I have a new menigioma diagnosis

What is a meningioma?

When you have received a meningioma diagnosis, you may experience a variety of different emotions and feel unsure where to turn.

In this section, you will find out more information about meningiomas, as well as details about how brainstrust can support you.

The meninges layers

Meningiomas are a type of brain tumour. A meningioma is a tumour that starts in the meninges. The meninges are layers of tissue (membranes) that cover and protect the brain and spinal cord. There are three layers: the dura mater, the arachnoid and the pia mater.

This two-minute video explains the meninges and the layers.

The dura mater

This layer surrounds and supports the large channels that carry blood from the brain toward the heart.

The arachnoid

This middle layer helps protect the brain and spinal cord from sudden impact.

The pia mater

This layer is next to the brain and follows its contours. It acts as a barrier and aids in the production of cerebrospinal fluid.

Meningiomas

Most meningiomas are slow-growing tumours, although some can grow faster. Although the majority of meningiomas are non-malignant, these tumours can grow slowly until they are very large, if left undiscovered. In some locations, they can be severely disabling and life-threatening. Other forms of meningiomas may be more aggressive. Most patients develop a single meningioma; however, some patients may develop several tumours growing simultaneously in other locations in the brain.

We don’t know why these tumours start, although there are predisposing factors associated with meningiomas. These include exposure to radiation (e.g. in the treatment of childhood cancers, such as leukaemia), prolonged use of certain hormones (e.g. in gender-reassignment treatment) and some genetic disorders (e.g. neurofibromatosis). We know that non-malignant meningiomas are also more common in women than in men, and they may show increased growth during pregnancy.

Why we don't call meningiomas benign

A word about benign meningiomas. At brainstrust, we don’t use the word benign. We call these tumours non-malignant. About 80%–90% of meningiomas are non-malignant. It is hard calling something benign when these tumours can be life-changing, disabling and come with a high symptom burden. Calling a meningioma benign can devalue the impact that it has on someone’s life.

Types of meningiomas

The World Health Organization (WHO) classification of brain tumours is the most widely used tool in grading brain tumour types. The WHO classification scheme recognises variations of meningiomas according to their cell type as seen under a microscope. These variations are called meningioma subtypes – the technical term for these variations is histological subtypes.

These histological subtypes are organised into three grades, which generally reflect the rate of growth and likelihood of recurrence.

Name

Location

Convexity meningiomas

These grow on the surface of the brain, often towards the front and top of the brain. They may not produce symptoms until they reach a large size. Symptoms of a convexity meningioma are varied and can include headaches, seizures, weakness, numbness, vision loss, or other focal neurological deficits.

Falcine and parasagittal meningiomas

The falx is a double-thickness membrane that divides the two sides of the brain front to back. Falcine meningiomas arise from one or both sides of this membrane and may spread along the falx to extend far from the original tumour site. A major blood vessel (superior sagittal sinus) runs along the top of the falx and is responsible for draining blood from a large sector of the brain. Large parasagittal meningiomas may result in leg weakness. Falcine and parasagittal meningiomas are more likely to be higher grade than meningiomas in other locations of the brain.

Olfactory groove meningiomas

Sphenoid meningiomas grow at the base of the skull on either side. These tumours can cause bulging of the eye, visual problems, altered sensation in the face, or seizures, Sphenoid wing meningiomas sometimes involve the critical blood vessels supplying the brain (e.g. carotid artery branches)

Petrous and petroclival meningiomas

Meningiomas of the petrous bone grow at the base of the skull and may involve a number of critical cranial nerves, including the one supplying sensation to the face, the hearing nerve and the nerves controlling facial movement and eye movement. These are some of the most challenging meningiomas to treat and should be evaluated by a skull-base specialist.

Posterior fossa meningiomas

Posterior fossa tumours arise in the back of the head. These tumours are associated with many different symptoms, depending on their point of origin. They include tentorial meningiomas, posterior petrosal and petroclival meningiomas, jugular foramen meningiomas and foramen magnum meningiomas. Because of the tight space in the back of the brain, growth of these tumours can cause elevated pressure in the brain, leading to headaches, unsteadiness or dizziness. They can also lead to changes in voice and swelling, decreased hearing, changes in facial strength or double vision.

Intraventricular meningiomas

Intraventricular meningiomas are very rare meningiomas that arise from chambers of cerebrospinal fluid, which circulates throughout the brain and spine. They can block the flow of cerebrospinal fluid and cause an increase in pressure, leading to headaches and dizziness.

Intra-orbital meningiomas

Intra-orbital meningiomas grow around the eye sockets and can cause pressure in the eyes, resulting in a bulging appearance. They can also cause an increasing loss of vision.

Spinal meningiomas

Spinal meningiomas account for less than 10% of meningiomas. They are intradural (within or enclosed within the dura mater), extramedullary (outside or unrelated to any medulla) tumours occurring predominantly in the thoracic spine. They can cause back pain, numbness, or weakness in the limbs from compression of the spinal cord, or by exiting the spinal cord.

Grades of meningiomas

This is where it gets a little complicated. Meningiomas are graded I to III. Grading is based on histopathology – the study of the disease and the cells and tissues. So in this instance, histopathology can only be achieved by doing a biopsy or removing the meningioma, and that would then be sent for analysis.

WHO grade

Frequency

Chance of recurrence

Molecular markers

Grade I

80%-90%

7%-20%

Loss: 22q

Grade II (atypical)

5%-50%

30%-40%

Loss: 11p, 6q, 10, 14q, 18q

Gain: 1q, 9q, 12q, 15q, 17q, 20q

Grade III (anaplastic)

1%-3%

50%-80%

Loss: 9p

Amplication: 17q

Symptoms of meningiomas

Meningiomas are typically slow-growing tumours, with the most common classification of meningioma being grade I. This means that most symptoms will occur gradually, if at all.

Not all meningiomas cause symptoms, but symptoms may be caused by the tumour pressing on other parts of the brain as it grows, or a build-up of pressure. This means that symptoms will vary according to the size, location and growth rate of the tumour.

Possible symptoms include:

New, persistent headaches

Nausea or vomiting

Behaviour and personality change

Confusion

Drowsiness

Weakness in an arm or leg

Balance issues

Seizures (fits)

Sight problems

If you are concerned about any symptoms, always seek medical advice.

Support for you

When you are told you have a meningioma, you may feel many different emotions, including fear, anger and possibly confusion. At this stage, it is important to know what support is available to you. You may not feel like you need it straight away, or you may want to access it all – it is entirely up to you. The key thing to know is how we can help.

Coaching

At brainstrust, we have a team of trained coaches. We listen, listen some more and then ask questions. Coaching can help you focus on achieving specific immediate goals that relate to specific areas – for example, weighing up the pros and cons of having a particular treatment or coming to terms with your diagnosis. Coaching is also about developing strategies and clarity to achieve a better quality of life.

If you would like to know more about coaching, or if you want to arrange a conversation with one of our coaches, get in touch with us at hello@brainstrust.org.uk or call our helpline on 01983 292 405.

Meningioma Meetups

Every month we put on a virtual ‘meningiomas matter’ meetup, its a space for you to meet other people going through similar experiences. You can share experiences and tips, form connections, and just have a natter and relax with others who understand.

It can often be a great source of support and comfort to connect with others who understand and are going through a similar experience. Join our monthly virtual Meetup ‘Meningiomas Matter’, and chat with other people living with a meningioma diagnosis. There is no agenda – it is just an opportunity to get together with other people who understand.

Subscribe to our mailing list to hear about all the latest news, events, research and resources

Fields marked with an * are required