Subarachnoid Haemorrhage. Patient information

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1 Subarachnoid Haemorrhage Patient information What is a Subarachnoid Haemorrhage (SAH)? SAH is due to a leakage of blood from a blood vessel beneath the arachnoid membrane that covers the brain (see picture below) Sub-arachnoid Haemorrhage occurs suddenly and usually without warning. SAH causes a sudden, severe headache and is often accompanied by sickness, vomiting, neck stiffness, photophobia (dislike of light), sometimes with loss of consciousness and/ or seizure (fit). There may be difficulty with speech; problems with vision or a weakness in an arm or leg. There are 3 membranes covering the brain called the meninges; the pia, arachnoid and dura. The blood vessels within the brain lie below the arachnoid membrane. What Causes SAH? Aneurysms Aneurysms are the cause of 75% of subarachnoid haemorrhages. Aneurysms are a fault (or weakness) in a blood vessel wall. They are often berry shaped, like a blister. The ruptured aneurysm requires urgent treatment as once an aneurysm has bled there is a high risk of re-bleed in the short term. SAH from an aneurysm is most common in people between 40 and 60, although they can occur at any age. Occasionally, more than one aneurysm is found. The aneurysm that has ruptured will be treated first. The unruptured aneurysms are not always treated at the same time. It is more usual to wait until you have recovered and come back at a later date to have further aneurysms treated or they may be monitored. 1

2 Diagram of a brain aneurysm Could it have been prevented? NO! There is no known reason why a haemorrhage happens at a particular time, but they can rupture at times of physical effort such as coughing, heavy lifting, straining or during sex. Are there any warning signs? In most cases the aneurysm goes undetected until it bursts. Rarely an aneurysm can press on a particular part of the brain and cause symptoms. No vascular Abnormality Found. In 15% of cases no vascular abnormality is identified. We do not always know why such haemorrhages occur, but we do know that the outlook is good and the risk of a future haemorrhage is very low. In cases where no cause is found, no treatment will be required. Although your recovery will be quicker, you will still need time to recover from the bleed itself (a separate information booklet is available on this type of haemorrhage) Is the Condition Hereditary? Generally, aneurysms are not hereditary but appear to be due to family lifestyle such as smoking. Family members can be referred for investigation for hereditary aneurysms once 2 first line relatives have been diagnosed with aneurysms. They may also be considered for screening if there are a lot of people in your family who have had aneurysms or bleeds from aneurysms. First line relatives are: 1. your brothers and sisters and 2. your children or parents. In order to start this process, speak to your consultant neurosurgeon. They will probably advise you to inform your relative to speak to their own G.P. and be referred to their local neurosurgical hospital. 2

3 Diagnosing a Subarachnoid Haemorrhage This is usually made by the history, CT scan and occasionally lumbar puncture. If the test appears positive, you will be referred to the Walton Centre for further investigation and treatment if necessary. You may then undergo a Computerised Tomography Angiogram (CTA). This involves a scan after injection with contrast solution in the vein which allows the blood vessels within the brain to be seen clearly. If no aneurysms are seen a Digital Subtraction Angiography (DSA) may be advised. This is a test which involves the injection of dye through a catheter (tube) inserted into an artery in the groin and a series of x-ray pictures taken. This more clearly shows the blood vessels within the brain. Treatment options will be made on the results. Treatment The aim of your treatment is to prevent another bleed. Recovery from the pain and symptoms takes time as the blood from the haemorrhage is naturally re-absorbed. Once you have been diagnosed with a subarachnoid haemorrhage, you will be required to undergo bed rest and will be closely observed in the ward environment. Your family will need to bring toiletries and bed clothes plus cordial if you wish. Sunglasses may help if the light hurts your eyes. You will normally be required to have about 3 litres of fluid each day, either by drinking or by a drip into one of your veins. We will also have to measure your urine output. You will normally take a 21 day course of tablets called Nimodipine. These have to be taken 4 hourly and serve to help prevent complications due to the haemorrhage. You will be given regular pain relief and made comfortable. Sometimes people need to have a drain inserted to relieve fluid pressure on the brain. Rarely people may have seizures following a haemorrhage and might require medication. If an aneurysm is found to have caused the bleed then it may be treated by;- 1. Coil Embolisation. 2. Surgical clip. 3. Conservative management. The choice of treatment will be made by your consultant neurosurgeon along with the consultant interventional radiologist and multidisciplinary team. 3

