Cauda Equina Syndrome and Me

Claire Thornber from ihavecaudaequina.com  writes about her experience when she developed cauda equina syndrome (CES), a rare but devastating complication of lumbar disc herniation.

My story really begins where you find me today, typing up my cauda equina syndrome (CES) journey to put on this site, hoping that it will become a small part in what the CESA manages to achieve in raising awareness of the cauda equina syndrome, helping stop the unnecessary suffering of even more people and providing support in every way to those people who have Cauda Equina Syndrome.

In September 2010 I herniated my L5 – S1 disc whilst I turned in my sleep. I had grumbling back pain before, that had increased in the previous couple of months to the point where I wasn’t really getting any proper sleep at night because of the back pain and sciatica. The pain took my breath away and I knew, as the pins and needles spread and the numbness crept in, that something terrible was happening to my body….

At the time I was a single parent mum, self-employed, running my own business, providing for my kids myself, I was quite proud of what I had achieved. I owned my own home, drove a brand new company van; we enjoyed family holidays and were happily living our lives.

I left home when I was seventeen and had always been fiercely independent and looked after myself. I had survived some poor decisions and bad relationships but I had come through it strong and determined. I worked hard and played just as hard! I loved my social life and my friends.

My GP was the only medical professional who knew exactly what was wrong from the outset, sending me to my local hospital urgent care centre with a letter saying ‘cauda equina syndrome – orthopaedic referral’.

My letter was somehow overlooked, my symptoms were not appreciated and my protests ignored.  I felt very frustrated as I was sent home, only to be sent back to hospital again by my GP who had to telephone to get me seen.

Delays, delays and even more delays followed and eventually, after what felt like a lifetime, I underwent spinal surgery to relieve the pressure off my poor spinal nerves. The operation was called a lumbar decompression.

I spent about five days in hospital, but left the hospital doubly incontinent, with a weaker left leg and complete saddle/private parts numbness, constant nerve pain and the feeling of a giant telegraph pole rammed up my backside! I later realised that I suffered with sexual dysfunction as well.

In the 2 ½ years since surgery, I have made little improvement. My greatest  achievement was being able to urinate myself at about six months following the surgery. I have however managed to deal with bladder and bowels, realise my physical limitations although I am still struggling to come to terms with my new sexuality.

It has got easier to deal with but I would not wish to re-live those early months for anything, nor would I wish it on my worst enemy.

My own experience taught me how little is really known about cauda equina syndrome. Nobody has ever heard of it unless they or a friend has been affected, and few medical professionals really know all the facts, including being aware of the important red flags.

For me,  the important message is that if everyone was aware of the red flag symptoms, then permanent neurological injury can be avoided. Ignorance is not an excuse for lifelong disability. I am passionate about raising as much awareness as possible about CES, in the hope that I can stop as many people as possible from going through this awful experience. I contribute to a CES website called www.ihavecaudaequina.com– please take a look, especially at the red flag signs!

I also discovered that once you have your back operation then you are very often discharged and left to fend for yourself. I had to get myself referred to a gynaecologist, urologist, sexual counsellor, physiotherapist, incontinence service and such like. Nobody really knew what to do with me.

This made the journey so much harder than it should have been. I scoured the internet for information, only really understanding half of what I read. The greatest help came from the facebook groups where finally people ‘got me’ and knew exactly how I felt.

There were dedicated professionals who have helped me to where I am today, the doctors and nurses are great when you can get to them and the medical professionals really try their best to help but there seems to be no clear pathway to care and support for ces patients. Hopefully we can change this.

This is where I get my motivation. My experience is what drives me today, along with the stories I hear on the CESA helpline and in the facebook groups. It is the same story over and over again happening to different people all over the world!! Surely it cannot be that difficult to make people listen? To change things? When the cost to people lives is so dear?

Personally I now appreciate the extra time I have at home with my family, I am no longer driven by the pound note and see life from a different and much better perspective. I married my fella who had supported me through the bad times but now our relationship is another casualty of CES and we are getting divorced after 18 mths marriage.

