Subarachnoid hemorrhage (SAH)

Causes

Aneurysm

Perimesencephalic hemorrhage

Unknown cause

Admission to hospital

It is essential that you get emergency care after subarachnoid hemorrhage and get to a hospital where the aneurysm can be treated as soon as possible. You can die or suffer serious injury from the disorder. There is a significant chance of a new hemorrhage. Once the aneurysm that has burst has been found, the doctor will try to treat it as soon as possible. Accumulation of cerebrospinal fluid can also be a life-threatening problem. In that case you will be given a shunt in the ventricle of the brain so that the fluid can be drained. The first few weeks after the hemorrhage can be erratic due to regular complications, such as circulatory problems in the brain, metabolic disruption, or infections.

• Tests and diagnosis

  If you are admitted to hospital because the doctor thinks you have a brain hemorrhage, a CT (Computer Tomography) scan of the brain is taken first. X-rays are used to make a cross-section of your head. The doctor can see what kind of brain hemorrhage you have had. The blood vessels can be clearly visible with a CT scan by injecting contrast fluid through the vein in your arm (CT angiography). This way, any bulging of a brain artery can be detected.
  If the CT scan does not show any bleeding, you will be given a spinal tap (lumbar puncture) 24 hours after the symptoms have started. This spinal tap removes cerebrospinal fluid. The cerebrospinal fluid tells the doctor if there has been subarachnoid hemorrhage.

• Intensive Care or Medium Care

  You will be admitted to the Intensive Care, Medium Care, or Stroke Unit if accurate monitoring and support of important bodily functions is necessary. Examples are respiration, blood pressure support, observation of the pressure in your head, or the heart rhythm. If your situation allows for it and you do not need continuous monitoring or support for bodily functions, you will be transferred to the nursing ward.

• Nursing ward

  If the situation permits, you will be admitted to the nursing ward. You will typically stay in a single room. You will be checked regularly and your bodily functions will be monitored. We offer as much peace and safety as possible. As your situation becomes less pressing, the medical team at the nursing ward will map out the problems that remain after the hemorrhage, and speak with you and your loved ones about how and where you can best recover from the bleeding.
   
  You will be cared for and observed by a specially trained nurse. This nurse is responsible for observation and care, and for the coordination of care.
   
  A doctor is available 24 hours a day for the medical treatment, under the supervision of a medical specialist from the department. The medical specialist and the doctor in the department are in contact on a daily basis to discuss your treatment and policy. Every morning the doctor will visit you during visitation rounds in the ward and they will check with you and the nurse regarding your treatment progress. You will hear the results of the tests during the visit. If new tests are planned, the nurse will give you verbal and written information. If needed, an additional meeting with the doctor can be planned.

• Treatment team

  The consequences of the SAH may be different. There may be hemiplegia (paralysis on one side), difficulties with swallowing and speech, and cognitive issues (difficulty thinking). That is why you will meet therapists in the various departments who will identify and treat the effects of the SAH on your general function.
  The treatment team consists of several professionals. They consult with each other. The goal is for you to receive guidance and information from the same people as much as possible during the admission.
   
  The treatment team consists of:

  • Treating neurosurgeon/neuro-intervention specialist: the doctor performing the treatment.
  • Departmental physician: present at the IC, MC, or nursing ward from Monday to Friday from 9:00 am to 5:00 pm. They responsible for the implementation and continuity of daily medical care. A doctor is available 24 hours a day in the nursing ward.
  • Intensivist: the doctor who treats you in Intensive Care. This doctor is available 24 hours a day.
  • Nurse: responsible for the coordination of care, monitors you, assists you in your daily care, administers medication, and carries out actions on behalf of the doctor.
  • Nursing specialist: monitors continuity, helps you think about your recovery process, is your contact person, and performs outpatient check-ups. During these check-ups, they will map out your complaints, discuss the influence of the complaints on your daily activities and, if necessary, refer you to the correct professional.
  • Rehabilitation doctor: coordinates the care of co-treating therapists such as those who assist with speech therapy, physiotherapy, and occupational therapy, and advises you on your recovery process.
  • Physiotherapist: treats problems regarding movement, breathing, coughing, or recovery.
  • Speech therapist: treats problems with swallowing or speaking. You will also be treated by the speech therapist if you have a breathing tube (trachea cannula).
  • Occupational therapist: identifies problems in daily function and can, if necessary, provide adaptive aids (e.g. wheelchair).
  • Dietician: gives advice in the event of problems with nutrition or the nutritional situation.
  • Social worker: provides support when there are social or societal problems, such as problems caused by legal incapacity or possible financial consequences of the disorder.
  • Pastoral care staff: can support you and your loved ones in matters regarding spiritual and philosophical meaning.
  • Transferpunt Zorg: the healthcare referral center, which arranges home care, care aids, or accommodation in a nursing home after hospitalization.

