A Dr. severed my sural nerve in my foot approximately 2 yrs ago, I have since had 3 surgeries from an orthopedic surgeon to try to help, each time I have had very large stump neuromas, to include the first. I now can not have anymore surgeries to help or I take the chance of losing the use of my foot from knee down. My sural nerve is severed almost up to my knee.
I have pain so much and so often I just don't know what to do. I live in a small town population 5k and tried to make a Dr appointment for pain management. I have tried many Dr's offices but the wait is so long, I have an appointment in mid Oct. I can't wait that long...
The Dr I got an appointment with is about 50 miles away but worth it.
What should I do?? I am taking 1800mg of neurontin daily.
I can't do this anymore.
The Following User Says Thank You to Rachel1972 For This Useful Post: CDLD (05-12-2012)
I read your post here or calmare pain treatment and did some reading about this. Have you tried this and if yes for what kind of pain.
I have a radial nerve that was severed back in 2007 since then I have had 2 surgery's to try to fix the nerve but so far nothing has worked. Now my pain has taken over my entire right arm and upper back and keeps getting worst. Do you think this might help my nerve pain.
My PT back 6 months ago had me try a TENS unit all it did was send my pain up to a 10. Tried for 4 days then had to stop using because of what it did to my pain. Now my PM Dr. wants to place a SCS in my back and I am not having this. Anyway I though I would ask any help would be great..
I am a blue collar worker with a little money, trying to find the next big thing to invest in for my retirement.I found out about calmare in my research and fell in love with the story.I am not in pain or have had any personal experience with the calmare system. I am looking forward to a midwest location so I can take my dad to them for cronic back pain.
PLEASE let us all know if you find out anything about it. Good or bad. I do believe that nerve damage that is not in the act of progressive injury is a great candidate for lasting relief after the calmar treatments.
The best of luck to you hurting 24
Last edited by moderator2; 09-12-2010 at 07:10 PM.
Reason: please do not post websites except as described in the Posting Policy
You have my heart felt empathy as I too had a Sural nerve biopsy, in the year 2000 and I am up now at 3:30 AM because of pain. I try not to own any this stuff so I avoid using the word "my". I also tried Neurontin and every time I told the neurologist it was not working, the dose was increased until it was up to the maximum. At that time I was also trying acupuncture and Chinese herbal medicine which was approved by the medical doctor. The compassion of the practitioners was tremendous help but I still experience pain. Other medications that I tried did not help either. I saw a total of 7 neurologists at the top hospitals in the Boston area for second opinions but they all basically said the same thing. They did not know what could help. Ultimately I had to learn to live with it. One of the neurologist acknowledged that movement was an over riding stimulus that masks the pain. But my experience shows me that when I need to sleep there is no over riding stimulus so the pain becomes a serious complex problem. One neurologist even spoke angrily saying, "you don't want to try another surgery, you don't want to try antidepressants, so you just have to learn to live with it and that's what you're doing." I really wonder if these doctors have any conscience at all? All my investigation of additional surgery showed that it never helped and could actually cause more problems. As far as mild doses of anti-depressants are concerned, my psychotherapist said that I am not depressed and that these medications have to be carefully monitored as they can cause depression. So that is why I said no to that. I've been discussing this horrible problem with a very supportive friend on an on going basis now for 12 years. This in itself is tremendous help. The best thing we could come up with to help deal with the pain is a combination of things to help manage the pain. But first I'll tell you what I understand about why we have the pain. The piece of Sural nerve that is removed is traumatized. The natural thing is for it to do is to sprout and try to reconnect but it fails so it keeps trying. That's why we keep having pain. The neurologists tend to like to say that the problem was is phantom pain so "it won't kill you." In my opinion this is a rationalization. The reality is that people's lives are significantly shorten by pain. So, we have to try to find ways to deal with it. What I think has helped me most is the practice of meditation. I started practicing Transcendental Meditation years before the sural nerve biopsy was performed on me and I've kept it up. I also do yoga stretches and positions that have helped to a certain degree. I also started singing in the church choir and re-read prayers until I memorized them and that was a great form of indirect support and "spiritual" distraction from the pain. Plus I dance regularly, all of this to help fight the pain. But I can only telling you what I think helped me. I think to a large extent, because meditation, yoga & singing & dancing have not stopped the pain, they just help deal with the pain. Experience also shows me that some kind of hands on therapy also helps. Some things I've tried that have helped to a certain degree are, Reiki, acupuncture, shiatsu, reflexology, hands on physical therapy, the