My adventure with back pain

For the last 8 months, I’ve been struggling with major back pain. It was the kind of pain that stopped me from walking, sleeping, thinking and a thousand other activities ranging from cycling to traveling. I spent much of my time trying to understand what was going on, pursuing a dozen treatments, and just coping. After surgery in December (2016), I’m on what feels like a real path to recovery, but, as I write this, I’m not there yet.

Before the specifics of the last year fade from memory, I’m capturing my notes on it. I’m doing this for me, in case it happens again. I’m also doing this as a story to share with others; one of the things I learned in this adventure is that a stunningly large portion of the population struggles with some sort of back pain.

In this note, I’m describing the facts: what happened when, how it felt, and how that worked out. In my other note on back pain are my (current) set of reflections on the whole trip.

Recommendation

If you’ve got back pain or sciatica (leg pain) and aren’t sure what to do about it, here are a few thoughts.

First, get an MRI if at all possible. There is a huge difference between guessing what the problem is and seeing what the problem is. Do not wait N weeks while they have you do PT. Do not fear that they will treat something they see that is not relevant. More data is better. Get the MRI as soon as you can.

My primary care physician told me that about 80% of such cases self-resolve in about 6 months. That correlates pretty closely with all that I learned in my reading and research during this time. By “self-resolve”, he includes various non-invasive treatments like physical therapy, stretching, inversion tables, and so on. All of these can help the disc to heal. If it goes on for more than 6 months, something more serious is going on and will likely lead to surgery.

(By the way, having spent a lot of time digging around the web looking for answers to what was hurting me and what to do about it, my suspicion is that there’s a pretty big industry out there of practitioners of various healing arts that take advantage of this fact. They do something that looks like a treatment and probably isn’t hurting you, but in essence, the disc is healing itself.)

Things to be wary of when in this kind of pain: chiropractic work and yoga. My own experience with these was not positive, and all the medical professionals I spoke with recommended against them. Even if they were supportive of PT or massage therapy, they warned against chiropractic treatment and yoga while experiencing disc issues.

If you are at the point where they recommend cortisone shots, go for it. They didn’t help me but I heard from many friends that these were the things that moved them from being in pain to cured.

Finally, if you are at the point where they are recommending surgery, don’t avoid it just because it’s surgery. There’s a lot of literature and noise out there about avoiding surgery at all costs, but for me and many others, it was the only viable option.

Summary

The details, which I go into below, are a bit long. The summary is:

  • The source of my pain was a severe L4/L5 disc herniation.

  • The ultimate resolution was back surgery: a microdiskectomy with L4 and L5 foraminotomy.

  • We do not know what caused the disc herniation, nor when it took place. (This is pretty frustrating, because that means I don’t know what to do differently to prevent it from happening again.)

  • The pain started as a minor annoyance in May. It steadily escalated into full-blown sciatica in September, by which time I couldn’t walk or stand for more than ten minutes; concentration for more than a few minutes was difficult. It continued to progress in severity and impact up through November.

  • Things I had to stop doing included traveling for work, cycling, backpacking, gym work, yoga, and thinking straight.

  • We did not know what was causing the pain until I had an MRI until September. Before that, the prevailing diagnosis was some sort of misalignment or postural problem. So the first few months of this time were spent trying to figure out what was going on, which was incredibly aggravating.

  • Over the course of this time, the treatments I pursued included: ignoring it; changing shoes, mattress, and laptop bags; chiropractic adjustments of two types; physical therapy; stretches of many kinds; inversion tables; posture therapy; and epidural cortisone shots.

  • We didn’t settle on surgery as the right solution (it wasn’t an option, even) until December.

  • It turns out that in my case, physically, surgery was the only viable option.

What Happened

Before 2016:

  • In retrospect, it seems possible that the cause of the injury was years ago, and it only became severe in 2016.

  • I had back / hip pain in 2015 after my last week-long backpacking trip... enough that I mentioned it several times in my journal. Once that went away, I forgot about it.

