Introduction
An arteriovenous malformation (AVM) is an abnormal tangle of blood vessels, connecting arteries and veins in the brain. This means that high pressure blood enters veins which are not built to withstand this pressure, in addition the arteries tend to be larger and can develop areas of weakness. As a result, some AVM’s can burst causing bleeding into or around the brain.
A brain haemorrhage from an AVM affects a person suddenly and usually without any warning. It is a leakage of blood into and around the brain from one of the blood vessels in the AVM. How a person is affected depends on the size and location of the bleeding.
A brain haemorrhage often causes the sufferer to develop sudden and severe headache, which is often accompanied by nausea and vomiting. Sometimes people will develop a problem with their speech or vision, a weakness to their arms or legs, they may collapse, have a seizure or lose consciousness.
Diagnosis and Investigations
A brain haemorrhage is confirmed by a CT scan, this is a scan of the head used to detect blood in or around the brain.
The cause of the bleed is usually detected by a special type of CT scan, requiring injection of contrast (dye) into a vein, called a CT angiogram. This looks in more detail at the blood vessels of the brain and can confirm whether an AVM is present.
An MRI scan may also be performed. This uses a magnetic field to get a detailed picture of the position of the AVM in the brain in relation to other important structures and is used to plan management.
In some cases, a catheter angiogram is also needed. This involves passing a small catheter tube via either the wrist or groin all the way to the brain blood vessels and injecting contrast (dye). This gives more detailed information about the blood supply to the AVM.
Treatment options for AVM’s
At Salford Royal, the best treatment option is decided in a discussion between clinical staff (surgeon and radiologist) and this is then discussed with the patient and/or family. Treatment is usually planned for a time after the blood from the presenting haemorrhage has settled down, this may be a few weeks.
These discussions will consider; the AVM’s size and location, and how it is supplied by arteries and veins along with the patient’s age and general health
Any treatment carried out on the blood vessels of the brain carries the risk of serious complications including stroke and death. Therefore, treatment is only considered if the benefits of the treatment are greater than the risks of the treatment to the patient.
The aim of treating an AVM is to reduce the risk of future bleeding, this may require one, or a combination of the following treatments:
Surgical treatment
An open micro-surgical operation on the head is performed under a general anaesthetic in the operating theatre.
During this procedure, the AVM is surgically removed by closing off the blood vessels that supply it and removing the abnormal tangle of vessels.
Surgical treatment can be curative if the whole of the brain AVM can be removed safely.
Stereotactic radiosurgery
This treatment involves the brain AVM being targeted with beams of high dose radiation. The treatment is carefully planned to precisely target the AVM with narrow beams that avoid any damage to other areas of the brain. A specially measured frame will be fitted to help to keep the patients head in the correct position for the treatment. The treatment causes the abnormal blood vessels to close off over time.
Stereotactic radiosurgery can be a curative treatment or can reduce the size of the AVM.
Endovascular treatment
During endovascular treatment, a liquid glue type material or small metal coils are used to reduce the blood flow through the brain AVM.
With the patient under general anaesthetic, a catheter is introduced at the groin into the major artery and navigated, using x-ray screening into the AVM.
This treatment is usually used to aid with surgical excision or stereotactic radiosurgery rather than as a standalone treatment.
Conservative management
In some cases, doctors may decide that the risks of treatment are greater than the risk of further bleeding and that the safest option is to monitor the AVM with future scans.
Complications in hospital
Hydrocephalus
After a brain haemorrhage, there is a chance that fluid around the brain can build up as the fluid pathways get blocked with the blood in and around the brain. The build-up of fluid can make someone very unwell. This problem can be relieved by surgically inserting a drain to take away excess fluid. The drain can be placed inside or outside of the body.
It may only be a temporary measure until the problem settles spontaneously, however, in a small number of cases, a drain on the inside of the body is needed permanently (a shunt). If this is required a general anaesthetic will be given and a fine tube is inserted into the fluid chambers of the brain. Further tubing is then attached and passed under the skin down into the cavity between stomach and intestine.
Seizures
Seizures can occur at the time of the haemorrhage or after. If you do have any seizures these can usually be controlled with medication
Recovery advice
How long will it take for me to recover?
