Permanent Nerve Damage

I would love to find out the true percentage of women who had these bladder slings who have permanent nerve damage, but in all honesty most women do not speak out and it would be very hard to get a proper result. Instead I can only go by a small survey that UCLA did when they asked their patients to fill out a questionnaire one year after their removal surgery. It seems that according to this survey, 20% of women will be permanently nerve damaged after ANY of these implant products are installed in a woman’s body. You should know that the questionnaire had nothing to do with type or brand name of the implant. It was an overview across the board of women of all ages who had every type of product in their bodies and their complications were serious enough. Now I want to ask this question if you are a woman who is about to undergo an upcoming hysterectomy or prolapse surgery and are told “We don’t use THAT mesh”, are you willing to take a 20% chance that you will become a statistic whose life will be changed forever?

I had just began writing this blog when the phone rang and I caught up with a woman who had mesh removal at UCLA over a year ago. She knew something had fallen so went to a doctor in her area who had trained under Dr. Raz, for an opinion. It was her bladder and the woman doctor told her she could fix her with a different kind of product not the one you see about on TV. HUGE RED FLAG. You have to understand that just because a doctor has trained under Dr. Raz, does not mean that the hospital they work in does not require they use certain products, (medical product selling and kickbacks are quite well known) or they have not done enough surgeries without using these products, to get any experience. So it is up to you to do the work and ask the questions, which this woman did. She has now decided to go back to Dr. Raz based on her gut feeling about what this doctor said.

My suggestion to any woman who needs any type of pelvic repair surgery, is to ask the doctor IMMEDIATELY for a pamphlet so that you can take it home and study it. Then Google it including any PATENT information. I can guarantee you that you will find it is yet another mesh based product. Save yourself a lifetime of pain and devastation and take time to learn. This doctor immediately scheduled her for surgery on the 15th of this month, just eleven days from now. Huge red flag. If you are not given a pamphlet but only told about a product, my suggestion is RUN! Remember, you are not going to die right now if you need any form of pelvic surgery, so spend your time wisely and learn all you can and don’t just jump in to anything. This is YOUR future and that future can be in put in jeopardy. Don’t allow your life be stopped because you did not take the time to learn.

Now back to nerve damage.

I can only describe my nerve pain to you and what I know from speaking to other women. I do know that some women have woken up screaming from pain in the groin after a mesh sling product was put into their body. There is a good reason. You may not know that the technique used, requires something called trocars. They remind me of special shaped long needle tools.

You should know that the technique used to place a sling in a woman’s body is called a blind procedure. This is because the trocar will be used to put the sling in you WITHOUT the use of any camera or viewing guidance system. I don’t think women realize and I did not either, what a complicated nerve and muscle structure these tools will pass through. Hence a high chance of damaging results. The procedure as well as these products are flawed!

I want women to understand why there is so much nerve damage during these surgeries. To do this I found a good diagram to help you understand. Remember this diagram shows you the various nerves that could be affected by the trocars during surgery.

Many women wind up with pudendal nerve damage, which means they can never sit without extreme pain. They can walk for miles, and stand for a long period, but sitting is impossible without pain medication or a pain device such as an implant called an Interstem. Can you imagine a life where you cannot sit?

My damage was done to my femoral nerve, as often happens to other women. I cannot stand for very long without pain in my groin, hip and thigh which can go all the way down to under my foot. My sling was removed two years ago next month by Dr. Raz at UCLA and removing it gave me huge relief. But although I had hoped that in time that my nerves and muscles would heal, they seem to have come to a full stop and I have to live with the remaining painful issues. As a result I am permanently disabled. There are many simple things I use to do that I can no longer do and there are much bigger things I cannot do such as drive a car. This is why today I am writing this blog so that it does not happen to you.