  • I had several (well-documented) bike crashes a few years before that may have been the original source of the hernianation. We don’t know.

  • However, I never had symptoms or back issues like I did in 2016.

Winter 2015-2016:

  • Ironically (?), this was probably my fittest winter.

  • I went to the gym 1-2 times a week to improve core and general strength.

  • I went to yoga at least once a week to work on flexibility, and really enjoyed it.

  • I did indoor cycling training three-four times a week to build up cardiac endurance and general cycling fitness.

  • The points: when they say “improve your core strength to improve your back”... I did that already. None of these activities seemed to cause any problems - at the least, I didn’t notice any symptoms.

May - June 2016:

  • I noticed very minor hip pain on my right side, here and there. I chalked it up to “slept badly, it will work itself out” and didn’t think about it.

  • One weekend in May, I had a pretty bad cold and was pretty out of it. I spent most of that day slouched in a comfortable chair, playing video games and reading. I had a pretty serious back ache (right side) after that, enough that I mentioned it to my massage therapist and we focused on it for a few weeks. I think of that weekend as the beginning of the pain journey.

  • Pain: minor, occasional, exhibiting in right hip / glute when standing

  • Treatment: massage therapy, which helped with the pain

  • Impact: minimal; walking, thinking, and cycling were not impacted

  • Activities: I went on several great day hikes (such as in Oslo) and went on a 5-day bike ride in the mountains of Norway. Pain was not a factor in these.

July 2016:

  • This is when it moved from “nagging pain” to “OMG I can’t move”.

  • Initially the pain was intermittent, as a spot of pain in my right hip. As the days passed, it became pretty persistent. It moved and expanded, becoming a pain around my lower spine, and also expanding to include most of my right leg. Toward the end of the month, I noted in my journal that I “could barely bend or stand”, I couldn’t walk more than 10 minutes at a time, and had real trouble putting on socks and getting in the car.

  • It seemed to be worst when standing and walking, and was fine when I was lying down.

  • At the beginning of the month, I was riding my bike at my usual rate for July. (A lot.) It didn’t hurt on the bike, and it didn’t hurt any differently after, so it didn’t seem related to or caused by riding. However, in the middle of the month, I did a fairly tough century, and could barely walk right after that ride. I recall taking a shower to get cleaned up and having to lie down while in the shower. So, after that, I stopped riding to see if it would help. It turns out I would not get on a bike outside again for the rest of the year (and still haven’t).

  • I went to see a chiropractor - one who I think is quite good. He did some adjustments of my hip and spine. I felt considerably better after that, for a day, then got worse. We tried this about three times, at which point he said, “you need to go to your doctor, and you need an MRI. You need to see what’s going in there.”

  • I continued massage therapy. That always brought pain relief, but it also proved to be pretty short-term - a day at most.

  • I went to yoga, once, to see if the stretching from yoga would help. That was a disaster. Thirty minutes in, I was in so much pain from just basic cat/cow and warrior ones that I had to stop and leave class early. An unwelcome first.

  • Other treatment: Initially, I thought it was just minor posture stuff. I switched to ‘better’ shoes, switched my shoulder back to a backpack, that sort of stuff. I thought perhaps it was our mattress, so I started sleeping in our guest room, to see if a different bed would make a difference. It did, actually, in that I would wake up with less pain.

Late July 2016: MD

  • I went to see my primary care physician, which sort of tipped this for me from something to be “treated” to something “medical”.

  • My doctor diagnosed me as “low back pain without sciatica, unspecified back pain laterally”. She was right - I didn’t have sciatica at the time, and could move my leg in ways that tended to indicate something else was wrong. (That would change later.)

  • She told me that she thought I might have a pinched nerve, but it wasn’t clear. She was right about that.

  • She told me that to get an MRI, I would first need 6 weeks of PT before insurance would pay for it. PT usually resolves these things, but if not, then an MRI was warranted. That was the point that I should have pushed back on.