The time it takes to recover is very variable and will be influenced by many factors. However, recovery will take a minimum of 4-6 weeks and may take many months.
On average, individuals will take at least 3 months before they feel capable of returning to their previous level of activity, including returning to work. Don’t be concerned if your recovery period appears to differ from that of others, you will recover at your own pace.
What should I be doing whilst recovering?
You are likely to feel tired for some time, and therefore you should rest whenever you feel the need to. In the first few weeks it is advisable to plan to have a rest period each day. As you begin to feel stronger you should gradually resume your previous activities, building up as you feel able. Try to avoid doing too much too soon. You will have good days and bad days.
What can others do to help?
Following discharge, practical support will be needed such as shopping and transport. Emotional support will also be needed - you must allow yourself time to regain your independent lifestyle as far as possible.
When should I return to work?
You will require a period off work. The exact amount of time will vary according to your individual rate of recovery, and the type of work that you do. However, on average, individuals will need to be off work for at least 3 months, and often longer. Some people who recover quickly, and do very well, may be ready to return to work before this time.
You should return to work when you feel physically and mentally capable of doing so, and ideally following discussion with your GP, surgeon, or specialist nurse. Regardless of the type of job, you are advised to discuss your situation with your employer and where possible you should initially start back on reduced hours and/or lighter duties, and build up, as you feel able.
Will I be able to drive?
Everybody who has a brain haemorrhage and holds a driving licence must inform the Driver Vehicle Licensing Authority (DVLA), this is a legal requirement. An example of a suitable letter can be found on page 10, or a form can be downloaded from the DVLA website. DVLA contact details can be found in the Useful links.
If you do not inform the DVLA, or continue to drive, you may find your insurance is void and you may be liable to criminal prosecution. The DVLA will ask you to complete a form, and collect information from your doctors, before deciding how long you will be suspended from driving.
Everybody will need to refrain from driving for a period whilst they recover, the length of which will vary depending on the location of the AVM, the treatment you have had and your clinical recovery.
The minimum is likely to be six weeks and may be up to a year before you will have recovered to a point that you will be safe to drive. Suspension for group 2 driving licence entitlements will be loner then for group 1.
A typical letter to the DVLA would be:
Dear Sir/Madam
It is my duty to inform you that I have recently been an inpatient at Salford Royal's Centre for Clinical Neurosciences after suffering a intracranial haemorrhage from an AVM.
I was under the care of (consultant neurosurgeon/ neuroradiologist) who can provide you with further information.
This letter should then be sent to Drivers Medical Group, DVLA, Swansea, SA99 1DL.
Following a brain haemorrhage from an AVM, you may experience one or more of the following symptoms:
Headaches
A sudden and severe headache is characteristic of a brain haemorrhage. Headaches over the first few days will remain quite severe, but constant. This is due to the blood that is present in and around the brain, causing ongoing irritation. This blood will be slowly broken down and reabsorbed naturally but may take several weeks to do so.
General frequency and severity of headaches will reduce as time goes by, but many people find that they may be more prone to headaches over the coming months. After the first couple of weeks, headaches may be associated with tiredness or following periods of concentration for example.
Pain killers such as paracetamol can be taken as need. If you still have concerns then you should discuss them with your GP, specialist, or specialist nurse.
Tiredness
Overwhelming tiredness is the most common symptom that people experience following a brain haemorrhage and takes the form of both physical and mental fatigue. In the first few weeks, normal daily activities such as taking a bath, will leave people exhausted.
Tiredness is the body’s way of telling you to rest. As time goes by the amount of rest needed will get less, it is common in the first six weeks or so that a rest period during the day will be required. You may find a worsening of common symptoms, such as headache, when tired, and may cause unnecessary worry.
A gradual return to previous activities is recommended; it is likely that resuming all previous activities will take at least 3 months, and often longer. You may find that you have a reduction in your level of stamina for a year or more.
When in hospital the occupational therapist will complete an assessment of activities of daily living such as meal preparation when you are mobile. Also fatigue management strategies in relation to your activities of daily living during the assessment will be discussed.
Cognitive (thinking) difficulties
Cognition describes functions such as memory, concentration, decision-making and general thought processes. Some of these functions may be affected to varying degrees after a brain haemorrhage, some people may find that they have more difficulty learning new skills or information.
