Herbs, Spina Bifida and other Central Nervous System Challenges

Part 1 – The Backstory

I was born in 1949 with a neural tube defect, called spina bifida. I had the first operation of its kind, to close the vertebrae, when I was eight months old. Other than a large scar going across my lower back, there were never any visible signs of a birth defect as I was growing up. I was one of the lucky ones.

I do remember the horror I felt at seeing my scar for the first time. I was five years old and playing with my cousins in a full-length mirror. My mother explained to me that the last two vertebrae of my spine were not fully connected at birth and the doctors repaired the problem, hence the scar.

My mother told me a story I was to hear many times during my childhood: She fed me lots of food as an infant so that I would grow big and strong and be able to endure the surgery that was planned for me. Finally one November day, I was wrapped up in blankets, placed into a cardboard box and carried by my father onto a cargo plane that flew us from the Air Force base in Arizona to a hospital in California, where the operation would be performed. The story details included staying in the hospital for a full month, in the care of nurses who loved and cared beautifully for me, and who were very sad to see me go.

As a teenager, wearing a two-piece bathing suit was a problem for me, as hiding that scar and the redness and swelling around it, was foremost in my mind. I needed high-waisted bathing suits to cover it to my satisfaction. My right ankle was weak and my right foot turned regularly. I went through shoes at a rapid rate due to the twisting ankle and wasn’t comfortable wearing heels. I was never offered a brace to support my ankle, though the saddle shoes we were required to wear as part of our uniform in high school did the trick beautifully as they were sturdy and supportive.

But aside from these minor inconveniences, my life developed normally. At no time did anyone in my extended family ever suggest there was anything wrong with me or that there was anything I couldn’t do. I was encouraged to follow my heart, pursue my dreams and believe in myself. So I did. Friends, high school, boyfriends and later, four beautiful, healthy children, a lifetime mate, a fabulous farm and a career I love all came my way.

I was always acutely sensitive, high-strung, dramatic and easily distracted, but never connected any of that to the operation or the scar. Loud noises startled me and large crowds and lots of activity made me to feel nervous. The ocean, woods, fields, desert and plants specifically, calmed and centered me, always. They became my comfort and my lifeline. I was consciously aware of this loving support from nature since I was a very young child. I was also drawn to art and possessed a distinctly creative, artistic perspective toward life. Art, music, drama, writing, and poetry were how I processed information and feelings.

As a young adult, I continued to gravitate toward natural environments. I discovered Yoga and meditation and dreamed of living on a farm, raising kids and animals, and growing my own food and medicine. This is exactly the projectory I followed.

Working with plants gave me great peace. I was at home in a garden and in the wild. As I became familiar with the medicinal uses of plants I began to use them more directly to soothe my sensitive nervous system and to help me focus on various tasks.

I discovered cannabis in my early twenties and have used it regularly ever since. Skullcap was another early discovery, and a plant that has remained at the forefront of my medicine collection. Roses called to me, insistently, as did oats. Lavender, St. John’s wort and black cohosh also became good friends of mine. I began growing and wildgathering these herbs and many others around my farm haven. Later I integrated some of the fungi that grew abundantly in the woods. It seemed the birch trees that I loved so much sprouted growths along their trunks just for me.

Somewhere in my mid forties, after a couple of decades of enjoying a life filled with intense physical activity…running an off the grid homestead, raising kids and animals, cultivating gardens and all the physically demanding work associated with these things, my gait began to noticeably shift. My balance faltered. My legs felt strangely heavy. I began to trip and fall frequently. I woke up one morning unable to move my left foot up or down. I had very little feeling in my feet. My family physician thought I might have MS. She wanted me to see a neurologist. Fearing the worst, I waited a few more years before following her advice. Though I continued to nourish myself on a daily basis with herbs.

When I finally went in for a neurological examination the doctor said I was much too strong to have MS. He suggested an MRI. That’s when I found out about the spina bifida. To say I was stunned would be the ultimate understatement. I was by that time in my early fifties and this was the first time I was hearing about it.

