Surgery for Tethered Cord in Adults?

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tethered cord surgery eds

One of the trends I have seen these past few years is a number of people getting diagnosed with a tethered cord and getting surgery for this issue. So what is this and why would surgery be needed? Are these patients getting needed procedures or exposing themselves to serious risks they don’t need to take? Let’s dig in.

What Is a Tethered Spinal Cord?

At its most basic, your spinal cord projects down from your brain and contains the major wiring that tells your muscles to move and allows you to feel things. It’s connected to the brain and travels through the spinal bones (vertebrae) and usually ends at the lowest part of the upper back (T11-L1). There are nerves below that called the cauda equina (horse’s tail). There’s also a piece of connective tissue that anchors it from below called the filum terminale (filum).

When something from below causes the filum to get stuck, like a tumor or scarring from prior low back surgery, the filum can yank on the cord and pull it down as shown below. When that happens, it’s called a “tethered cord” (1).

Most of the pressure is on the lower part of the spinal cord with the connective tissue of the cord diffusing the pressure as you go up. That’s why most of the symptoms are in the low back and legs (lower spinal cord and nerves). However, another aspect of that diagram to the right is that some believe that a tethered cord can also pull on the brain and cause it to hang low in the skull base, intersecting with a disease called “Chiari Malformation”. More on that below.

tethered cord

The most frequent tethered cord patient is usually a kid with Spina Bifida. It can be congenital (the person is born with it) or acquired later in life. If it’s the later, there is usually something pulling on the filum terminale or it’s stuck on a physical obstruction or scarred down. That obstruction can be a fatty tumor, a spinal cord tumor, or a bone spur. In addition, local scarring of the nerve roots after back surgery (i.e. failed back syndrome) is also a known cause. In rare instances, this problem can also be seen in scoliosis.

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Symptoms

Symptoms include back pain that radiates to the legs, hips, and genital or rectal areas. There can also be bowel and/or bladder issues. The legs can feel numb or tingly and in some patients get weak or begin to lose muscle.

Diagnosis

This is where you need to break an adult with a tethered cord into two camps: traditional and non-tradiutional. For traditional tethered cord due to masses in the spinal canal or prior back surgery, the diagnostic criteria is that the end of the spinal cord is low, below L2 (normally at T12 or L1) with a thickened filum. However, for non-traditional where there is no mass or prior back surgery, the diagnosis is can also be made on clinical symptoms, abnormal urodynamics, and a lack of other things helping the condition.

Urodynamics

One of the items that advocates point to as an indication for the surgery is urodynamics. This is testing of the bladder performed by a urologist that can identify a “neurogenic bladder”. The concern I have is that we have seen many patients through the years with sacral nerve irritation with a neurogenic bladder on urodynamic studies. These are commonly patients with a central L5-S1 disc bulge that irritates the descending sacral nerves or chronic SI joint syndrome that irritates the sacral nerves. Their symptoms and urodynamic studies normalize after a simple caudal epidural to reduce this nerve inflammation. So this usual cause of a neurogenic bladder would need to be ruled out in surgical detethering candidates before a procedure was performed.

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Surgery for Tethered Cord

The most common surgery for tethered cord involves cutting the anchoring tissue on the bottom called the filum terminale. This is called “detethering”. Complications include infection, bleeding, and damage to the spinal cord, which may result in paralysis or loss of bowel or bladder function.

Tethered Cord in Adults

So if a tethered cord is a diagnosis normally found in kids with spina bifida and adults who have rare spinal tumors or prior back surgery gone bad, how is it that some patients who fit none of those descriptions are now getting surgery to treat this issue?

tethered cord and eds cci

The diagram above is how various problems may intersect with tethered cord.

