Transverse Myelitis – it’s in the news, but what is it?

As a solicitor specialising in spinal injury claims, I am well aware of the devastating effects that a medical condition called Transverse Myelitis has on the lives of those who develop it.

It is also fair to say that before I started to specialise in spinal injury claims, I had not heard about this condition, its symptoms or its impact, and I don’t think it’s widely known about until it affects you or someone you care about.

The work that I do allows me a very unique insight into various spinal conditions and, most importantly, what should be done to diagnose and treat them early to have the best chance of recovery.

This unique perspective has helped me recognise the importance of raising everyone’s awareness of these complex medical conditions.  It is estimated that about 300 people develop Transverse Myelitis each year in the UK. Whilst fortunately this is quite a rare illness, it has the ability to turn someone’s life completely upside down.

That’s why I feel so passionate about ensuring that we all know more about this condition, early warning signs and what medical treatment to expect, to have the best chance of recovery.

Frustratingly, medical conditions such as Transverse Myelitis rarely get much publicity – how else will we raise society’s awareness of it without this?  It has therefore been interesting to see the multiple references to this condition in the news recently in connection with safety concerns over the COVID-19 vaccine.  Doing a simple Google search, there have been 357 news items referring to this condition in December 2020 compared to only 52 in December 2019!

This increased online interest in the condition appears to have come about, at least in part, as a result of two clinical trials of COVID-19 vaccines, both of which were paused due to safety concerns as a result of possible associations between the vaccine and development of Transverse Myelitis.

Whilst it would be completely inappropriate for me to comment on these associations (I will leave this to the healthcare professionals specialising in this area!), I really hope that this sudden media interest will help to raise awareness of this life changing condition.

What is Transverse Myelitis?

In simple terms, transverse myelitis (TM) is an inflammation of the spinal cord.  As such, it can disrupt the way in which the spinal cord normally works, sending impulses from the brain to the nerves in our body, and carrying sensory information from our various body parts back to the brain.  Whilst this condition is more frequently reported in younger people (ages 10-19 and 30-39), it can happen to anyone regardless of their age, gender or race.  TM is not thought to be a hereditary disease.

Like with other serious conditions such as stroke or heart attack, it is important to know the early signs and symptoms of this condition and that you should seek urgent medical help if you have any one of them.

I have included below the list of common symptoms but they may vary and can come on suddenly (within a few hours) or gradually (over a period of days or even weeks).

• Pain – This is often one of the early signs and it may be a shooting type pain radiating from the back to your arms and/or legs
• Problems with sensation – You may experience numbness, a burning sensation, feeling of pins and needles in your legs, your bottom or your genitals.  Problems with sensation may also affect your torso especially if the inflammation affects the higher parts of your spinal cord (from the chest up).
• Weakness in your legs and possibly arms – It is important not to ignore this worrying sign and seek urgent help as soon as it is experienced.  It can quickly progress to partial or complete inability to move your legs and/or arms.
• Problems with bladder and bowel function – There are many variations of this symptom including increased frequency, feeling that you do not empty your bladder fully or difficulty emptying the bladder, urinary and/or faecal incontinence as well as constipation

What causes Transverse Myelitis?

There are many potential causes of TM and it will be important for your treating doctor to identify the likely cause in your case as soon as possible so that you can receive the correct treatment.  This approach will give you the best chance of recovery.

I have listed the most common causes below:

• Infections
  Infections can be bacterial or viral.  There are other types of infections that can cause TM.  TM can also be caused as a result of the body’s immune response to an infection.
• Inflammatory conditions
  There are various inflammatory conditions that may cause TM including multiple sclerosis, neuromyelitis optica and several autoimmune disorders.
• Some vascular disorders may also cause TM

How can TM be diagnosed?

In order to diagnose the condition it is important that the treating doctor takes a detailed history including all the symptoms and your previous illnesses and performs a thorough examination including checking your back for tenderness and pain, assessing power in your legs and arms (as appropriate), checking for other neurological problems and issues with sensation.  The examination should involve assessing sensation in the genital area (doing the so called pin prick test and also rectal check).  If there are any bladder issues, your doctor should arrange for a bladder scan to be undertaken to check if you are fully empting the bladder.