I want women to know that it would be easy for me to walk away from this blog and ignore the problems just like most people do. I could not care what happens to any other woman and have the attitude that it’s not my problem. But it is the problem of ALL women. Young, old, and from any path of life. Women’s issues are the most IGNORED in all the medical fields and the lack of caring will be apparent if you have one of these surgeries and wind up with complications. You will be cast aside and told you need pain management, physical therapy or anti-depressants. Worse yet you could be one of the many women I have spoken to who will go through hip surgery because they were told that was their problem, only to wind up in the same pain they had before hip surgery. This is because IT IS THE SLING causing the damage. This is what happens to so many mesh injured women day after day, year after year. You will be left to deal with the consequences of these flawed surgeries.

Learn more about these types of complications BEFORE you have any pelvic surgery.

Trocars can also damage the bladder during these surgeries read this

Damage caused by trocars during laparoscopic surgeries read here

View pictures of trocars here

If mesh complications happen to you after one of these products have been placed into your body, do not believe the TV ads saying you will be one of the lucky winners of compensation. Don’t believe anything about the millions that these adverts say have been won. The truth is, IF you are lucky you may wind up with a few thousand dollars. However, more than likely it will be a pittance of what you have spent or will need for your future as a damaged woman. You should also know that what these ads do not tell you is that 50% will go to the lawyer and your insurance and Medicare will request their surgery money back. What will you be left with? I can guarantee you one thing. A lifetime of HELL. Pain, loss of partner, loss of family, loss of career and no sex. That is what truly happens to women with these complications. I know because I am one of these women. Now it is up to you to search for a doctor who will do your surgery without using implants. I wish you a good future, not one like mine.

16 Comments

  1. Mary Blanks

    Good morning to all and may The Lord richly bless each of you. This message is for the mesh injured all over the world. Another of our dear sisters is suffering after having surgery done by Dr. V ! Her abdominal sutures burst open somehow and she was readmitted to her hospital I believe , but she is in the hospital she had to have a wound vac in her surgery site , and she has some real infection that they are fighting. I believe she had her surgery a month ago. Please pray for these ladies! I have never yet heard of any of Dr Raz patients going through this. My perception of this is that there is something fishy that people are trying to tell people Dr V. Has a better handle on removing this mesh, I believe they are very much mistaken. This dear lady and many more are even more injured than they were before. Only the translabial sonogram can detect where it has migrated to. I was inform that when I was told I had only 2 months to live ( almost two years ago) I was informed that because this mesh was designed to mesh with our skin and become invisible ! So without the translabiL sonogram the drs are doing exploratory surgery on these already injured women ( cutting and looking ! I’m really concerned I hope I’m wrong but the pattern seems this way. I love you all but it’s not about a tummy tuck (some are offering it with your removal lol ) it’s about us living. To be honest hearing all that I’ve been hearing and throw in a tummy tuck I might have chose him and I believe I’d be dead now! This Is one praying women full of His Holy Spirits opinion. WHEN THERE IS A LOT OF MONEY TO BE MADE all of the wolves come out!! Ladies I had a dr in Cleveland clinic operate on me reassuring me all the way and he almost killed me. Be prayerful in all your decisions!XXX

    Reply
  2. RR

    HI Linda! Its RR north of the Red River again. I AM TYPING on my phone waiting for my laptop to decide to turn on.I just clicked this story with recent posts and your asking about perm. NERVE Damage after Mesh Removal? Like you I’ve accepted my nerves have healed all they will & I of course had my removal one week after yours at UCLA. Just wanted to remind people again you can have perm. Nerve damage. longer you’ve had a sling more likely!

    Many but maybe new readers? who didn’t hear I had a mesh bladder/ sling since 2001.Put in w/o my knowledge by Urologist just supposed to “stand by” while my Urologist who had done a successful hysterectomy a few yrs earlier was doing a cystocele and rectocele repair.He did NOT stand by and put a mesh sling in I had NO idea about or knowledge!