  • She put me on about a week of prednisone, which, like basically all pain meds, had zero impact on me.

Late July 2016 - August 2016: PT

  • At this point, I was in constant and significant pain, except when lying down on my back. All of that pain was in my hip, though.

  • I went to a PT, who did a pretty good assessment of my situation. Her assessment was that it wasn’t a disc problem, because I didn’t have sciatica. The pain seemed to be coming from my hip area, possibly from a misaligned / mis-rotated hip bone. She put me on a series of daily stretches and movements intended to address the hip issue.

  • She thought that cycling was likely a significant cause - all the back curvature during rides, and the over stressing of leg muscles - so agreed I should stay off the bike.

  • She also thought yoga was generally a bad idea.

  • Initially, this treatment seemed to improve things, at least incrementally.

  • Over the course of the month, I met with two other PT specialists. Based on their own assessments and where my pain was, they agreed with the assessment - this was a hip thing, not a back thing.

  • Interestingly, in my journal, I have this note from August 11th: “the head of the PT group believes that imaging - an X-ray or an MRI - won’t help, and will only complicate things. This pain isn’t consistent with the sort of injury that would reveal, and will ultimately only lead to treating the image, not the person. This would probably be shots and/or surgery. It doesn’t make sense to do this, at least right now.” You can almost hear the ironic soundtrack playing in the background.

  • However, as the weeks played out, it was clear that the pain was only getting worse. At work, I could only walk a few blocks before having to stop and sit to let the pain subside before I could continue walking.

  • Other treatments I tried: anti-inflammatory drugs, a back brace, tape on my back, and of course the PT stretches and movements.

September, 2016: Chiro

  • At this point, the main things going on were:

  • The pain was steadily getting worse.

  • I’d stopped all athletic activities.

  • Pain was also stopping me from walking between buildings at work, flying for work, and being able to concentrate.

  • We were not sure what the problem was, which was incredibly frustrating.

  • Our top theory was that the hip and back were out of alignment. There was evidence to support this theory, including the fact that you can see one of my hips out of whack, a badly misaligned bicycle seat, and the way the pain manifested.

  • No treatments were helping.

  • An MRI was still not an option, because we were on that “6 weeks of PT” requirement.

  • I decided to switch tactics to deal with this supposed hip misalignment, and went to see another chiropractor who my wife had a very positive experience with.

  • That chiropractor had a different approach than the one who I usually work with. She took more of a holistic approach - fully body alignment, check on shoes, bed, sitting habits, overall posture, and so on. She took pictures for “before / after” assessments. She did a series of gentle adjustments to my spine, my neck, my hips, my feet, and so on.

  • Her philosophy was this: the body will heal itself if you can get it into alignment. It’s like structural engineering. So, while you may be having pain in your hip, it probably comes from your back. If we can get things lined up, it will get better. Typically you will feel a bit worse in the first week or two of treatment as things get moved, but then it will get better and better over six weeks or so.

  • So, we did that.

  • After the first treatment, things were remarkably better. Stunningly. I could feel a freedom of movement that I had not felt in months.

  • Two days later, it had drifted back to where I was before.

  • We continued treatments (2-3 a week), but nothing improved like that first day.

  • In fact, the pain got worse and worse. Her view was this was part of the process. I was absolutely not convinced.

  • At this point, it was hitting me up and down the leg - full-blown sciatica. (I don’t know if that was simply the evolution of the disc situation and the pain, or if the adjustments that the chiropractor did helped it to progress into that.)

  • I kept seeing this chiropractor for about a month, and really liked her. Ultimately, this treatment didn’t work at all, but I do think that what I learned from her about sitting and sleeping posture was really helpful.

Mid-Late September : MRI

  • In mid-September, I finally had my followup with my physician. There was a scheduling fiasco that almost pushed this out to October. I lost it (“my life is on freeking hold”) and they found a way to fit me in. The physician took a quick look, agreed PT wasn’t improving things, and scheduled me for an MRI.

