Explaining Nerve Pain

Yesterday I received phone calls about some media coverage about a woman who had her mesh removed and in three days she was ‘pain free’. They were upset because three days out of surgery there is no way to know how you will do long term. Many women ‘think’ they are pain free for as much as six months after removal but then their pain comes back with a vengeance. They are stunned because they felt by getting the mesh removed they at last had got their life back.

I have written so much about this but one of the reasons women do not get well is because of the way the sling was anchored to your body. They could be called arms, anchors or staples, but these attachments cause a great deal of nerve pain that takes away your life and you wind up with permanent damage and you need a walking stick, walker or even a wheelchair.

I understand nerve pain because I live with it but I don’t understand the way nerves act and how my brain reacts to the messages it receives. I just know I am in pain. I also know that because of these slings thousands of women live in pain in their groins, hips, legs, and feet. It is very debilitating to say the least.

Over a year ago I noticed more comments on my blog from a woman who sounded very bright and knows a lot. So I emailed her and we went back and forth and spoke over the phone. I learned she had been following this blog and she had just had full removal by Dr. Raz. Because of her knowledge I asked her to join our small group of women who help so many women get through the worse time of their lives. This young woman had had a full career as a chiropractor but I also noticed she is quite brilliant in many things. I knew she would be an invaluable asset to help other women. Her career changed because of mesh, but she is using her knowledge to train and educate other women.

She herself, in her own State has formed a small group of mesh injured women who want to get better and move forward with their lives. By doing so she too is learning how mesh slings affect other women’s bodies and that helps all of us. This is because we are all different and our injuries vary. This morning she sent me this wonderful write up she did to explain to her group why they have their pains in the oddest of places that do not seem to be associated with a mesh sling. By doing so this gives women the power to seek help outside those doctors who insist mesh is not an issue and is not causing their pain.

I hope by her allowing me to share this with you, you will understand why your feet are involved when no one else is willing to give you answers. I also hope this will stop women from having surgeries they do not need, that will also leave them with even more health issues.

I am in touch with this young woman daily along with my other wonderful helpers. As of late my blog has been even more active which means mesh is still going into women at an alarming rate. You may be a recipient of our caring emails to get you going in the right direction or even make you think in a different way that mesh IS your issue. However please understand this is NOT a support group, it is a blog. I now go through comments to approve or trash them if they are truly controversial. That is rare however. I can only do so much and therefore I have to choose according to your comments who I will introduce this small band of wonderful women to. Please understand we are all mesh injured and still live with our injuries and therefore we cannot take on every case.

At the bottom of this blog I am going to include a link that may help you if you believe you have pudendal nerve damage. This was written by another mesh injured woman who is also quite brilliant. It is because of women like these two that women like us who have no medical knowledge can learn and deal with their injuries. It is also good to know the one thing that most doctors will deny when you go back to see them. It is the mesh! Now read what is written about why you are dealing with so many strange pains that you don’t understand.

I truly thank these women and all those who are dedicated to raising awareness that mesh is causing serious damage to women all around the world. They are invaluable. This young knowledgeable woman was writing this to help one of the women in her small group of mesh injured women. If you have questions, please leave them in comments and they will be sent to her to answer. Now read on.

Pain is something that is perceived and interpreted by the brain. Pain is not something that happens at the periphery..ie your foot, arm, etc. In fact, if you have damage to the sensory cortex (where these impulses are interpreted) you can have no pain even with serious injury to a part of the body. This is an important aspect of neurology to understand when discussing pain signals and a phenomenon that happens called “smudging”. Let’s start at the beginning.

When the signals come to the brain from the periphery, they go through several relay stations until they finally arrive at the sensory cortex. In the sensory cortex of the brain, it is divided into sections based on location of body part and how many afferent (incoming) nerves there are feeding from that body part to the sensory cortex. For instance, the hands on the mapping show some of the biggest sensory input to the sensory cortex ie…have some of the most signals in number (based on its relative size in the mapping), and is very specific to a determined location on the sensory cortex. This concept is important to understand as it plays into how damage to a urethra can cause foot, leg and even hip pain.