The doctor said I had a tethered spine. Evidently this is a common result of the spinal surgery. He told me there was scar tissue inside my spine and that this fatty tissue growth, which he called a lipoma, was wrapped around a bundle of nerves going down to my legs. This scar tissue, he predicted, would continue to grow until I was paralyzed from the waist down. He told me quite plainly that soon I would not be able to walk at all and would lose control of both my bladder and bowels unless I had an operation to remove the lipoma immediately. His exact words were that I would “start to shit the bed.” These words and this image hit me hard and fear shuddered through every cell in my body. I felt like I had just been handed a death sentence.

The neuro-surgeon he sent me to said the necessary operation would include cutting through two bones in my back to enter the spine, then cutting away the bundle of scar tissue around the nerves. I would have to lie in bed for at least three months afterwards to recuperate and extreme pain would necessitate relying on narcotic pain relievers for an extended period of time. He outlined risks that included complete paralysis and death.

I returned home shaken to my core, in a state of absolute devastation. The word depression doesn’t even begin to describe what I was feeling. I spent most of my time during the following six months sitting alone in a dark room. I felt like I was being annihilated, that my life was completely over. No longer would I be able to hike in the woods and fields freely, gathering my beloved plants, or take my students on long adventures pointing out trees and plants that I loved and that they might find useful. Teaching at colleges and conferences, traveling independently, all would be coming to an abrupt end.

And what about my kids? They were still so young, barely teenagers. How would we continue to play and have fun together if I couldn’t walk? And who was going to wait on me hand and foot for three months or longer, while I lay in bed in a medicated haze? How would the kids get to and from basketball, snow boarding and track? How would I get in and out of a wheelchair if I were paralyzed? Who would tend the fires, cook the meals and haul the water while I recuperated, or worse, if I needed that kind of basic living support forever after? A million worries occupied my head day and night, my mind was spinning out of control and my spirit was heavy with the weight of fear and unknowing.

In my capacity as a community herbalist I had worked with numerous people who had had back operations and were left in considerable pain thereafter. Many of them struggled with addictions to narcotic pain meds and spent much of their time in a cloudy mental fog, at best. I was well aware of how debilitating such an operation and its after affects could be. I was not in any pain at all at the time, as far as my back was concerned, and certainly did not want to risk trading a relatively pain free existence for the possibility of never ending pain, narcotics and/or complete paralysis.

After months of deep consideration and nearly constant prayer, I decided against having the operation to release the tethered spine. I chose instead to have faith in my ability to heal, to trust in my own life process and embrace my destiny, whatever it was. I decided to turn to Great Mother and to my beloved plants for comfort and healing. They did not disappoint me.

My purpose in sharing all of this with you is to underline my depth of personal commitment to certain natural substances that I have used to nourish my nervous system over the past thirty or so years. I want to share exactly which herbs I’ve used, how I’ve used them and the results I’ve experienced.

I am presenting this information in an effort to provide a number of safe and simple remedies that can be used as both alternative and complimentary medicines for those born with spina bifida.  My goal is to widen the scope of what is generally regarded as accessible for easing the multiple discomforts of living with this particular birth defect and other central nervous system challenges. My hope is that this information will be put to use where it is appropriate and that it will have a positive impact on the health of those for whom it is intended.

I can personally attest to the fact that herbs can and do provide a nourishing and effective complimentary support system for many of the daily challenges faced by this particular group of people who are often dependent on the medical profession and prescribed medications for the simplest of bodily needs.

My first grandchild was born seven years ago with spina bifida and had corrective surgery on his second day of life. This sparkling, cheerful, intelligent little boy has faced numerous encounters with the medical world during his young life, including leg surgery and braces. He is learning to deal independently with bladder and bowel challenges and much more. He has been using herbs as alternative and complimentary medicines under my care since infancy and they have been a Godsend.

