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Runner with possible L5/S1 stenosis. Any other runners?

LA_runner_chickLLA_runner_chick Posts: 91
edited 06/11/2012 - 8:56 AM in Spinal Stenosis

Pardon my long, drawn out story that may even be miscategorized, since this might be DDD or something else entirely.

I've been running since I was 20, and for the past three or four years, doing at least 80 miles a week, a mix of both on- and off-road. A few aches and pains here and there, minor bout of sciatica and PF, but otherwise in good shape. A year and a half ago, I developed a funky problem -- left foot felt slightly wobbly on impact, losing strength on pushoff. I figured I might need new orthotics or something minor, kept running through it.

In summary: I've spent the past 18 months being misdiagnosed by almost an army of doctors, all while continuing to run, because none of them thought I had a big problem. Turns out it's some spinal issues. Compressed nerve at L5/S1 on the left side -- possibly stenosis (had MRIs that had some junk going on, a low grade degenerative disc disease, but nothing that explains my symptoms. At least, that's what I'm told.) Last week I had my first cortisone epidural, and I'm seeing maybe a 25% improvement.

I had to cease and desist with the running maybe six weeks ago -- there's no pain on my left side, just significant weakness that makes me feel like the left leg can't keep up with the right one -- it feels this way either running or walking briskly. But I'm hitting the gym, going for long walks, took up swimming. I've also started to develop a lot of pain on my right side, including sciatica-like symptoms.

I have no idea of what's next. Dr. said surgery might not be out of the question -- I just turned 40 and I'm confused about why it's taken so long and I still don't have a definitive diagnosis and depressed about not running and thinking about having to give it up forever.

Anyone have a similar experience? Any feedback/insight appreciated!


  • Hi and Welcome to Spine Health.

    I am a (former) runner. I ran competitively starting in elementary school. It was my passion. I have spinal stenosis, mostly caused by being severely knocked unconscious by a snowboarder. Among other things my SI joint ended up in another time zone, or so it seemed.

    My stenosis was mostly likely caused by the accident but I am sure all my running helped it develop. I have several other "...sises" too. I started having weakness in one leg and then numbness in my big toe.

    I had a laminectomy, which fixed things for awhile. But the short version is I ended up with fusions and am now fused L1-S1. My vertebrae started to slide forward and cause problems. I think mostly from the impact of the injury. But I kept running as much as I could with the surgeons ok. I finally quite after this last fusion as I am having SI joint problems.

    I am probably an extreme case. I have a top notch back surgeon who discovered all my problems. It did take MRI's each time and for the 2nd fusion it was because my spine was falling in on itself (the other 2 from vertebrae moving and pressing on the nerve).

    All told it took many years from my accident til the spine started deteriorating.

    I am sorry you are having such a hard time with the doctors. At least the epidural gave you some relief. I have had mixed results with them. But they are also diagnostic as they can tell where the problem is if the pain is resolved.

    I hope this has been helpful. I hope you can find a spine doctor who can answer your questions. Please keep us posted.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Welcome to spine health. Have a look around and you will find many whom take some time to get a true diagnoses. With that said did they tell you why they did the epidural injection and what level did they place the epidural injection. Sometimes injections are done for diagnostics purposes as well as some relief. Did the doctors say anything about doing more of the injections as in a series of three? How many opinions did you get as to what is going on? when do you see the doctor back that either did the injection or the doctor whom ordered the injection?

    You can look at a dermatone map and see if any of the leg issues your experiencing are the same pattern as the level of the images. While the map is not perfect it can help.

    As far as the injection only providing 25% relief, sometimes it can take sometime for it to fully take effect. Keep us posted, once again welcome to spine-health.
  • dilaurodilauro ConnecticutPosts: 9,856
    you need to get a firm diagnosis. From what you posted, your MRI indicated Degenerative Disc Disease and some Spinal Stenosis.

    Having DDD doesnt surprise me or anyone really. DDD is basically the aging of our spines and most people by the time they turn 30 will show some signs.

    Most of the time, DDD can be managed through an approved exercise program and NSAIDs. Only the most severe cases will require surgery.

    Take a look at these Spine-Health articles:

    Degenerative Disc Disease


    Spinal Stenosis

    You are just one of so many others out here when it comes to a diagnosis. Its really not a case of mis-diagnosed, but more to the fact that tests to date have not been able to identify what your problem is.

    There are many other diagnostic tests that doctors use to isolate the problem.

    What was the rationale for giving you the epidural injection? Doctors need to justify these to the insurance companies, so they must have some clue to what your problem is.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks for all your thoughtful, helpful replies.

