Having a craniotomy or biopsy for a suspected brain tumour

A craniotomy is a surgical procedure (operation) where the skull is opened to allow a neurosurgeon to operate on the brain or tissue beneath the skull. A craniotomy can be performed to remove tumours, blood clots or other abnormalities.

A craniotomy is performed to remove all or part (debulking) of a brain tumour. This will provide us with a definitive diagnosis, and this will allow your treating team to provide you with an appropriate treatment plan.

All treatments and procedures have risks, and we will talk to you about the risks and benefits of this surgery beforehand. Your neurosurgeon will talk to you about the specific risks for you as these will differ for each person.

A craniotomy or biopsy is usually performed under a general anaesthetic and your anaesthetist will talk to you about the risks of general anaesthesia. The most common risks of craniotomy include:

Problems that may happen straight away:

• Bleeding
• Infection
• Swelling of the brain
• Direct injury to the brain

Problems that may happen later:

• Infection
• Wound breakdown
• Epilepsy

Problems that are rare, but serious if they occur:

Any of the risks that we have described can be relatively mild or quite serious. They can produce problems similar to a stroke, for example limb weakness, loss of sensation, speech problems, visual problems and swallowing problems. These can be either temporary or permanent. It could be life-threatening.

The overall risk of permanent injury is small, but your individual surgical team will discuss this with you. 

The decision to go ahead with surgery is yours and the team caring for you will help you make the right decision for you. Your team will provide you with all the information you and your family need and respond to all your concerns, as far as possible.

In some cases, surgery may be performed as an emergency procedure, if thought to be in your best interest. 

We will talk to you about all available treatment options; their risks and benefits to help you decide which treatment option is best for you.

  Some tumours can be treated with radiotherapy and/or chemotherapy. A diagnostic operation (biopsy) is needed before those treatments can be considered.  

A biopsy is a diagnostic procedure. It is not a treatment in itself but is done for diagnostic purposes, to guide other treatments. It is usually done under general anaesthetic. A small hole is made in the skull and a computer guidance system is used to place a needle in the suspected tumour. A few pieces of the tumour are removed, each about the size of a grain of rice. Most people are unaffected by their biopsy and remain as well afterwards as they were before the procedure. Often this means that patients can go home within 24-48 hours of the procedure. When the results are ready, you will be called to come back for a discussion.

The biopsy can cause bleeding or swelling. This may not cause any problems but can lead to temporary or even permanent injury, such as weakness or speech problems. There is even a risk to life. The overall risk of a serious complication is about two percent.

There is also a small risk that the biopsy may not produce a result and may need to be repeated. This risk is about one percent.

Any brain operation carries the risk of inducing epilepsy. This risk is small but because of this risk you will not be allowed to drive until you have permission from the DVLA. 

Wherever possible we ask patients to attend the Pre-operative Assessment Centre before coming into hospital for their surgery. A doctor and nurse will see you and can answer any questions you may have. They will ask you about all the medicines you are currently taking and it is advisable to bring a list of your medicines to clinic with you as well as any letters about your medical conditions. Some medicines may need to be stopped before surgery. Do not stop any medicines you are currently taking unless you are advised to do so by the Pre-operative Assessment Centre doctor or nurse.

You will be asked to fast for at least six hours before surgery. Your anaesthetist will tell you what time you should not eat and drink after; they will also talk to you about the anaesthetic and appropriate pain control.

You do not need to cut or shave your hair prior to admission.

We want to involve you in all decisions about your care and treatment. If you decide to go ahead with this procedure, by law we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to have the procedure and understand what it involves. Surgical staff will explain all the risks, benefits and alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please do not hesitate to speak to a senior member of staff again.   

You will be escorted to the operating theatre by the ward nurse looking after you. The theatre staff will introduce themselves to you and complete a safety checklist to confirm your identity and the operation you are having.

Once the anaesthetic is commenced and you are asleep you will be carefully positioned on the operating table. The anaesthetist will monitor you closely and remain with you throughout the procedure.

The neurosurgeon will remove as small an area of hair over the area of the incision. The skin will be cleaned before an incision (cut) is made. An opening is made in the skull and the layers of tissue covering the brain. The surgeon will delicately remove the tumour tissue.

At the end of the operation the layers of tissue, bone and skin are closed and secured using clips or stitches. A drain may be placed under the skin to help prevent blood or fluid collecting. This will usually be removed around 24 hours after surgery.

