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Taking care of yourself with spina bifida

    • Taking care of yourself with spina bifida

INTRODUCTION

Many people we speak to who are living with spina bifida aren’t being seen by specialists regularly to check up on their health.

This guide has been written to help you avoid some of the common health problems associated with spina bifida, and to help you know what to ask your GP to do to.

Problems with kidneys, skin and tissues, and bones and joints are often experienced by people with spina bifida, and the earlier they are picked up and treated, the better the long-term outlook.

HOW DO I LOOK AFTER MY KIDNEYS?

Drink

Drink lots of water, around 2 litres per day unless your doctor tells you otherwise.

Get to know the symptoms and see your GP straightaway if you have a urine infection. The symptoms may include:

  • high temperature
  • confusion
  • headache
  • cloudy urine
  • strong smelling urine (maybe ‘fishy’)
  • a general feeling of being unwell
  • back pain

If you are still using your bladder, you should be monitored by a Urologist especially if you have frequency (needing to wee often), urgency (the need to wee comes on very suddenly), or urinary tract infections (UTIs).

How your bladder works may change over the years, and high pressures developing inside your bladder can damage your kidneys. UTIs can be a sign that your bladder isn’t emptying completely, and frequency and urgency can mean your bladder is tight and working at ‘high pressure’.

This can be treated, so ask your GP to refer you to a Urologist, even if you are continent, or are happy with your method of managing your bladder.

Similarly, an overloaded bowel can stop your bladder and kidneys working properly. Methods such as manual evacuation can lead to chronic overloading with faeces, so look into other methods, which might give you a better quality of life as well as helping your kidneys.

Tests for kidney health

Remind your GP to do a Full Blood Count (including your creatinine) every year. Kidney scans every 2-3 years will help too. If you do develop chronic kidney disease, your GP should refer you to a Nephrologist.

Have your blood pressure tested at least once a year. High blood pressure is both a symptom of kidney disease and can cause damage to your kidneys. Eat no more than 6 grams of salt per day and take medical advice on your salt intake if you have kidney damage. Controlling your salt intake helps to keep your blood pressure normal.

Once you hit 40, have a diabetes test once a year. Detecting diabetes as early as possible helps protect your general health. Untreated diabetes makes kidney impairment worse.

HOW DO I LOOK AFER MY SKIN AND TISSUES?

Many people with spina bifida have a loss of feeling in their feet, legs or buttocks. Cuts, burns or pressure sores can occur without being noticed, as feeling pain usually alerts us to damage at an early stage.Many people with spina bifida have a loss of feeling in their feet, legs or buttocks. Cuts, burns or pressure sores can occur without being noticed, as feeling pain usually alerts us to damage at an early stage. Infection can set into damaged areas, as the circulation can be poor, and because of the loss of feeling. People with reduced mobility may also have lymphoedema, a swelling of their tissues (usually in the legs and feet), which reduces their circulation further, and stretches the skin.

Feet

See a podiatrist/chiropodist regularly to have your toenails cut and hard skin removed if you have loss of feeling or poor circulation in your feet. Use a foot-softening cream on your feet and moisturiser on your legs to prevent cracking as bacteria can enter this way. If your skin is very dry use aqueous cream instead of soap when bathing. Dry carefully between your toes and treat athletes foot straight away. Creams and sprays are available from pharmacies and larger supermarkets.

Pressure sores (also called bedsores, or decubitus ulcers)

Pressure sores, also called bedsores, or decubitus ulcers, are areas of broken skin and underlying tissues that have been damaged by pressure. Pressure (such as sitting in the same position for too long) restricts blood being supplied to the area, so the tissues become deprived of oxygen, and toxins build up, which causes the skin and tissue cells to die. People with spina bifida may not feel this damage beginning because of reduced feeling in parts of their body.

Make sure you have good quality, well-fitting shoes that do not cause red marks on your feet. You may want to ask your GP to refer you to an orthotics centre to have shoes made especially for you. The styles are much better than they used to be!

Make sure you have a well-fitting wheelchair with a pressure-relieving/reducing cushion. Always use your footplates to support your feet and stop your legs from ‘hanging down’, which is bad for the circulation. Check your wheelchair does not leave red marks on your legs or body.

