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Posts (7)

Sun, Sep 8 7:57pm · Acupuncture helpful for peripheral neuropathy (PN)? in Neuropathy

I tried acupuncture regularly for months and never saw any difference in my pain level. I suffer from severe pudendal nerve entrapment and have for about 17 years.

Tue, Sep 3 12:37pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Dear Brad, I know your post is quite old so you may have already gone down the surgery path. I have severe pudendal nerve entrapment and have for almost 20 years. I am about to turn 58. I, along with my neurologist did the home work to find me a surgeon. I ended up having bilateral pudendal nerve entrapment surgery. I had to travel from KY to Minnesota to get it done. I had to make three or four trips there prior to the surgery. Keep in mind that the pudendal nerve is quite long and wraps around other parts of your body. Looking back I don't know how a determination was made as to where to actually go in on both sides. I spent a week there and had a five hour surgery. It was a total failure. All that hope I had was gone and I still had to recover from a major surgery. I'd be interested to know if you had surgery and if it worked. I do have an implanted Medtronic pump system and have for about ten years. It has a compound of morphine and marcaine and is just delivering a small dose into my spine that helps block the pain signals being sent to my brain. It hasn't fixed my pain but it has done enough to keep me from jumping off of a bridge. Over time, I have learned that stress is a big flare inducer and I have worked hard to train my brain to push the pain to the back of my mind. For many years it was all I could think about. I hope you have made some progress since you posted. Believe me when I tell you I feel your pain and sympathize. Joan

Sat, Aug 17 1:38pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Thank you. I have tried that but may revisit.

Wed, Aug 14 7:30am · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Hi Chris, Wanted to add a comment after reading your message. To add one of the goals and advantages to a pain pump versus oral pain medication. Prior to getting the pump I was taking a large dose of oxycontin every day. In order to qualify for a pump I had to detox from my dependency on oral narcotics and wait six weeks (which gives your brain cells time to return to normal as they are different when on oxy). The reason for this and one of the purposes of the pump over oral pain meds is the small amount of medication that is delivered daily. My pump (via implanted tubing that is sewn into my spine) delivers .328 mg (yes there is a . in front of the 328). The meds are designed to sit in your spinal cord and block the pain signals being sent to your brain. I'm not a doctor but I think that is how it works. In other words, the dose is so small it doesn't give you the side effects of oral pain medication. I read about your friend not being able to drive and wanted to send this additional comment. I have had a pump for about ten years and have driven and worked without incident. I was given no restrictions on driving from the doctor who manages my pump. In addition, I don't have the brain fog I had when I was taking the oxy. My dose, even as small as it is, will show up in a drug test. Hope that makes you feel better as you consider where to go from here. All the best, Joan

Wed, Aug 7 6:10pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Hey Chris, I have not tried medical cannabis. I don’t think it is legal in KY. I did try CBD oil but didn’t notice a difference. I gave it plenty of time to see and it didn’t do anything. I am so glad you have relief and happiness! Joan

Mon, Aug 5 10:56pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Have you discussed an implanted medication infusion pump (mine is a Medtronic). It’s best to go to a good Interventional Pain Management Clinic at a university or good hospital. I have suffered like you mostly in silence for 19 years and tried everything including invasive surgery. The pump is the only thing that kept me from jumping off a building. It doesn’t completely relieve the pain but it makes it manageable most of the time. You learn your own irritants over time. Stress is a big one. The pump requires no outside controls and lasts about six years. I have to get a refill about every 70 days. It contains morphine and Marcaine but does not get into your system like oral narcotics. It drips a minimal amount in your spinal fluid that acts as a block to keep the pain signals from going to the brain as much. I am on my second one (had pump for about ten years) and also supplement with gabapentin. Not a perfect fix but I have tried everything I have read on this forum and then some and it is the only thing that gave me anything close to a normal life back. Your comment about suffering in silence broke my heart and I had to reply because that is me. Suffering in silence for 19 years.

Sun, Aug 4 11:14pm · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.