I also want to make clear that I am not blindly against surgery of any kind. My twisting ankle finally required the support of a brace, which I wore for a number of years. The brace was uncomfortable, greatly limited my footwear choices and caused my ankle to become deformed. When the pain became too much I finally sought the help of a skilled foot and ankle surgeon who performed an ankle fusion for me. This revolutionized my life, gave me back a huge amount of freedom and left me in considerably less pain and discomfort with every step. Plus I can now wear pretty much any shoes or boots I choose! What a liberation! This surgery was a necessary one that resulted in greatly improved function. So much so, that I refer to it as a miracle.

I will be 66 this month. With the help of a number of well-chosen herbs and prayerful practices, I am still on my feet and walking with the help of a cane. I am playing and dancing with grandchildren now. I work freely around my gardens and wander in the woods and fields, as I have always loved to do. After years of avoiding them, I have begun attending herbal conferences again, sometimes as a student, other times as a presenter. I travel to Italy every year, often accompanied by my now grown children. I do all these things more slowly and quite a bit less gracefully, but I still do them! I remain relatively pain free and I have not begun to “shit the bed” nor do I believe that I ever will.

After sitting in that sweet protective womb of a dark room all those months, held in the loving embrace of Great Mother, I woke up one morning and told myself: “Woman, the fact is you can still walk. So how about you get up, get back to work, do what you can do and forget about the rest.” I took my own advice and I am so glad I did! Sometimes there is no other alternative but to summon all the strength and courage we can possibly muster and carry on.

I realized that when a well-respected, even well meaning, doctor drops a prediction that does not sit well, it is within the realm of perfectly sane choices to decide not to believe it. Denial does serve a purpose. In fact, it may be as good a choice as any other, even when facing serious, life-threatening illness. I’ve read the studies and seen it in action in real life!

What follows is a list of the primary herbs I have found to be invaluable. These herbs, first and foremost, have brought me into deep connection with the earth, from which all healing comes. These herbs have offered me physical as well as emotional and spiritual healing. I consider them my friends and allies and give great thanks that they called to me and that I listened and responded to their call.

Part 2 – The Herbal Allies

Oats Avena sativaTrophorestorative for the nervous system. Rejuvenating and deeply nourishing. I use this herb daily in infusions, usually as a base, blended with other herbs I rotate in combinations, such as skullcap, passionflower, red raspberry, roses, peppermint, holy basil, lemon balm, birch bark and leaves, hawthorn berries, rose hips and more, depending on season, place and what I have available. We grow a lot of oats on our farm in Maine, harvest them in the milky stage and dry them on long screens. I keep a large jar of them on a shelf in the kitchen and throw a small handful into a pot of water, then sprinkle in whatever other herbs I want to use. Milky oats make me feel stable, at home in myself, well nourished and calm. They provide a steadying foundation and impart a sense of equilibrium.

Dosage: To make an infusion place a handful of milky oats into a quart of boiled water, stir and cover and let sit 2-4 hours or overnight. Strain and drink 2 cups per day. Tincture is usually 20-30 drops of milky oats tincture in water as needed.

Skullcap Scuttelaria laterifloraThis indigenous plant is usually referred to as nature’s finest nervine. Its action goes directly to the central nervous system. I use it to tone down excitability, ease stress, to assist with focus, to increase my sense of well-being and groundedness, to relieve pain, to soothe my spirit and to fall asleep. I also use it as a leader; to direct other healing herbs to my spinal column.

Dosage: Drink skullcap infusions daily or as needed, 1-2 cups per day, more if pain is a serious issue. Tincture dose is 10 drops as needed and this can be repeated every ten minutes until relief or the desired outcome is reached.

Rose Rosa spp.I cannot say enough about the ability of roses to nourish and heal, to soothe, astringe and tonify, to create a sense of beauty, ease and grace. I use roses and/or rose hips daily. Roses carry the essence of Great Mother, they make me feel like I am wrapped in her healing cloak, protected, content and at peace. Roses brighten my life and I love sharing them with others.

