Cauda Equina Syndrome Red Flag Symptoms For Patients
Acute Cauda Equina Syndrome is a Medical Emergency that requires timely diagnosis and treatment to reverse or stop the worsening of neurological and chemical damage to the spinal nerve roots (the nerves in the low back). Please seek Emergency Medical Evaluation Immediately if you are experiencing the RED FLAG symptoms of Acute Cauda Equina Syndrome (A-CES). If diagnosis and/or treatment is delayed it may lead to permanent sexual dysfunction, chronic pain, leg weakness, foot weakness, severe spasms, leaking or uncontrollable bladder/bowels, numbness, and/or paralysis. Do not wait and see if your symptoms get better, seek medical evaluation emergently!
Get evaluated by an emergency medical professional if you have any of the following Red Flag symptoms of A-CES:
Get evaluated by an emergency medical professional if you have any of the following Red Flag symptoms of A-CES:
- Saddle Anesthesia or Paresthesia
- Decreased sensation anywhere in one's legs, pelvic area or bottom that would touch a saddle while sitting on a horse
- If a person cannot feel themselves wipe after using the bathroom, or it feels different than normal
- Their pelvic region or bottom feels different, heavy, or numb
- Having decreased sensation in this area, but it is not totally numb, is a RED FLAG Symptom
- Complete loss of sensation in this region with urinary and/or bowel incontinence is a White Flag Symptom (still seek emergency medical evaluation).
- Bladder and/or Bowel Incontinence or Hesitancy
- Incomplete Cauda Equina Syndrome (CES-I) causes individuals to have difficulty starting urinary flow, maintaining urinary flow, and in some cases, they cannot start urinary flow at all; urinary hesitancy. This can cause urinary retention.
- Inability to feel oneself urinate or defecate, not knowing they went to the bathroom
- Complete Cauda Equina Syndrome (CES-C), individuals lose complete control of their bladder and/or bowels, this is called incontinence. They may or may not know they urinated or defecated in their pants or in bed, due to decreased or absent sensation in the saddle area. Thus, they do not know they have gone. This is a White Flag Symptom (still seek emergency medical evaluation). A White Flag symptom is a symptom in which the likelihood of recovery is diminished due to either severity of the injury, or more commonly, delay in care from missed Red Flag Symptoms. The phrase White Flag Symptoms arose from so many patients being misdiagnosed in the early stages and ending up in the Complete Cauda Equina Syndrome stage in which it is considered too late to reverse the damage; waving the white flag for surrender. There is hope, some individuals with Complete Cauda Equina Syndrome do show some recovery.
- Leg Pain and/or Sciatica
- pain in both legs, not unlike sciatica
- radiating pain down the legs
- Leg and/or Foot Weakness
- Stumbling
- Tripping over one's feet
- Trouble with weight-bearing; unable to stand without falling or needing significant assistance to stand
- Legs giving out
- Difficulty with coordination
- Loss or decreased reflexes
- Severe Lower Back Pain
- New Onset Sexual Dysfunction
- Sensation Changes Below the Waist
White Flag Symptoms of Cauda Equina Syndrome
A White Flag symptom is a symptom in which the likelihood of complete recovery is significantly diminished, but not impossible. Due to either severity of the injury, or more commonly, delay in care from missed Red Flag Symptoms, and other factors not yet understood, there are about 30% of cases of Complete Cauda Equina Syndrome (CES-C) that have reported recovery. Patients without a full recovery may have some recovery, some, unfortunately, have no recovery. It is not understood which patients with CES-C will recover compared to those that will partially recover or will not recover. It is documented in literature that time in CES-C does not necessarily play a role in recovery as it does in CES-R or CES-I. Hence why CES-C symptoms are White Flags, as in late signs and poorer outcomes in general. Remember, every patient is different, so please do not go into recovery with a defeated attitude. Go into recovery with the attitude of being part of the 30% that recover, and fight!
