Treatment options for NPH

What treatment options are there for NPH?

Surgery to divert excess CSF can be offered to people whose tests show it is likely to improve their NPH symptoms.

There are 2 main surgical options:

Shunt: A thin tube from the ventricles to the abdomen to drain CSF. Most people with NPH are fitted with a shunt that can be adjusted to control the pressure (programmable shunt).

ETV (endoscopic third ventriculostomy): An option for some people with secondary NPH caused by certain blockages such as aqueduct stenosis.

 

Why is surgery not an option for me?

Before any procedure is offered, there needs to be a careful consideration of the
potential benefits and risks.

Both procedures involve risks and surgery would not be proposed if it is unlikely that it would improve your symptoms.

For some people with additional health conditions, such as heart or breathing difficulties, uncontrolled diabetes, or stroke, surgery may not be offered because of the increased risks associated with having an operation and anaesthesia.

As we all get older, our brains get firmer and less able to expand or squash (compliance). Sudden reductions in pressure in the skull can create a vacuum at the surface of the brain and result in bleeding in or on the surface of the brain, for example subdural haemorrhage. This is more common in older people, because of the increased firmness of the brain. Age itself is not a barrier to surgery, provided you are in good enough health for the operation.

Any operation in the brain can result in seizures or a stroke. Any procedure could potentially make you worse, although the aim of any procedure would be to improve your symptoms or delay their progression.

Important to know about surgery: If it is felt by your specialist team that surgery is too high risk, or would be unlikely to help, you should be offered other options to help ease and manage your symptoms. This may include physiotherapy, occupational therapy, or medication. You should not be left without support, and should remain under specialist care, often from the Neurology team, and you should have regular reviews.

 

Will having surgery completely reverse my symptoms?

A shunt will not necessarily reverse all your symptoms but may slow down their progression. Symptoms may continue to worsen, or some may improve while others stay the same or worsen. It is different for everyone, but generally the earlier treatment is started the better.

Walking is the symptom most likely to improve, and bladder issues the least likely to improve after shunting, so if you experience bladder issues, it is best to seek medical support in addition to your treatment for NPH. If you begin to see a return of your original symptoms after having a shunt, let your neurosurgery team know, as your shunt may need adjusting or checking. Some members have told us that seeing a neurophysiotherapist helped improve their walking and balance.

 

Why are my symptoms still getting worse after having a shunt/ETV?

It can be very difficult to predict whose condition will improve after surgery. Some people whose tests show a good chance of improvement find they don’t improve, or even deteriorate. Some people find their improvement takes several weeks to begin. It is possible, as mentioned above, for other conditions to occur at the same time. These conditions will not be improved by surgery and may continue to worsen. An underlying dementia or Parkinson’s disease may become more apparent once NPH is managed effectively.

If your symptoms continue to worsen, it may be due to a failure of the first procedure. If you have had ETV, it may be possible to place a shunt if the ETV doesn’t work, so discuss this with your specialist team. Your shunt may need to be changed due to blockage or infection.

Important to know about shunts: Studies have shown that shunt failures, blockages and infections are much less common in older adults compared to babies and children. Shunt malfunction will usually lead to a gradual return of your original symptoms, rather than sudden, acute deterioration needing urgent care, that you may have read about in the context of other forms of hydrocephalus.

 

What happens if I do not have surgery?

If surgery is not an option, there may be the option to take medication to try to improve symptoms and to continue to have physiotherapy and occupational therapy to improve your balance and memory. Your local bladder and bowel service will be able to advise and offer support for incontinence. Over time you may find your symptoms worsen but it is not possible to predict when or how long this would be.

It may be helpful to think about your lifestyle and home environment, and identify changes you might make to ensure you can continue doing things you enjoy, and are important to you, if your mobility declines further. Some people may decide to downsize their home, or move to a home without steps or stairs. Other people may opt to stay put, with adaptations such as a stairlift or downstairs WC. An OT would be able to advise on changes that will keep you safe and independent for as long as possible. This service can be contacted through your local council’s Social Services department. If you think you need more care, contact your Social Services and request an assessment of your needs.

It may also be time to consider what would happen if you become unable to make decisions on your treatment or finances. Talking to your solicitor about Lasting Power of Attorney can give you and your family peace of mind. This would need to be completed while you are still able to make your own decisions, as would creating a Will, so consider talking this over with your family.

 

What else would be useful to know?

All shunts have different properties, and at certain times, such as preparing for an MRI, this information will be needed. There are also some precautions you need to take with some, but not all shunts, around strong magnetic fields, so it is definitely worth finding out what shunt you have.

Shine has a Shunt Alert Card, on which you or your hospital can record your shunt type and carry with you. This would let emergency services know about your condition and your shunt if you were taken ill. To order a shunt alert card, have a look at our NPH resources on the website here, or contact our team on firstcontact@shinecharity.org.uk call 01733 555988.

If you have a shunt inserted, do read Shine’s information on shunts. ‘Know Your Shunt’ explains the importance of knowing the make and model of your shunt.