Hell on Earth: My Quagmire of Pain

This is a long post, but it might possibly contain valuable information that may make a medical difference for you, a loved one, or someone else you may know. Some of you noticed that my online presence and professional output diminished greatly post-Spring 2011. I’d made previous comments about personal disability on my blog, Facebook and elsewhere, and many of you took note and wrote with your concerns. Thank you for caring! This is a story about my spine…

In March 2006 I suffered the blow of my life. As I often am, I was in Joshua Tree National Park enjoying camping, hiking, and photography in one of my favorite places on earth. Up until March 2006, I had been continuously adjusting to and ignoring general lower back pain that had been increasing for months: “I must have pulled a muscle”. One can only successfully manage pain up until the point of catastrophic failure: I awoke in the Park to excruciating pain and the inability to rise or walk. The very next day I was hospitalized due to an 8mm lumbar disc herniation. Two additional lumbar discs were bulged, and I was diagnosed with a host of degenerative spinal issues. I’ve carried a lot of packs in my life; I’ve taken serious falls while technical climbing; and genetics are against me. But at a young 38 years of age, I never would have imagined that I’d be hospitalized and completely debilitated. It was the worst time of my life; naturally, it came to a screeching halt.

Despite the recommendations for surgery, I was well aware of Failed Back Surgery Syndrome and I instead elected to self-rehabilitate only with several forms of physical therapy and exercise. I came home with a walker and graduated to a cane. I was told that if I committed and worked hard, I could be back at play and work in 6-12 months. I listened, I desperately worked at it, and I recovered despite how at-the-bottom I felt at that time. It was an amazing journey, and by 2007 had worked my way back to backpacking with a camera kit. I rejoiced and my core was strong like never before.

Fast forward to July and August 2010, when I led two backpack photo tours into the High Sierra. Both tours were excellent, and I felt physically healthy and strong. Yet shortly after the August tour, I began to once again feel a tinge of pain in my lumbar spine, and slight worry began to set in. By early November 2010, I began to fully realize that I was quickly sliding in the wrong direction, and I had new lumbar MR images taken. Uh-oh. The new images revealed that *all five* of my lumbar discs were now bulged, yet none thankfully herniated. I got back into assisted physical therapy, and remained there for months. I did everything right and everything that I was supposed to do, yet unlike 2006, the therapies were not at all helping (ultrasound; acupuncture; traction; massage; TENS, exercise) and I was getting no better despite my efforts. It was frustrating and discouraging. Everyday life was becoming a challenge.

By May 2011, I was a physical wreck. There was not one moment per day that I was free from pain and discomfort. Sleep loss became routine (forget the bed; I slept on the floor for months), appetite- and weight-loss ensued, and before I knew it, I was not able to leave the house other than for doctors appointments. The only way for me to get through each day and night was through the legal use of opiates. And not even Oxycontin could alleviate my pain or help me to sleep. I quit caring about photography and life, and wondered if this was my new future. I really felt at the bottom when I recognized and was confirmed with muscle atrophy. My own mother suffered from chronic pain for more than twelve years. I had endured less than a year’s worth, and it was already too much (my mother was an incredible woman, it turns out).

My wife is a career Registered Nurse and knows just about everyone in her medical field. We sought recommendations and the very best doctors. I saw a respected spinal surgeon who declined to operate (Thank you, Dr. Chen). I followed up with a recommended neurologist who diagnosed me with neuropathy (nerve damage) in both legs (more depression!). I once again felt finished, but this time at the age of 43. A few more weeks of chronic pain passed, and then I saw another neurologist for a second opinion. He, too, was unable to diagnose the exact cause of my pain, nor was he able to suggest anything or anyone that could help me. To further corroborate lack of diagnosis was my regular pain management doctor, who insisted that my pain was indeed a result of lumbar disc compression issues (why didn’t Dr. Chen agree?).