You will have a drip in your hand to give you fluids until you are well enough to start drinking and these will then be removed.

Once the operation is completed you will spend a short time on the recovery unit until you are well enough to go back to your ward. Some patients may spend a short time on the High Dependency Unit if further monitoring is required. Your anaesthetist will tell you where you will be after surgery.

You should expect to be in hospital for around two to five days. You will be seen during your stay by the medical team caring for you. You may also be seen by other members of the multidisciplinary team such as a physiotherapist or other therapists, depending on your needs.  

Depending on how you have recovered from surgery you may be discharged home or transferred to your local hospital for ongoing care, ONLY if it is required.

You will be provided with a discharge summery and the hospital will send a letter to your GP telling them about your operation, your recovery, and what medications you are taking. We encourage you to read this summery as it has important information to you. It is important you contact your GP soon after discharge, as they will be who you get any continuation of medication from. If you feel unable to do this, then ensure that a family member or carer makes the call.

You will be sent home with your own medication and if we commence new medication, we will provide you with a two-week supply and your GP will review you within a short time and continue your medicines as required.

Medications

Steroid medication (Dexamethasone)

It is most likely you will be started on a steroid medication (Dexamethasone) around the time of your operation. The aim of steroid treatment is to reduce the symptoms of cerebral oedema (brain swelling). Please ask your ward nurse for a copy of our booklet (called Understanding steroids) if you have not already received one. You may be prescribed a maintenance dose or a reducing dose of steroids as these drugs should not be taken long term unless indicated.

Anti-epileptic medication

This medication will be started if you present with seizure activity or experience a seizure after surgery.

These drugs should not be stopped without consultation with your CNS or a specialist neurologist. Your GP must continue this prescription on discharge, and you will be reviewed in your post-surgery clinic.

How to get my medication?

After surgery the ward might provide with two weeks supply of medication if needed, but in the long term the GP will need to update your prescription and provide you with the medication needed.

Who do I call if I have any questions, or I am worried?

You can call your GP or your Brain Tumour Unit CNS when you are back at home. In the community the GP will be your first point of contact for non-urgent issues and if you have any concerns about your health your GP should review you. If your GP has any concerns about your neurological condition, they will advise you to contact the team at NHNN.

If you need urgent medical attention or in an emergency, please go to your local Accident and Emergency Department, by ambulance if necessary. Please remember there is no Accident and Emergency Department at this hospital.

If you have any questions relating to your ongoing support from other services to which we have referred you such as physiotherapy, District Nurses, or Social Services you should contact them directly. They will give you all these contact details before leaving the ward.  

How do I care for my wound?

You will be told, by your ward nurses, how to care for your wound before leaving the ward and given a 'Preventing surgical wound infections' booklet. Your wound will have stitches or small metal 'clips' to help with the healing process. Some stitches are dissolvable and can take up to six weeks to disappear. The ward nurses will tell you what sort of stitches or clips you have and if and when they need to be removed. Clips or stitches are removed between five and 14 days after surgery. This is usually done by your GP or your GP nurse.

If your wound requires further care after discharge, you will need to contact the team.

If you have any itching, redness, pain or leaking of fluid from the wound you should contact the GP (out of hours if needs be) or your Brain tumour CNS (Monday to Friday 09:00-17:00) to seek advice. Your surgeon is keen to do this, so you get appropriate advice. If appropriate you may need to attend the hospital to be seen by the surgical team or you may be advised to go to your local Accident and Emergency Department immediately.

Do not delay in contacting the hospital with wound issues. 

When can I wash my hair?

You can wash your hair 24 hours after your clips or stitches are removed. We recommend using gentle/baby shampoo. Ensure you 'pat' your hair dry; do not rub your scalp.

When can I fly?

You can usually fly about six weeks after surgery but please ensure you ask your team before leaving the hospital or ask your neurosurgical team when you see them in clinic, at follow up.

When can I return to work?

There are no real restrictions about returning to work and you will know when it is the right time for you. If your workplace is happy for you to return on a part time or temporary basis, then there is no reason why you should not return.

If you are handling any machinery, do ask your place of work about local Health and Safety instructions, as it will be them who need to sign that off, NOT us.

We can provide a Sick Note for up to twelve weeks if required. Further sick note if needed will need to be provide by your GP.

