Discharge guide for patients following surgery for epilepsy

This leaflet contains information and answers to frequently asked questions for patients who have had surgery for epilepsy.

Going home after brain surgery – what is next?

An appointment will be made 10-12 days post-surgery for a wound check and suture removal at The Walton Centre. After you are discharged from hospital an appointment with a nurse specialist will be arranged in 4-6 weeks’ time to check in on your recovery. A follow up appointment will be made with your surgical team for review, usually around three months after surgery. You will continue to have routine reviews with your Consultant Neurologist.

Recovery

After brain surgery every person’s recovery is unique. Some people will recover quite quickly, whilst for others it may take longer. The after-effects of an anaesthetic may take a few weeks to wear off. Most people experience some of the more common symptoms, these include:

• Tenderness or numbness around wound - This can be because nerve have been cut. As the nerves grow back you may feel unusual sensation such as pins and needles or tingling. This should continue to settle over several months.
• Headache - Headache following the surgery is expected. You will be prescribed regular painkillers. Once discharged home you can take simple over-the-counter painkillers such as paracetamol or speak to your GP. Headaches may persist from a few weeks to months, but should become less severe.

These symptoms should continue to improve in the days following surgery.

• Swelling and/or bruising - Bruising and swelling around the face and eyes is common. This usually settles within several days, however it can be uncomfortable and painful, regular painkillers can be given to help these symptoms.
• Pain when chewing or yawning - The muscle used for chewing can be affected. This should gradually resolve over the days and weeks following surgery. You may have some bruising and swelling around the face and eyes, this can appear alarming but isn’t cause for concern.
• Tiredness (fatigue) - Tiredness is very common following any brain surgery and regaining your energy levels can take time. Some tips to help include:
  • Allowing yourself time to recover - don’t expect too much too soon
  • Try to build up your stamina and exercise tolerance gradually - a gentle walk can be a good place to start
  • Allow time to rest
  • Eat a balanced diet
  • Remember – exercise is good for you and will help with your overall recovery
• Noises or “whooshing” sensation - Following your surgery, you may notice some unusual sensations in your head as things settle down. These are often described a “crackles, pops, whooshes or drips”. If your surgery was near your ear, you may have a dull earache.

All of these symptoms should settle down over time.

Red flag symptoms

These are thing to watch out for when you go home, as they may need medical attention:

• Red, sore or leaking wound - If your wound leaks a clear or straw-coloured fluid, or any pus, please contact either the surgical team or the ward you were discharged from so we can arrange for you to attend the centre and have the wound assessed.
• Nausea or vomiting
• Severe or worsening headache
• Increasing number or change in seizures
• A soft fluid-like swelling behind or close to the scar - This is a collection of brain fluid accumulating under the skin and is called a pseudomeningocele. (This will usually settle on its own, but please ring us for advice).

If you experience any of these symptoms, please contact the surgical team or the ward you were discharged from, contact details at the end of leaflet. In case you don’t manage to get in touch please attend your GP surgery or A&E on the same day they symptoms begin.

Mood

About a quarter of people experience mood swings, anxiety and depression following epilepsy surgery. This can be more likely if you have had low mood, anxiety, and depression in the past. Usually, these symptoms improve over the next few weeks or months. If your symptoms are lasting longer, do not get better, or become worse you should contact the team and your local GP.

In a small group of patients, a more serious psychiatric disorder, psychosis, can occur after epilepsy surgery. This can include disturbing thoughts and abnormal beliefs. If this happens you should urgently contact your GP or local mental health team. In emergency you should attend local A&E department.
Most mental health complications following surgery will resolve themselves or respond well to treatment with anti-depressants and other treatments such as counselling or psychotherapy. In more severe cases may include inpatient treatment.

Post-surgery and follow-up

An appointment will be made in the outpatient clinic, for review with both your surgical and neurology team, and with the epilepsy specialist nurses to offer support after surgery.

What we tell your GP

Your GP will be informed of your hospital stay and will receive:

• A discharge treatment summary giving details of your surgery and follow up plans
• A medications summary including details of any medications that have been started or changed during your hospital stay.

Frequently asked questions

When will the stitches (sutures) be taken out?
Usually around 7-10 days after surgery. This may be a little longer if you have previously had surgery. You may be asked to come to The Walton Centre for a wound check and removal of sutures. The ward staff will tell you the date your stitches are due to be removed and who will be performing this.

Do I still need to take my epilepsy medication?
Yes, it is very important you should continue to take your usual epilepsy medication. Some patients can reduce the amount of epilepsy medication they take over time, but this should only be done under guidance from your medical team and consultant.