By August 2011, after living with chronic pain and sleeplessness for months on end, I’d had enough. This was not the way I was going to live out my days, and being a full time Netflix’r and pill popper was not a lifestyle I sought. Despite my wretchedness, I decided to take control of my situation and began doing hours of online research (while squatting before my desk; sitting was still physically impossible). Thank goodness for the amazing WWW – I learned of something called Piriformis Syndrome (also spelled Pyriformis). Piriformis Syndrome is almost symptomatically identical to sciatica. Consequently, many doctors and surgeons who are inexperienced with Piriformis Syndrome (as mine were and as most are) will often overlook this diagnosis. Until then, I had never really quite known of the piriformis muscle (many back pain sufferers ultimately become quite knowledgeable about anatomy) even though piriformis stretches were part of my repertoire. After reading through pages and pages of forum posts from suspected piriformis sufferers, I became positive that this was my affliction, and I would allow no doctor to tell me otherwise.

Thank goodness for YouTube: I located a number of myofascial release exercises and stretches for the piriformis muscle, and immediately got to work (even though the initial pain was severe). Within one week (ONE WEEK!), the majority of numbness in my left leg was gone, and my pain level went from 9+ to 5-. On August 16, 2011, I revisited the second nuerologist, who upon my request injected my piriformis with cortisone. Within a few days of the injection, I stopped taking ALL medications (including Advil); the numbness was entirely gone; and my pain was a fleeting memory. It seems virtually miraculous, yet the miracle is that I had the courage to fight and take control despite my misery and the overwhelming darkness at the end of my tunnel.

I am very happy to report today that I have quickly swung back into business after months of inactivity and suffering. I am back to camping, hiking, and photography, and last week went on assignment for The Wilderness Society (an upcoming blog post). It’s great to be back at work. It’s even better to be back outside again where I can feel the desert winds blowing, hear coyotes howling, and watch the sun start and conclude a day. I am back and life is good!

The moral to this [long] story is that sufferers will suffer when they place their hopes and outcomes entirely within the hands of doctors or others. You are the #1 advocate for your care and for your situation. Empower. Fight like hell. Never quit. Research and understand Pirifromis Syndrome if you suffer from sciatica and are getting no relief despite your best efforts. Most of all, find a doctor who will listen to you, because this is your life.

Who’s joining me this weekend for a Star Party in the Mojave Preserve? πŸ™‚

You are visiting the blog of fine art landscape photographer Michael E. Gordon. For additional photos and information, please visit his official website.

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48 thoughts on “Hell on Earth: My Quagmire of Pain

  1. Yikes MG! I’m so, so glad to hear you have found a solution and I hope it’s permanent. Don’t know anything about the condition, but I also hope that it’s a manageable or more importantly a curable one. take care of yourself!
    Lon

  2. Wow! Congratulations for taking control and finally finding an end to that horrific pain, and thanks as well for the great info. Am very happy to hear you and your camera will be out and about again. πŸ™‚

  3. Congratulations, Dr. Gordon. I feel, or should rather say felt your pain. Symptoms sound awfully close, yet I was diagnosed with damage to my sacroiliac joint and a slightly displaced hernial disc. At age 23 then, so don’t feel too bad at 43. LOL Physical therapy and core training later on did the trick for me though but good to know there might be another possible cause to all this. Camp on!

  4. Glad to see your better. I have often said that a doctor’s business is called a practice because they don’t know everything and are practicing on us. My wife had sciatica several years ago. The doctors wanted her to see a back specialist, but couldn’t get in for a couple months. In the mean time she was in so much pain that she spent about a month in bed. Finally heard about a chiropractor from church and went to visit him. My wife was driving again in about a week and on way to recovery. She still has some pain issues, but is not regular with exercises. You may need to make the exercises a lifestyle so you don’t get worse. Take care and be healthy.

  5. Wow that is some story. So glad you were able to find the cause and solution – what would we do without the huge volume of information right at our finger tips thanks to the WWW. Great to hear you are back in action!

  6. Wow, what an inspiring story, Michael! I had no idea you were going through this. I’ve been the patient advocate in my family through three bouts of devastating illness and I wholeheartedly agree with your conclusions. Doctors simply do not have the time (or sometimes the inclination) to understand the intricacies or get to the bottom of every patient’s afflictions. It’s up to us to fight like hell! Very, very happy you’re back.