McKenzie technique, chiropractic therapies, and some other things. The common denominator is the compassionate human being providing the therapy. I also think that good nutrition is very important. I have read about many different nutritional approaches that you might like to check out. I will list them but first I'd like to say why I think nutrition is important. The lose of sensation after the Sural nerve biopsy can reduce blood circulation and it's easier to get an infection. So movement is critical and extra good nutrition helps combat infection and helps the natural healing process. Physical activity also produce endorphins which help reduce the sensation of pain and help us deal with it. The thing is, it all takes a lot of time as you can see it's now 12 years for me. But movement and good nutrition are very important in dealing with the pain and the state of our psychology. I have read "Perfect Health" by Deepak Chopra, "The Body Ecology Diet" by Donna Gates, "Green For Life" by Victoria Boutenko. I still want to get the book "Healing With Whole Foods" by Paul Pitchford which is like a reference book and an overview of many nutritional approaches. In the early 1970's I read a book called "Diet For A Small Planet" by Frances Moore Lappe that really got me thinking about how I eat. I also read"Macrobiotics" by George Ohsawa that helped me realize a lot of things. Well this is a lot of stuff so I recommend one just consider these four things first, 1. human contact & support, 2.giving oneself a mental break, 3.movement & massage of the damaged area, and 4.good, nutritious food. I think perspective is important too. Most of us are lucky that we can do any of the things I have mentioned. For example, some people do not have access to nutritious food. My conclusion though is that the Sural nerve biopsy is a very bad form of diagnosing neurological problems. I do not accept it's practice. From what I've seen on line, we patients are typically not fully informed. Probably because we would not agree to the procedure if we knew what the side affects are. I am angry with the lack compassion by the medical profession and with the doctors who want the Sural nerve biopsy to be performed. I think this practice should be stopped. It is a cruel and unnatural form of "punishment" to innocent patients in my opinion. I asked my primary care physician if the nerve could be re-attached? The doctor said only immediately after it's been cut. The Sural nerve biopsy is performed as a diagnostic tool. I asked the doctor if the procedure succeeds in diagnosing? The doctor said essentially no, it does not. One doctor even questioned before had the biopsy saying, "why does the neurologist want to do it, it will not be fruitful." Recently I asked my primary care doctor, "if the procedure were to successfully diagnose a neurological problem is there an effective medical treatment?" The doctor said, "NO." So dose this make me angry? Yup, it sure does and I think its important to feel my anger because the experience is a life long trauma. Now you and I can only try to find good ways to deal with it. I wish us all good strength and good courage. With love and support, Zaferi
Last edited by zaferi; 04-16-2012 at 03:38 AM.
Small dose anti depressants are known to help pain and often worth trying. Perhaps consult with a few pain management doctors to find their perspective on the use of these medications. My PM doctor is in favor offl them especially if meds like Neurontin or Lyrica haven't helped. Neurontin has helped me. I first tried Lyrica. It was name brand, thus expensive, and I did have some finger swelling (known side effect). Later this year or early next year I plan on further cervical spine surgery to relieve some of the nerve pain.
Welcome! Thanks for sharing with us. In the future, I suggest you break up your text into paragraphs so its easier to read. I agree that anti depressants can have pain relieving properties...you don't need to have depression to use them, although many with chronic pain could benefit from that affect of them also. There are a couple of them which have black box warning that they can worsen depression, cause suicidal thoughts, etc, but as far as I know that is a very rare side effect and mostly found in those under 18 or 25 (depending on the med).
You hope when a doctor suggests a med it is because they think the potential benefits outweigh the risks for you. I do suggest everyone gets multiple opinions. In your case I think the psychotherapist was ill-informed in how anti depressants can help treat chronic pain. Sure they don't work for everyone and it can take some trial and error, but I think for most in chronic pain they are worth a try.
It is traditional treatment hierarchy to try the anti depressants, anti seizure meds (Lyrica, Neurontin, etc, especially for nerve pain), muscle relaxers, injections ((nerve block, epidural, cervical), etc, before narcotics. If you refuse one single treatment they may label you as impeding your own progress. There is also massage, TENS unit, and implantable nerve simulators off the top of my head.
I have unfortunately also had numerous doctors give up on me. Some don't like to treat certain conditions (find them boring), give up when someone is a more difficult patient in that they don't respond to the first few treatments, etc. You just have to keep going and find a new doctor. You are right that a lot of us with chronic pain aren't going to find a cure...we are going to find treatments and lifestyle changes that help us, and learn to cope. Best wishes.