The connection between tethered cord surgeries and adult patients starts with Chiari malformation (3). This is a problem where the brain is hanging low in the skull and the bottom part (the cerebellum) can get pushed into the spinal canal. While this is a rare and serious medical condition. more recently we’ve seen a huge number of surgeries being performed for Chiari problems that were previously never operated (Chiari 1 and 0). In these cases, the brain is only minimally pushed downward or barely so. I’ve seen many of these patients post-surgery in the clinic who are no better and in many ways worse, but now they have a huge hole carved in the back of their skull and their upper neck biomechanics are permanently altered for the worse.

The new concept that’s pushing patients toward detethering surgeries is an overlap between Chiari malformation and a tethered cord. This is still pretty controversial, as the biomechanics of the spinal cord don’t necessarily support that this is possible. Meaning that any downward force from a tight filum would be absorbed by the lower spinal cord.

Despite this, there are patients (and a handful of neurosurgeons) who believe in the diagram on the right as seen above. That is that a tethered cord is pulling the brain down, thus leading to Chiari malformation thus these patients require detethering. That interfaces with EDS (Ehlers Danlos Syndrome) patients, who have super stretchy ligaments, because it’s believed that the connective tissue that normally anchors the brain and holds it up is too loose, thus allowing it to hang low in the skull (4). Hence, the rationale is that they too may need detethering to reduce the downward pull on the brain.

So how do we get from CCI (craniocervical instability) to detethering? These patients have damage to the ligaments that hold the head onto the spine. However, some CCI patients have EDS, which is likely why a handful of patients with CCI are considering getting their filum cut.

Research?

I searched the US National Library of medicine for any research on the following topics:

  • Adult Tethered Cord Syndrome-Not much on PubMed using that search, but more on Google Scholar-A case series that again doesn’t apply to this discussion as the detethering was performed for traditional causes of tethering like tumors. Or this overview paper that again focuses on kids or adults with spinal masses or prior back surgery. This is a theoretical paper on this actual topic (adults with symptoms without known masses causing tethering) but provides no higher level clinical data. This paper describes 24 patients treated over 11 years who didn’t have masses and had a primary presentation of backpain. In reviewing many of these listed papers, most again focus on patients with traditional causes of a tethered cord and not on adults with no known risk factors who suddenly develop symptoms.
  • Ehlers Danlos Syndrome and detethering – NONE
  • Chiari Malformation and detethering – Some, no high-level research, most in kids with spina bifida or other common causes of tethered cord like tumors.
  • Craniocervical instability detethering – 2 hits-one case report on a rare congenital defect and a surgery planning study for C1 screw placement. Meaning zip on an adult with CCI getting a detethering procedure.

What Could Go Wrong?

This is the mantra that every patient considering an invasive surgery like cutting the connection of the spinal cord needs to consider. Almost all of the research on detethering and possible complications is done in kids with spina bifida. Unfortunately, most of these kids don’t walk and have severe functional and developmental delays. Meaning that detecting complications in this group would be very tough. In an adult who walks and talks and otherwise isn’t wheelchair-bound, the significance of complications that could include never walking again is a much bigger deal. However, we have no real reports of the complications of detethering in this new group of patients getting the surgery.

Should You Get Chiari or Detethering Surgery?

These are NOT first-line treatments. Carving a hole in the back of your skull to treat a mild Chiari malformation is something that is a last-ditch effort to treat someone who is otherwise functionally disabled and who has tried everything else less invasive. The same holds true for cutting the connection for the spinal cord.

One of the big problems that I see is that the filum terminale is there for a reason. It anchors the spinal cord and nerve roots. Cutting it will permanently impact the biomechanics of how your spinal cord and spinal nerve roots move. Once that’s done, there is no going back and reconnecting it.

The upshot? Surgery for a tethered cord is a last-ditch option in a patient who is disabled and has explored all other non-surgical options. It is not a primary treatment for someone who has a mild Chiari malformation, EDS, and/or CCI. Please be careful out there as most of these surgeries are biomechanical one-way streets. If they work, everyone’s happy, but when they don’t work, the patient is left with permanent damage and a change to their biomechanics that can never be fixed.

