Tip of the iceberg

There's more to paralysis than not being able to move. Victoria reveals the hidden medical challenge

Paralysis is rather like an iceberg. The bit you can see, the not-being-able-to-walk palaver, is just the tip. Suffering a spinal injury has a number of other effects on the body which most of the time remain hidden from public gaze, but which can be just as difficult to come to terms with.

One unwelcome physical change a wheelchair user may encounter is dislocated hips. Over time, as muscles grow weaker through disuse, they become less effective at holding joints in place, so it's not uncommon for paraplegics to experience dislocated hips.

A couple of years ago I discovered during a routine x-ray that my own left hip had become dislocated. This came as a complete shock to me, because strangely I had experienced no pain or discomfort beforehand.

As I have sensation in most of my body, I had always assumed I would be able to tell if something happened to either of my hips. How wrong can one be? Oh well, life is full of these little surprises.

The main practical consequence is that it's now harder to get me sitting straight in my wheelchair, but I'm just grateful that, so far at least, the hip has stayed pain-free. I wonder how long it will be before I achieve a double whammy and the right hip becomes dislocated as well?

A more unpleasant, frustrating and embarrassing consequence of paralysis is the impact it has on going to the toilet. This unremarkable, routine part of everyday life, which no able-bodied person usually thinks twice about, suddenly becomes a complicated business, requiring planning, specialist equipment and medical advice.

A paralysed person may no longer be able to control their bladder and bowel actions. This means they may need to use catheters to pass urine (either an "indwelling" catheter or fitting a catheter at regular intervals) and rely on "digital stimulation" to pass stools.

So far I've managed to avoid needing this kind of intervention, but I do face another challenge. In order to minimise the risks of manual lifting to my assistants, I have to use a hoist when transferring between wheelchair and toilet – something that turns going to the loo into a time-consuming action. Usually I have to allow at least 20 minutes for the whole toileting process - so no nipping for a quick pee then.

Something else people with spinal cord injuries have to worry about is the state of their bones. Paraplegics and tetraplegics are at greater risk of developing osteoporosis (A tetraplegic is someone paralysed from the neck down, a paraplegic from the waist down).

Bones consist of an outer shell and a strong inner mesh resembling honeycomb. When osteoporosis occurs, the holes in this mesh grow larger and make the bone more fragile (osteoporosis literally means "porous bones"). It can reach the stage where the slightest knock or fall can break a bone. Wrists, hips and spines are particularly vulnerable.

Wheelchair users need to have regular bone density scans to detect the first signs of osteoporosis. These "dexa scans" are similar to having an x-ray done. On the same day I discovered my dislocated hip, I also had a dexa scan which revealed I had a low bone density.

In the days immediately afterwards, it felt strange and unsettling knowing that, as a 30-year-old, I had to face an issue which usually only affects people over 50. However, the human mind is highly adaptable and I soon adjusted to this new dimension in my life.

I now take medication to try to strengthen my bones. This involves a daily calcium and vitamin D tablet called Calcichew, and a weekly alendronic acid tablet. Luckily, these treatments seem to be having a positive impact and my last dexa scan showed a slight improvement in my bone density.

Perhaps the most serious consequence of spinal injury is the possibility of suffering autonomic dysreflexia. AD can develop suddenly and if it's not treated promptly, then it can cause strokes and even kill.

Sadly, there's little public awareness of this condition. If you've never heard of it, then you're not alone. I bet if you stopped five people in the street and asked them what autonomic dysreflexia was, one would claim it was a 1970s pop group, another would say it was a Doctor Who monster, and the other two would admit they didn't have a clue.

What's more worrying is that not all doctors are familiar with AD either. To explain what autonomic dysreflexia (AD) is, I'm afraid I'm going to have to give you a short biology lesson. But stick with me – this is important.

The human body is a highly complex, carefully balanced organism. AD occurs when there is an imbalance in the body's blood pressure system.
One of the ways the body regulates blood pressure is by tightening or relaxing the tiny muscles around blood vessels. When the muscles contract, the blood vessels become smaller and blood rushes around your body at higher pressure.

If an "irritant" affects the body, a reflex reaction causes the blood vessels to get smaller and increases the blood pressure. In an undamaged spinal cord, this same stimulus also initiates another reflex reaction that moderates the constriction of the blood vessels.

However, in paraplegics and tetraplegics, the signal which tells the blood vessels to relax gets blocked by the spinal injury. As a result, blood pressure can reach life-threatening levels and suddenly you have a medical emergency on your hands.

Warning signs include a pounding headache, a reddened face, nausea, a stuffy nose, sweating and red blotches on the skin above the level of the spinal injury, and goose pimples and cold, clammy skin below the spinal injury.

An AD attack will normally lead to blood pressure greater than 200/100 and a pulse rate below 60 beats per minute.

So what can cause AD to develop? In this context, an "irritant" is something occurring below the level of the spinal injury that would normally cause pain or discomfort to the body (Of course, a paraplegic or tetraplegic cannot normally feel sensations below their spinal injury).

My consultant gave me a list of irritants and it seemed to go on forever. AD may be sparked off by disorders connected with the bladder (for example, a urinary tract infection, a blocked catheter), the bowel (constipation, hemorrhoids) or the skin (cuts and bruises, burns, pressure sores, overly-tight clothing).

It can also be triggered by broken bones, ingrown toenails, over-stimulation during sex, pregnancy, childbirth and abdominal conditions (such as gastric ulcer, appendicitis and colitis).

Sometimes AD can be stopped simply by getting oneself into a sitting position and removing the cause of the irritant. The person then has to stay sitting up and have their blood pressure checked frequently until the attack is over. However, if AD persists then the person has to take a medicine called Nifedipine to lower his or her blood pressure.

Most disabled people who know they are susceptible to AD will do their best to prevent it happening by taking various measures such as trying to stop their skin getting damaged, avoiding sun burns and scalding, eating a balanced diet and drinking lots of fluids.

When I was at university, I lived in a hostel with several other disabled students. One of them had an AD episode two or three times while I was there.

Although nothing was said openly about it (the staff were good at protecting confidentiality), you could always tell when he was having an AD attack because the staff on duty would rush to his room and there was an anxious atmosphere until it had passed.

Every person with a spinal injury is given an AD information card by their consultant which they are meant to carry with them all the time.

Thankfully, my chances of having an AD attack are considerably reduced by the fact I have normal feeling in virtually all my body, I don't use artificial methods like catheters to go to the toilet, and my spinal injury occurred 24 years ago (The older the spinal injury is, the less likely a disabled person is to suffer AD).

Nevertheless, I still keep my AD information card in my handbag and take it with me wherever I go. It's important to me to do this, not just for the sake of my own well-being but also as a sign of solidarity with all the other disabled people for whom autonomic dysreflexia is a real and ever-present threat.

Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.