    Lori

    • ‘The system’ is unfortunate, Lori. One cannot expect and will not receive undivided care and unless one sees a cash-only doctor. My animals get better and more attentive care from their veterinarian than I have ever received from a insurance-accepting doctor. Thank you!

  7. Mike,

    What a great story of strength, courage & resolve. It would seem you owe your mother for those traits. I’ve suffered with herniated disk but not at a 9+ level. I can attest to how debilitating back pain is. Modern medicine is wonderous but not infallible esp. when the lower back is the issue.

    I know I should be working core exercises to reduce the chronic episodes. Maybe I can draw strength & motivation from your story. Thanks for sharing it. I hope our paths cross again.

  8. Wow Michael. You have been through a lot man. When we went to see Clyde Butcher talk earlier this year you had mentioned needing to stand due to back problems but I had no idea it was this serious. I’m glad that you found the initiative to pursue your own course.

    My mom was your age when she got in a real bad car wreck and was diagnosed with spinal stenosis with compression on some of her neck discs. She ended up having neck surgery in the earlier part of this decade but it still flares up from time to time, and is having numbness in some fingers right now even so I’ve seen the effects first hand. I wouldn’t wish that upon anyone.

  9. Michael,that was a tough read, but fortunately it appears to have a happy ending. I wish you good health going forward. I applaud you for having taken your health in your own hands and finding a solution to your physical problems. I look forward to seeing you on the trail!

  10. Pingback: Today’s Shared Links for September 22, 2011 @ Chuqui 3.0

  11. I can’t tell you how glad I am that you are making a good recovery, Michael. You’ve certainly been through more than your fair share these past couple of years. Looking forward to celebrating in the Sierra later in the season!

    Guy

  12. Glad to see your better. I have often said that a doctor’s business is called a practice because they don’t know everything and are practicing on us. My wife had sciatica several years ago. The doctors wanted her to see a back specialist, but couldn’t get in for a couple months. In the mean time she was in so much pain that she spent about a month in bed. Finally heard about a chiropractor from church and went to visit him. My wife was driving again in about a week and on way to recovery. She still has some pain issues, but is not regular with exercises. You may need to make the exercises a lifestyle so you don’t get worse. Take care and be healthy.
    +1

  13. I’ve been thinking of you as of late. Read up on your condition in your blogs.
    Am so glad to hear you are “all better.” Loved the story about how,doing your own research, you were able to get to the bottom of the troubles. We are truly lucky to have internet !!! SOMEDAY, I want to hike with you again!

    “When you’re marching thru Hell, keep on Marching!” – Winston Churchill

  14. Wow Michael, this is way to close to home for me. I’m glad that you found the source of the problem online and are healed and back to work!

    Just this past Friday if “threw out my back” while twisting and lifting my son out of his car seat. Massive pain all weekend and today my chiropractor essentially diagnosed the same issue that you were suffering with. He even recommended some of the same stretches that you linked to. Not sure if mine Piriformis or Sciatica related but it already is feeling better.

    After 30 years of chiropractic care I’m a firm believer that it can help solve a lot of issues normal doctors want to use either a scalpel or prescription pad to solve. I’m glad your self education and persistence helped you heal in the end!

    Stay healthy; looking forward to lots more photos…

    • Hi Greg: This is not official medical advice, so take it as you like, but your issue definitely sounds to me spine-related and not piriformis-related. I’d recommend getting on a core-strengthening regimen to help prevent against that in the future. The older we get and the more we sit, the more likely we are to “throw out” our backs doing things like tying shoelaces and lifting children.

      The Swiss exercise ball has been a tremendous help to my core strength. I recommend one and a good training book to go along with it. Best of luck, take care of your back!

  15. Well you have certainly went through a lot and just the mental state of knowing you couldn’t move must have been crippling in more ways then just physical movement. I’m glad to hear you’re recovering!