Dosage: Sprinkle a few roses into every pot of tea you make, use roses freely in baths, as a wash for the skin, for sore eyes, for sores in general. To moisturize the skin apply liberally as an infused oil. Rose elixir is made by steeping fresh roses in a mixture of equal parts brandy and honey, let macerate for 4-6 weeks. Add a few vanilla beans for extra deliciousness.

Lavender Lavendula officinalis Just the aroma of lavender alone is enough to relax me. I keep a lavender pillow in my bed. I use tranquilizing tincture of lavender in a Nerve Tonic formula, along with milky oats and skullcap. I add the essential oil to healing salves and pain easing oils. Lavender is a versatile, dependable nervous system relaxant and a reliable sleep aid. The infused oil is excellent to relieve muscle spasms and other muscular aches and pains.

Dosage: Lavender tea is preferable to an infusion, steep a teaspoon of leaves and flowers per cup of water, 10-15 minutes. Drink to relieve stress and anxiety, before bed to promote deep sleep. Add roses! Lavender tincture, 20-30 drops in water, lavender honey is wonderful, lavender infused oil, apply topically, use as the base for a muscle relaxing salve, just add beeswax…1 part beeswax to 4 parts oil.

Cannabis Cannabis spp. Cannabis is a relaxing, stress relieving, nervous system tonic. It’s been highly regarded as a spirit nourishing plant and has a long history of use in managing depression. When the stresses of daily life begin to mount, an evening toke may be all that is needed to help relax and shed the cares and burdens of the day. Cannabis helps promote deep, restful sleep, is non-addictive and has far fewer side effects than pharmaceutical tranquilizers, sedatives or alcohol consumption. It is also an effective pain reliever. Used topically, as an infused oil, it can be rubbed onto any painful muscle or joint. It has considerable antispasmodic properties, so is excellent for alleviating muscle spasms of any sort. In Ayurvedic medicine cannabis is used as a digestive system tonic and it is widely known as an agent to stimulate the appetite.

Dosage: Smoking, eating, drinking, infused oil, tincture dose is highly variable. Experiment slowly and with small amounts. May cause paranoia.

Black cohosh Actaea racemosa – I have come to love this plant a great deal. I plant more of it every year. It is gorgeous when in flower. I use the roots to counter pain and inflammation; for this use I usually combine it with ginger, turmeric, wild yam and American ginseng. Black cohosh’s action goes directly to the central nervous system so I also blend black cohosh, skullcap and chickweed in a formula intended to keep that lipoma from growing any further. See my notes on chickweed below.

Dosage: 20-30 drops of tincture in water or tea as needed.

American ginseng Panax quinquefoliusI’ve been growing and consuming American ginseng for many years now. I respect it immensely as an over-all nourishing tonic, restorative, rejuvenator and adaptogen. Facing chronic, long-term, irreversible health challenges head-on is stressful. Adaptogens help to modulate the negative effects of stress. They enhance immunity, nourish the nervous, glandular and cardiovascular systems, help boost the actions of other herbs, and offer a great deal of core support.   Other adaptogens I’ve come to appreciate and use in rotation, include licorice, Eleuthero, Schisandra berry, resihi mushrooms and Baltic amber.

Dosage: Eat a piece of ginseng root that is the size of your pinky finger, from the tip to the first knuckle, a few times a week. Tincture dose is 30 drops once daily. Ginseng syrup, a teaspoon to tablespoon daily and elixir, 30 drops or so, are both excellent.