  • The MRI took place on Sept 24th. Just going through that hurt like hell... lying totally flat on my back and not moving. Argh. Oh well.

  • The results of the MRI were clear to my physician: I had a disc bulge or herniation at the L4/L5 point in my back. She referred me to a spine specialist.

  • At this point, things flipped again.

    • First, this became more of a medical case again.

    • Second, we had a clear answer for the cause of the problem. Finally. Thank God.

    • But... was it? Or, if you listen to the concerns raised by PTs, chiropractors, and much of the Internet, would it simply be that the medical profession had found something they could focus on, but it wouldn’t turn out to be real problem?

September 27: Agony

  • For context, excerpts from a journal entry :

    • Wake up around 3am, knowing I’ve been tossing and turning on this mattress on the floor. My sides are aching, dragging a streak of pain across my lower back. Turning to either side is an ordeal, but eventually I get there, and the pain decreases for a few moments, then returns.

    • I somehow find a way to get out of bed, to stagger my way towards the living room, seeking any kind of relief.

    • I carefully kneel on my exercise mat, one leg at a time so as not to fire off the pain in the right leg. I arrange the heating pad and a pillow and slowly, carefully, painfully work my way down to where I’m lying on the heating pad. I lift my feet up on to the footstool and let the heat soak in, providing some relief.

    • It’s worse than it’s ever been. I can barely lie down or sit. Standing up is very hard. Moving from the floor to standing takes half a minute or so.

    • It’s hard to even tell what’s in pain, it’s all so confusing. Will this ever get better? If not, life will have to be significantly rearranged.

    • I try to sit and use the computer for a while, but writing this is all I can do… my concentration is fading. Giving up, crawling back to the mat and the heating pad.

October: Medical Mode

  • With the results of the MRI, I stopped the PT and the chiropractor work. It was clear neither was an a path to improvement, and we now had another avenue to explore.

  • I met with an MD who specialized in spine treatments. He looked at the MRI and said:

    • We see this a lot.

    • Here’s what’s going on: you have discs in your spinal column, between the spine bones. One of them has bulged out from the spinal column, putting pressure on the nerves that pass through the spine. The pressure on those nerves is causing the pain up and down your leg. There’s nothing wrong with your leg or your hip - the problem is with this disc. We need to get it back into the spine where it belongs.

    • Cortisone shots may work and are the recommendation.

    • You’ll go to the hospital, get a shot in the spine, and then be out in an hour.

    • The shot will aim to reduce the inflammation of the disc, so it will shrink, pull away from the nerves that it’s pushing on, give relief, and then heal.

    • It may be that you will feel instantly better after one shot.

    • Or it may be that you’ll need up to three shots - one every two weeks or so - for it to have impact.

    • If the shots don’t work, then your most likely course of action is surgery.

    • The shots work in 80% of the cases.

    • (Ironic, doom-filled music on the soundtrack.)

  • He also mentioned that this was a particularly painful place to have a disc bulge because it could hit the nerves and ganglia in some really bad ways.

  • I asked him about the PT assessment of it being a misaligned hip. “Yeah... that’s not a thing”, he said.

  • I went to another, highly-recommended doctor for a second opinion. He said basically the same thing.

October - November: Cortisone Shots

  • I got my first cortisone shot on October 5th.

  • It was called a “Transforaminal Epidural Steroid Injection L4+L5 R”. I got 10 mg of Dexamethasone.

  • It was an interesting experience: day surgery that takes about 20 minutes, spending about 90 minutes in the hospital. You get a bunch of local shots around the spine, then the doctor inserts the cortisone as an epidural. When it hits, you feel a pulse up and down your leg, along the nerve path. It’s not that big a deal.

  • The doctor does something like 20 of these in a day, twice a week. It’s a big business.

  • You have to give the shot about two weeks to have an impact. It might get better on day one, it might get better on day 10, or it might not change at all.

