Living life with a shunt
Below are some of the FAQs asked by Shine's members about living life with a shunt.
1. Why do I keep forgetting things?
Hydrocephalus can affect the brain and its functions in different ways and to different extents in different people: for some there may be significant issues, whereas for others there may be very few. Concentration, attention, working memory, understanding of language, and information processing can all be affected by hydrocephalus. Anxiety, sleeping problems, and pain can also make thinking and remembering more difficult and people with hydrocephalus may also be more prone to these problems.
2. Will my memory improve now I have a shunt fitted?
If your shunt is for hydrocephalus, you might notice a slight improvement, but it’s more likely that you will not see any change. If your shunt is for NPH, then many people notice memory getting better.
3. Are there any things I can do to help improve my memory?
Think of your memory as another part of you that needs exercising, so doing things you enjoy such as crosswords, playing card games, reading books and newspapers can help.
Joanna Iddon, a psychologist interested in hydrocephalus, has co-authored a book ‘Memory Booster Workout’ with lots of good ideas.
Anxiety will make it harder to remember things, so find ways to relax regularly throughout the day. Some people find saying out loud what they need to remember helps them to do so.
If your memory is causing you difficulty, don’t rely on remembering alone for important things. Keep a notebook with you and write down everything that you need to remember. Use post-it notes as aide memoires.
Set reminders on your mobile phone and keep a calendar (which may be digital) to remind you about important events and appointments.
Shine can also provide information and support about ways in which you can help to improve your memory via: Information videos and ‘Hydro and Me!’ monthly support and information sessions.
4. Will my balance get better now I have a shunt?
It depends on what is causing the issue. Sometimes people with NPH, Chiari I or Chiari II symptoms find it is better once they have a shunt. For other people the shunt doesn’t improve this aspect of their life
5. How do I get my balance back?
A physiotherapist may be able to help you to improve your balance, by giving you exercises specifically to support balance and strengthen the muscles involved in balancing. If you’ve not been as mobile as usual, your muscles may have weakened and contributed to balance issues by making your body and legs less stable and wobblier. Your confidence may also have been affected by having had balance problems, and this can be improved with practice.
6. What happens if I accidentally bang my head?
Keep an eye on how you’re feeling. If you lose consciousness or begin to vomit you should go to A&E for a check up. Shunts are difficult to break, the material is strong, and they are usually positioned in places it is hard to bump accidentally.
7. If I/my child falls over - will the shunt get displaced at all?
With VP shunts this is very unlikely, the shunts are secured to reduce displacement. With LP shunts, twisting movements at the waist can dislodge the shunt occasionally
8. Can I fly with my shunt?
Usually but there may be exceptions. There are some things to consider and we have more information about travel on our website
9. Can I go through the scanner at airports?
Fixed pressure shunts cannot be affected by scanners. Some types of programmable shunts are designed to withstand MRI scanners so should be unaffected by airport scanners.
Many airports are installing whole body scanners which use X Rays or millimetre waves rather than magnets and are suitable for people with all medical devices other than insulin pumps.
Find out what type of programmable shunt you have, and if it is not MRI-safe, follow the guidelines for people with heart pacemakers and show a letter from your neurosurgeon or your Shunt Alert Card (available from Shine on 01733 555988). All travellers need to go through security checks, if you decline using scanners you will need to undergo a physical check in private.
10. I have my shunt but I still get headaches - is this to be expected?
Life with a shunt is not like life without hydrocephalus. It can take weeks or months to settle down after a shunt, especially if the pressure in your head was very high to begin with. The shunt will need your pressure to rise to a certain level before the valve opens to release CSF, so the pressure fluctuates a little. How well your shunt drains also depends on activity and position, some people get headaches if they exercise too hard for example.
However, some people experience headache even when their shunt is working well. Many people with hydrocephalus for example also experience migraines, which are unrelated to the shunt.
Keep a brief diary of what time of day you have headache, what you were doing beforehand, what helped (lying down, drinking water, medication).
Do keep well hydrated by drinking regularly, especially when exercising or in hot weather, it may help some of your symptoms.
11. Does hydrocephalus affect people of a certain age or gender?
Hydrocephalus has lots of different causes so the condition can occur at any time during your life. There are many reasons why this can happen, from differences in the way the brain develops, to failure of fluid absorption in an otherwise typical brain, or damage to brain tissue through head injury, haemorrhage or infection.
NPH mostly affects people over 60.
It seems to affect men and women equally.
12. Now I have a shunt in place, will my condition deteriorate?
It depends on why the shunt is needed. If a shunt is working well the effects of uncomplicated hydrocephalus should be fairly stable. People with NPH or brain tumours may find their underlying condition causes changes in spite of having a shunt. Some people with hydrocephalus who have over drainage may have some unpleasant symptoms.
13. Will I need my shunt replaced after a certain period of time?
If your shunt malfunctions and you become unwell then it will need replacing. If your shunt breaks but you remain well, the shunt need not be replaced. But shunts do not need to be replaced routinely, or after a certain time period.
14. What limitations may I experience?
You may find that you become much more tired than you would expect. Some people experience depression when coping with a long-term condition or getting used to the idea of a shunt so talk to your GP if you are experiencing a low mood which doesn’t seem to shift.
Shine can also provide information and support about how you can help manage fatigue. We have written information with advice of steps to take to manage fatigue and Hydro and Me! monthly support and information sessions. You can also contact us by phone or email for advice
15. I have heard some people with hydrocephalus say they are affected by changes in atmospheric pressure, or that a full moon affects them. Is this common?
Anecdotally, people with all types of hydrocephalus report sensitivity to changes in atmospheric pressure, from headaches to being able to predict thunderstorms. We’re not aware of any scientific explanation. Some younger (pre-menopausal) women experience cyclical headaches or migraine, usually pre-menstrual.
16. Occasionally, usually at night, my ears have the sound of the sea, rather like putting a large seashell over your ear. Is this something to do with my shunt?
People with shunts often report hearing “swooshing” noises which they assume is a sign that the shunt is emptying properly. There has been a recorded case of someone with Meniere’s disease (an inner ear disease causing dizziness, nausea) and NPH who reported the noises when the shunt was set with a high opening pressure and which decreased as the pressure was reduced (reported from Geneva 2009). However, there appears to be no scientific reason or research reported.
17. Are there any support groups I can go to for more information / help / talk to other people with hydrocephalus?
Shine can provide information and support about ways in which you can help to live with hydrocephalus via our hydrocephalus resources hub. You can also join our ‘Hydro and Me!’ monthly support group.
Contact Shine on 01733 555988 if you want more information which you cannot find on our website or you want to book onto the next ‘Hydro and Me!’ monthly support group session.