• Safety

  Subarachnoid hemorrhage can cause confusion and restlessness, which can lead to unsafe situations. To ensure your safety, it is sometimes necessary to use wrist, ankle, and abdominal straps made of fabric. These measures are generally not considered to be pleasant. If these measures are necessary, we will discuss them with you and your contact person.

• Medication

  After a subarachnoid hemorrhage, all patients receive a number of medications such as painkillers, medication that improves the blood circulation in the brain, and medication to promote bowel movement. Home medication such as blood thinners and antihypertensives (blood pressure medications) are usually stopped. You can continue to use other medication.

Treatment

Subarachnoid hemorrhage from an aneurysm is, in principle, treated at short notice to prevent new bleeding from the aneurysm.
In some cases, the risk of complications from treatment is greater than a new hemorrhage. For example, the cause of the hemorrhage may be difficult to treat. The neurosurgeon will discuss the treatment plan and the considerations with your contact person.
 
Read more about the treatment of a brain aneurysm. Not all treatments are suitable for the acute treatment of an aneurysm.

• Via the artery

  The procedure of all treatments via the artery is conducted in the same way as the examination via the artery, the angiography. During the treatment you are under anesthesia because you have to lie still for a long time.

  Coil

  A coil is a wire made of platinum that curls up like a coil into the aneurysm. Through a tube in the inguinal artery, a catheter is brought up to the aneurysm and filled with coils until no more blood enters the aneurysm.

  

  Stent

  A stent is a kind of mesh tube. The tube is pushed through the inguinal catheter into the right place for the neck of the aneurysm, after which the aneurysm can be filled with coils. Treatment by means of a stent is usually done in the case of an aneurysm that has not burst or a wide-necked aneurysm.

  Flow Diverter

  A flow diverter is a finely meshed tube that ensures that the blood does not flow into the aneurysm, instead remaining in the blood vessel. When there is no more blood flowing through the aneurysm, a blood clot forms in the aneurysm after which it shrinks. The flow diverter is slid into place in front of the neck of the aneurysm just like a stent, usually in the case of aneurysms that have yet to burst.
  

  WEB device

  A Woven EndoBridge, or WEB device, is a finely meshed, cube-shaped net that is inserted into the aneurysm via the tube, after which it is unfolded and closes the entire aneurysm at once.
  

  E-clips

  An e-clip is a kind of half sleeve which, like a stent, covers the neck of the aneurysm. An e-clip is specifically intended for aneurysms that have not burst, located at a major arterial junction. After the e-clip has been pushed into place, the aneurysm can be filled with coils.

  Closing the vessel

  In some cases, it is only possible to treat the aneurysm by closing off the entire artery. This is done by means of adhesive or coils.

• Surgery

  Clip

  The doctor makes an opening in your skull. The aneurysm is approached between the lobes of the brain. A titanium clip is placed on the neck of the aneurysm so that no more blood goes to the bulge. This is called clipping.
   
  

  By-pass

  The doctor makes an opening in your skull. An artery is placed around the aneurysm as a bypass so that the blood pressure towards the aneurysm decreases and the aneurysm becomes smaller. This treatment is occasionally used in the case of a complicated aneurysm and can only be conducted after proper preparation.
  
   

Complications

• New hemorrhage

  The chance of a new hemorrhage is greatest in the first few hours after a subarachnoid hemorrhage. If the aneurysm is not treated, the risk remains higher in the first weeks after the hemorrhage. A new hemorrhage results in acute deterioration, no or uneven response of the pupils, or decrease in consciousness.