I understand how important people and happiness are and I want to change this negative experience in my life to a big positive for everybody affected by it. I have so much time on my hands now to do this but never enough when it comes to telling people about cauda equina syndrome!

Underactive bladder syndrome

First of all, we should get some of the medical jargon explained. “Cauda equina” relates to the nerves in the spine which travel independently to the spinal cord. The spinal cord is one solid structure, with billions of individual nerve fibres making up the structure. The spinal cord has different zones which carry information relating to light touch, sharp touch, vibration, joint position sense, movement and temperature recognition. The spinal cord also carries messages from the front of the brain which tell the bladder not to contract, as it’s not yet convenient to empty the bladder (eg someone’s gone and finished the toilet roll in the bathroom and you need to get a new roll from the cupboard).

The spinal cord sends out a pair of nerves at each different block of spine, or vertebra, which supply all the attributes described above, but they are now in each individual nerve root, AKA spinal nerve. The nomenclature isn’t ideal for spinal nerves, because someone in their wisdom decided to number the bones of the spine differently to the nerves of the spine, giving the neck eight pairs of numbered nerves compared with seven neck bones (cervical spine vertebrae). This means that in the neck, the named nerve for each bone is above its respective vertebra/spine, but everywhere else in the spine, the named nerves are below their respective vertebrae/ spinal levels.

Moving on to the nerves below the spinal cord- the cord peters out at the level of the upper lumbar spine and becomes a collection of individual spinal nerves travelling together in the spinal canal. Each individual nerve now has its full complement  of attributes, instead of the organised structure of the single spinal cord. This collection of central spinal nerves are called the cauda equina and they supply the legs, bladder and bowel functions.

All the nerves which supply movement within the cauda equina nerve group and the spinal nerves can also be called lower motor neurones. They communicate with the movement nerves in the spinal cord and brain called upper motor neurones.

Without getting bogged down in too much detail, when something goes wrong with the spine, it can either affect the spinal cord (including its upper motor neurones) or it can effect the cauda equina (including its lower motor neurones).

If the nerves are severely damaged and stop the electricity supply to the muscles, the muscles become paralysed, ie they can’t move when you try to move them. The type of paralysis can be either flaccid (floppy limbs that won’t move) or spastic (high-tone, stiff limbs that won’t move). Flaccid paralysis is due to cauda equina damage and spastic paralysis is due to spinal cord damage.

Bladder function is affected with both upper and lower motor neurone injuries. Lower motor neurone injuries include cauda equina syndrome ie damage to the cauda equina nerves which include the lower motor neurones. The result is a condition called neurogenic bladder. Neurogenic bladder as a term covers a multitude of symptoms and isn’t particularly helpful as a diagnosis in itself. For cauda equina syndrome, the bladder problem associated with this may be more appropriately called “detrusor underactivity”, or DU. The detrusor muscle is what wraps around the bladder and makes it into one muscular bag. Urine feeds into the bladder from the kidneys and urine leaves the bladder when the sphincter/valves keeping the urine inside (internal and external urethral sphincters) are voluntarily relaxed.

Detrusor underactivity can behave very similarly to bladder outflow obstruction- a really common condition in men with enlarged prostate glands. The basic difference between the inability to wee due to an obstruction and the inability to wee because the bladder won’t contract is the symptom of pain. Painful retention is typical of prostate problems, but painless retention implies that the nerves to the bladder aren’t sensing the overstretching of the bladder wall as the kidneys keep feeding urine into the bladder, but the sphincters won’t relax to let the urine out and the detrusor muscle isn’t able to contract properly either.

In detrusor underactivity, the process of weeing is slow, sometimes requiring physical pressure against the lower abdomen to try and squeeze urine out of the bladder. The urine flow is a trickle and the bladder does not completely empty itself. Sometimes, the sphincters are not very tight and as the bladder over-fills, the pressure inside the bladder becomes greater than the closing pressure of the sphincters, with the result being overflow incontinence. Sometimes, the sphincters never allow urine to pass through and the bladder needs to be manually drained using a temporary or permanent catheter.

