Spine and Pain Books
Below are some of the books and web resources I used prior to getting my lumbar fusion surgery.
I also share a very long personal account of my back history and what led me to eventually opt to have a 3 level fusion surgery. Warning: that is a long read – possibly more for my own recollection later more than for you! But for those who might need courage in facing their own back issues, I hope to give you hope. Towards the end, you’ll see a picture of me hiking at Lake Superior in July 2021. Proud of how far I had come – feeling as fit as I could possibly be given all that I had been through and achieved! I am happy to be supportive of others who face back issues in any way I can.
Back Mechanic – The McGill Method helps you to figure out the source of your pain and begin to heal without needing to interact with a physical therapist. Ultimately I found it a first good resource, but I really preferred having an excellent physical therapist.
Explain Pain – I was lucky to find this expensive book at the local library ‘Sale’. It is an excellent resource with great drawings, for the non-medically inclined. Look for the latest version only. It is intended to be bought by doctors to help them teach their patients.
Do I Really Need Spine Surgery? – written by a back surgeon who noticed that back surgeries were often over prescribed and not effective. This was a critical resource for my decision. From this book, I realized I had not done enough to ‘own’ my own health and well being, which led me to delay surgery while I strengthened my back and core, lost 40 pounds and improved my healthful eating habits.
Aches and Pains – This 3 volume set is a fascinating group of essays written by a well known British physiotherapist who was determined to improve delivery of physical therapy during the course of his career. To do this, he became a detailed observer and a dedicated learner and teacher, incorporating troves of medical information relating to the nervous system as well. Willing to admit his own failures, and pivot numerous times with techniques, he shares these for the betterment of all. His writing is accessible and entertaining.
https://www.spine-health.com/ – Excellent educational videos.
https://www.spineuniverse.com/anatomy/nerve-structures-spine – Great overview of which nerves exit which part of the spine and where they go to.
Intervertebral Disc Diseases PART 2: A Review of the Current Diagnostic and Treatment Strategies for Intervertebral Disc Disease – Excellent diagrams in here on the diagnostic path for treatment.
Virginia Spine Institute – My surgeon was Dr. Christopher Good. He sometimes uses Augmented Reality + Robotics but he is passionate about his craft for personal reasons. His own father suffered a ski lift fall when he was just a few months old, and he grew up vowing to be a surgeon to help people avoid the pain he saw his father suffer through.
My Back Story
This is the story of my back as it was, as it deteriorated, and as it is now, post fusion surgery. All of my decisions were made alone after years of trying alternative methods of relief and with consultation with many specialists and surgeons..
The spine is an incredible structure of the human body. It is both beautiful and complex in the way it houses the nervous system, which feeds to and collects sensory, motor and other information from all organs and extremities of the body. The spine flexes by way of ligaments, tendons, and intervertebral discs allowing us to bend, twist, sit and stand safely…. until it doesn’t.
But I didn’t always know these things.
I was first aware of my back in 5th grade when I was about 10 or 11. At that time, I was envious of all the girls at school who could do in-the-air flips and cartwheels perfectly. I could not easily maintain a handstand. I was quite clumsy possibly due to congenital ‘loose ligaments’ which many in my family have.
My next memorable encounter with my back was just out of college. I woke up one morning unable to stand straight. The emergency room sent me home with pills. The chiropractor I visited next fixed the issue straight away with a manipulation. This began a lifelong appreciation of alternatives to Western Medicine.
1990s
This period marked the launch of a decades long career in IT. During this time, I paid little attention to my physical fitness, eating habits and weight. This period was likely an important missed opportunity to attend to my back strength, movement, and diet – that would have possibly minimized later issues. But I didn’t know that at the time.
2000s
During the mid 2000s I had to have surgery on my right foot for a navicular bone spur. The recovery from this surgery took a full year. I learned from this stalled recovery that one should not shun pain medication if it could mean successful physical therapy intervention. After ½ year in agony, limping around, I finally took a regular painkiller (diclofenac) and started therapy. Finally I could walk again. I had huge learnings about post-operative care. Surgery isn’t the end of the matter, by any means. And the patient needs to self advocate for that care, because the surgeon largely wipes his hands of the rehab process once surgery is done.
2015 – Disc Herniations
In the winter of 2015, I had several painful disc herniations. A surgeon I visited with my first MRI of my back at that time told me I would one day need lumbar fusion surgery. Because I couldn’t not work at that time, I agreed to have 5 epidural injections in a 6 month period and I started to see a chiropractor regularly. I went from having severe pain to able to work and function. I never followed up for regular scans and analysis.