    After saving money for a 2nd opinion the HMO wouldn’t pay for except 1st surgeons partner same office! NoT! I had 2nd bladder surgery by 2nd Dr. we paid out of pocket for. HE performed 2nd bladder surgery almost exactly 1yr after 1st where Day One in recovery I woke up with labor type pains. I learned an Urologist certainly had NOT just stood by as he said he would.Instead I had a sling with screws, anchors & all put in. IT felt like I was strung up to my eyeballs! The 1st Dr. said how it was so good because it was part pork products. DR. Raz later verified it was Indeed a mesh product still had mesh material mixed with Pork to make it a mesh! They say there is women’s intuition.1st time I met Urologist some small voice told me “This Guys a jerk!” by his mannerisms, way of talking to me etc. I SHOULD have listened and tell ALL women to do so!

    MAJORITY OF THINGS DON’T HAVE TO HAVE IMMEDIATE ANSWER I FINALLY LEARNED OVER MANY YRS! I asked about a pessary and was told they were ONLY for old ladies in nursing homes! NOT SO! My sister-in-law after learning of my horrors got one and has used it for yrs very successfully. She said it is made of a latex type substance shaped like a “taco” is how she explained to me.Everyone who gets one is fitted for one.She has used one for yrs, said the ease of putting it in & taking it out is very easy. IT does the job of keeping dropped bladder etc. held up just fine she said.

    She certainly was no where close to belonging in a nursing home when she decided to try one. She is Very glad shes done so and happy with her decision. Once she put it in which takes little time she says, she does not have the feeling of everything “falling” out and does every day things with ease! Sometimes old tried and true methods DO work best plus cost less. Probably why SHE had to request one instead of surgery. SO JUST something to keep in mind for those with prolapse! GOD knows I wish I had done so plus know of some good pelvic physical therapists out there who do help.

    2nd surgeon said he tried to loosen my bladder sling he said was too tight, but things he claimed he did Dr. R PLAINLY wrote in report he DID NOT DO!But from what horrors I’ve heard about partial removals I’m glad most was left alone. Dr. R did remove all mesh, hardware he could see other than screws in pelvic bones that had healed over thank Goodness! Because always chance of bone infection or bone Cancer longer those type slings with hardware left in. I WALKED next day after having to use cane few months before from growths mesh made around nerves in right leg.

    But after returning the long ride home my non stop labor type pain plus spasms never got better.So 3rd trip more tests show tiny bits of mesh is left in my nerves too tiny to EVER remove.Learned this last yr company bought stuff to make mesh out of from Petroleum Co. Who told them in emails & letters it was NOT meant to be used in humans! But they bought anyway from then on not telling why! It is similar to plastic type substance milk jugs made from! NO WONDER IT NEVER DISINTEGRATES!

    I can sit about 1hr with Interstem + prescribed pain meds. NOT LONGER or I pay for days.I had my Interstem Adjusted last month. The specialist PUTS different programs on each yr so nerves don’t get so immune to same electrical signals.The adjuster was asking how each program felt? Once I told her “I DON’T want THAT ONE PLEASE!!” She said “Well I’m NOT surprised,the unit is turned Off!” SO moments like that remind me it was WORSE!

    I’d say it’s helped reduce pain 20-25% overall but VERY much worth it! TO have any control over ANY OF your pain 24hrs a day is Something.Plus being able to go out to places my husband drives me close by is better than home bound Always!

    Linda I’ve used my in ground pool again this summer I was so lucky this house had made MANY yrs ago.We have a thermal cover I told you of which makes the water warmer sooner, keeps it warmer.Last yr closed it in Oct.Temp water was still 85-90°! BUT too cold outside! BEST OF ALL since I have Pudendial nerve damage, when I get in a swimming pool at least waist deep I HAVE NO PAIN!!!!

    I encourage ANY sufferer to try out a pool even if you can’t swim, move around in the shallow end. CHECK WITH Dr.1st but most people could safely try! The mini pain breaks in summer have I KNOW helped me keep the sanity I have. Plus I lost 25 pounds this summer of weight I gained some back when I had so many surgeries in 1yr. Just doing it least 1hr day at least! NOT HARD To talk myself into with the NO PAIN Heavenly time I’m in it! Swimming or just moving around the pool burns up more calories than any exercise other than cross country skiing! WHAT a side benefit! I’ve mentioned before but would Love to know if it helps ANY other sufferer like me!