Diagnosis of Underactive Bladder

An ultrasound machine is risk-free and non-invasive. It can measure the volume of urine held inside the bladder. Using the ultrasound, we can measure the pre-voiding bladder volume and the post-voiding residual bladder volume (pre- and post-void bladder volumes). A pre-voiding volume of 400mls and upwards should usually coincide with the urge to pass urine, so volumes approaching a litre are definitely not normal. Post-voiding volumes should ideally be zero, ie the bladder completely empties. A residual volume of under 100mls is acceptable, but residuals of 400mls and upwards indicate that manual drainage of the bladder is needed, to prevent the bladder from over-distending and weakening the detrusor muscle further as a result.

Urodynamics are a series of specialised tests performed by a urology team and include measuring urine flow rates and pressure measurements of the bladder and sphincters.

Treatment options for Underactive Bladder

The targets for treatment include helping the detrusor muscle to contract more effectively or interventions which relax the sphincters to allow urine to leave the bladder more easily (you can see how this can be problematic if this strategy is too effective).

1 The 350mls rule

The detrusor muscle is at its strongest when the bladder is filled with roughly 350mls of fluid ie the volume of a typical can of soda. If the person with cauda equina syndrome can be taught to try and empty the bladder frequently, when around 350mls are passed, then the detrusor is at its optimal function.

2 ISC- intermittent self-catheterisation

This is the mainstay management of cauda equina syndrome bladder problems, which involves manually draining the bladder at regular intervals to avoid over-distending the bladder. This method avoids medications or surgery, but involves training to get the technique as hygienic as possible, plus it involves having a regular supply of catheters. This technique tends to be less hassle to perform in men compared with women, who have shorter urethras.

3 Medication

Muscarinic agonists and cholinesterase inhibitors are the two classes of medication used to treat underactive detrusor problems. Examples include bethanechol and distigmine, with mixed reports of response in the published literature (some outcomes are very positive, whereas others are disappointing).

 4 Electrical stimulation

This is an uncommon treatment used when the detrusor can still work, but not very effectively. Intravesical stimulation and Sacral nerve stimulationare both examples of available techniques.

Future Direction

Stem cell therapy is not yet in the clinical arena, but laboratory testing is ongoing, so watch this space.

Further Reading

Here is a useful, if slightly scientific, overview of underactive bladder, , and another one here which give a comprehensive account of the underactive bladder, which has many causes, including cauda equina syndrome.

Thou cold sciatica, cripple our senators, that their limbs may halt as lamely as their manners

Rosie Jones, Osteopath at Swansea Body Kinetics, Swansea, describes the painful symptoms of sciatica and what osteopathy has to offer

As you can see, Shakespeare wasn’t amused by sciatica in the slightest. Sciatica is a condition referring to the pain experienced from the entrapment of a nerve root (the nerve as it exits the spine) in the low back. The sciatic nerve is one of the largest nerves in the body and begins as several nerve roots in the low back, it travels from the lower back down to supply the lower limb. This means that irritation or compression of these nerve roots can cause pain in the buttock, down the back of the leg and in to the calf and foot. Often the pain is described as shooting, a deep ache and an intense burning sensation. There may also be weakness, numbness, pins and needles or tingling and difficulty performing certain movements of the leg or foot. Sciatica can present symptoms on one or both sides of the body. According to the National Institute for Health and Care Excellence (NICE) sciatica is estimated to affect between 12-43% of people throughout their lifetime.

So why do these nerve roots get irritated in the first place? According to NICE disc herniations (slipped discs) are responsible for approximately 90% of cases of sciatica in the UK. However there are a few other reasons that the nerve roots may become impinged including arthritis, inflammation of the facets (joints at the back of the spine) or spinal stenosis (narrowing of the spinal canal). The sciatic nerve itself can also be impinged throughout its pathway by tight muscles of the legs and buttocks. For example, in some people the sciatic nerve runs directly through a muscle in the pelvis called the piriformis muscle. If this muscle becomes tight it can directly compress the sciatic nerve and give symptoms down the whole leg.