Change your sitting position frequently throughout the day, and have a chair at home to sit in other than your wheelchair. Try to spend part of each day off your bottom.

Check your skin regularly for pressure sores using a mirror to see areas of your body you cannot see otherwise. Pay particular attention to areas of skin where you have little or no feeling.

When you see a reddened area of skin tell your GP straightaway, don’t wait to see if it improves on its own. If left untreated they can take a lot longer to heal. If you do have a skin breakdown, make sure your health professionals look at the reasons why it happened, and don’t just apply dressings. Eating a diet with some extra protein will be important to healing.

If you know you are going into hospital let them know in advance if you are at risk of pressure sores, so they can have the right equipment ready for you, such as a pressure relieving mattress.

Cellulitis

Cellulitis is a skin infection that can occur anywhere on your body. If you have dry skin on your legs, if you have poor circulation or sensation and you are not aware you have cut or damaged your skin you may be more prone to cellulitis. Lymphoedema can make you more prone to cellulitis too.

Cellulitis causes the area of affected skin to become red, hot, swollen, tender and painful. Symptoms include:

  • nausea
  • shivering
  • blisters
  • headache
  • a general sense of feeling unwell

See your GP as soon as possible if you think you may have cellulitis as the sooner you start antibiotic treatment the better.

Lymphoedema

Lymphoedema is a swelling often of your legs which is due to fluid collecting in the tissues under the skin. This can leave you prone to cellulitis and skin breakdown and can interfere with independence, as your legs get heavy and difficult to move. Ask your GP to arrange treatment with pressure stockings or appliances, which is very effective.

HOW DO I LOOK AFTER MY JOINTS?

Mobility

Make sure you have a good fitting wheelchair which is appropriate for your needs and a good cushion. Seek advice from the local wheelchair service and, if you are buying a wheelchair using the voucher system, go to a good supplier who can advise you regarding what chair will suit you best. Take time researching all the options open to you. What size wheels to have front and back? Is the seat at the correct height in relation to the wheels so that you use the least effort to push yourself?

If you develop pins and needles, or weakness in your hands, you may need to consider a power chair for all or part of the time, as repetitive use such as propelling a manual wheelchair can cause damage over time to the neck and shoulders. Keeping these in good condition can keep your hands moving and keep you independent.

Ask for a physiotherapy assessment to make sure you are propelling effectively, and to ensure you are maintaining a good posture. Consider push handles on your wheelchair so that someone else can help you push at least some of the time saving your joints.

If you use a power chair and have numbness in your hand or fingers speak to your GP as you could have a compression of the ulnar nerve in your elbow which can be relieved with support.

If you use crutches ensure that they are fixed length rather than adjustable height as this will take strain away from your joints. If you feel a stick or other mobility aid would be a help, ask for an assessment to make sure you get the most suitable type, correctly measured, for you. If you have one leg longer than the other consider a shoe raise so that you do not put extra strain on your hips and knees. Ask your GP to refer you to an Orthotist.

If you have been recommended splints use them when you walk to avoid extra strain on your joints.

Strain

Some people who have the option find it useful to vary their method of mobility using walking aid or a wheelchair depending upon the circumstances. This will vary the strain on muscles and joints. People who have never used a wheelchair may consider it worth using one some of the time for long distances. This could preserve your ability to walk by putting less strain on your back.

Do not put extra strain on your back by lifting heavy or awkward weights. Make sure you exercise and keep moving to keep yourself supple.

Tethered cord occurs when the spinal cord becomes attached to the bottom of the spinal column. Normally the spinal cord moves freely up the spinal column as you grow. A tethered cord does not move as it is pulled tight. Blood flow can be reduced and ‘wear and tear’ damage to the spinal cord and nerves can occur over time which can reduce mobility.

If you notice that your mobility is reducing due to increasing muscle weakness then ask your GP to refer you to a neurosurgeon.

Pain

If you have pain, seek medical advice rather than self-medicate, there are different pain treatments depending on the type of pain you have. New symptoms should always be looked at, so see your GP in the first instance. Sometimes the cause of the pain is treatable, but sometimes it isn’t; worrying about why you have pain can make it feel worse.