    Thanks again Linda please email or call when you can? tell me of what you went through recently.I have things I need to share with you. You’re a true blessing & friend that God gave me! BLESSINGS! RR

    Reply
    1. lavalinda

      RR, Like many of us damaged women, you take the good you can get regardless of your continuing suffering. I am glad you’ve found an Interstem doctor closer to home to that it can be adjusted to help you. Your story is one of many women who suffered long term without any help. That is why I keep writing and do what I can to let women know the truth about mesh.

      Reply
    2. Roslyn Bourgeois

      Hi RR. I’m just now reading your blog post. Linda sent me a blog article to read after I had written her with questions about nerve damage. You wrote that you had another test that showed you had tiny bits of mesh left in that could not be removed. Please tell me what test you had that showed the bits of mesh. I’m still going thru lots of pain even after removal….
      Thank you for writing. We all have to continue to pray for all that have and are going thru the hell caused by mesh.

      Reply
  3. Sharon

    I could have cried reading this. I was damaged by a doctor with a trocar during a pop surgery. Then followed the mesh damage – my privates hurt, I have groin and leg pain, and walking instability. Some doctors will never admit their mistakes and we are left to wade through the medical maze searching for answers. I will forever be grateful to Linda for putting this site up, as well as Dr. Raz and his team – particularly Dr. Ackerman – and those who helped me through an unspeakable and painful experience.

    I am now dealing with the fallout as the dust settles. I have “hyper-excitability” of the nerves in the region absolutely driving me up a wall. I am getting stabbing vaginal and rectal pain that comes on unexpectedly and randomly. The nerves in my bladder were damaged and I have outrageous urges to urinate every 10-15 minutes.

    I too have incurred massive medical bills. It is terrible – at a time when you are at your worst physically, to be forced to work to pay the bills. It takes a massive amount of will to just get out of bed in the morning. I was sent on a job and coughed and wet myself (NEVER an issue prior to mesh) I had to sit at the front desk of a company and greet visitors in this condition.

    There are those who smell blood in the water (translated: money) who have gotten my personal information from the internet (complain about this! Our personal info should NOT be put out there!) and have called me non-stop from untraceable numbers.

    I have realized that I am going to need a high level of medical care the rest of my life – and there are those who want to try to take what little I have/ what I don’t even have. I have not been reimbursed one red cent for the debt I have incurred, and the bills pour in. I do not know how I will afford to pay for the healthcare I need. Personally, I think we should have a system like Canada’s. The worry about where the money is going to come from adds to an already unspeakable medical/ emotional injury.

    Reply
  4. Sharon

    Google “Only 1 in 5 Medical Malpractice Cases Leads to a Payout” – you’ll learn just how skewed the “system” is. I urge every woman to contact their representatives about this. You’ll learn why when you read the article.

    Reply
    1. lavalinda

      Yes Sharon I knew this which is why women turn to tort cases which is also flawed. For anyone else reading this. http://www.academicins.com/articles/Study_-_Just_1_in_5_Medical_Malpractice_Cases_End_in_Settlements_for_Patients.pdf

      Reply
  5. Sharon

    What is a tort case – do you have a link? This system is ENTIRELY in favor of the medical professionals who took the “Hippocratic Oath” – what a sick joke! It should be labeled “Hypocritic Oath.” EVERY woman on here needs to fight back against this inequity – maybe that is why God let this happen to each of us. I’ll tell you what happens to the “remaining 4” – but you probably already know: we go broke. We are broken physically, financially, and then emotionally. Think of your children! They will likely endure such an incident if WE sit on the sidelines and do nothing. It takes 5 minutes to write an email. Maybe that’s why God threw us all together in this horrendous experience. Maybe God knew each of us has the ability to change the current skewed laws. But we have to be as one voice: one person is rarely listened to. Get your friends and family to do it as well.