• Circulatory disorder

  Between 3 and 14 days after a subarachnoid hemorrhage, there is a chance that there will be a problem with blood flow in the brain tissue. This is also called delayed cerebral ischemia (DCI). It is not entirely clear why this happens. Doctors think that DCI is caused by an inflammatory reaction of the brain to the presence of the blood. The capillaries in part(s) of the brain become less or not accessible to blood. The symptoms are varied. There may be a loss of certain neurological functions or a loss of consciousness, or confusion may occur. This may spontaneously resolve itself. If it persists for a long time, it can cause irreparable damage and even death because part of the brain has been supplied with too little blood for too long. This means that a cerebral infarction has occurred.
  After a subarachnoid hemorrhage you will be given medication to prevent DCI (Nimotop). This does not always work sufficiently. If a DCI occurs, you will be admitted to Intensive Care or Medium Care to artificially increase the blood pressure through the supply of additional fluid. If this does not have a sufficient effect, blood pressure is increased using medication via the IV. To do this, an IV must be inserted into a large blood vessel.
  Another cause of a circulatory disorder is the release of a clot or calcification during treatment. This can also cause a cerebral infarction. It is also possible that during the treatment or as a response to the hemorrhage, the large brain arteries contract (vasospasm), resulting in a reduced blood flow to the brain and a cerebral infarction.

• Water on the brain (hydrocephalus)

  Water on the brain is the accumulation of cerebrospinal fluid in the ventricles of the brain, also known as hydrocephalus. Hydrocephalus can develop acutely if the bleeding causes the passage between the ventricles of the brain to be closed and the cerebrospinal fluid can no longer escape. It can also develop gradually when the relatively large blood cells stop the drainage of the water-thin cerebrospinal fluid.
  The "drain" then becomes clogged, which causes the pressure in the brain to increase. Due to the high pressure in the brain, the patient increasingly loses their mental faculties. There may be a downward pressure in the eyes or narrow and non-responsive pupils. Usually there is an increase in headache, nausea, and vomiting.
  The treatment of hydrocephalus consists of the insertion of a drain into the brain ventricles that leads outside the body (External Ventricular Drain or EVD). If the hydrocephalus gradually develops later, the brain pressure can be measured by means of a spinal tap and the doctor can drain the fluid to reduce the pressure. The doctor can also leave a drain in so that the fluid can continue to drain (External Lumbar Drain or ELD). It is also possible to see a hydrocephalus on a CT scan, in which case the ventricles of the brain are "inflated".
   
  In that case, cerebrospinal fluid drainage is required. You can read more about this under the heading Cerebrospinal Fluid Drainage.

• Cerebrospinal fluid drainage

  The brain and spinal cord are surrounded by cerebrospinal fluid (liquor). Cerebrospinal fluid has several important functions, specifically:

  • Protection of the brain. The brain is surrounded by the cerebrospinal fluid and can therefore not come into contact with the skull. The cerebrospinal fluid also protects us against the absorption of toxic substances into the blood.
  • Passing information from the brain to other cells in our body.

  Cerebrospinal fluid looks like water and is produced in the cavities of the brain, which are called the ventricles. There are two side ventricles (lateral), a third ventricle in the center of the brain, and a fourth ventricle at the bottom of the cerebellum. Cerebrospinal fluid is continuously created and absorbed. On average, cerebrospinal fluid is completely renewed about 3 to 4 times a day.

  Why a shunt?

  If the circulation of the cerebrospinal fluid does not run smoothly, the fluid will accumulate in the brain. Accumulation of cerebrospinal fluid increases the pressure in the brain. This can disrupt the function of the brain and damage it. When cerebrospinal fluid accumulates, we have to do something to limit the damage as much as possible.

  Treatment External

  Ventricular drain
  An external ventricular drain (EVD) is a thin tube (drain) that is surgically placed through your skull into the ventricle. During surgery, the doctor makes a small incision in the skin. An incision is made in the cranium with a diameter of about 1 cm. A piece of the drainage tube is then inserted into the ventricle of the brain. After that, the skin is closed and the drainage tube is secured by means of a suture or bandage.
  The collection system of the drain hose is attached to your bed, which means you must remain in bed. The doctor determines where the collection system will be attached.
   