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References:

(1) Düz B, Gocmen S, Secer HI, Basal S, Gönül E. Tethered cord syndrome in adulthood. J Spinal Cord Med. 2008;31(3):272-278. doi:10.1080/10790268.2008.11760722

(2) O’Connor KP, Smitherman AD, Milton CK, Palejwala AH, Lu VM, Johnston SE, Homburg H, Zhao D, Martin MD. Surgical Treatment of Tethered Cord Syndrome in Adults: A Systematic Review and Meta-Analysis. World Neurosurg. 2020 May;137:e221-e241. doi: 10.1016/j.wneu.2020.01.131. Epub 2020 Jan 28. PMID: 32001403.

(3) Talamonti G, Marcati E, Mastino L, Meccariello G, Picano M, D’Aliberti G. Surgical management of Chiari malformation type II. Childs Nerv Syst. 2020 Aug;36(8):1621-1634. doi: 10.1007/s00381-020-04675-7. Epub 2020 May 30. PMID: 32474814.

(4) Mancarella C, Delfini R, Landi A. Chiari Malformations. Acta Neurochir Suppl. 2019;125:89-95. doi: 10.1007/978-3-319-62515-7_13. PMID: 30610307.

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11 thoughts on “Surgery for Tethered Cord in Adults?

  1. Hillary

    Thanks for this article—although physicians routinely failing their patients is probably the main reason these Facebook groups exist, I find a lot of the armchair medicine happening in the groups to be really alarming and unhelpful. After my head/neck injury, I was told multiple times by other patients that I might have tethered cord—even though all my symptoms were directly related to my initial injury and were exacerbated by a car accident (and went away when I addressed my neck). Please tell me what a head injury has to do with tethered cord. I was also told by other patients who know nothing about hEDS that hEDS patients “can’t heal.” Also total BS. Then there are the patients who claim to “probably” have EDS even though they don’t meet any of the diagnostic criteria. And don’t even get me started on the ones who do meet the diagnostic criteria but who deny having EDS. (And let’s not forget that Eds presents on a spectrum, so comparing cases is hardly useful anyway…) Then there are the more drastic cases: for example, I know of someone who fused multiple levels of their lower neck on a hunch driven by a fellow patient that it would improve and maybe cure their ME/CFS. Guess what? It didn’t. Then there is the creep who goes around all the head injury groups telling everyone they “probably” need to get their skulls fused, even though he’s actually never been treated for anything by anyone. Even when the groups are helpful, which is rarely, it’s not worth the cost of being in an environment where people are whipping each other into toxic rants about their physicians or anxious frenzies that drive them to take risks with real consequences. That said, because physicians tend to hold most of the power in these situations, I think it’s their responsibility to have a finger on the pulse of these online medical trends and do their best to truly verify their validity (as opposed to dismissing new information offhand) when providing care. I think you’ve made a great start of that here, but I am curious to know your thoughts about the association many patients are making between tethered cord and mold inflammation? Mold inflammation seems to be the genesis of a lot of these patients’ tethered cord concerns (the idea kind of spread like wildfire from the ME/CFS community, if I understand correctly), and I don’t see it mentioned here.

    1. Chris Centeno, MD Post author

      Thanks Hilary for going into what occurs in these groups. As I said, it’s always good to have an informed patient, but I tend to see these trends in the CCI/EDS community start and take off like a rocket. All of a sudden we see people who have no business thinking of getting surgery X convinced it’s the only thing that might help them.
      On toxic mold inflammation, I don’t see how that could lead to a tethered cord syndrome unless there was a specific lumbar epidural/dural inflammation that leads to scarring. However, it would be far easier to deal with that adhesion with a high volume catheter-based epidural injection than cutting someone’s filum.

  2. S. Richardson

    Timely blog Dr Centeno….hopefully will convince a friend to come see you before an untethering surgery. She has seen Scott Rosa — he referred her to you for CCI intervention but has not made the trip to Broomfield yet.