The Occupational Therapist will complete a cognitive screening assessment prior to discharge and advise you of strategies to manage any difficulties in relation to your activities or daily living.
Memory problems
Memory problems may be subtle, or more noticeable, temporary, or permanent. You are unlikely to remember a lot of your time spent in the neurosurgical unit, this is normal. Short-term or day- to-day memory can commonly cause people difficulties after a brain haemorrhage.
Memories prior to the haemorrhage remain intact for most individuals, but it is day-to-day memory that can be impaired to varying degrees, such as things people tell you, or what you have gone to the shop for.
Memory difficulties are very common during the initial period following the haemorrhage but will improve throughout recovery. You may notice that short-term memory difficulties are more apparent when you are tired. Your memory may completely recover. However, some people find that their short- term memory is never quite as good as it was before. If memory problems persist a referral to a Neuropsychologist may be useful.
Difficulty concentrating
You may find that your ability to concentrate is affected, but again, like memory, this will gradually improve with time. You may find that you can only concentrate for shorter periods of time, and that concentration is more easily broken by distraction.
In the early stages you may find that you need to concentrate more intently when carrying out previously straightforward tasks. If you find concentration difficult, it is advisable to avoid trying to do more than one or two things at one time, and, if possible, avoid distractions or interruptions.
Feeling more emotional and/or anxious
After leaving the security of hospital you may feel a lack of confidence and may feel isolated and fearful of the future. Some fear recurrence of the illness. Men and women alike often find that they are more emotional.
You may experience mood swings, and find that you feel like crying more easily, or for no reason. You may find that you feel quite low on occasions throughout your recovery. Feelings of low mood and depression can be common during recovery, and often occurs during the first few months.
These feelings generally improve with time, but if you are feeling low it may be worth discussing it with your GP. You may also find that you and your family can get quite emotional when thinking about all that you have been through.
Often individuals lose their confidence and generally feel more anxious about day-to-day activities. Confidence will slowly be regained as progress through recovery takes place.
In the early stages you may feel unhappy going out alone or speaking to strangers.
You may find yourself feeling stress more easily; when you are experiencing a stressful situation, you may notice more difficulties with memory and concentration, and you may find you are more likely to develop a headache.
You may find it useful attending a support group and speaking to others who have had similar experiences, or you can contact your specialist nurse or neuropsychologist if you need to talk. You can also find relevant helplines details in Useful links.
Physical disability
Occasionally people have a weakness of one or more limb. The severity of the weakness can vary from person to person, as can the response to therapy. You will be assessed by a physiotherapist and offered an exercise programme if appropriate.
Strength in limbs generally improves over the months following the brain haemorrhage. In the initial weeks after the bleed, it will be difficult to predict the final physical recovery any given individual will make.
Speech/communication difficulties
Some people find that they often have problems with finding the right words, or that speech may be a little slurred, or slowed, particularly when tired. In most cases this gradually improves.
Speech difficulties may vary, and a speech and language therapist will assess those people with serious speech difficulties.
Symptoms specific to surgery
Discomfort in Jaw
During the operation the surgeon may have cut the muscle at the temple to expose the skull. This muscle is involved in the movement of the jaw, and many people experience discomfort, stiffness, and a limitation of opening of the jaw, for example, when chewing or yawning. This muscle will slowly heal, and as it does this pain and stiffness will improve.
Facial swelling
The majority of facial swelling will go down in the first week, but sometimes swelling around the temple area may be more persistent. People who wear glasses are often aware that the arm of the glasses seems to dig in a little. Some people also find that for a few weeks their eye(s) may be puffier in the mornings, gradually settling once they have got up. These symptoms may be variable from day-to-day.
Pain or numbness around the scar
The scar will feel more sensitive generally and may feel itchy or have a sensation of pins and needles some of the time. The nerves that supply the sensation to the scalp will have been damaged during the surgery, making the area around and behind the scar feel numb.
This area of numbness will gradually reduce in size, but the scar itself may always be numb. Odd creeping sensations and sharp pains are also common. If the wound becomes tender, red, inflamed, and hot, and/or begin to weep, you should contact your neurosurgeon or specialist nurse. The area around the scar may also feel lumpy and uneven, this is due to the piece of bone that was cut during the surgery, and stitches under the skin. The piece of bone may feel as though it moves in and out slightly on occasions, this is due to normal pressure changes inside the head, and whilst it may feel strange, it is not a problem.
