Symptoms and Diagnosis of Tethered Cord Syndrome (TCS)
Typical symptoms in patients suspected of tethered cord syndrome include low back pain and leg pain. These symptoms may also be caused by ligamentous lumbar or pelvic instability, which can irritate lumbar nerve roots or the sciatic nerve, resulting in pain that radiates down the leg. More concerning symptoms—such as bowel and bladder dysfunction (incontinence, urinary frequency, pain, or burning)—raise the urgency for a proper diagnosis. We emphasize the importance of accurate diagnosis, noting that more invasive treatments, including surgery, are often considered when such symptoms are present.
In the spine, the spinal cord is designed to move freely between the spinal canal. When tissue of the spinal cord is abnormally attached to the wall of the spinal canal, the spinal cord can by pulled on and stretched causing tension and a vast array of symptoms. What causes it? Birth defects for one, but in this article and video we will discuss a less pursued possibility. Ligamentous cervical instability or ligamentous lumbar pelvic instability, causing tethered cord symptoms.
Surgical and Non-Surgical Treatment Options
The accepted standard for treating symptomatic tethered cord syndrome is typically surgery. As we see many patients who have tried many treatment options over years, we see many who have had spinal fusion surgery, low back surgeries, and tethered cord surgery. Some have had good success with surgery. I also see people that failed the surgery. The surgery might have given them more symptoms or the surgery lessen the symptoms but they still have symptoms. If you have symptomatic tethered cord syndrome the standard or what’s the accepted standard of medical treatment is surgery. We will discuss surgery further below.
1:01 Is it the right diagnosis?
Symptoms of Tethered Cord Syndrome can often confuse a patient’s diagnosis. Symptoms include:
- Lower back pain
- Scoliosis
- Numbness or weakness in the legs
- Foot deformities
- Difficulty walking
- Bowel and bladder problems
The filum terminale
The filum terminale, which is a filament (a string-like structure) located at the end of the spinal cord can become excessively thickened or lose its elasticity. This condition can result in the spinal cord being fixed and stretched.
I’m always amazed at even with tethered cord we’re not asking the question why is the filum terminale thickened? It could be it’s thick because it’s trying to stabilize something. It may be trying to stabilize the spinal cord because the spinal cord is under so much tension. Or the filum terminale is part of a spinal instability at the sacrum and coccyx. There’s extra motion.
Ligamentous Instability and Its Role in Symptoms
We have to make an important distinction between symptoms caused by tethered cord syndrome and those resulting from lumbo-pelvic instability. Clinicians and patients need to consider whether instability might be the primary issue. In cases where nerve irritation is due to ligamentous instability, prolotherapy—a treatment aimed at strengthening ligaments—may help alleviate symptoms.
When you dive deep into the problems, you realize that some of the people actually might have an instability issue and one of the treatments is Prolotherapy. If a person has nerve irritations the lumbar nerve roots, the sciatic nerve, the sacral nerve can become inflamed and irritated from ligamentous lumbosacral or lumbopelvic instability then Prolotherapy, and injection technique that uses various solutions included dextrose, platelets and bone marrow stem cells, should be able to help it.
Prolotherapy and Treatment Guidelines and Comprehensive review of Prolotherapy research.
If a chronic disabling symptom cannot be explained by nerve issues or fluid flow problems, the cause is likely dysfunction in the organ’s connective tissue.
Hauser’s Law 5
According to Hauser’s Law Number Five, if a chronic disabling symptom is not due to nerve dysfunction or a fluid flow issue, it is caused by an organ losing its connective tissue support. This principle is applied to pelvic organs such as the rectum and bladder, which are supported by ligaments connecting them to the pelvic bones. Excessive movement of these bones due to ligamentous laxity can lead to symptoms such as frequent urination, bladder pain, and rectal dysfunction, particularly in individuals with connective tissue disorders (e.g., Ehlers-Danlos syndrome, hypermobility spectrum disorders).
Research
Let’s look at a recent published case study of co-occurrence of tethered cord syndrome and cervical spine instability and hypermobile Ehlers-Danlos syndrome. Basically what the authors are saying is we’re finding that people that are loose jointed have ligamentous cervical instability and then they have tethered cord and there’s these common symptoms. Here is a summary:
A July 2024 study in the Frontiers in neurology (1) acknowledged “hEDS patients may experience spinal neurological complications, including cervico-medullary symptoms arising from cranio-cervical and/or cervical instability/hypermobility, as well as tethered cord syndrome.”