I did manage to fit into my hectic and changing life some physical therapy and a new exercise regime along with a new diet. I lost a lot of weight and gained strength in my core. This generally helped to keep my back from further injury. Nevertheless my L4-L5, and L5-S1 intervertebral discs continued to lose height such that by 2020, they almost were only faintly visible on the Xray – almost completely gone.
2018 – 2020 New Symptoms relating to my Spine
In 2018 I started to feel tingling in my left foot. I didn’t know what it was, but recalled that my mother had suffered from tingling in her feet as well. I began to educate myself to learn what the cause might be. At this point I was not relating it all to my back issues. That first neuro-surgeon in 2015 had not mentioned the potential trajectory of his finding.
In 2019-2020 the tingling increased. During this period I was employed full time again and had little time for doctor visits. My exercise became scant, and I started gaining weight. My back felt uncomfortable, but there wasn’t any pain.
It was not until 2020 that I started the diagnostic process by visiting a neurologist. I had had no obvious back symptoms between early 2016 and 2019. In a series of specialist doctor visits that the neurologist referred me to, we collectively ruled out these possible causes: small fiber neuropathy, vascular issues, diabetes, and vitamin B deficiency and Lymes (though we don’t have definitive evidence of this – it is tricky to rule this out).
There was a finding though: An EMG study measuring the rate of nerve signal transmission between the spine and the extremities showed a mild slowing of the signal on the left side nerve exiting the L5-S1 and travelling down to the left big toe area. The neurologist told me to seek out a spine surgeon which I did. I had a solid positive referral from a neighbor who herself had just had surgery.
The Very Long Path from Diagnosis to Decision
The spine surgeon used the EMG data along with xrays and MRIs as the foundation of his diagnosis of radiculopathy (referred pain from spine to an extremity). He believed that a spinal fusion surgery would help my situation or at least prevent further nerve deterioration of the nerves.
He claimed the tingling and burning sensations were caused by the narrower space in the vertebral opening (foramen) that allows the nerve exiting L5-S1 vertebra to send and receive signals down the leg and to the big toe area. The nerve had ‘likely been damaged’ from the reduced space, he said. During this diagnostic period, sitting for longer periods also became uncomfortable. While most people experience the same structural issue as sciatic pain and pain traveling down the leg, mine was starting at the extremity. It is rarer, but possible.
In August, just as I was visiting a surgeon to explore surgery, I decided to join a vegan diet program run by a local very unique restaurant. They provided 42 meals for 3 weeks and 8 hours of zoom education calls. This was a real gift, and I completely bought into this new way of consuming food. At the same time, I started seeing a physical therapist and doing all and any research I had time for (at this point not working and having lots of time to attend to my health). Between Sept 2020 and April 2021, I lost 40 pounds and have stabilized at my current weight since then. No oils, no refined or processed foods, dairy, meat, fish. More: spices, seeds, legumes, nuts, root vegetables, whole grains and fruits. I’ve never felt better from a digestion and weight standpoint. But none of that fixed my tingling and numbness.
Surgeon’s recommendation: Double spinal fusion surgery involving 2 surgeries spaced a day apart, and a 4 day, 3 night hospital stay. I initially agreed – because I so much wanted a solution to the mind-f*@#$ distraction that foot tingling causes. I saw the x-rays. I believed my spine structure was ‘flawed’. In reality, this loss of disc is a normal aging process.
In late September, I scheduled surgery for October 20th. I had to guarantee to have someone to stay in my apartment with me afterwards for about a week. Neither of my kids would be willing or able to do that and being divorced, and with most of my friends in the ‘virtual’ realm, I faltered.
Because of that, I backed out of this original surgery date. Although I had been able to enlist help from a willing cousin, Elena, for post surgery care, I had been recommended a book called: Do I Really Need Spine Surgery?. This book was full of advice by an experienced surgeon about when to have and when to decline surgery. He said if you do need surgery, you should not put all your eggs in that basket expecting for the surgeon to do all the work. To heal and recover you had better be in your best ever shape. So, while I still wasn’t sure about the risks and benefits, I did need time to create a support group around me and find ways of receiving post surgery care without over relying on my cousin. And I did need time to work the the physical therapist to get in my best possible shape. That along with the diet gave me more confidence in my own internal resourcefulness even though the tingling wasn’t improving. It was gradually getting worse.
With my expert out-of-network surgeon, I would also be facing non-covered co-pays, deductibles, uncovered hospital expenses and I would likely need for a second surgery in 7-10 years to fuse the L3-L4 vertebrae. That spinal segment would eventually become unstable as a result of the strains caused by immobilizing the L4-5 and L5-S1.
