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walking pain for 2.5 yrs post-fusion=dural tear (followed by cauda equina)

livingforwardsllivingforwards Posts: 29
edited 10/13/2014 - 6:22 PM in Lower Back Pain
I'm 2.5 yrs post S4-S1 fusion, 4.5 yrs post L4-S1 discectomy for right-side sciatica. I haven't been able to walk pain free since the fusion, it is worsening and I now use a wheelchair for any trips where I'll be standing/walking more than 5 minutes. Turns out when I google that there are lots of post fusion patients with similar pain and disabilities and lives that have been disrupted.

I'm currently pursuing answers to this, so I thought I'd document my progress on this thread in case it'll help anyone else with similar frustrations.


Initial xrays showed I had fused.

Recent emg showed "left medial plantar sensory nerve is delayed with positive Tinel's, positive Tinel's on right side without a delay: tarsal tunnel syndrome. Muscle testing showed ongoing denervation in right gastroc."

Recent CT scan showed "curvilinear calcifications in right paracentral epidural location at L5-S1 may indicate calcified annualar disc protrusion." There was too much artifact from the hardware for the radiologist to see much and an MRI was suggested, which I am pursuing this month.


First surgery wasn't performed until my entire right leg lost feeling and didn't function. Surgery left me with nerve damage and a knotted calf muscle in the affected leg, but I got back to walking and then running again with PT. Was walking up to 10 miles a day before second surgery.

Second surgery was an emergency when the disk collapsed to bone on bone and all I could do was crawl. After this surgery I experienced burning feet upon standing, which resolved, but ankle pain when walking continues to cripple me 2.5 yrs and 4 rounds of PT later. If I continue to walk despite the ankle pain, I get pain in my feet, up the outer sides of both legs, serious tenderness on outer knees, deep thigh pain, sacral pain. There is pain at night that prevents sleep - stretching the glutes, hamstrings and calves helps a bit with this. There is cramping of the right leg after overuse. Gentle Yoga helped a lot one year ago, then I relocated and cannot find a yoga teacher with good anatomy knowledge.

Had a sacral injection to rule out SI joint inflammation, results were unusable because the drugs made me high.
Saw a podiatrist last year who had no answers.
Saw a different podiatrist this year who sent me for nerve conduction testing to rule out peripheral neuropathy.
Saw a neurologist for the nerve testing. He found tarsal tunnel syndrome and gastroc denervation. He sent me to a physiatrist.
Forgot to check the physiatrist online reviews before going to the appointment and wasted $500 because he was a used car salesman with a therapy clinic.
Second podiatrist wanted to perform tarsal tunnel release on both legs with no assurance that it would work. I haven't decided yet as it appears to be a symptom rather than a cause.


I avoid pain meds based on my previous neurosurgeon's research and advice. I had developed stomach erosions from NSAIDs before the second surgery, now healed. Recently I've taken a few Lortab to cope with the pain and stomach erosion is returning.

I am 47, female, 125lbs and don't need to lose weight or learn to eat a healthy diet. I have never smoked. Used to be very active.

I currently do no exercise - first time in my life. Doing my old PT exercises exacerbates the pain. Standing up long enough to cook my husband his dinner exacerbates the pain. I now cannot even stroll around the block with him on a summer evening.

I'll update this thread as I spend all of my husband's income on possibly fruitless medical appointments. I feel sure there is a mechanical failure somewhere in my back that is causing both the pain and damage in my lower legs/feet.

Thursday I return to my primary care doctor to see if he has any bright ideas on what to do next.

(ETA update title)


  • I'm taking my husband with me to the doc tomorrow so we can keep asking questions until one of us understands the situation. We plan to review test results with the doc and ask if an MRI would be useful as suggested on the CT Scan report and if the tarsal tunnel surgery would work... or would the symptoms with more walking. Also if the denervation will stop by itself eventually or, if not, how bad will it get over time.