Symptoms specific to endovascular treatment
Bruising/tenderness in the groin
You may experience some discomfort in the groin area where the catheter was inserted into the artery. This will settle down over a couple of weeks. If pain persists, or gets worse, or you notice the area to be red, hot, inflamed or weeping, then you should contact your neurosurgeon, or specialist nurse.
Patchy hair loss
Some patients have reported a patch of hair loss following coiling treatment. This is because of the x-rays used during the procedure. This usually is a temporary symptom and resolves after a few months. Please feel free to discuss this further with your consultant or specialist nurse.
Useful contacts
Hospital professionals that you may have contact with as an in-patient or an outpatient:
The Neurosurgeon will be responsible for your in-patient care and management. He or she will also carry out any surgical procedures that are carried out when you are acutely ill.
The Neuroradiologist is the consultant Doctor who will carry out radiological treatments such as coiling.
The Physiotherapist is involved in rehabilitation. He or she can help the person to gain mobility, confidence, and independence as far as possible. The aim of physiotherapy is to promote independence as far as possible.
The Occupational Therapist (OT) may also be involved to help gain independence as far as possible with activities of daily living.
The Speech Therapist will assess language problems that may be encountered after a haemorrhage and offer a programme of therapy.
Your General Practitioner (GP) is your first point of medical contact once home. For example, if you need a sick note, a review of your medication or blood pressure monitoring, you should attend your GP surgery. Your GP should be your first point of contact for the prescription of drugs and the specialist nurse can advise you.
The Specialist Nurse can give you vital information about your illness and treatment, advice, and reassurance that you will find helpful once you are home following your brain haemorrhage. She is your link to the team at the Specialist Neuroscience Centre. The specialist nurse may be able to assist you in managing symptoms that you experience in recovery and advise on the issue of return to work.
The Neuropsychologist can help if you experience emotional distress such as symptoms of panic, depression, or anxiety. If you have persistent problems with your day-to-day memory, attention or difficulty with the planning and organising yourself, again, it would be appropriate to see a neuropsychologist in this instance.
The Social Worker can provide information and advice on benefits and services that are available in your local area. They can be contacted through your local Social Services Department or through the hospital where you were an in-patient.
The Welfare Rights Officer can give advice regarding benefits and services. Again, they can be found within the local hospital or Citizen’s Advice Bureau.
The Community Rehabilitation Team is a team of therapists in your local area that may continue working with you if necessary after you are discharged home from hospital.
Frequently asked questions
Could I have prevented it?
In most cases, there are no signs or symptoms of a brain AVM until it bursts, causing a brain haemorrhage. It is unlikely that there is anything you could have done to prevent it or predict it.
Why me?
Brain AVMs are very rare, affecting less than 1% of the population, they form during the brain’s development in the womb before birth. Most people are not aware that they have an arteriovenous malformation until they cause symptoms.
My hearing seems different – is this normal?
Often people describe being more sensitive to noise, finding it more difficult to cope with. Everyday noise such as the television, or the sound of conversations in a pub can be just as difficult to cope with as loud noises. Equally some people describe their hearing as muffled as if they are under water.
My vision does not appear to be as good – is this normal?
You may experience a change in your vision. You should discuss any visual difficulties with your doctor or specialist nurse, Vision may settle down and improve over the first few weeks. However, for some people the brain haemorrhage will cause permanent changes to their vision.
What effect can my illness have on my family
A brain haemorrhage from an AVM is a sudden and sometimes life changing event that mostly occurs without warning, and effects not just the individual who has had the bleed, but the whole family. It is a very worrying period for all involved and often more so for your family who are completely aware of all that is going on during the acute stage of the illness. During the recovery period, whilst you will need a lot of rest and care from your family, you will also need to slowly return to your normal activities and build up your strength. Family members need to take care of themselves as well, and although they may be worried about you, they should avoid being overprotective.
Family members can often experience feelings of anxiety and go through low periods. Spouses or partners will need support themselves and may benefit from attending a support group and/or speaking to others who are experiencing or who have experienced a similar situation. The family needs to take time to relax.