The most common diagnostic investigations that are performed to diagnose TM are:

• MRI scan of the whole spine and the brain

If there is inflammation in the spinal cord this would normally be demonstrated on an MRI scan of the spine.  The MRI scan of the brain may help to find the underlying cause of the TM, for example multiple sclerosis.

• CT scan

Sometimes, a CT scan may be used to detect inflammation

• Blood tests

These are undertaken to check for the presence of autoantibodies which can indicate presence of an autoimmune disorder which may be the underlying cause of TM

• Lumbar puncture

This investigation involves taking a sample of cerebrospinal fluid (CSF) by inserting a thin needle inside your back.  The sample is analysed to check for presence of infection and/or inflammation and this way may help identify the exact cause of TM.

Treatment and recovery

As mentioned earlier, treatment for TM will depend on the underlying cause.  Whilst there is no cure for transverse myelitis as such, treatment is aimed at preventing or reducing the neurological damage to the spinal cord.  Treatment options include intravenous (through the vein) administration of steroids, plasma exchange therapy, immunosuppressing medication or antiviral medication.

The extent to which one can expect good recovery will, at least to some extent, depend on how quickly the condition is diagnosed and correct treatment administered.  The quicker the treatment, the better the likely outcome.  This is why it is so important to seek medical help as soon as the first signs are experienced.

It is important that people who develop TM receive the necessary rehabilitation to improve their functional independence including specialist physiotherapy, occupational therapy (to help with everyday tasks including wheelchair use, transfers, dressing etc), bladder and bowel management training and psychological input to help them adjust to the effects of their condition on their life.  The extent of rehabilitation needed in each case will depend on the degree of neurological damage caused by TM.

Although some people may fully recover from transverse myelitis, the healing process may take considerable time (several months or even years).  Most people with transverse myelitis will have at least partial recovery.  Unfortunately, some people may suffer permanent neurological damage and difficulties that affect their daily life.  This usually happens where there was some degree of delay in diagnosis and correct treatment being put in place.

Medical negligence

TM is a rare but very serious medical condition which can have a devastating effect on one’s life.  Early diagnosis and correct treatment offers the best chance of recovery.

Whilst it is not always possible to diagnose and treat TM early, from my experience as a spinal injury solicitor, medical errors do occur and can lead to delays in diagnosis and treatment, reducing the prospects of full recovery.  These medical errors may include the following:-

• Noting medical history and early symptoms

From my experience, it is important for your doctor to be aware of your medical history and all your symptoms including any urinary problems, issues with sensation and pain.  Specific questions should be asked by the doctors to check for these symptoms so that they can act on early signs of neurological damage giving you the best chance of recovery.

• Lack of or inadequate physical examination

Physical examination including testing your neurological function (muscle power and sensation in your body) is very important and should be thorough.  Without it, some early signs of TM may not be spotted, possibly resulting in a missed opportunity to diagnose and treat TM early.

• Inadequate investigations

It is important that all the necessary investigations such as MRI scans, blood tests and lumbar puncture are undertaken to find the cause in respect of symptoms such as severe back pain, problems with sensation and/or weakness and/or bladder or bowel incontinence.  Failure to perform these investigations in circumstances where they are merited may result in delayed diagnosis and treatment of TM.

• Delayed treatment

It is important that correct treatment is given as soon as possible.  In some cases treatment such as steroids may be offered before the definitive cause of the condition is known.  In other cases treatment may be ineffective and result in further neurological damage if the cause of the condition has not been identified or if this has been delayed due to medical errors.

Further help and support

The effects of TM can be life changing; it is important therefore that anyone with this condition has as much support as possible. Whilst it’s a rare condition, you are not alone.  The Transverse Myelitis Society has a lot of information on its website.  Additionally TM is a spinal cord injury and therefore sufferers will find support through the Spinal Injuries Association including Support Network Manager Carol Barraclough’s fantastic blog detailing her journey with TM.