There are certain activities that are known risk factors for causing sciatica, these include strenuous activities such as running or heavy lifting (especially if bending and twisting the body), and using machinery that causes whole body vibration. You can help yourself to avoid developing sciatica in the first place by ensuring that when lifting heavy objects you employ good techniques.

The good news is that a lot can be done to improve sciatica and major interventions such as surgery are not often needed. Non surgical treatment (also known as conservative treatment) often has good results with one study demonstrating that 50% of people improved with conservative care within 10 days, and this increased to 75% of people within 4 weeks1.

Sciatica is one of the most common presentations I see in my clinic and I find that most people get better or significantly improve within a few treatments. In order to give the best care possible I conduct a full musculoskeletal and orthopaedic examination in order to pinpoint the underlying cause of the sciatica. I then go on to treat the structures that I feel are causing the pressure on the nerve, this includes techniques to encourage blood supply and therefore healing to the disc/joint/suspected structure. I also use neural flossing techniques (specific exercises targeted towards neural health) and work in conjunction with a yoga therapist (Beth Cox) in order to get you moving in a way conducive to the health of your joints and the nerves.

References:

1   Van Tulder, M., Peul, W. and Koes, B. (2010) Sciatica: what the rheumatologist needs to know. Nature Reviews. Rheumatology 6(3), 139-145

Does waiting for surgery affect the success of the operation?

A group from Derriford Hospital in Plymouth looked at the association between 109 discectomy operation and the duration of symptoms before the surgery. They wanted to know whether people with a shorter duration of symptoms tended to have a more successful outcome from surgery.
The study showed that, statistically, it probably does not make any difference to the outcome whether the pain has been an issue for a short or long time before having surgery.

So, if there is no proven surgical benefit to rushing into surgery, which has inherent risks, it makes sense to try other no-risk, or low-risk interventions in the first instance

Whiplash! How a chiropractor helps

Chiropractic Consultation – Whiplash; What To Expect!

Mr Daniel Rhys Morgan, DC, MChiro, LRCC, Chiropractic  specialist based at the Beaches Chiropractic in Port Talbot, writes about whiplash

Whiplash is a commonly discussed topic amongst health care providers today, discussing everything from best treatment protocol to delayed onset.

It has even been discussed amongst those of the highest prestige in the Houses of Parliament. With the UK being named Whiplash central of the world with over 80% of personal injury claims now being as a result of a whiplash injuries, it is no surprise that we commonly see these type of injuries as Chiropractors.

Most people will commonly associate Road Traffic Collisions as the most common cause of these injuries, which may be true, however it isn’t always the case.

Whiplash injuries can also be sustained from sports such as Rugby, Ice Hockey, Football and American Football. You only have to look back a few years to see how these sports have changed. Players have now become far more athletic and powerful and place so much stress throughout their spines when involved in, for example, a big rugby hit or when a footballer goes up for a head but amongst the aerial challenge is pushed in the back; both these type of incidents will place a great amount of stress through the ligaments, joints and musculature of the neck.

When looking at rugby in particular, Lark and McCarthy (2010) observed when carrying out ACROM (Active Cervical Range of Motion) research on rugby players, it was the forwards who had an ACROM consistent with those who had sustained an Acute Whiplash injury. What is also of significance is that most people only associate neck pain with whiplash- this again is also a common misconception; it has been known that people can suffer from “Lumbar Whiplash”, this is exactly the same as mechanism as the neck, a biphasic movement which Fast et al (2002) discovered can exert enough force through the spine in order to achieve significant damage to ligaments, tendons and musculature, however, forces placed through the spine by that biphasic motion are not enough to cause damage to bony structures.

So what happens if you have sustained a Whiplash Injury?

The circumstances can vary between person-to-person with insurance companies and solicitors often being involved the process of receiving treatment can take a bit of time.

In the immediate aftermath of the incident, as a patient you should attend the local accident and emergency. Here, they will examine you and attempt to clear you of any serious injuries (ie. Fracture, Concussion etc.). Should that be the case, they are likely to supply you with medication in order to aid the early symptoms of whiplash. This is usually along the lines of co-codamol and naproxen, often you will be told to attend the GP for further medication should this fail to control your symptoms adequately.