    If it's a case of a couple of straightforward foot surgeries meaning I can walk again then I'll go ahead. I have always assumed I'd have back pain for the rest of my life, but not being able to walk makes me a bit of a burden on an already burdened family.
  • Woke up with feet already feeling like I'd been walking all night. Can hardly stand and don't even want to sit with feet on the floor.
    Primary care doctor suggested I get the lumbar MRI asap and set me up with an orthopedic surgeon to discuss results. In his opinion either the MRI will show what is causing the tibial compression and an ortho doc can do something about that, or the MRI won't show anything and an ortho doc can then go ahead and do a tarsal tunnel surgery on each leg. He said the gastroc denervation came from the same tibial nerve compression.

    I scheduled the MRI for next week and the ortho for two weeks time. Looked up the ortho on healthgrades to make sure I wasn't getting another complete muppet.

    Despite being laid up on the sofa today with tons of pain and unable to stand up to make lunch, I feel more hopeful now than for the past 9 months with the idea that just perhaps two simple foot surgeries might have me walking again. Trying not to think about it too much though...
  • Have you considered seeking treatment options with a large , major medical university near you? If not, before agreeing to undergo surgery on your ankles, I would suggest that you go to the largest medical hospital near you for consult with both a neurosurgeon and a ortho spine surgeon to ensure that it is not related to your spine and see if there is anything they can do or recommend before undergoing ankle surgery.
    It may be related to some issue in your spine, and it may be able to be corrected, or at least limited in it's severity , and you want to be certain of the actual cause before going ahead with any surgery that may not be the correct option.
    Major hospitals tend to draw the best of the best in specialists and they are far more experienced in dealing with complex spine issues than ones that are more local to us.
  • livingforwardsllivingforwards Posts: 29
    edited 08/14/2014 - 8:06 AM
    Yes, we plan to be very sure before we go through the hooplah of any more treatment. There is a highly recommended neurosurgeon here in the Twin Cities who won't see me without first having her team review all my medical notes and all recent testing. I'm waiting on this week's MRI report before I go back to my primary care doc about which specialist to see. I'd prefer to talk to both an ortho and a neuro before going any further. My husband and I believe the problem is in my spine since it began less than a week after the fusion surgery and is in both legs.
  • I sent you a message...
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 08/28/2014 - 11:23 AM
    Thank you for your updates. It's very interesting to hear another's experiences on this (not so merry) merry-go-round! ;-)
    Osteoarthritis & DDD.
  • Went to a foot/ankle doctor to see if the problem was with my feet. I have olympic athlete level nerve and tendon inflammation in my feet and lower legs - from doing grocery shopping (my olympic sport of choice). He identified that the cause comes from my back not my feet. The sciatic nerves are compressed, causing hamstring and calf tightness (NOT the kind of tightness you can stretch out), causing my stride to be slightly altered (heel comes off ground too fast) and that is causing the insanely painful walking. He didn't have anything else to offer except a recommendation of a sharp spine doctor.

    Went to see the sharp spine doctor this morning and he said the pocket of fluid on the MRI that is at the surgery site could be from a dural tear during the fusion surgery. Apparently it can just sit there and be a literal pain in the backside and legs. Hardware looks fine and he doesn't want to take it out. He said hardware causes back pain, dural tear issues would/could cause bilateral leg pain.

    So, we're scheduling exploratory surgery with the sharp spine doc for late October. They wanted to do it next week but we have a road trip scheduled mid Oct for a family event.. and the doc conceded that if I've dealt with this pain for nearly 3 years another 4 weeks isn't going to make much difference.

    He did say that IF it is from a dural tear, I should get immediate, total, permanent relief from the walking pain when he seals the leak.

    That's a bit much to hope for at the moment, especially sitting here in a boatload of pain, but it'll be astounding if that's what happens.