4 Coil embolisation This is an endovascular treatment which means it is performed through a blood vessel. Under a general anaesthetic, a small catheter (tube) is inserted into an artery in your groin in the same way as an angiogram. The catheter is fed up to the aneurysm using x-ray screening. The coils are then deposited inside the aneurysm. The size, shape, and position of the aneurysm will determine which type and how many coils are used. The aim is to pack the aneurysm with coils so that blood is not able to enter it and allow the aneurysm to seal over. Stent assisted coil embolisation Sometimes, a Stent (artificial tube) is placed in the artery as well as coils to help seal off the aneurysm. This would depend on the type, shape and position of the aneurysm. Certain types of stents are used on their own. A stent is a tube placed inside the artery. Other treatments used to seal aneurysms This area of medicine is continually improving and new devices may be used as they are more suitable and efficient depending on each individual case. 4

5 Web Device Surgical treatment by clipping This involves placing a small metal clip around the base of the aneurysm to seal it off and so prevent further bleeding. The operation is done under general anaesthetic and carried out by a neurosurgeon. Part of the hair may be shaved. A cut will be made in the skin and bone to allow access to the brain and the aneurysm. The bone will be replaced after surgery and the skin stitched or clipped up. Conservative management Depending on your current health, the position and size of the aneurysm and the risks of treatment versus the benefits, it may be decided to manage the aneurysm conservatively. This means that symptoms will be treated the aneurysm will be monitored. After treatment After your aneurysm is treated, you will often spend the first night or two in the critical care unit (HDU / ICU) on the ground floor. Depending on how you are and what treatment plan has been ordered by your consultant, your stay in critical care may be longer than 24 hours. You will be reviewed daily until you are ready to go back to the wards. Once the team at the Walton centre are happy that you no longer need specialist facilities, you will either go home or to another hospital for local rehabilitation. You won t go home until the team, including physiotherapists, occupational therapists and 5

6 speech therapists are happy it is safe for you to do so. They may plan further input as an outpatient closer to home if needed. Follow up Your follow up will be at the Walton Centre or another neurosurgical unit if that is closer to where you live. You will normally be seen 2-3 months after going home for review. If an aneurysm has been treated by endovascular means (for example with coils) you will normally have follow up by MR scanning although some devices require an angiogram. The MR scans are generally at 6, 18 and 60 months afterwards although this can change according to individual circumstances. If an aneurysm is clipped and you are well with no other aneurysms then you are usually only seen once to check on your progress and answer any questions you may have. This can also change according to individual circumstances. Rare Complications after SAH Please note that these complications are RARE! Hydrocephalus Hydrocephalus is a condition where there is a build-up of cerebrospinal fluid (CSF) in and around the brain and spinal cord. This happens because it may not be able to drain away after the haemorrhage. Symptoms include a build-up of headaches, problems with balance and possibly worsening vision and memory/concentration (more obvious than when you left hospital). These symptoms must not be ignored. If they are getting worse you must go to your nearest accident and emergency department for a scan. Hydrocephalus can be treated by a shunt (drainage tube) into the CSF. If you have a shunt you should have information on it. Support and information on shunts is available. You cannot drive for 6 months if you have had a drain or shunt inserted. Stroke like symptoms This can occur in any part of the body but is usually confined to one part or the whole side of the body following a subarachnoid haemorrhage. This can range from a slight weakness to a complete lack of ability to move. It may be permanent or get better. If you get any of these symptoms once you go home, you should go to your nearest accident and emergency department immediately. Epilepsy or fits Rarely people who have had a subarachnoid haemorrhage develop epilepsy causing fits or seizures and the small risk is usually in the first year after subarachnoid haemorrhage. One fit doesn't mean you have epilepsy. Epilepsy is treated with medication. You will normally be reviewed by a neurologist to ensure appropriate management. If you have had seizures you have to inform the DVLA and cannot drive until advised. 6

7 Going home Medication: Nimodipine You will normally be required to complete a 21 day course of Nimodipine at home if it wasn t completed in hospital. This is just one 21 day course no more! It is used to reduce the risk of developing complications with vasospasm (a process where the blood vessels close after a brain haemorrhage). This risk has passed by 21 days and so the course doesn t have to be continued. The tablets need to be taken regularly every 4 hours. Side effects of Nimodipine are low blood pressure, flushing, changes in heart rate, headache, feeling sick and feeling too warm. Please read the leaflet accompanying the medicines given to you to take home from hospital. Don t take alcohol or grapefruit juice whilst taking Nimodipine. If these side effects occur, seek medical advice. You should get your blood pressure checked once the course has finished as your GP will need to make sure it is well controlled. Aspirin: You may go home with a course of Aspirin but only if you have had your aneurysm coiled. Aspirin can sometimes worsen indigestion or heart burn, and may make breathing worse in those with asthma. Occasionally, it can cause bleeding or skin reactions. If these side effects occur seek medical advice. Clopidogrel: Clopidogrel is sometimes prescribed to prevent complications of a coiling procedure. It can cause stomach upset and bleeding problems. If you get excessive bruising or bleeding please contact your G.P. and contact us for further advice. You may need a blood sample taken to check on your blood clotting if this happens. Pain Relief: You may go home with pain relief. You should take these regularly to begin with if you need them. They should be cut down as soon as you are able to after the first few weeks as taking them for too long may make headaches worse not better! Certain types of pain killers can cause constipation so please take the laxatives if they are given to you and eat a diet that is high in fibre and don't get dehydrated! Recovery Sight Problems with vision such as blurring, blind spots, black spots and double vision can occur following a brain haemorrhage. If this occurs, you should tell your doctor or specialist nurse so that your vision can be checked. If you do experience double vision, you may find it more comfortable to wear an eye patch over one eye. However, for the majority vision settles down after 6-8 weeks. 7

