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.