There were no guarantees. I might experience additional surgical damage to the nerve, making the condition and pains worse.
The benefits of surgery might include a ‘possible’ reduction in foot symptoms. More definitively the surgeon projected that my foot pain would at least not get worse. The nerve root exiting L5-S1, when given more room, would possibly also heal. There were however no guarantees to any of this.
In mid-October, and right on my birthday October 17th, my back back gave out as I leaned down to put away a lemon juicer. Something slipped, or twisted, or pinched a nerve. I was immediately spasming in the lumbar area muscles and lay down. I couldn’t get up. I literally could not use my legs to stand up and summoned my son who lives 1/2 mile away to help me get up to go to the bathroom. It was scary emotionally as I was living alone and he was not available at all hours – being on a demanding job as a paramedic.
I called my spine surgeon and got a prescription for steroids. After a few days of asking for explicit help from my son and a neighbor for practical matters, I was able to stand, walk alone, and get my meals again. After a week, I was almost back to normal, albeit with some back pain (a feeling of pressure – bone-on-bone), and hormonal dizziness from adrenal glands adjusting to being off of the steroids.
I don’t know anything about the significance of that incident with respect to back surgery, but it scared me. Could it happen again, many times? I was grateful that my hard work at physical therapy meant that I recovered quickly – I had built up good abs, thigh and even back muscles, and a week on steroids and bed rest as I healed didn’t take that away.
In November 2020, the numbness, tingling, and pain in my feet kept increasing. My back, though often uncomfortable, was getting stronger with therapy, I was losing weight with my diet and generally thought the situation to be beyond my capacity to reason about. Here I was doing everything I could trying to avoid surgery, yet the symptoms were increasing in my feet. I needed more opinions.
I enlisted a different neuro-surgeon to look at my MRIs (a friend of someone in my family). And I had my neurologist look at the MRI report. Neither felt there was a need for the fusion surgery. I learned later, neither had seen the x-rays that the surgeon had taken – which were of my back when I was standing. The MRIs had been taken in a lying down position. My spine surgeon said their second ‘opinions’ ignored key evidence which is that when standing and with the weight of my torso and head pressing down on the spine, the space for the nerve is more diminished than when lying down.
I had to think about all of that. What my surgeon said made some sense. Symptomatically, the sensations are less intense after lying down for an hour or just when waking up. They worsen on ambulation. Surprisingly, this still wasn’t enough to convince me.
In September and October of 2020, I had also visited an orthopedic doctor took who x-rays of my feet and noticed signs of thickening of the metatarsal bones. He said that my foot structure is causing the metatarsal bones to hit harder on the ground than they should because my first metatarsal is shorter than it should be on each foot. This doctor prescribed metatarsal shoe inserts, and told me to stay off my feet until the nerve swelling goes down. He didn’t commit to whether this was the source of two years of tingling. He diagnosed: ‘metatarsalgia’. It is impossible to stay off my feet 100% as I live alone, but with COVID, being in a 700 sq ft apartment most of the day, I did not need to walk a whole lot. But it didn’t go away.
At some point, I had received a glossy flier in the mail that I almost threw away. My Blue Cross insurance utilizes a service called Best Doctors that helps patients get an informed second opinion. At Blue Cross expense, Best Doctors gathered up all the documents, images, and MRIs from as many specialists as I had, and consolidated them. Then a doctor interviewed me. She transcribed the story for their selected spine surgeon who rendered yet another opinion. I received the opinion in December 2020. The verdict was again similar to the other opinions, with caveats. He thought surgery was warranted, but that a 2 level fusion going through front and back seemed to him like an ‘invasive’ unnecessarily aggressive method to try to bring relief to my nerves. He suggested a laminectomy.
My own surgeon did not agree, and I eventually just came to trust my surgeon’s opinion – the person who had worked most closely with me and had all my records. But as a result of this Best Doctor’s write up, I got my surgeon to agree to a recommended extra diagnostic procedure called a Discography to determine the viability of L3-L4 prior to the surgery.
The discography was done as an outpatient at the hospital in which they injected dye fluid into my various discs to see when and where I felt the most pain. This was a simulation of pressure with liquid, with me half sedated – conscious enough to scream or say where the pain was without being told which disc the surgeon was targeting. I was essentially blind and guessing. In the end, it ‘seemed’ that L3-L4 generated some pain in the right leg. As a result of that, the surgery ended up being done on 3 levels L3-S1. L3 had shown deterioration on the earlier x-ray and we both felt that addressing this now vs. having another surgery in future years would be the best for me.