  3. MaryAnne

    Your excellent article caught my eye as I have a young (10) cousin with chiari 1. Some docs are saying surgery would help him but I have been advising to hold off.

    Are you saying that you possibly can help him with one of your procedures. They live in NJ and I noticed that there is a NJ clinic.

    Thank you!

    1. Chris Centeno, MD Post author

      I would need to see him in a telemedicine visit to determine if we can help.

  4. Hillary

    Regarding your response to my comment about patients thinking about CCI surgery when they don’t need it, there are two main reasons for this: the first is because of two ME/CFS patients whose illness went into remission after their skulls were fused. These patients didn’t try any other alternatives before fusion, to my knowledge, and I think if they had we’d know because they are quite public about their experiences. They are also quite public about the surgery being a potential treatment for ME. (This rise in CCI surgeries no doubt also corresponds to the advent of new hardware that allows for fusion of the skull—and surgeons looking for new patients on whom to use it. I have heard that Canadian doctors, none of whom perform this surgery, likely for good reason, are absolutely appalled by what’s happening here in the US regarding the rise in this particular surgery.) The second reason for patients thinking they need CCI surgery is—sorry—that prolotherapists and other regenerative medicine specialists, Regenexx included, tend to market their services as an alternative to surgery. While this is mostly fun and games when it comes to arthroscopic joint repair of, say, a knee, the approach is nothing short of terrifying when it comes to the prospect of CCI surgery. So you get a lot of patients who see Regenexx marketing material that includes photos of entire necks fused and a caption along the lines of “this is what we are trying to avoid,” and they freak out, thinking that if they need the PICL they must be on the level of needing that insane surgery. While this isn’t even remotely true, and I don’t think even you would argue it’s the case, I do think it is implied by the marketing approach, and the result is that you get a lot of traumatized patients coming to you. This extends to my own experience with a prolotherapist I saw before Regenexx, who told me that a neurosurgeon would “definitely” fuse my CCJ and that prolotherapy was my only alternative. I didn’t believe him and went to a top neurosurgeon just to see if he was right: the surgeon told me he’d fused someone’s CCJ the week before (so he knew when it needed to be done) and then basically laughed me out of his office. Now, I’m not saying that the PICL hasn’t helped some patients avoid this awful surgery, or that some unscrupulous surgeons won’t perform it even if it isn’t 100% necessary, but I do think that seriously rethinking the CCI marketing approach could be really helpful if you want to minimize anxiety and trauma in an already sympathetics-driven population and steer them away from thinking about surgery when they have no business doing so.

    1. Chris Centeno, MD Post author

      Offering a MUCH safer alternative to CCI surgery is definitely NOT a bad thing. In fact, every spinal surgery now has a less invasive non-surgical alternative. So adding to that list for CCI patients is always a net positive. On prolotherapy, that’s NOT a viable treatment option for CCI.

  5. Jennifer Brea

    This is a pretty terrible take. We’re—the patients on Facebook—are all coming to you. In fact, we are *sending* people to you for care. We are discussing how to think about establishing referral networks TO YOU. E.g., get diagnosed by a neurosurgeon, get sent *to you* as a first line treatment. It’s not a competition. Everyone would rather have regenerative medicine than surgery. Our surgeons would much rather NOT operate on their patients, if they can help it.

    Just a few weeks ago there were two cases of patients with diagnosed craniocervical instability who did not meet the threshold for surgery. Their neurosurgeon recommended they consider stem cell prolotherapy at Centeno.

    Tethered cord syndrome is a progressive neurological condition that, as far as we know, is present from birth, even if it doesn’t cause the catastrophic symptoms until adulthood. The diagnostic process people go through is rigorous (you can’t just “decide” to have surgery as a last-ditch effort). The evidence for tethered cord is greater than the evidence for the treatments you provide.

    Why didn’t you do a search for “adult tethered cord syndrome?” There is plenty of literature. It can be independently diagnosed. The relationship between tethered cord and CCI or Chiari has not been well-established, but the only people I know who claim they can treat CCJ issues by detethering the cord are some dudes in Spain. I don’t know of anyone stateside who subscribes to this idea.