  • To cut this story a bit short - none of the shots helped. We switched up the types of steroid between the first and the second, but it didn’t matter much. After the second shot, things did get better, i.e. the pain was a bit lower in intensity, but it was still debilitating.

  • They gave me pain meds. No impact.

  • They gave me muscle relaxants. Those knocked me out so I could sleep (but not concentrate at ALL), but no impact on pain.

  • While in this phase of treatment, I ramped up a set of stretches recommended from a number of “how to heal your back” books and Youtube videos. I thought those might improve the odds of the disc reacting to the cortisone and reducing inflammation. No such luck.

  • At this point, I also tried an inversion table. The doctor thought it might help. It didn’t. In fact, it made it worse, which was an interesting clue. That’s not supposed to happen.

  • Life continued as before: could barely walk, had trouble sitting and lying, couldn’t travel, and really had trouble concentrating and thinking. Plus we were rearranging life to get me into the hospital for shots and for recovery from those.

December: path to surgery

  • I met my spine doctor on December 6th, to assess the results of the 3rd shot.

  • No progress.

  • “I’m sorry, but it’s time for surgery, my friend..”

  • I asked about success rates, risks, etc. He basically said, “that depends on the surgeon and the procedure. I have a a few I can recommend. You should talk to them and get multiple opinions”.

  • Deciding what to do here was a big deal. I’d spent the last 6 months doing treatments that were aimed to cure with a background goal of avoiding surgery. The horror stories are that surgery only temporarily solves the problem, and you have to deal with it all your life. Or that something goes wrong.

  • And yet, nothing else was working, and the impact of the pain on life was ridiculous.

  • Not a hard choice.

  • Michele and I met with the first surgeon my spine doctor recommended. He came across as extremely capable.

  • Interestingly, his assessment of the MRI (the same images the other doctors had looked at) was that it was pretty severe. It wasn’t a bulge, it was a herniation (it had broken open). It was occluding two nerves. It was going to require somewhat intricate surgery that involved removing some of the bone mass. Recovery would not be immediate, it would take months.

  • The surgeon had good answers for all of our questions. I checked a few references, which were all good.

  • The first available date was December 19th. I signed up.

Late December: surgery

  • I had the surgery on December 19th, the last Monday before Christmas.

  • It went well.

  • However, the surgeon told a more complicated story:

    • The disc had adhesions - scar tissue - that had attached to two main nerve systems.

    • He had to cut those loose.

    • He described setting one of the nerves free and seeing it visibly relax and settle.

    • In doing so, he had to cut through some of the nerve casing, which led to a leakage of spinal fluid - a concern. The patched the nerve with some muscle tissue.

    • So.... recovery should go fine, but may take even longer.

  • The scar tissue situation is really interesting. In essence, it means that none of the other treatments, including the cortisone shots - could have possibly worked. Those are all predicated on the concept that the disc, if given room or with reduced inflammation, will retreat back into the spine and heal itself. That wasn’t going to happen in my back. Surgery was the only option.

  • I stayed in the hospital overnight so they could make sure that the spinal fluid situation stabilized. It went fine, and they released me the next afternoon.

  • I spent the next two weeks basically lying down... between recovery from general anesthesia and the need to let my back wound heal, I didn’t have much option.

Now: recovery

  • Recovery is going as hoped. The doctor expects I will get back to 100%, even for activities like backpacking.

  • But... that’s going to take months.

  • Healing is underway for two main areas:

    • First, the herniated disc and the surgical spot. Those seem to be coming along as expected.

    • Second, for the nerves that have been abused for the last 8 months. They still feel a lot of pain. As I type this, my right calf is hollering in pain... but that pain is considerably less than it was before surgery, and it’s better than it was even in the week after surgery.

  • I’ve restarted riding my bike indoors again, just to get active.

  • I’ll start PT again soon to build up core and back strength.

  • If all goes well, I will be back to ‘normal’ by April or so.

We shall see. I’m finally optimistic.