If the pain continues, ask your GP to refer you to a pain clinic, where many complementary treatments are often available as well as medication. If you have any kidney problems, make sure your doctor is aware before writing your prescription, you can check with the pharmacist as well when you collect the medicines.

Osteoporosis

Our bones grow during childhood and increase their density and strength in adult life. Weight bearing exercise, such as walking or skipping, helps this to happen. Osteoporosis is a thinning and weakening of the bones, which can lead to the bones breaking very easily. People with spina bifida who do not weight bear may be prone to osteoporosis.

Try to prevent Osteoporosis by having a good diet including calcium and vitamin D (found in milk, eggs and oily fish) and weight bear everyday if you can do so safely. Ask your GP to consider a bone density check, especially if you are immobile, or a woman who has been through the menopause.

HOW DO I LOOK AFTER MY GENERAL HEALTH?

Keeping to a healthy weight can be a challenge if you have restricted mobility, but is important for your long-term health and independence. Eating a good diet, low in sugar, salt and saturated fat, and rich in vegetables, fruit, whole grains and beans, can reduce the chances of developing diabetes, and high blood pressure, and make it easier to keep your appetite (and weight) under control.

Weight

Try to maintain a healthy weight. If you have short stature or curvature of your spine, you can use your arm span measurement instead of height for working out your BMI.

If you have reduced muscle bulk because of your spina bifida you will need substantially fewer calories as muscles use calories even at rest. Some people who are wheelchair users may need half the calories of the average person even at the same activity level. People who have mobility issues will also need fewer calories.

A small plate may help you eat less. Eat plenty of vegetables, frozen is fine. Your meat or fish portion should only be the size of a pack of cards. Don’t keep a stock of high fat or sugary foods at home, if you really want something, go out and buy just one. Cut out sugar where you can, including fruit juices from concentrate.

If other people prepare your meals, let them know how you’d like your food cooked, for example if you want it grilled rather than fried. Cook in batches and freeze portions of food; this is better for you than ready meals.

If you build up muscle this may help with your weight. Seek advice from fitness trainers especially those who work with people with mobility issues so that you are protecting your bones and joints.

Exercise every day if you can. Try to find a gym with wheelchair friendly training and equipment. You can buy DVDs for exercises you can do sitting down from online shops like Amazon, so you can exercise at home.

Alcohol

Calories from alcohol can only be stored as fat, so have more days when you don’t drink than when you do. As well as excess alcohol being bad for your mental health, too much booze can make weight control harder, and it can speed up bone thinning (osteoporosis).

Vitamin D

In the UK around 50% of white people and 90% of people of colour are deficient in Vitamin D Make sure you keep your Vitamin D levels up during the dark winter months. Vitamin D is essential for keeping bones strong and may help to prevent depression and heart disease. 90% of vitamin D is made by the skin when the sun shines on it .However from October to April the sun is not strong enough in the UK to produce this effect. People with spina bifida, who find it hard to get outdoors every day, may be at particular risk of deficiency.

Top up your intake with oily fish and fortified foods such as dairy products and cereals. When the weather is warmer try to get out for half an hour a day, avoiding strong midday sun and getting burnt. Ask your GP to check your Vitamin D levels. If you have kidney impairment you may need a prescription for active Vitamin D.

Be aware of your environment

Messages from the body about your environment are carried to the brain via the spinal cord; we are only aware of what is happening when the message reaches the brain. If your spinal cord is damaged and you have loss of feeling in some parts of your body you need to get this information in other ways. For example, are you hot or cold, is your chair comfortable, are your shoes comfortable, are you sitting on something hot like a radiator or a hot water bottle? Check with your hand that your bath or shower is not too hot before putting your feet in. Never have your bed next to the radiator, or sleep with a hot water bottle in the bed.

Bowel Management

It is important to ensure that you are not constipated and your stools are firm and brown. If you experience hard stools, or ‘go’ less than every three days, you should see your GP.