    That aside – I am going CRAZY with hyper-excitability of the nerves in my entire region. Has ANYONE experienced this??? I’ve been taking Neurontin and it is NOT calming it down. In January I was diagnosed with “nerve damage” but I don’t know how to calm these nerves down. They’re damaged and must be mis-firing. It is an ungodly sensation.

    I would appreciate any advice. I am taking the Acetyl-L-carnitine, a high-qulity multiple with methyl B12, benfotiamine, omega-3, GLA, NT-factor. The only thing I’m concerned about is I’ve had mercury fillings removed, and the ALA can get shifted around in the brain (per Andrew Hall Cutler PhD) so I only do it once in awhile on 3 day cycles. Has anyone had this??? What did you do to resolve it??? Please help.

    Reply
  6. Anonymous

    I know the hellish nature of nerve damage, and I keep alert to any supplements purported to help it. A product named “Agmatine” was recently put on the market to help with nerve damage. I have not tried it, so cannot state that it works – but it’s a possibility for anyone who wants to try it, and saves the money to pay for it – it’s costly, as all of this has been.

    Some nerve regeneration/ healing was done in animals in Japan using “Methyl” B12 – I read to never use the Cyanocobalamin – the shots doctors give. You have to use very very high amounts. Don’t have the link but you can google it.

    Reply
    1. Linda (Post author)

      I take Methyl B-12 daily. It is helpful.

      Reply
  7. Anonymous

    Why aren’t women sharing on this blog anymore? Something is amiss.

    Reply
    1. Linda (Post author)

      Many more women are sharing this blog through Facebook. I don’t worry about followers and I can see how many people read this blog through the specs. That is all that is important.

      Reply
  8. Paula

    Thank You! for sharing your symptoms. After having intermittent numbness in leg and butt after long drives to the city, I woke up on Dec 6, 2015 to find my nether regions permanently numb. Since then, I have been to all kinds of Dr and had all kinds of tests run, trying to find the source of my pain. I can’t sit, stand, walk or drive for any length of time without radiating nerve pain that starts in my mid butt region down back of thigh, calf and bottom of my feet (which feel tingling with patchy numbness as well). It’s very debilitating and limiting. Through all this time, I heard, “bladder mesh” a few times and it was more like these Dr were thinking out loud vs talking to me directly. In any case, at my wits end, I decided to look it up. I had had a bladder sling (Boston Scientific Lynx, it turns out) put in, in Dec 7, 2006 to fix incontinence. As far as I was concerned, it worked. However, looking back, I would rather have incontinence, than this kind of pain.

    I have looked all over facebook and the web and hadn’t really found anyone else that described the leg pain or groin numbness, til now. I’m guessing the groin numbness is rare. For me it is only in my right leg. I have piriformis pain on my left side, which came on after the right leg pain and is probably due to compensation. (sitting half on a cushion and half off, in order to avoid pressure on right side). Silly me.

    My next step is to see if Dr Raz will take my insurance and see about getting this out. I won’t hold my breath, but for now, I do have hope.

    Thank you,

    Reply
    1. Linda (Post author)

      To make sure you can go to UCLA, be sure you call first to check insurance and then get a PPO insurance which does cost a bit more a month, but you do not have to have a doctor to send you there. You can call up and make the appointment, then go.

      Reply
  9. Janet

    Linda,

    I stumbled upon this blog while searching for information on my nerve pain. You gave me so much information. Thank you. I still need help, I have seen over 10 doctors and had several surgeries and no relief. Final surgery with Dr Veronkis removed all the mesh. I still have extreme pain.
    How did you know which nerve was effected? And what is an Insterstem? I have yet to have a dr confirm nerve damage, But I have all the same problems you mentioned.

    Reply
    1. Linda (Post author)

      Janet I know many women who have tried to get their pain verified and most tests are pretty useless and do not give exact details. I don’t know how affective this is.
      http://orthonc.com/your-health/nerve-testing-diagnostic-tests

      Reply

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