The term White Flag Symptoms reflects the unfortunate reality that many patients are being misdiagnosed and/or have a delayed treatment in the earlier stages of CES, CES-R and CES-I, the end up progressing to the CES-C stage. At which point, according to literature, prognosis is poor for full recovery compared to those with CES-R which has the best outcomes, and CES-I unfavorable outcomes but full recovery is possible in some cases. Worse still is many patients have reported to this foundation that the doctor told them, "It's not CES because you do not have incontinence or saddles anesthesia"- both signs are consistent with CES-C and the poorest outcomes. CES-R is the current earliest stage of CES known and has the best patient outcomes- and an MRI and pre-post void bladder scan can aid in diagnosis.
Current literature is incomplete in determining whether surgical treatment is appropriate in C-CES cases. Most physicians still recommend surgical intervention to aid in preservation of other neurological functions still present, but when that intervention is appropriate is heavily debated. More research is needed in this subject area, more research is needed in all aspect in the field of CES.
Remember, there is hope, some individuals with CES-C do show some recovery, a few have full recoveries. With proper and timely pelvic floor physical therapy, aggressive neuro-recovery physical therapy, occupational therapy, and pure determination and fight, many individuals are able to adapt to living life with cauda equina syndrome, and you can too!
The term White Flag Symptoms reflects the unfortunate reality that many patients are being misdiagnosed and/or have a delayed treatment in the earlier stages of CES, CES-R and CES-I, the end up progressing to the CES-C stage. At which point, according to literature, prognosis is poor for full recovery compared to those with CES-R which has the best outcomes, and CES-I unfavorable outcomes but full recovery is possible in some cases. Worse still is many patients have reported to this foundation that the doctor told them, "It's not CES because you do not have incontinence or saddles anesthesia"- both signs are consistent with CES-C and the poorest outcomes. CES-R is the current earliest stage of CES known and has the best patient outcomes- and an MRI and pre-post void bladder scan can aid in diagnosis.
Current literature is incomplete in determining whether surgical treatment is appropriate in C-CES cases. Most physicians still recommend surgical intervention to aid in preservation of other neurological functions still present, but when that intervention is appropriate is heavily debated. More research is needed in this subject area, more research is needed in all aspect in the field of CES.
Remember, there is hope, some individuals with CES-C do show some recovery, a few have full recoveries. With proper and timely pelvic floor physical therapy, aggressive neuro-recovery physical therapy, occupational therapy, and pure determination and fight, many individuals are able to adapt to living life with cauda equina syndrome, and you can too!
High risk Cauda equina syndrome
Some cases of Cauda Equina Syndrome are slow onset and present slightly differently. These cases are classified as high-risk of developing Cauda Equina Syndrome (HR-CES) and may slowly progress into acute cauda equina syndrome (A-CES). Equally important to note, these patients may never go on to develop A-CES.
These patients usually have one or more risk factors of developing CES, such as a congenital defect or chronic low back pain. These patient usually have Red Flag symptoms for a long time they may even be intermittent, coming and going. Symptoms that are common in HR-CES patients are sciatica, low back pain, periodic numbness, or a numb toe/foot, and difficulty with initiating urinary flow. Though these are all Red Flags of CES, in slow onset CES the imaging on these patients is not indicating that they have acute cauda equina syndrome (A-CES).
These patients may experience slowly worsening Red Flag symptoms over time. Unfortunately, in many cases the earliest of symptoms of A-CES get missed because of the slow changes. There seems to be a reluctance of re-imaging patients with HR-CES when they have changes in their symptoms, this is a contributing factor to delayed diagnosis of A-CES.
So, if a patient has slow-onset or HR-CES, when should they be concerned that they have transitioned into A-CES?
It is important to understand what HR-CES is (another name for slow-onset CES). Unfortunately, most, if not all doctors, do not diagnose patients with slow onset-CES or HR-CES. There is not diagnosis code for it and it is not recognized by most physicians, though it is frequently found in literature. This is due to under-education of CES and high medicolegal consequences of misdiagnosing and delayed diagnosis of CES.