8 Communication Problems The processes in the brain that control communication (i.e. speaking, listening and understanding) may be disturbed following a brain haemorrhage. If this happens, and is problematic, you will normally be referred for speech therapy. Sometimes, but not always, your speech and ability to understand improve with time. Memory It is not unusual to be left with poorer memory following a brain haemorrhage. Your memories before the haemorrhage will be less likely to be affected. This may improve with time but recovery can be frustrating as often your memory and concentration aren t as good as before. Try breaking down tasks into smaller steps and using a notice board or notebook to help you. Keeping your home organised and making lists helps. If this problem is affecting your day to day life, you may need to be referred for rehabilitation as an outpatient. Personality Change Anything going wrong in the brain can cause a change in character or personality. This is especially so with certain aneurysms because of their position. Character changes often settle down or are adapted to with time. If they are on-going and troublesome, you should be referred to a psychologist for an assessment and treatment plan to help you cope. Because recovery from any brain injury can take up to 1-2 years, this will not normally be done until you have been given time to recover (usually about 3-6 months after). Extreme tiredness You will probably need rest once you get home particularly if you are having a lot of visitors or your house is very busy. Even simple tasks such as a walk to the local shop may leave you feeling exhausted. This will improve with time but may not go completely. You will know if you have done too much as you will be exhausted and may experience headaches. This often happens early evening or the next day and means you have to rest! Headaches Headaches are common after a subarachnoid haemorrhage. They usually ease with time. You should take simple medication for them such as paracetamol. Headaches can be triggered by dehydration, stress, too much or too little sleep and missing meals. Drinking 2 litres of water a day should help reduce the frequency and severity. Try and get back to a normal sleep pattern as soon as possible. Try putting some structure into your day, including meal times as this will help with headaches as well as recovery. Stopping smoking and reducing the amount of caffeine you take may help reduce the severity of headaches. Headaches can be persistent after a brain haemorrhage. They are often worse if you have done too much that day or the day before. If they persist despite you doing the above measures then you may need help from your G.P. or a headache specialist 8

9 Pacing You must pace your activity for the first 4 weeks following going home. Take a daily rest as well as some gentle exercise. Build up activity as you feel able and try to go outside for regular walks if you are able, otherwise you may lose your confidence. Exercise can be built up gently but we don't advise extreme exercise until after your 6 month follow up scan has been reviewed. Unusual sensations Some people experience unusual or strange sensations in their head following a brain haemorrhage. We are not sure why this occurs, but do not worry about them and they should ease with time. Fear of rebleed This is a very common fear for all patients, especially those who have had a coil occlusion. Unfortunately the risk is real but it is very small. However, because the aneurysm cannot be taken away, it is important to learning a coping strategy as this fear may prevent your recovery progressing. Remember, you will be followed up and scanned regularly once you have gone home. You will only be discharged from the Walton Centre when we think it safe to do so. Sensitivity to noise This is not uncommon following a brain haemorrhage. Everyday noise such as television or background conversations can be just as difficult to cope with as loud noises. This usually settles down with time as you recover. Recovery is dependent on how you feel. You will need to pace activities for the first month or more after going home because of tiredness and headaches. Feelings of anger, frustration and sadness are not uncommon following a brain haemorrhage. This may be due to the condition but could just as well be due to the sudden life changing event and so will pass. If you are affected, you should talk to your GP. You may need to be referred to a psychologist in order that you are able to manage. Enlisting the support of the Brain Haemorrhage Support group affiliated to the Walton Centre may help in that they can offer emotional support and recovery advice. However, not everyone is affected this way; some see this as a new beginning; a time to reevaluate their life following the trauma. Using a diary from when you are in hospital and for the following weeks or months can be very useful. By charting good and bad days, you will be able to mark your progress; this will help a lot when you have bad days and will mark how far you have come with recovery. Everyday Activities Driving Following a subarachnoid haemorrhage, if you hold a driving licence, you are legally required to notify the Driver and Vehicle Licensing Agency (DVLA). You will not be able to drive until you have received DVLA approval and your doctor has confirmed you are recovered. If you drive without telling the DVLA, then your insurance becomes invalid. 9