The surgeon initially had not recommended including L3-L4 fusion because of the more severe restriction it puts on the back long term. L3-S1 fusion is no cake walk, and despite being on several Facebook support groups where others had undergone 3 level lumbar fusion, I really did not fully understand the implications that this surgery would have on my ability to bend, flex and do some fairly ‘run of the mill’ things. Maybe it is better that I didn’t know, but I doubt it. I wonder if I would have decided otherwise.
Feb – July 2021 – Surgery and Recovery
Surgery took place on Feb 23rd, 2021 through a 4 inch incision on my front. He cleared out the discs and placed 3 titanium cages in their place and placed cadaver bone with a bone growth stimulant in to the cages to connect everything together. He placed plates and screws to secure everything on the front side. Two days later on Feb 25th, 2021, the surgeon opened me up in three places on my back to do further bone clearing work around the nerves and to place screws and rods in my back to keep everything stable. A set of long screws connect my S1 to my sacrum for further stability.
I had hired an agency companion to stay with me overnight for the first week. My kids came and went during the day that first week. The next three weeks were quite hellish with so much nerve pain that I wanted to jump out the window. I developed extreme hip pain akin to Bursitis and could barely walk. Because of my lack of regular movement and walking, I also developed a blood clot in one of my legs, which resolved with treatment.
I started back with physical therapy after 6 weeks and was released to drive. From there, I just never gave up, posting regularly on my facebook page for moral support from friends, walking as much as I could, continuing with therapy and learning how to do my daily routines with my now ‘fixed’ and ‘perfectly’ positioned back.
August 2021 – Surgery and Recovery Behind Me
The tingling and numbness in my feet never really went away. It was masked for a time during the weeks after the surgery due to the narcotics I was taking. I weaned off of those medications as soon as I could because of their adverse side effects. The metatarsal pain between my big toe and my second toe however did go away after the first six months.
Although I don’t feel the numbness and tingling has worsened, it has been quite depressing to realize that I might have these foot sensations for the rest of my life, despite everything that I went through.
Would I have been worse off without surgery? I will never know. I am 1.5 inches taller – back to my original height. I have a harder time sitting in a car or airplane for more than 2 hours without a break. I can’t slump into any seat or take a bath. But, I can ride a bake, climb stairs, kneel to tie my shoes, and take a shower.
I can walk for 3 miles or more in one stretch which I couldn’t do before the surgery. I continue to push my limits, and while I will never be able to bend over like others do, or do the cat’s pose in yoga, I can fold myself like an accordion to reach the floor. When I can’t do something, I summon my creativity or ask for help. My new normal is just a bit different.
I am glad I had the resourcefulness to get the best medical care I could find, that I had the internal courage to face the surgery, the recovery, and the pain with minimal support. This is the end of the original post, and I will put occasional additions below as the years progress.
2021
In 2021 – I worked briefly with a Feldenkrais specialist to become even more “aware” of my body and its movements. I continued physical therapy during the Spring of 2022, mostly to strengthen my neck and upper back muscles. The hope was that this would ease the feeling of extreme tension in that area. I became stronger, but the tension and discomfort has continued. I am told my upper back scoliosis is a curve of about 18% but that it cannot be definitely related to the discomfort and tension.
2022
In the spring of 2022, I decided to move to France. I arrived on July 31st by 1st class – fully prone. I slept the whole way and wondered how I would be able to afford trips home to visit that same way. Very expensive! Travel is hard for me because sitting causes all three areas: feet, upper thighs and upper back to get inflamed/tense, tingly. I can barely focus on whoever I am with when this happens.
Once in Paris, I sadly stopped the routines for maintaining my upper back strength due to lack of space in my first tiny apartment. I stopped my power walks: walking in city streets is a stop and go phenomenon and so a 3 mile walk the way I did walk in Virginia is not possible. That said, all my grocery shopping has been on foot and carrying the bags home, so not all was lost.
2023
In February 2023, I moved to a larger apartment. I worked with a physical therapist for a short period to help me get going again. I also often also have restless leg syndrome when I am trying to fall asleep.
My life is altered with this invisible ailment I call pain – which manifests as tingling in feet, tension in upper back, nerve pains when sitting for longer than 30 minutes. I am functional for daily living, but socializing and travelling which require for the most part longer periods of sitting are harder for me to imagine.
I’ve taken up sourdough bread making as a way of having fun, learning, and enjoying myself while at the same time taking care of my needs where I most easily can. I do get out and about in Paris, and am making friends. I miss the old days of no constant nerve related pains (pre-2018), but…. my goal is not to overcome the pain, but to live my best life with the pain. I want to stay physically active, medication free and psychologically positive.
Connections and Congruence 