Reishi Ganoderma lucid, G. applanatum and G. tsugaeThe fungi are more like people than plants! They are helping organisms on this planet. They break things down and transform them. They help us to be optimally nourished. They are the ultimate recyclers. Reishi in particular, is a spirit nourishing, immune enhancing fungi with thousands of years of safe use. It is a consistent part of my over-all support system and I am rarely without it. I appreciate it in a simple combination with licorice and American ginseng. I usually make it into a syrup or elixir, which I enjoy adding to a glass of water or cup of tea or cocoa. The honey magnifies the benefits it seems to me. I think of it as a super food for the body, mind and spirit. Other medicinal mushrooms I also appreciate and use often, include the birch polypores, maitake and shitake.

Dosage: One tablespoon of the syrup once or twice daily in water or tea. Tincture, 20-30 drops once or twice daily.

Rosemary Rosmarinus officinalis Another fabulous nervine, a specific for nourishing the brain and enhancing mental function. It’s a nerve protective agent and has an ancient reputation for reversing paralysis. I use rosemary lavishly…I sprinkle it as a spice on many meals, use it in salad dressings, as a tincture, a tea, a smudge, an oil and add it to my bath along with Epsom salts.

Dosage: Rosemary teas and infusions, 1-2 cups daily, liberally as a spice in cooking, tincture 20 drops as needed, infused oil for topical use, add to bath as dried herb in a muslin bag, oil or infusion.

Chickweed Stellaria media This herb has a reputation for shrinking fatty growths like lipomas and cysts. It’s loaded with saponins, which make suds. Think of a dishpan full of soapy water. You dip in a plate covered with meat or fat and voila, it all melts away. That’s what I am hoping chickweed is doing for me. I direct its action to my spinal column by combining it with herbs that move the energy in that direction…primarily skullcap and black cohosh.

Dosage 30 drops up to three times daily daily.

St. John’s wort Hypericum perforatum – Oh, if only I could count the ways that this herb has served me over the years! Pain easing as an oil, applied topically, it gives quick and often amazing results. I use it both externally and internally to relieve the muscle spasms I often deal with in the back of my left thigh. It works like a charm. Spasms anywhere…including the bladder, call for St. John’s wort. I use 30 drops in water and repeat as often as necessary. I also apply the oil liberally to the scar area…to keep it soft, to enliven the nerves in the area, to inhibit further scar tissue growth. St. John’s wort is a reputable and reliable nervine. It restores nerve function. It imparts warrior spirit. It gives me great strength.

Dosage: Steep as tea, one teaspoon of herb/cup of water. Drink 1-2 cups daily. Add roses! Tincture 20-30 drops, repeat as often as necessary. Oil, apply topically as often as needed. Add some to a hot bath for pain relief.

Baltic amber SuccinicusThis is a relatively new addition to my Materia Medica for spina bifida and neurological system dysfunction. But one I have adopted with great passion after noticing benefits almost immediately since I began wearing it on my body. Baltic amber is a fossilized resin produced by ancient Pinus species trees around the Baltic rim, many millions of years ago. It naturally produces negative ions, which are health promoting and necessary for healthy cellular function. It has a strong magnetic charge; the words electron and electric come from Baltic amber, which was known as electron in ancient times. It is well known that healing occurs beneath a magnetic charge…for instance; bones, fractures and muscle sprains heal faster and more completely. Baltic amber contains succinic acid in its outer cortex, and this is absorbed in minute, I think of it as homeopathic, doses when placed on the warmth of the skin. Russian scientists have categorized it as an adaptogen, and they refer to it as a rejuvenative substance. It is proven to protect our cells against radiation. I can tell you that I feel centered and well balanced wearing it and feel it calms and somehow aligns my nervous system and energetic body. I don’t pretend to even begin to know how it does this. I do wear a necklace around my neck, several bracelets on my wrists and one around both my ankles all the time; I don’t remove them for either sleeping or showering. I recommend a well-made, authentic Baltic amber necklace or bracelet to anyone in need of healing or pain relief, especially those of us who require energetic/neurological system support.