    Have you changed the load amount you carry in your pack? I know you don’t want lack on equipment but some of those camera bags have too much padding. I use a modified camelbak with peices of an old photopack put in for padding and the equipment is in neoprene sleeves. That small weight reduction only helps so much.

    I wasn’t very discriptive in that pain I had (3 years ago) described in our email. It hurt to breathe because the pressure from one lung was pushing against something my lung and my spine. I had to take shallow breathes to mimize the pain. Stretching made it feel better as it eventually slowly went away. I’ll have to look into the stretching methods you have linked to. Thank you Michael

    • Thanks, Steve!

      I don’t have any issues with carrying my camera pack alone, but I have to reexamine backpacking and photography in the future. Because my lumbar discs have been compromised, I will continually stress and potentially damage them if I continue carrying heavy loads. I suspect I will have to limit myself to 25-30 pounds (backpacking kit), but time will tell.

      Glad to hear that you are doing OK! The older we get, the more that stretching becomes a necessity to stave off injury. Take care, Steve.

  16. Michael, This narrative is an inspiration for people to take control of their own health care. It is perhaps the only way to true healing. The medical system as designed treats symptoms and asks patients to rely entirely on the Doctor for direction. Clearly, especially with back problems, this approach to treatment does not work. I have learned through experience with my own medical issues and managing my father’s at the end of his life, that the majority of the most effective cures never make it into the media and rarely into “scientific” (biased) journals and are thus dismissed. It amazes me that millions are raised annually to combat cancer, when unrecognized, yet proven cures for some kinds of cancer already exist, if it is caught early. Also, through real science-based research, I found out that most degenerative “diseases” such as MS, ALS, Alzheimer’s and others are not actually diseases at all, but environmental poisoning of some kind combined with genetics. Yet, environmental poisoning is blacked out of the media. Check it out for yourself. We will never have a good health care system that truly helps people recover and remain healthy as long as big Pharma controls the medical profession and the media. Doctors do not study health. They study medicine. Why would we think any system of medicine is effective that only studies symptoms and ignores the causes of the illness? Seems a bit nutty. OK, I could go on and on, so I’ll stop here. I am very happy to hear that you have your life back and mainly due to you taking it back yourself, rather than relying on an industry that profits whether people get better or not. By the way, how much money do doctors, pharmacies and hospitals make on a well person? Is it to their advantage to help people remain healthy?

    • THANKS for your comments, David! I could not agree with you more. If we had a system that was effective and doctors were educated a little differently, the emphasis would be placed on diet, exercise, and prevention and not on band-aids and false cures. I don’t believe this is something we can ever change, not with our increasingly obese, un-exercised, and instant-fix culture. It is truly up to the individual to stay well and out of hospitals and doctor’s offices.

  17. Hi Michael, I’ve visited here before.Specifically to go over developing 4/5 BW film. I’ve just read this piece regarding your back issue.

    My wife who could lift a canoe over her head went thru surgery 3 years ago for a tumour removal. Surgeons removed the bottom 1/3 of her right lung. During this time and her recovery she was also experiencing an ongoing battle with Lyme Disease. She became physically weakened. Then the back pain set in.

    She has spent over 18 months of testing, seen 5 different doctors, been on oxycontin and the pain has been incapacitating. She has to move using a walker now. Doctors are beginning to believe she has some kind of deterioration due to loss of muscle during her recovery period from the cancer surgery.

    After reading this I can say she is at the same place you were … stymied by conflicting opinions and no decisive plan of action from these professionals. I am somewhat glad they have not embarked upon something like a hip replacement after reading your blog.

    I am going to pass this column to her so she can read up on what you discovered. Hopefully this avenue will be able to help her improve her current disabled condition. Back pain is a strange thing. No one believes the pain is as bad as it is until they personally experience it. Most people even scoff at this type of pain and joke about it. Sadly it’s worse than words can describe. Sometimes she would cry from the pain and all I could do is hold her hand. You’re helpless.

    I’m fortunate to have come across this. It’s funny how the world works sometimes. I would never have found this if I wasn’t a photographer. Mysterious ways.

    thanks again

    Jan

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