10 Flying If you have had a coil occlusion of your aneurysm, you should be able to fly as soon as you feel able. However, if you have had surgical treatment then current advice is to wait for 6 weeks unless your doctor advises you otherwise. It is safe to go through the metal detectors in the airport. They will not affect the coils or clips. Drinking Alcohol Don t drink alcohol until the 21 day course of Nimodipine is completed and you have reduced the number of pain killers you take. However, most people find they are not able to tolerate large amounts of alcohol following a brain haemorrhage. The government suggests that woman do not drink more than 2-3 units each day and men 3-4 units a day. Information websites on alcohol awareness is printed at the back of this booklet Smoking Cigarettes As cigarettes are one of the biggest risk factor in causing an aneurysm to rupture, it is advisable that you give up smoking completely. A free help line number is printed at the end of this booklet. Returning to work You can return to work as soon as you feel able from 6 weeks following your brain haemorrhage. However, most people need about 3 months, to recover. (Occasionally longer if there have been significant problems) It is advisable to go back to work on a phased return. This means you build up your working days and hours according to how you are feeling. A phased return is often graduated over 4 weeks or longer and your employer has an obligation to adhere to it. The working life service at The Brain Charity will help you if you are having problems with returning to work. The number is printed at the back of the booklet. Sexual Activity You can resume sexual activity as soon as you feel able. Starting a family It is advisable not to start a family for the first 6 months following your brain haemorrhage as it takes this time to recover. You will not normally be prevented from a normal delivery but this will depend on your obstetrician. You will not normally have MRI scans whilst you are pregnant. Please talk to us for further advice if you become pregnant. Sport and swimming As long as wounds have healed, there is no problem with swimming. However, it is advisable to go with somebody during the first year following your brain haemorrhage. Most other sports can be resumed once you have recovered. Exercise is encouraged as it improves stamina and wellbeing. However, you should build up your fitness slowly as soon as you feel able. Hair Washing If you have a head wound, this can be done after 48 hours. It may be more sensitive to fluctuations of temperature. Always test the water temperature before washing. If your aneurysm has been coiled then you can wash it as soon as you feel up to it. 10

11 Reassurance about coils Coils are fixed in place. They are not affected by airport security scanners, microwave ovens, magnets nor mobile phones. Hair Dyeing You can dye your hair once the wound has healed completely if you have had surgery. The skin around the surgical site may be more sensitive for some time afterwards. You can dye your hair as soon as you feel up to it if your aneurysm has been coiled. Dental Treatment:- Dental treatment is safe after SAH. If you have had surgery you may find you have a pain in your jaw for the first few weeks when opening your mouth or chewing and may benefit from postponing it until you feel more comfortable. If you have had an aneurysm coiled and treatment isn t urgent you should wait until the aspirin finishes or consult your dentist and contact us for further advice. Family and friends Enlist the support of your family and friends whilst you recover. They will be a great help with shopping, transport and support if you feel down. Family and friends support is helpful during the first 4 weeks after you go home and will be the biggest influence in your successful recovery. Where can I meet other people who are going through similar experiences? There are details of the brain haemorrhage support group, and other links you may find useful in contact details at the back of this booklet. Will I be entitled to any benefits? You may 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 a charitable agency such as Citizens Advice Bureau, Welfare Rights or The Brain Charity to discuss individual circumstances and what you are entitled to. 11

12 Going home information Name... Consultant... Date of Sub-Arachnoid Haemorrhage.. Date and type of treatment... Follow up advice: Appointments: 12

13 Useful Contact details NHS 111: 111 Telephone advice if you need urgent medical help fast but it is not a 999 emergency (or you do not have a GP) Website: and search emergency and urgent care D.V.L.A. (Driver Vehicle Licensing Authority): 1 Sandringham Park, Ground Floor East, Swansea Vale, Llansamlet, SA6 8AJ Medical Enquiries: (phone calls may cost more than local/national rate) Brain Haemorrhage Support Group affiliated to Walton centre: bhsupport@live.co.uk Facebook or via Brain Charity The Brain Charity: Department of Work and Pensions: NHS Free smoking helpline: NHS alcohol help: Brain and Spine foundation: Produced by: C Stoneley. Neurovascular ANP Reviewed: April 2017 Review Date: April