Tethered cord syndrome patients typically suffer from “lower back pain, balance issues, weakness in the lower extremities, sensory loss, and bowel or bladder dysfunction. Cervical instability due to ligament laxity can lead to headaches, vertigo, tinnitus, vision changes, syncope, radiculopathy, pain, and dysphagia. Tethered cord syndrome and cervical instability not only share clinical features but can also co-occur in hEDS patients, posing challenges in diagnostics and clinical management.”
We present a review of the literature and a case study of a 20-year-old female with hEDS, who underwent surgical interventions for these conditions, highlighting the challenges in diagnosing and managing these complexities and underscoring the importance of tailored treatment strategies to improve patient outcomes.
In this paper, doctors describe the case of a 20 year old patient who was treated with cervical fusion. Here is their report:
The patient had symptoms for nearly 15 years before she was diagnosed with hEDS. Her spinal symptoms lead to standard imaging of the spine in the supine position, and these were initially reposted ‘normal’, until she had upright dynamic imaging of the spine. While the patient did manifest signs and symptoms of a myelopathy, it was not until she had upright imaging of the cranio/cervical spine that the confirmation was made of cervical spine instability.
Thus far, surgical intervention has proven a successful course of treatment. At the clinic this patient was seen at, the doctors there noted: “Treatment of tethered cord syndrome prior to cervical fusion for cervical instability is recommended, because of the possible improvement in cervical symptom severity once the downward tension of the spinal cord is released. In the case study, the patient was not treated for tethered cord syndrome as symptoms were not obvious until after cervical fusion, however addressing tethered cord syndrome prior to fusion may have improved some of her cervical symptoms, possibly eliminating the need for fusion altogether.”
According to Hauser’s law number five, if you have a chronic disabling symptom such as a horrible pain down my legs and and I’m having some bladder issues or bladder pain and and the urologist can’t figure out why my bladder hurts or why I have burning with urination or why I have urinary frequency like I’m peeing all the time, Hauser’s law number five is that if a chronic disabling symptom is not due to nerve dysfunction or a blood or fluid flow issue the symptom is caused by an organ losing its connective tissue support. How does this relate to the rectum and the bladder? The rectum and the bladder is in the pelvic ring and those organs are connected to by ligaments and connective tissues to the bones of the pelvic rim wall. It’s the connective tissue that keeps the pelvic bones from moving excessively, specifically the sacroiliac ligament.
7:13 Features of tethered cord syndrome
Features of tethered cord syndrome
Progressive low back and leg pain and numbness as well as bowel and bladder symptoms are common features in tethered cord syndrome. A January 2024 study in the journal Frontiers in surgery (2) suggested that 90% of bowel and bladder dysfunction in patients with tethered cord syndrome is caused by thickening and fat accumulation of the filum terminale, They also suggest improvement in symptoms in 57 to 85% of patients who get surgery.
Most people get some symptom improvement from surgery not total relief. That would mean that the underlying condition likely causing filum terminale thickening probably still continues and I would say that that condition is ligamentous lumbosacral lumbopelvic instability.
9:17 Symptoms of TCS
The chart below is adapted from The Surgical Histopathology of the Filum Terminale: Findings from a Large Series of Patients with Tethered Cord Syndrome, (1) published in the Journal of clinical medicine December 2023.
In the chart above, some patients, up to 70% demonstrate neurologic symptoms, back pain, urologic
symptoms, two out of three of these are all symptoms that could occur just from spinal instability. In some patients I see, I order an MRI test to look for tether cord because they have the symptoms. In many I do not find tethered cord, but the symptoms of are still there.
Many of these problems can arise from the loss of the natural lordotic curve in your neck. Our lifestyles flex our heads forward and you have a reversal of the curve because you look down at your cell phones too much. That’s putting tension on the spinal cord and potentially on the nerve root. Then you also get ligamentous lumbar instability or pelvic instability that’s also going to be pulling on the nerves. Now, all of a sudden you have it pulling on your nerves, making for problems in the bladder and rectum. You get pain down the leg, you get back pain.
So one of the treatments to consider should be restoration of the of the curves and as well as Prolotherapy to resolve the instability. If you have chronic Lyme Disease, Whiplash, ligamentous cervical instability, looking at all the commonality in the symptoms, you may want to consider an evaluation for ligamentous cervical or joint instability or lumbar sacral instability because the problem can be instability of the spine.