Can I pass the risk of an AVM on to my children?
Although brain AVMs are likely to occur during the foetal development stage, it is very rare for them to be hereditary. Therefore, it is unlikely your family will require any screening.
When is it safe for me to have sex?
Many people are nervous about returning to a normal sex life, and for some, libido, or sex drive can be reduced. It is safe for you to have sexual intercourse as soon as you feel ready. Having sex in the future will not increase your risk of having a brain haemorrhage.
When can I recommence HRT/oral contraceptive?
This type if medication can usually be recommenced once you are recovered and a resuming normal mobility again. You should contact your GP for advice on this issue.
Is it safe to get pregnant?
If you are thinking of becoming pregnant, then it is advisable to discuss this with your doctor or specialist nurse.
Can I fly?
There is nothing to stop you flying once you are fit enough to do so. You should take the usual precautions, such as adequate fluid intake and keeping mobile during the flight. You may feel particularly tired and should allow for this. It is also important that you inform your travel insurance provider of your recent hospital stay.
Will I be entitled to any benefits?
When off sick from work for a period, you will either be entitled to sick pay from your employer, or you are likely to be able to claim benefits appropriate to your specific situation. You should contact an agency such as the Citizens Advice Bureau, or Welfare Rights to discuss your individual circumstances, and the benefits you may be entitled to. The telephone number for local offices will be in the telephone directory. Your spouse, or partner may also need to take time off work while you are in hospital, and for a period when you come home. If you think that income might be a problem, you should speak to your bank or building society early on to explain the situation, particularly if you have loans and/or a mortgage.
Useful links
Here are a selection of agencies and organisations that you may find useful:
A.C.A.S.
Help and information regarding employment issues
Telephone: 01252 811 868
Website: www.acas.org.uk
B.A.S.I.C. Brain & Spinal Injury Charity
Address: The Neurocare Centre, 554 Eccles New Road, Salford, M5 1AL
Telephone: 0870 750 0000
Email: enquiries@basiccharity.org.uk
Website: www.basiccharity.org.uk
Department of Work & Pensions
Government agency responsible for benefits Public enquiries Office:
Telephone: 020 7712 2171
Website: www.awp.gov.uk
For local offices see telephone directory
British Brain & Spine Foundation Charity
Organisation providing information and a helpline
Telephone: 0808 808 1000
Website: www.brainabdspine.org.uk
British Epilepsy Association Charity
Organisation providing information and support about epilepsy
Telephone: 0808 800 5050
Email: helpline@eplipesy.org.uk
Website: www.epilepsy.org.uk
Carers UK
Information and support for people who are caring at home
Telephone: 020 7940 8818
Email: info@carersuk.org
Website: www.carersuk.org
Citizens Advice Bureau
Independent advice on issues such as benefits, employment, debt, etc.
Local office numbers in telephone directory (National Association of CAB).
Telephone: 0207 833 2181
Website: www.citizenadvice.org.uk
CRUSE
Bereavement care charity offering bereavement counselling and support.
See telephone directory for local branch
Telephone: 0870 16 1677
Email: helpline@crusebereavement.org.uk
Website: www.crusebereavement.org.uk
Different Strokes
Support for younger stroke survivors
Telephone: 0845 1307 172
Website: www.differentstrokes.org.uk
DVLA
Address: Driver Vehicle Licensing Authority, Drivers Medical Group, DVLA, Swansea, SA99 1DL
Medical Enquiries:
Telephone: 0300 790 6806
Website: www.dvla.gov.uk
Relate
Charity providing relationship counselling
See telephone directory for local branches.
Website: www.relate.org
Headway
Charity providing information and support for individuals with brain injury
See local telephone directory for local branches
Telephone: 0808 800 244 Freephone
Email: enquiries@headway.org.uk
Website: www.headway.org.uk
The National Society for Epilepsy (NSE)
Address: Chesham Lane, Chalfont St Peter, Bucks, SL9 ORJ
Telephone: 01494 601 400
Website: www.epilepsynse.org.uk
The Stroke Association
National Charity providing support and information
Telephone: 0207 566 0300
Website: www.stroke.org.uk
Date of Review: July 2025
Date of Next Review: July 2027
Re No: PI_M_2101 (Salford)