Being classified as HR-CES does not mean that a patient has CES, only that there is a higher risk of developing acute CES (A-CES). These patients may or may not develop A-CES but should be educated on when to seek emergency medical evaluation. Some of these patients are such high risk of developing CES that some physicians determine that it is safer to go ahead with surgical intervention rather than continue with physical therapy and monitoring. If you have HR-CES, be sure to ask the doctor when you should seek emergency medical evaluation.
The emergent evaluation of suspected HR-CES and CES-I (Acute Incomplete CES), is the same (emergency MRI, pre-and post-void bladder scan, neurological exam, pain management). However, that is where the similarities end. HR-CES may not require immediate treatment, that is dependent on the neurosurgeon/neurologist and the patient's condition at that moment in time.
Conservative treatments such as anti-inflammatories, steroids, pain control, muscle relaxant, and/or physical therapy, bracing, heat/ice may be beneficial in cases where there may be some mild compression or flattening of the thecal sac but no nerve root compression injury. Some surgeons will do surgery to prevent further risk of compression of the cauda equina (CE) if they feel the risk is too high to wait and see or if their judgement determines that is the best course of action for the patient's current condition, among other determining factors.
This is definitely an area where both the patient and the physician should have open communication, and the physician should be providing patient education so the patient can understand their recommendations of the patient's care plan. It is also important for the patient to understand that since they do have high risk CES, they need to be aware of what their Red Flags are. What does this mean?
Since the patient may already have some of the Red Flags of CES when they visit the physician for HR-CES, it is important that the patient asks the physician when they should seek emergency care as their Red Flags may now be different than what is conventionally known for new onset symptoms. Such new Red Flags of CES for patients diagnosed with HR-CES are any new or worsening Red Flag Symptoms. Your doctor may have more specific directions for you, so be sure to ask them what to look for and when to seek emergency evaluation.
It is also important to know that there are many causes of CES and not all causes are treatable, some causes are what is termed idiopathic, meaning unknown cause and therefore there is no treatment known to stop further progression or reverse damage already done. 80% of cases are caused by some type of compression injury, usually from a herniated disk.
Once a patient has CES-I, it is imperative that treatment is started within 48 hours of onset of symptoms, NOT from the date of diagnosis. In this stage, early treatment leads to the highest probability of reversal of symptoms or the stoppage of worsening symptoms. Once a patient has CES-C (complete Cauda Equina Syndrome), it may be too late! Patients that have CES-C have the worst patient outcomes and rarely recover function, those that do have a recovery of incontinence usually are left with motor and sensory deficits.
The optimum time to treat Cauda Equina Syndrome is during the CES-I stage or in severe HR-CES stages. Do not wait for incontinence to treat Cauda Equina Syndrome as worse outcomes are reported. This does not mean that recovery is not possible, its just not as likely and may require more recovery time and therapies to overcome or adapt to any deficits after treatment.
Those sent home with HR-CES for treatment of back pain, please seek immediate medical attention if experiencing new or worsening Cauda Equina Syndrome RED FLAGS, see below for other slow-onset symptoms to watch for.
These patients usually have one or more risk factors of developing CES, such as a congenital defect or chronic low back pain. These patient usually have Red Flag symptoms for a long time they may even be intermittent, coming and going. Symptoms that are common in HR-CES patients are sciatica, low back pain, periodic numbness, or a numb toe/foot, and difficulty with initiating urinary flow. Though these are all Red Flags of CES, in slow onset CES the imaging on these patients is not indicating that they have acute cauda equina syndrome (A-CES).
These patients may experience slowly worsening Red Flag symptoms over time. Unfortunately, in many cases the earliest of symptoms of A-CES get missed because of the slow changes. There seems to be a reluctance of re-imaging patients with HR-CES when they have changes in their symptoms, this is a contributing factor to delayed diagnosis of A-CES.
So, if a patient has slow-onset or HR-CES, when should they be concerned that they have transitioned into A-CES?
It is important to understand what HR-CES is (another name for slow-onset CES). Unfortunately, most, if not all doctors, do not diagnose patients with slow onset-CES or HR-CES. There is not diagnosis code for it and it is not recognized by most physicians, though it is frequently found in literature. This is due to under-education of CES and high medicolegal consequences of misdiagnosing and delayed diagnosis of CES.
