my husband and I tried to have sex and it was too painful and I couldn’t and later that night I was walking and felt something sticking me just inside my vagina almost outside just like a needle – and I immediately laid down and my husband looked and I felt and it was like a small thin straight wire – half inch or longer – attached to a string coming down my the inside of my vagina – my husband took pic and video – you could definitely see it but quality not great – so I thought I had finally found issue – It actually rubbed a raw spot but went back up – I went to my gyn surgeon who told me it was a pin in my panties – I called gyn on call before going and on call dr said it was suture or mesh and I said I don’t have mesh – I then went to another urogyno to see what could be done and described and showed pic – he did ct scan and told me my clips were in place – this was not a clip that was attached to the string – I kinda gave up and continued in pain – then lots of things started to happen – I then started to swell and gained at least 40 or more lbs. of what appeared to be lymph fluid and this continued until June of last year – I was very thin before this (112) and always had been but had lost maybe ten lbs since surgery – and in June i stretched my abdomen and fluid started draining – I have very high ANA now and have since last April – it goes way up and then down but never normal (my husband has had lupus for 18 yrs) and drs not sure which auto immune issue it is – I now weigh 100 lbs – I’m 44 – I can barely walk and sitting up is very difficult – I have abnormal lymph bloodwork – and few other abnormal test and being sent to oncologist – lots of neurology issues – sudden tingling numbness tremors – lots of hair loss on head and body – nail issues – my neurologist is great and trying to help and has referred me to mayo in December but we haven’t heard back – he is running more bloodwork before calling again – I have had MRIs that showed neck issues that I never had before – MRIs that showed some fluid on brain and sinus issues – I have lots of skins issues – boils that u believe are caused by this wire – I have issues with decacation – not constipation – strange urination – extreme abdominal pain and have had many CT’s which show nothing – have nodules on lungs – have felt puncture in lower abdomen/pelvis and since that happened my blood pressure stays extremely low for me and I’m very weak – 100/65 – sometimes a little higher – my whole adult life my bp has been in 140/80s so this is not normal for me – although it seems that mesh would be obvious cause of this I don’t know or think I have according to surgical report – but I am going to request copy of itemized bill to see if any indication- I guess a loose suture attached to string which is wreaking havoc from my pelvis to abdomen to buttocks and stick me and into me – it still comes down my vagina occasionally but does not come down far enough to get picture – my dr thinks it is needle and too thin to be seen on imaging – it has somehow involved the nerve fiber bands in lower and upper abdomen – which have caused a lot issues – I think it has gone thru or attached to lower band which also gets pulled to top of my vagina and around left upper thigh which tightens – unless there is another band there also and it is involved – things have gotten moved around so much – my ab muscles now all on left side of navel – navel has been issue since beginning – feels like something pulling it inward – too many issues and strange to list – basically I am just wondering if mayo is best – I live in Tennessee – I’m very sick and weak and feel that travel is going to be very hard for me but I will do all I can because I am going to die without help – and I will not fly because I don’t like to even when I was well I only flew when absolutely necessary – also don’t think my ears could handle the pressure – driving with my husband is best option for me but he has planned to go to mayo in MN – the bloodwork im having done and going to oncologist has really scared me along with having to have nodules rechecked next month – but without having abdomen pelvis repaired and this wire/needle removed I’m never gonna get well – my neurologist feels that no one here is capable of handling surgery and putting all issues together to resolve – I guess I’m just wanting advice – and Im trying not to let my parents and sisters and 14 year old son and friends know how bad I am and only my husband and a couple of friends know – they have seen the body changes but I have not been out of house in a month except for 3 dr visits because some thing happened in abdomen/pelvis as it does when I move a lot and things worsened around end of year – I had to take prednisone to get thru Xmas – basically for last several years – I just get thru things – not able to enjoy due to pain and physical issues – I’ve tried to stay positive and sometimes that’s hard – I wasn’t scared until blood work and bp and lymph and lung cancer possibilities – is there anyone that I could go to for advice in Tennessee – like I stated my neuro is going over and beyond his normal realm of practice to help me but I need more and quicker – sorry so long”

I wish I could give this woman the answer she wants. A local doctor who will read her records, admit the truth and be able to fix her, but I can’t. I wish I could give her great news that all will be well and I can jump to her rescue, but I can’t. I am a mesh injured woman without money or resources and all I have to offer is what I know. If she can, she needs to get out to California some way, somehow. In more than four years I have read many comments like hers and offered the same answer. Some women ran with it and sold things to get there. Some went locally and I heard nothing more. No it isn’t what I want to say, nor what I wish they had to be told. But without getting out there this woman will die a very slow and painful death.

I know some women get angry at me but they do not realize what reading all this does to me and yet I still try to help by telling them the truth. No one pays me to do this. I don’t get high on feeling like I am a martyr. I’m not. I really get run down and tired at times because of all I read, but I know women just want someone to believe them and I do believe them. I continue to do this because at times I lost all hope of any future, while the mesh was in my body. I still suffer permanent damage caused by the original surgery. It is often hard to stay positive to keep doing this but I know I must.

You may wonder what I answered this woman. I told her to see the link for doctors at the top of this blog and somehow some way get out to California where she will first be believed, listened to and hopefully helped. There isn’t much more I can say. Who do I recommend she go to?

This woman was also trained by Dr. Raz and now she is working in another hospital:  Dr. Larissa Rodriguez Beverly Hills

I know many women want more, but this is all I can give. The best chance of saving yourself, your life and your future is in these people’s hands. No I do not get paid or receive any compensation for doing this or recommend these people. I truly wish I could run from this at times, but then I remember how I felt after mesh was put into my body, and I hold on and keep going.