The sensory cortex therefore has a role of determining location of the impulses it is receiving and shuttling them to the appropriate place on the brain map (homunculus) so that your body correctly perceives pain in the correct locations. For instance…if you burn your hand, you don’t want the sensory impulses from the hand to be misdirected to say the lips. If that were to happen, you would perceive burning in your lips and not your hands. This process gives us body sense or the ability to tell where our body is in space, vibrational sensation, pain sensation etc.

When you have chronic pain for a long time, the body’s ability to localize the pain gets compromised as the body tries to dampen down the pain signals coming from the periphery to the brain. Eventually, the spinal cord becomes overloaded with signals coming up to the brain and it begins a process of “centralization” or recruiting areas that really aren’t affected by the actual problem to start to share the love and take on some of the pain signals. So, pain that begins in the genital area in our case, starts to become centralized and it starts to recruit areas to help compensate for the overwhelming number of signals coming up the cord. Doctors don’t really understand this process completely, but when this happens it causes a misdirect to happen in the sensory cortex and a phenomenon called “smudging” occurs at the sensory cortex level. So now that we have discussed how this happens, look at the homunculus man picture I have here and look how close on the sensory cortex the feet are to the genital area. It isn’t a large leap to say that the neurons in the genital area are then activated and because of the overwhelming amount of them, it recruits areas close by to sense the pain as well…this is smudging. As you can see on this diagram, the feet are right there by the genitals, and then it works up the leg to the hip. I know this is how my pain progressed and I have no doubt this is what happened to me and I believe it is what is happening to you as well. The brain is just doing what it can to deal with the problem, but it makes another problem in the process. This is part of what happens in CRPS or RSD. If you notice, the foot sensory area actually overlaps the genital area….hmmmmm….my PT says she sees women all the time with no mesh who have pain in their genital area with burning feet. She says that if they correct the pelvic problem, the feet stop burning. I noticed this was true with my surgeries. My feet were 50% better after the first surgery and after the second probably 80% better. They really don’t bother me unless I stub my toe or hurt it somehow…so it is still overly activated, but just not all the time anymore.

There is another thing we need to check on you as well if your sister has this too. There is a genetic mutation that can be present which in simple terms, makes it so that you can’t break down folic acid. Folic acid is a B vitamin that is critical in many, many functions of the body including nerve conduction. If you have bad copies of this gene, it may also lend some insight as to why you are having such trouble. They are finding this mutation in many people who have chronic pain. I have found it 9 times out of 10 if I test for it…it is far more common than people think. It is genetic, so it runs in families and you would have it for your whole life. It isn’t something that is acquired. That isn’t to say that you would have had pain your whole life, just the mutation. As you get older it becomes more difficult for the body to overcome the inability it has to methylate the folic acid and you start to have problems such as pain, cardiac disease, brain fog, etc… I can get you an order to go get a blood test for that if you would like, as it is easy to fix if that is part of the problem. I’m happy to help you with anything I can. Hopefully, this was an understandable explanation of this whole smudging thing…it is difficult to explain simply and I’m not the best at bringing things down to a lay level sometimes. Let me know if you need clarification on this…J

I don’t know how you feel after reading this when I read it I felt she did an excellent job of bringing this down to our level of understanding and I wanted to share it with you.

15 Comments

  1. Anna

    Thank you Linda, This explains alot…I have pudendal nerve damage like this and can not even bend over or squat as i almost pass out! You are a wealth of knowledge, so happy Ive met you!

    Reply
    1. lavalinda

      Anna I hope this also helps you teach your family that you are not faking it. This is a huge issue for thousands of women and it is ongoing.

      Reply
  2. Lisa

    The show on The Doctors yesterday was great news coverage that the mesh is a REAL problem. Finally some validation…however rare it is, I also was pain free the day of surgery, and was weak and sore for a period of time. I think this lady and I had a tvt for sui, and for myself there were no arms. These seem to be the most successful surgeries. That being said, I think the majority of women have a much longer recovery, and a good percentage have residual nerve damage, either from initial insertion, subsequent partial removals, the removal itself, or adhesions/scar tissue from any pelvic surgeries. Who will recover and who won’t? Will it take 2 days, 2 weeks, 2 mos, or 6 mos? No one knows. It is a crapshoot. Every woman’s gynelogical history is individual to them, and every mesh brand, whether for prolapse or sui has it’s own set of complications. I had a FULL removal at ucla in 2012, and I am now completely healed. Ucla (310) 794-0206

    Reply
    1. lavalinda

      Lisa thank you for posting this comment. All we can do is give the truth and let other women decide for themselves what they should or should not do. We just hope they get it right the first time.