Being classified as HR-CES does not mean that a patient has CES, only that there is a higher risk of developing acute CES (A-CES). These patients may or may not develop A-CES but should be educated on when to seek emergency medical evaluation. Some of these patients are such high risk of developing CES that some physicians determine that it is safer to go ahead with surgical intervention rather than continue with physical therapy and monitoring. If you have HR-CES, be sure to ask the doctor when you should seek emergency medical evaluation.
The emergent evaluation of suspected HR-CES and CES-I (Acute Incomplete CES), is the same (emergency MRI, pre-and post-void bladder scan, neurological exam, pain management). However, that is where the similarities end. HR-CES may not require immediate treatment, that is dependent on the neurosurgeon/neurologist and the patient's condition at that moment in time.
Conservative treatments such as anti-inflammatories, steroids, pain control, muscle relaxant, and/or physical therapy, bracing, heat/ice may be beneficial in cases where there may be some mild compression or flattening of the thecal sac but no nerve root compression injury. Some surgeons will do surgery to prevent further risk of compression of the cauda equina (CE) if they feel the risk is too high to wait and see or if their judgement determines that is the best course of action for the patient's current condition, among other determining factors.
This is definitely an area where both the patient and the physician should have open communication, and the physician should be providing patient education so the patient can understand their recommendations of the patient's care plan. It is also important for the patient to understand that since they do have high risk CES, they need to be aware of what their Red Flags are. What does this mean?
Since the patient may already have some of the Red Flags of CES when they visit the physician for HR-CES, it is important that the patient asks the physician when they should seek emergency care as their Red Flags may now be different than what is conventionally known for new onset symptoms. Such new Red Flags of CES for patients diagnosed with HR-CES are any new or worsening Red Flag Symptoms. Your doctor may have more specific directions for you, so be sure to ask them what to look for and when to seek emergency evaluation.
It is also important to know that there are many causes of CES and not all causes are treatable, some causes are what is termed idiopathic, meaning unknown cause and therefore there is no treatment known to stop further progression or reverse damage already done. 80% of cases are caused by some type of compression injury, usually from a herniated disk.
Once a patient has CES-I, it is imperative that treatment is started within 48 hours of onset of symptoms, NOT from the date of diagnosis. In this stage, early treatment leads to the highest probability of reversal of symptoms or the stoppage of worsening symptoms. Once a patient has CES-C (complete Cauda Equina Syndrome), it may be too late! Patients that have CES-C have the worst patient outcomes and rarely recover function, those that do have a recovery of incontinence usually are left with motor and sensory deficits.
The optimum time to treat Cauda Equina Syndrome is during the CES-I stage or in severe HR-CES stages. Do not wait for incontinence to treat Cauda Equina Syndrome as worse outcomes are reported. This does not mean that recovery is not possible, its just not as likely and may require more recovery time and therapies to overcome or adapt to any deficits after treatment.
Those sent home with HR-CES for treatment of back pain, please seek immediate medical attention if experiencing new or worsening Cauda Equina Syndrome RED FLAGS, see below for other slow-onset symptoms to watch for.
- Sexual Dysfunction
- Men- Erectile dysfunction (inability to get an erection, inability to maintain an erection, inability to ejaculate)- if sudden in conjunction with back pain, seek emergency medical help.
- Women- Decreased sensation, vaginal dryness (common in spinal injuries), vaginal prolapse (the vaginal wall loses its muscle tone and starts coming out of the vaginal canal, the uterus, bladder, urethra, can also descend into and/or out of the vaginal canal, one may also develop anal prolapse)
- Decreased Sensation in one or both legs and/or feet
- Unable to feel light touch, unable to feel the difference between hot and cold, unable to feel anything
- Frequent constipation and/or leakage
- Anal Prolapse
- This results from the decreased tone of the sphincter muscles in the anus, allowing for part of the lower intestines to protrude out.