9 Comments

  1. Linda Nachbar

    Linda this is just heartbreaking. I know it hurts you to hear these stories but thank God you are there to listen in their dark place, whether or not they can act on the options they find.

    Reply
  2. beth

    This makes me so sad and so damn mad.. I see that she’s in TN.. I hope she reads this. And sees that I am in TN.. and sees that I wouldn’t trust anyone here.. THEY CAN’T HELP YOU! THEY WILL HURT YOU..I PROMISE. Please believe me! I truly believe the last doctor I went to here is a bad bad doctor and that he is getting paid by the mesh maker.
    The mini arc sling has ruined my everything about my life, I am a very sad, sick person. And i HATE being this
    I’m Very Very Thankful to Linda.. without her I would not have found out about Dr.Raz.. I didn’t know anything… i mean nothing about the complications or anything. I’ve been living in straight HELL for almost 4 years, I knew something “wasn’t right”, but nobody believed me, hell, I didn’t know, I just would tell them something wasnt right down there.

    LADY IN Tennessee, Traveling to UCLA was very hard.. but Oh so worth it! Dr.Raz believed me!! we had to drive 3 hrs to fly out of Nashville(so hard to sit), I cried on the plane, but again it was worth it.,it cost me $130 to stay at the tiverton house.
    My surgery is scheduled for May. I’m counting days not months.
    I’m sorry that each of us are living in this Hell. Its awful.
    Hugs to All..

    Reply
  3. Patty

    linda, my heart breaks for both you and this woman. I would be happy to share my story with her. I, too, would encourage her to get out to Cali. It’s her only hope.
    You are truly an angel. I’ve often heard it said that God puts people in our lives for a reason and that nothing happens in gods world by mistake. what you do is appreciated more than you could ever know. You were there for me when I had no idea where to turn as things were coming to a head on some of these support groups. You didn’t know me, we hadn’t talked and I hadn’t even joined your site. You easily could have turned your back, but you reached out to me, gave me advice and stayed in touch with me the whole time I was in Cali. I’m so glad you keep finding the strength to do what you do, because for all the people that do get angry with you or don’t believe you, there are those of us you have helped in many ways. For that we are forever grateful! Keep your head up and be proud. What you do isn’t for self fulfillment, but an honest effort in something you, and many of us believe in. You are doing your best to help people understand and reaching out to people you don’t even know. From the bottom of my heart, I thank you and I appreciate you!!

    Reply
  4. beth

    ^^^^^^^^^^^^ you are so right PATTY! Thank you!

    Reply
  5. Kelli

    Linda -Thank you all for your comments and I’m sure I will be posting more because unfortunately what I originally posted probably doesn’t even cover half of issues I have and am facing – and I feel like I’m complaining and whining but I know if I don’t tell people and ask for advice that I will continue to get worse – although I did write about immune issue I forgot to write that my drs are almost certain that I have developed Sarcoidosis which is better than what they first thought which was sjogrens or lupus and the one I feared most scleraderma – and from what I understand Sarcoidosis can be caused by something like a foreign body – and i may have written this on last post but I have lymph fluid issues – lymph issues – sweat and saliva gland issues – and I suspect spinal fluid issues because of small amount of fluid on brain in previous mri and ct which I think has caused the hair loss and other hair issues – sinuses won’t drain – have mucous retention cyst – vein constriction which is a lot worse when sitting up – I have a lot of upper abdominal pain and of course lower abdominal pelvic pain and urination issues and issue in navel area as well as groin pain and too much more to write – again thank you for your comments and I’m open to any advice and would appreciate your prayers – I’m praying so hard to get well and be able to help others

    Reply
    1. lavalinda

      Kelli I looked up Sarcoidosis and it makes perfect sense because mesh is covered in biofilms in fact Dr. Raz at UCLA has been doing research on it. This is part of what I found. Biofilm bacteria.

      Biofilms are densely packed communities of microbial cells that grow on living or inert surfaces and surround themselves with secreted polymers. Many bacterial species form biofilms, and their study has revealed them to be complex and diverse. The structural and physiological complexity of biofilms has led to the idea that they are coordinated and cooperative groups, analogous to multicellular organisms. Researchers have estimated that 60-80 percent of microbial infections in the body are caused by bacteria growing as a biofilm – as opposed to planktonic (free-floating) bacteria.
      This is the link http://autoimmunityresearch.org/science Now you have your answer.

      Reply
  6. Mary

    Linda, it is so sad that we have to live like this! I went through this for 10 yrs. with drs. Telling me I’m crazy. Thank God you were there when they told me I only had 2 months to live and you told me I needed to go to Dr. Raz. I’m still going through so much but at least it’s out.

    Linda I can’t remember did you ever address why our immune system is so compromised?

    Love mary

    Reply
  7. Michele

    I had surgery performed by Dr. Raz and Dr. Larissa Rodriguez in 2007 to fix a horribly botched bladder lift after a hysterectomy. My bladder was lifted so high, it was obstructed, and my ureters twisted too—obstructed kidneys. They basically saved my life, and were so amazing in helping me. I now have prolapse (various organs) and immediately went back. Dr. Rodriguez is now at USC—went to her right after the prolapse diagnosis. Flew down there just to see her. She not only remembered me from 8 years before, but gave me a big hug, sat down and discussed options etc. I am scheduling surgery with her as soon as I can do it. Cannot recommend them enough. Don’t let people turn you away or minimize your pain. I had several local surgeons do that to me before I found the Dr. R. She was a life saver.

    Reply
    1. lavalinda

      Thank you Michele yes women love her and her info is at the top of this blog under doctors in case anyone is reading this. Click on it and it will drop down and you will see a link for her.

      Reply

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