      Reply
  3. angela

    Ty so much for this very useful informative post.

    Reply
  4. Nancy Mikitka

    Thank you, Linda and also to the lady who wrote up this wonderful information. The info is so revealing and helpful to explain the reasons for the pain so many of us have or have had.

    Reply
  5. Mary PAt

    Thank you so much for this insight. I had my second removal two years ago. Still have anchors in bones that cannot be removed. Nerve pain only gets worse. I have noticed that nerves seem to talk to each other and get activated throughout my body depending on the amout of activity or inflammation present. This article clearly explains that phenomenan. I wish someone could tell us how to calm the nerve pain or better yet prevent it. Is there any treatment for nerve paid besides morphine or lyrica and neurontin? I cannot tolerate any pharmaceutical drugs. I get all the nasty adverse reactions. I think I will be spending the rest of my life living with, trying to calm and prevent nerve pain. I hope this brilliant doctor reads this and shares her ideas about treating or living with nerve pain. Thank you. I would love to speak with this brilliant, kind doctor. If you would be so kind, please get my email from Linda.

    Reply
    1. lavalinda

      Mary I will ask her what she does to help her nerve pain.

      Reply
    2. lavalinda

      Mary when we get answers I will post it here.

      Reply
  6. SARAH

    At the age of 26, I had sarcoma cancer removed from my abdomen wall 3 years ago. I thought after the surgery, my life would go back to normal and begin to heal from the extensive 7 hour surgery I had. A few months after the procedure I begin feeling an excruciating burning, pinching pain. The area would be warm to the touch. After several ER visits and multiple visits with the surgeon, I found out that he had placed a permacol mesh inside of my abdomen due to he had taken my left abdomen muscles out. He states that if he hadn’t placed the mesh there then my abdomen would have a huge indention in it because the muscles are gone from that area. I now go to a pain management doctor but what’s going to happen when my body becomes familiar with the pain medications. I really want to get this mesh OUT and live normal again. I am a wife & the mother of 2 children. I live in Tulsa, OK and cannot find any physician who understands my pain or wants to remove this foreign object in my body.

    Reply
    1. lavalinda

      Sarah You will need someone who can remove it and repair you without mesh and I do not know exactly who you can do it but click on the link at the top of this blog and go to hernia specialists and start calling. Someone must be able to help you so don’t give up.

      Reply
  7. Michelle

    Thank you so much for sharing this information! I am a 40 year old single mom that recently had the mesh removed after 4 years of suffering. I told the surgeon not to implant mesh since it had already been recalled in 2011 and discovered late last year he not only implanted it, but said I agreed to it in the surgical reports. I was naive in hoping I would be back to work 7 weeks after surgery and am now being told I probably have osteitis pubis (inflamed pelvic bone) and potentially months more of recovery before I can return to work. There is groin and leg nerve pain that causes me to limp after a few minutes of sitting and I hope that PT will heal that once I can go to PT again. I am trying to learn how to stay calm and have faith that my job will be protected and money will come in, but the biggest discovery for me has been the mental aspect. I thought I was going crazy for years and just now am finally beginning to grasp the full scope of the mesh damage. It is so misunderstood and I really appreciate you taking the time to share information for all of us. Blessings, ~Michelle

    Reply
    1. lavalinda

      Michelle I am always listening to women to learn more things to help and I will share what I learn. Recovery is very long and slow and you have to give yourself a lot of time to heal. Mentally it is very hard on you and you need to know it is okay to go through it. Maybe this blog will help. http://meshangelnetwork.com/2012/12/mesh-removal-blues/

      Reply
  8. beth

    Great Blog Linda.I am doing real good!4 weeks post op total removal by Dr.Raz.
    My right leg and hip hurt some, mostly at night. Im hoping time will help this.
    thank you Linda!
    🙂 your little friend in Tn.

    Reply
  9. JKA

    Great informative article. Thanks for reposting, Linda.

    Reply

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