On some occasions, depending on circumstances and examination, you may receive an x ray at Accident and Emergency; again this is to rule out significant bony injury. You will not receive any further scans, such as MRI, during your time at the hospital unless they suspect any neurological damage, the reason for this is, currently, there is not enough evidence to suggest that soft tissue findings on a MRI scan are specific to those who have sustained a whiplash injury.

Providing you have been cleared for all significant injuries you are now able to present to a Chiropractor, Physiotherapist or Osteopath. However prior to doing so you can help yourself with home interventions such as using Ice (if you are not diabetic and do not directly contact the skin as it can often cause an ice burn) for 15 minutes every hour. It is common for you to feel worse the day following the incident, but please do not be alarmed by this.

What can I expect when I visit the Chiropractor for a Whiplash Injury?

Again, circumstances may be different from each individual case. Whiplash injuries differ in severity and present differently. The Quebec Task Force Clinical Classification of Whiplash (QTF Clinical Classification) described these presentations and grading:

However, regardless of your presentation the process will always be the same, the Chiropractor will always go through a detailed history with you, if you were knocked unconscious in the incident, it may be worth bringing someone who was with you at the time and remained conscious so that they can answer any questions the Chiropractor may have regarding time frames, as your memory will often, understandably, be distorted in these circumstances. The common questions will include the nature of the incident, be that a sporting tackle, or RTC (road traffic collision). In both circumstances, it is likely we would like to know more about the incident, for example:

  • What was the speed at which the impact occurred?
  • What was the speed at which you or your vehicle was hit?
  • Where was the location of the impact on you or your vehicle?
  • Were you able to stand or exit the vehicle at your own accord following the impact?
  • How were you standing/seating at the time of the impact?
  • Were you expecting the impending impact?

I am aware that this can seem like an interrogation, however the Chiropractor’s agenda is to only understand the incident to the best of their ability and to understand the forces that have been placed on your body at the point of impact.

At the initial presentation you may also be asked to answer a short questionnaire to evaluate your pain and attempt to quantify your current disability levels. Most commonly the Neck Disability Index and the Oswestry Questionnaires are used, however more recently other questionnaires have been developed such as the Bournemouth Questionnaire and the STarT Back questionnaire, which also provides the practitioner with a good source of information about your current presentation. It is also important that the practitioner asks about symptoms that you experience elsewhere, be that in the extremities such as hands and feet or headaches and if so the exact location of your headaches. You may also be asked about your bowel movements and your ability to pass water, these questions are arguably the most important, as changes to these bodily functions can indicate a serious event and is classed as a medical emergency.

Once the Chiropractor is happy that a thorough history has been completed, they will usually precede a full neurological and orthopaedic examination, this consists of testing your reflexes, dermatomes (skin sensation) myotomes (muscle strength) as well as special tests aimed at stressing different joints, muscles, tendons or discs. Unfortunately, this examination is provocative by nature, meaning the practitioner is looking to reproduce the pain of complaint. The examination aims to stress different structures that will give the Chiropractor an idea as to what exactly is causing the pain that you experience.

Once we have completed our examination and are satisfied that we are able to compile a diagnosis, the Chiropractor will sit you down and explain exactly what we feel has happened and what we plan to do about it. The treatment plans devised will always be tailored to each individual, however recent research has suggested that it can take an average of 8 sessions in order to achieve a significant improvement. Treatment can commonly consist of a combination of lifestyle advice, education about the complaint, acupuncture, spinal manipulative therapy, mobilisations, rehabilitation and exercise advice.

Following the initial consultation, it is common practice for the Chiropractor to correspond with the GP in order to inform them that you are now under their care and update them on a number of things such as examination findings, diagnosis and prognosis of your condition, this is also true of information that is to be released to any insurance company or legal firm, that may be involved with the case.

This however, will never be done without your consent to do so.

It is important to stress that the Chiropractor is always independent, and has no motive other than the patient’s health and wellbeing.