An overloaded bowel can result in kidney damage, UTIs, and can cause the bowel to become obstructed, a life-threatening emergency. Episodes of ‘overflow’ (bouts of uncontrollable, explosive ‘diarrhoea’) is caused by chronic overloading and is treated by clearing out the bowel. Good diet, irrigation systems/washouts and laxatives prescribed by your doctor can help.

Vaccinations

People with spina bifida may be more prone to chest or breathing problems if their spine is curved, as this can stop the chest expanding fully during breathing. It is important to avoid flu and pneumonia if possible. Speak to your GP about an injection to guard against pneumonia, and get a flu jab each autumn.

Diaphragmatic Hernia

Spina bifida may result in a gap in the diaphragm (a sheet of tissue between the chest and abdomen that controls breathing). This allows part of the stomach to rise into the chest, and squash the lungs. If you have shortness of breath and/or persistent vomiting see your GP, as it may be caused by a diaphragmatic hernia.

HOW DO I LOOK AFTER MY HEART?

Sleep Apnoea

Sleep Apnoea is a condition which can cause interrupted breathing during sleep, and is quite common in people with spina bifida. Symptoms include:

  • snoring/ holding your breath while asleep
  • gasping for breath during sleep
  • waking up most days with a sore throat
  • feeling tired most days during the daytime.

If you think you may have sleep apnoea consult your GP as there are tests and simple treatments. It is important to get treatment, as it can do long term damage to your heart, as well as cause lymphoedema and weight gain. The ‘tired all the time’ feeling can affect your quality of life too, by interfering with your ability to work, drive safely, or care for yourself.

Cholesterol

Have an annual cholesterol test. A sedentary lifestyle and being overweight can lead to higher cholesterol levels and atherosclerosis which is hardening of the arteries. If your cholesterol level is high your GP may prescribe a statin to protect your heart and arteries.

Blood Pressure

Have your blood pressure tested at least once a year. High blood pressure can damage your heart and arteries causing heart problems and stokes. If your blood pressure is high your GP may prescribe tablets to reduce this, therefore protecting your heart arteries and kidneys.

HOW DO I LOOK AFTER MY MENTAL HEALTH?

Sometimes people with spina bifida and hydrocephalus are affected by anxiety and depression more than people without the conditions. Taking care of yourself generally, by eating a good varied diet, without too much sugar or fat, exercising every day, and keeping to a routine of getting up in the morning and sleeping at night will all help.

Feeling drowsy and tired all the time can be a symptom of depression, but can also be a sign of sleep apnoea, so see your GP. Choose a relaxing activity for the evening - it can reduce anxiety, and should help you sleep.

Plan your day, make sure you get out of the house every day if you can, and arrange to meet up with or talk to friends and family, to do things you enjoy.

It might also help to set yourself ‘goals’ from time-to-time. Try to choose something ‘achievable but challenging’, with a deadline. Maybe ask someone for help if you need to, to keep you on track.

Some people find that helping other people, perhaps through voluntary work, raises their self-esteem, and can help them to be less preoccupied with their own difficulties.

Activities like reading can help focus your mind, and listening to music can be helpful - bouncy pop music can help lift your mood, and gentler music might help you to relax. Watching a funny DVD or comedy programme on TV might also help lift your mood.

Others around you may suggest you have a low mood or seem anxious even though you don’t feel any different; some mental health problems are hard for you yourself to detect, so it is worth taking others’ comments on board. The same is true for alcohol use, you may not think you are drinking too much or too often, but your family may express their concerns. Alcohol can increase depression, and affect the memory.

Sometimes, it can be helpful to talk with someone you trust about your worries as they may be able to help you to ‘put things into perspective’. Also, if you can put your finger on something that is upsetting you, maybe you could get advice on resolving the problem.

Don’t hesitate to tell your GP if you think you may be depressed or anxious, there are talking therapies available as well as medication.

There are some really useful self-help guides available on the internet - here are a few examples:

THE HEALTH DEVELOPMENT TEAM AT SHINE

If you have any concerns about your health, please speak to one of the Health Development Team members at Shine. With over 40 years experience advising on the best options for keeping healthy, they really are a great source of support for you.

If you have any concerns about your health speak to your GP.

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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