    You cannot have surgery for tethered cord syndrome unless you have a combination of symptoms indicative of tethered cord, failed clinical exam (toe and heel walking), positive imaging (e.g., on prone MRI), and/or positive urodynamics test. Everyone I personally know of who has had surgery has at least 3/4 of these indications in addition to significant disability.

    You’ve greatly harmed your own credibility here.

    1. Chris Centeno, MD Post author

      Jennifer, we have seen a significant number of patients who we know don’t have tethered cord who believe they need surgery. They may not get it because they don’t meet the criteria (which is awesome), but that idea (to which they are very attached) is quite real. These patients and any others who begin in this direction needed to hear the other side of the story-meaning the “don’t let anyone perform neurosurgery on you for any reason until you are 100% sure through multiple opinions that you need it”. As near as I can tell, that message on tethered cord doesn’t exist right now. In fact, I couldn’t find a single study outside of pediatric cases where complications were discussed. That’s not a good thing.

      We don’t do prolotherapy for CCI, so not sure where that one came from.

      On published literature in PubMed on “adult tethered cord syndrome” there are two hits: https://pubmed.ncbi.nlm.nih.gov/?term=%22adult+tethered+cord+syndrome%22&sort=date Both case reports (meaning the lowest level medical research data). On tethered cord and Chiari, there certainly may be some patients for which this is appropriate, but again, that search as you saw didn’t yield much.

      We’re collecting our data and performing a randomized controlled trial with a sham arm now, so we’re doing our due diligence. There are no gold standard RCTs in any of these areas. Tethered cord, Chiari skull base surgery/decompression, or upper cervical fusion.

      Educating caution before huge surgical procedures is always the right message. For all patients, begin with the least invasive thing that may help, and then if that doesn’t work, move up that ladder. A sizable chunk will get help with PICL, some will need to move onto fusion. In that way, patients are exposed to less risk.

      I have no solution for tethered cord so there no competition.

  6. Casey Gutierrez

    Interesting. Adult tethered corder here. Confirmed congenital, but hit me hard and fast after a labral tear of my hip combined with my hypermobility flared it something fierce. After 3 years of living hell going from dr to dr, dismissed and ignored, PT after PT telling me there is something neurological going on, I finally got the diagnosis of TC. It was obvious based on reflexes (that in all my Doctor visits NO ONE bothered to check). I also had a lot of typical chiari symptoms but only a 2mm herniation.. I didn’t just jump into surgery. I got a second opinion. They both said TC does not cause chiari, but that releasing the cord from the bottom often relieves pressure from the top, which it totally did. Headaches gone, pressure behind my eyes gone, pain at the base of my neck gone. Thoracic tightness gone. Dysautonomia symptoms gone.
    I was trail running 20 miles just 10 months post op.

    Oh, did I forget to mention I figured it out myself on the internet? With a ton of help from other people who have been through the same misery? Not everyone is on FB looking for groups to say we have some disease. Many of us are logical thinkers. We want to get better.. I do not take any drugs, no pain meds. I eat a very healthy diet and am very active.. People like me know something is/was very wrong and we are poorly treated and ostracized by the medical community. …and if it weren’t for FB and my own perseverance and ability to advocate for myself I would still be living that hell.

    I will ask though; because you did not say in your article, what other option would you say I had? Especially when no one even acknowledges the problem to know what to try. My experience is there is a big problem within the medical community, and it’s certainly not with the Doctors who actually helped me (and neither surgeon always recommend surgery). But, I am open to hearing what in the world else I could’ve done in that three years to avoid surgery…

    1. Chris Centeno, MD Post author

      Jennifer, first, great to hear this worked for you. Second, I don’t know your medical case, so I can’t comment on what might have caused your symptoms or non-surgical ways to treat them. Third, a blog post on exercising caution before getting a permanent change made to your nervous system is a good thing, not a bad thing.

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