When can I commence exercising?

The things you should consider are taking adequate rest to maximise your recovery and also moderate exercise. This should be increased as tolerated each week until you are back to your normal activity level. This can take between two to 12 weeks.

We recommend avoiding high contact sports (ie: rugby or boxing), no restriction with swimming if the wound is completely healed. If you have experienced seizures before or you have epilepsy, we recommend being accompanied in the first few months.

When can I have sex?

When you feel comfortable to do so.

Can I access patient transport?

If required, you can contact the transport department, they will be able to assess your eligibility and provide you with transport if eligible.

When can I drive?

If you have had brain surgery or experienced any seizures you may not be allowed to drive for a period of time, which can be from as little as six months up to 24 months. It is your responsibility to declare this to the DVLA and you may have to send them your driving license. Contact the DVLA on 0870 600 0301 or https://contact.dvla.gov.uk/driving-licence

When will I see my surgeon again?

An outpatient appointment will be arranged by the ward administrator if you are to see the surgeon again - if you go for further oncology treatment you may not see your surgeon again. Your ward nurse, CNS or secretary will clarify this.

You should be given your appointment date and time before going home from hospital or you will receive an appointment letter in the post or on My Care. Please ensure we have your correct address (check with the ward clerk). If you move or change your contact address, it is essential to let the hospital know right away (contact your surgeon's secretary). If you do not receive an appointment letter, please contact your ward or the surgeon's secretary to arrange this for you.

What happens with my tumour sample?

The Division of Neuropathology deliver the most comprehensive molecular testing service for adult CNS tumours in the UK. All low-grade gliomas regardless of the patient's age, and all intrinsic high-grade CNS tumours (gliomas, and ependymal tumours, embryonal tumours) in people under 40 are routinely tested by methylation array and next entry sequencing, assessing up to 250 targets. Furthermore, they routinely test all astrocytomas and oligodendrogliomas for risk stratification and early detection of prognostically relevant genomic alterations (CDKN2A/B deletion, MYC amplification, copy number variations (assessing the watershed of 350 mega bases which discriminates grade 2 from grade 3 astrocytomas).

All atypical meningiomas (grade 2), and all malignant meningiomas (grade 3) undergo an integrated risk stratification using a combination of WHO grade, chromosomal losses, and methylation class. Currently, the Division of Neuropathology is the only service in the UK offering this risk prediction. Furthermore, a novel technology (Nanopore technology) is in development and will help speeding up the turnaround times, hopefully reducing from the current 2 weeks down to 3-5 days.

Macmillan

Macmillan Support and Information Service

UCLH Cancer Centre

Ground Floor

Huntley Street

London

WC1E 6AG

Telephone: 020 3447 8663

Email: supportandinformation@ulch.nhs.uk

Website: www.macmillan.org.uk/HowWeCanHelp/CancerSupportGroups/ CancerSupportGroups.aspx

Brain Tumour Charity

Website: https://www.thebraintumourcharity.org

Brainstrust

Website: www.brainstrust.org.uk

The Brain Tumour Charity Support groups

Website: http://www.thebraintumourcharity.org/support-information/Support/Support-groups

Epilepsy Society

Website: www.epilepsysociety.org.uk

Helpline: 01494 601 400

Department of Works and Pensions (benefits advice)

Telephone: 0800 882 200

Website: www.dwp.gov.uk

The Brain and Spine Foundation

Telephone: 0808 808 1000

Website: www.brainandspine.org.uk

There may be other organisations related to your condition that can help, please ask the ward nurses or your CNS.

You may be entitled to free prescriptions if you are on anti-epileptic medications or have cancer or a malignant tumour.

If you live in London, you may be entitled to apply for TFL Freedom Pass or outside London you can purchase a Disabled Railcard.

UCL Hospitals cannot accept responsibility for information provided by other organisations.

Brain Tumour Unit (Clinical Nurse Specialists)

The National Hospital for Neurology and Neurosurgery

Queen Square

London 

WC1N 3BG  

Direct line: 020 3448 8830  

Switchboard: 0845 155 5000 (There is no additional service charge for using an 0845 number. The cost is determined by your phone company's access charge. / 020 3456 7890

Email: UCLH.braintumourunit@nhs.net

Website: www.uclh.nhs.uk/nhnn