When can I wash my hair following surgery?
You need to wait for a minimum of 48 hours. When washing your hair you should use a gentle shampoo or the hair wash provided to you before coming into hospital. Be careful not to rub around the wound area. It’s not a problem if some water runs onto the wound, you can gently pat the area dry with a clean towel. If there has been any leakage from the wound or you have had previous surgery, you may be advised to wait a little longer before washing your hair.

When can I dye my hair again?
You should wait at least six weeks. This will ensure your wound is fully healed.

How long before I can travel?
There is no specific guideline regarding the minimum time before you can travel, including air travel. The general advice from The Walton Centre however is to wait for around 6 weeks from your operation. Due to the altitude and change in cabin pressure during a flight flying before this time may cause a notable headache, most patients prefer to wait to avoid this.

When can I drive again?
DVLA regulations state you must be seizure free for 12 months before re-applying for a private car or motorcycle driver’s licence. This may vary depending on the type of seizure you have, and they type of licence you hold. This will also depend on any medication reduction plans that are made with your consultant following surgery. The DVLA may also require you to have a visual field test after your surgery, this can be arranged locally at most opticians.

When will I be able to return to work?
This will depend on your individual recovery following surgery and the type of job you do. Most people need a minimum of 6-12 weeks, although this can be longer if, for instance, your job requires you to drive, work at heights or with machinery. You should avoid any strenuous activities such as pushing and pulling. You can discuss this with the team in clinic before your treatment. If you are worried about financial issues, there are lots of information access points we can direct you to, including benefits advice from Epilepsy Action and The Brain Charity.

What about mood?
It’s usual to have a dip in mood soon after surgery. About a quarter of people experience mood swings, anxiety, and depression after epilepsy surgery. This can be more likely if you have had mood, anxiety or depression in the past. Normally we expect this will improve over the next few weeks or months. But if it affects you for longer, or you have talk to your epilepsy surgery nurse or doctor, to see how they can help you.

When can I return to exercise?
It is important after surgery to rest and recuperate. Tiredness can be common after surgery, and it may take time to build up your stamina. Gradually building up you physical and mental activities slowly over the following weeks is advisable.

When can I have sex after surgery?
As soon as you feel physically and mentally ready.

When will I know if surgery has been successful?
Before surgery the team will have carefully discusses the aims of your surgery. This may have been to completely stop seizures, or to reduce the number or severity of your seizures. It can take up to two years after surgery before the full benefits can be assessed.

What if surgery fails?
Unfortunately, surgery has no guarantee of being completely successful. If your surgery does not lead to a reduction in seizures or completely stop your seizures, the team will reassess and consider further option which may include further surgery.

A note from the Therapy Team

You may have seen an occupational therapist or physiotherapist during your admission. They are healthcare professionals concerned with enabling you to be as independent as possible with everyday activities.

These activities can include walking, balance exercises, managing stairs, managing tasks such as dressing, cooking, shopping, leisure activities and work. As well as giving you advice, the occupational therapist or physiotherapist may arrange for you to have equipment such as walking aids to assist your recovery.

If you saw a therapist during your stay, they will have discussed with you any ongoing referrals or recommended treatment. The inpatient occupational therapy and physiotherapy teams can be contacted on 0151 529 5452/1. However, if you did not see a therapist during your inpatient stay, then you could discuss your concerns with your Epilepsy Specialist Nurse or GP who will be able to refer you to your local area teams.

Useful contacts

• Switchboard: 0151 525 5611

  Epilepsy Surgery Team - Mr Jibril Osman Farah, Consultant Neurosurgeon. Secretary - Louise Cross 0151 556 3351

• Cairns Ward - 0151 529 5637
• Epilepsy Specialist Nurses
  • Epilepsy Nurse Secretary: 0151 556 3525/3537
    Epilepsy Nurse Advice Line: 0151 556 4008 (Mon-Fri 9am-4pm, excluding bank holidays)
• Appointments - If you have any questions or need to change your appointment - please ring the PACS team on 0151 556 2313

• DVLA - phone number: 0300 790 6801 Mon – Fri 8am-7pm Sat 8-2pm WWW.DVLA.gov.uk
• Epilepsy Action: www.epilepsy.org.uk
• Epilepsy Society: www.epilepsysociety.org.uk
• For practical advice our Patient Experience Team can be of assistance - 0151 556 3090 / wcft.patientexperienceteam@nhs.net 
  The Brain Charity - www.thebraincharity.org.uk / 0151 298 2999 for advice and information for people with neurological conditions and their carers.