Dosage: Traditional Polish directions for use of Tincture – 1 drop on the first day, 2 on the second, 3 on the third up to ten drops on the tenth day, then nine, eight, and so on until you take one last drop on the last, 19th day. This constitutes one round of use. Baltic amber oil is applied topically to rejuvenate skin, relieve inflammation and pain as often as needed.

Hawthorn Cratageus spp. – a gentle nervine, a sweet heart soother. Dealing with neurological dysfunction can weigh heavy on the heart. Walking less gracefully than most makes us feel conspicuous and self-conscious at times. It takes a lot of courage some days to face daily challenges. Holding the fear of what might come at bay can be taxing and stressful. All of this affects the heart and cardiovascular system acutely. I have befriended hawthorn to help me with these issues. It’s a calming nervine and also promotes the production of collagen, the most profuse protein in the body and necessary for the efficient repair of cells, veins and arteries, tendons, muscles, bones and nerves.

Dosage: 30 drops of tincture or elixir once to three times daily. Drink 1-2 cups of hawthorn infusion daily. One teaspoon – one tablespoon of hawthorn syrup daily.

Note: Check herb/drug interations before using any herbs if you are also taking a pharmaceutical medication.  Seek the help of a professional herbalist if you are unfamiliar with using herbal medicines.

This blog post and those that will follow are part of an extended written piece on Herbs, Spina Bifida and other Central Nervous System Challenges.

Next week I’ll post PART 3 – TREATING SPECIFIC SYMPTOMS AND SIDE EFFECTS

About gailfaithedwards

Gail Faith Edwards is an internationally recognized Community Herbalist with over thirty years experience. She is the author of three books about herbs and herbal medicines; Opening Our Wild Hearts to the Healing Herbs, Traversing the Wild Terrain of Menopause and Through the Wild Heart of Mary; Teachings of the 20 Mysteries of the Rosary and the Herbs and Foods Associated with Them. Gail has taught Herbal Medicine in India and Italy, at the Yale School of Nursing, the University of Maine and College of the Atlantic among others. She is the founder of Blessed Maine Herb Farm and Director of the Blessed Maine Herb Farm School of Herbal Medicine. She is the mother of four grown children and the grandmother of two.
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15 Responses to Herbs, Spina Bifida and other Central Nervous System Challenges

  1. maddie says:

    Thank you for explaining so clearly about using herbs,i am looking for as much good advice as
    possible on how to control continual pain and other health issues,i really appreciate the time you
    take to put such valuable information into our hands.Thank you again.

  2. Deb Vail says:

    Dearest Gail, thank you for this writing your beautiful soft flowing story and sharing it here. I am facing neuro and spine problems and am turning to Nature and the Mother for help as well. I found a few things that I had not considered in your list of aids, so thank you for telling us your helpers.

    I can’t seem to find the third follow-up post. Can you tell me where it might be? You may have some other help for me.

    Thank you again for your generous soft spirit ~
    With much loving appreciation…

  3. Marissa Johnston says:

    I read your story and it brought tears to my eyes as I do not usually relate to too many people. The suggestions you made with regards to the different herbal remedies to assist with the daily challenges of this birth defect I am hoping will prove helpful in the near future. Thank you for your touching story. From another woman with Spina Bifida Occulta.

    • Marissa, I am glad you were able to relate and also that you found some herbal remedies that may be helpful to you in the future. Please share your experience with the herbs if you are so inclined. I would be very interested in what herbs you use and the results you have.

  4. John Martins says:

    I have mild anxiety as well as a few other symptoms and I wanted to chime in and say that many of the herbs on this list have helped me over the years as well. I even discovered a few new ones that I will be trying in the future.

  5. Tamara says:

    Gail, thank you so much for sharing this deeply personal story. Thank you for sharing so that others may benefit. I admire the courage you have shown.

  6. Rebekah Dawn says:

    Thank you so much for sharing this story. I am so thankful for you in the world!

  7. Beautifully done, Gail!

  8. Catherine Purkis says:

    Thank you so much for your uplifting words..x

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