    The weird thing is, on the left side, there's virtually no pain. Just not very much strength -- the best way I can describe it is when you wake up in the morning and you can't quite make a fist. When I try to run or walk fast, I also start to lose some feeling in the outside of my foot/pinkie toe.

    I guess I should feel grateful that I'm not in pain -- I read some of the posts on this site and it breaks my heart.

    The doc ordered the epidural with the belief/hope that the problem was just a really stubborn, inflamed pinched/impinged nerve. Stupid me, a few days after I got it, I had to test it out and did a 12-mile run. And then another one the next day. Stupid stupid stupid. I've got to commit myself to getting this healed, but I'm really depressed about not running.

    I go back in 4 weeks, possibly for another shot. I think if I'm good this time, the shot will do a lot of good.

    Arggh, so frustrating. I know back surgery has progressed a lot over the past few years, but I'd still rather not have it.
  • I know what you mean about missing running.I miss it terribly. But I had to stop so I could heal and not totally ruin my spine, which is mostly ruined anyhow.

    Hope the next shot works. Did they give you anything to relax you?? I have found in my many many shots that if I am out or nearly out the doctor has a much easier time of getting the needle in to where it needs to go. I am so bad that I flinch before the needle even goes in and that tightens all my muscles. Pavlovs dog!!

    Some of my first signs were weakness. I never knew when I would stand up or be walking when my leg would decide not to support me. That and numbness in the big toe.

    Swimming is really good for the back. Being weightless is wonderful. Of course its not running but its a way to get your endorphins. I swim with a masters team and its lots of fun besides a great workout.

    Keep me posted on how the next shot goes.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Yes, swimming is the wave of the future, I guess.
    I'm bummed that so little of my athleticism has transferred to the pool -- I never learned to swim as a kid, so I am starting from the ground up. Your story is encouraging.

    Are there certain strokes you've discovered that are better/worse for your back? I've been trying to master freestyle, and I read all kinds of stuff on the internet -- mostly that swimming, in general is good for your back, freestyle is ok, but I've also read in a couple of places that the twisting isn't good for stenosis. What's your experience been like?
    a million thanks!
  • I swam competitively as a kid so I am very comfortable in the water and with all the strokes. Swimming is a very technical sport. Your body should rotate as a whole with freestyle and backstroke so should not bother your back. Freestyle and backstroke are long axis strokes which means you rotate on the long axis of your body, from head to toes. Butterfly and breaststroke are short axis strokes.

    The best thing to do is find a masters program. They welcome everyone. That way you will get good coaching on your freestyle and can learn other strokes if you want.

    After my fusions I could only do free and back for awhile but was eventually able to get back to all strokes.

    I would definitely start with freestyle. Concentrate on rotating the whole body and not just from the shoulders and waist.

    Good luck and keep me posted!!

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Hi LA_runner_chick,

    I was interested in your first post, knowing from browsing the forum that you have since been diagnosed with lateral spinal stenosis.

    I'm on the (Canadian) waiting list for spinal decompression and fusion and have DDD and lateral stenosis mostly of L4-5 on the L side. I'm 67 but had my first symptoms about 20 years ago. I played squash for 30 years and gave it up three times, trying again each time after the back stopped hurting, but for the last time aged 53. I know other runners and racquet players with the same problem (plus knee and hip arthritis) so I think at least part of the problem is the constant pounding on the joints during long-term heavy physical activity over the years.

    When I was playing squash I had a lot of back pain after playing, but my first symptom of SS was numbness in the L leg on walking and prolonged standing. This is called neurogenic claudication, and would get worse, with weakening of the leg and limping, until I sat down. Within a few minutes it would clear and I could get going again. I lived with this for 10 years and simply adjusted my lifestyle, but in the following ten years it slowly got worse, and was associated with very unpleasant feelings in the back of the L leg, the outside of the calf, and the foot and big toe. As time went on I, too, felt a sense of instability and stiffness, and when I walked I felt that the joints would not hold me. In the last year it has spread to the right side too, and I have started having problems at night when I try to sleep. I have to lie on my side with my knees up. If I lie on my back the L leg goes numb.

    I know what it is like to have to give up a physical activity that you love. You might consider cycling. Lateral spinal stenosis gets worse when the spine is extended, since the spine behaves like a concertina closing up the nerve root foramina behind the bodies of the spine. On the other hand, when you flex the spine forward, (for example riding a bicycle), these holes open up, easing the pressure on the nerve roots. For the same reason freestroke and backstroke may be ok in swimming, as noted by janiski above, but breaststroke or fly may not. Just try them out. If it feels good, do it.

    Good luck,
    Retirement is like being a teenager again - but with more money and sense
  • I used to lift a lot until I was diagnosed @ 17. Lol ill be stoked if I can walk in 10 years let alone run haha
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