12:35 Stable vs. Unstable pelvis
Stable vs. Unstable pelvis
In a normal stable pelvis we see the rectum, the cervix, the bladder in their place and the ligaments are tight and solidly attached at the pubic symphysis. If you have extra movement or instability in the sacral joint because the pubic symphysis is LAX or injured, there’s going to be tension in the pelvis. I just call it force distribution dysfunction meaning that in normal activities the bladder is going to move more the rectum, the prostate could move more, the cervix moves more, the uterus moves more. A woman with menstrual cycle irregularities and nobody can figure out can be from a uterus in excessive motion. A young man can have prostatitis without urine bacteria for the same reason. Ligamentous pelvic instability can cause Interstitial Cystitis. A person’s urologist can tell them there’s all kinds of redness in the bladder when they do a cystoscope and nobody knows the cause. The cause can be tension on the bladder caused by ligament pelvic instability.
15:58 Tethered vs. Untethered cord
A normal spinal cord terminates at the caudal level of the L1 vertebrae.
A tethered spinal cord occurs when the cord becomes abnormally attached to tissue within the spinal cord.
17:12 Spinal Curves and cord tethering
The below image shows that if you have a reversal of the normal neck curve, it cam yank and create tension on the spinal cord. Breakdown of the cervical curve, just like a breakdown of the lumbar curve, can put tension on the spinal cord. The spinal cord, under tension might compensatory thicken, causing symptoms described as tethered cord syndrome.
20:30
Spinal instability
When we do dynamic imaging we are looking for the distance between the pubic symphysis and separation in the sacrum. If we see separation in the joints we know instability exists and there is ligament injury. Instability in this area can lead to an acquired tethered cord syndrome. We would want to introduce treatments to strengthen the ligaments and reduce instability. Again if you have ligament injury it can cause dysfunction of the prostate, the rectum, the cervix, and the bladder. It can cause irregular menses, fecal incontinence, infertility, pelvic floor dysfunction, pelvic pain, polycystic
ovarian syndrome, urinary frequency, and urinary incontinence.
23:43 Non-surgical treatment for pelvic instability
Prolotherapy injections are given into the facet joints which are covered by the capsular ligaments. Attention is given to the sacral tuberous and sacroiliac ligament. If you’re somebody who’s been diagnosed with tethered cord syndrome by MRI documentation you know you do have the condition it doesn’t mean definitively that tethered cord diagnosis is causing the symptoms. You may also want to get tested for ligamentous lumbosacral, sacroiliac and pelvic instability. You may then want to explore surgical options like physical therapy, prolotherapy, and proper posture.
35:39 PT after tethered cord surgery
The primary surgery for a tethered spinal cord is a lumbar laminectomy, which aims to release the tethered cord. Here the surgeon will detach the adhered section of the cord and address any developmental abnormalities during this surgical intervention.
Patients following tethered cord surgery receive physical therapy because the surgery itself is not thought of as to have cured the problem. I’m not saying there’s not a place for surgery. I have seen people following tethered cord surgery and physical therapy that had very good outcomes. The reason for the need for physical therapy is that in the surgery, the surgeon gets rid of the scar tissue. Not the cause for the scar tissue formation. Which is joint instability which can be treated with Prolotherapy.
38:05 Tethered cord from other spinal segments
The Myodural bridge is a connective tissue bridge in the cervical spine. In the upper cervical region, tethered cord is considered rare. Most will connect a problem in the thoracic spine at the thoracolumbar junction,
40:25 CCI cases that need surgery
44:55 Sleep posture can worsen symptoms
46:07 Autonomic symptoms improved with prolotherapy
48:06 How you respond to stress affects healing
52:12 Stop overstimulating the brain
References
1 Gensemer C, Daylor V, Nix J, Norris RA, Patel S. Co-occurrence of tethered cord syndrome and cervical spine instability in hypermobile Ehlers-Danlos syndrome. Frontiers in Neurology. 2024 Jul 17;15:1441866. [Google Scholar]
2 Abdulrazeq H, Leary OP, Tang OY, Karimi H, McElroy A, Gokaslan Z, Punsoni M, Donahue JE, Klinge PM. The surgical histopathology of the filum terminale: findings from a large series of patients with tethered cord syndrome. Journal of Clinical Medicine. 2023 Dec 19;13(1):6. [Google Scholar]