    And, in case someone is reading this with similar symptoms, when I stretch my hamstrings the first pain that I get is a deep ache in the fronts and outer sides of my lower legs... not the backs of my thighs. Also, my pain does die down with sufficient rest. It took a month of basically bedrest to get it to go away and now I'm only walking from the car to medical offices, but it has improved my ability to sleep at night without the pain waking me up... which TRULY helps with coping with daytime pain and frustration. Trying to cope on 2 hrs sleep every night is soul destroying and I encourage anyone in that position to keep trying new things (like a couple of weeks totally off your feet) to see if you can gather new information about your pain to give to your doctors.

    I probably won't update until after surgery. But hopefully with news of progress :-)
  • Went to see an orthopedic doctor this week to find out if this is from my spine or my ankles. The answer was that he referred me to both a spine and an ankle orthoped. He seemed very confused by my explanation of my pain and said that it could be coming from two different problems.

    I canceled the appointment with the spine ortho after I looked at his online reviews. The ankle doc is still a possibility. I want to walk!

    Tomorrow I am going back to the neurologist (not neurosurgeon) to assess if all this (and other symptoms) could be Parkinson's Disease. Some of my reading today suggests that Parkinson's can cause herniation at L5. My dad, who had Parkinson's, suffered from sciatica but never had surgery or severe nerve damage.

    Will update again soon.

    EDIT: neurology ruled out Parkinsons.
  • no word from the surgeon's office a week after my appointment. Hmmm.

    The leg pain continues to wake me up at night and I'm only pottering about the house, mostly sitting.

    The lack of activity is giving me other aches and pains - my neck and thoracic outlet syndrome are flaring up because I've been watching movies and browsing online, my gut is slowing down and getting painful. I'm trying to move about more today.
  • Surgery is in 4 days.
    Moving around more produced more pain, so tried 3 days in bed in supine position just out of desperation. All pain disappeared - neck, arms, head pressure, back, legs. I'm now pretty certain that all my aches and pains including disabling lower leg pain are caused by a CSF leak. The surgeon intends to seal the dural tear he thinks he'll find.

    I'm more optimistic now that this is the correct diagnosis and that surgery will possibly relieve some of my worst pain.

    I can't understand why I've never tried extended supine bedrest before, except that I rarely get headaches, just awful neck pain, so haven't considered a CSF leak before now. Nearly 3 years of agony and all I had to do was lie on my back for a long weekend for temporary relief. Duh.
  • livingforwardsllivingforwards Posts: 29
    edited 10/13/2014 - 6:20 PM
    had surgery, dural tear was found and repaired. Went home after 48 hrs on back, then getting up slowly. Walked a bit with minimal pain. Went back to ER 3 days later with saddle anesthesia, urinary retention, bowel weirdness (not total incontinence) and L'hermittes Signal. ER did an MRI which showed a larger pool of fluid than the one they had operated on - probably blood this time - putting pressure on some of my cauda equina nerves. ER doc said surgery immediately. Hospital staff said surgery tomorrow. My surgeon showed up and said no surgery, the bladder is malfunctioning from surgical swelling. He deferred to some concerned hospital docs who examined me and apparently discussed surgery or aspiration. They didn't discuss it with me. My surgeon said again for me to go home. Hospitalist waited until my surgeon left the building and said STAY! Because I'm still at risk of developing full cauda equina and all the fun paralysis that goes with that. Bladder had 1.5 liters fluid in it, which means I'll be catheterized for at least a week while the bladder regains tone and function... IF it regains tone and function (and I don't understand HOW it's going to do that with a pool of blood sitting against the nerve).

    A tip: if you think you have cauda equina, go to the biggest city hospital ER you can, even on a Saturday night when you think it will be a four hour wait beside drunks with screaming babies. I came back to the suburban hospital of last weeks surgery. They have an ER but honestly it's more like an urgent care. They had to call and wake up the MRI tech to come in. Total mistake. If I'd gone to the city ER I would have already had some action taken to decompress these nerves.
  • You do have the option of asking for another surgical consult with another surgeon. I developed CES as a result of spine surgery the first time, and relieving the compression of those nerves is imperitive......ask for another surgical consult or a transfer to a larger hospital.......
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