  Ventriculoperitoneal shunt (VP shunt)
  If the absorption of the cerebrospinal fluid is a long-term problem, a ventriculoperitoneal shunt (VP shunt) is an option. This shunt helps drain the cerebrospinal fluid. The shunt is a tube that the doctor inserts into the ventricle of the brain. From here the shunt runs internally to your abdomen. The shunt has a pressure control valve. This valve is located under the scalp and can be felt above the right ear. It ensures that cerebrospinal fluid is discharged to the abdomen via the shunt if the pressure in the head becomes too high. When the pressure in your head has returned to normal, the drainage of cerebrospinal fluid stops. The placement of this shunt is done during an operation. It is a fairly simple procedure. The doctor drills a hole into the right side of the skull. Through this hole the doctor inserts the shunt into the cerebral chamber and passes it subcutaneously through to the abdominal cavity. The operation takes about an hour. 

  Complications
  There is a risk of complication with every surgical procedure. The most common complication with a VP shunt is an infection, or insufficient function of the shunt. The doctor will discuss the possible complications of this operation with you.

  External lumbar drain
  If the accumulation of fluid causes problems a few days after the bleeding, an external lumbar drain (ELD) will be considered. An ELD is a thin tube (drain) that is placed through your skin in the lower part of your back. The drain is placed by making a puncture with a thin needle. During the puncture, you must move into a special position, lying or sitting, in which your back is as curved as possible. This is to make the space between the vertebrae as large as possible. The doctor and nurse will accompany and support you in taking this position. The collection system of the drain tube is attached to your bed, so you have to remain in bed. The doctor determines where the collection system will be attached. 

  Drain challenge closure of the EVD/ELD

  If you have an EVD/ELD, there will come a time when the EVD/ELD can be removed. To test if your body can handle this, the EVD/ELD is closed for 24 hours. This is what we call the drain challenge. In these 24 hours, your consciousness and your vital functions, such as your breathing, pulse rate, temperature, and blood pressure are checked every 2 hours.
   
  Pressure measurement
  If your consciousness and your vital functions remain good, a pressure measurement will be taken the next morning. During the pressure measurement, your brain pressure is measured to assess whether your body is draining the fluid (liquor) in the correct way. If this measurement is good, a decision will be made, in consultation with your attending physician, as to whether the EVD/ELD can be removed.
   
  Increasing brain pressure
  During the 24 hours that the EVD/ELD is closed, brain pressure may increase. This makes you woozy, causes more headaches, and can make you nauseous. If your brain pressure increases, the EVD/ELD will be reopened in consultation with your attending physician
   

• Metabolism disorder

  After a subarachnoid hemorrhage, various metabolic disturbances may occur temporarily. Disturbed potassium, sodium, magnesium, or glucose levels regularly occur in the blood. Excessive urine can also be produced, sometimes additional salt is excreted through the urine. We check the sodium content of your blood daily and give you additional salt or fluid if necessary.

• Delirium

  Delirium often occurs after a brain hemorrhage. It is a state of confusion that is accompanied by hallucinations or unrealistic ideas, often with anxiety and fear, but sometimes with apathetic and silent behavior. Characteristic symptoms of delirium are alternating levels of consciousness and worsening of the symptoms during the course of the evening and night. Delirium after a cerebral hemorrhage can be caused by the bleeding, an infection, or disruption to metabolism.

• Infections and fever

  If the cerebrospinal fluid is drained through an external shunt, there is a risk of bacterial meningitis. A urinary catheter also causes rapid urinary tract infections and lying on the bed for long periods of time on the ventilator causes the risk of a lung infection. With a longer hospital stay, resistance is lowered and the risk of infection increases. If there are signs of an infection, such as fever or increased inflammation in the blood, then cultures are taken to determine the cause of the infection and to identify the bacteria so that the doctor can treat you with the right antibiotics. This is done in consultation with the medical microbiologist.
  Fever after an SAH also occurs frequently without bacteria being the cause. It occurs because the regulation of body temperature in the brain is disturbed.

• Heart and pulmonary problems

  After a subarachnoid hemorrhage, various cardiac dysrhythmias occur on a regular basis; this usually resolves itself. In a small proportion of cases, subarachnoid hemorrhage is the cause of a cardiac arrest for which the patient is initially taken to the emergency room. In some cases, partial paralysis of the heart muscle can occur, called Takotsubo syndrome. This usually resolves itself after a few weeks.
  A heart that has already had some difficulty in maintaining its pumping function may, after subarachnoid hemorrhage, find it difficult to cope with the additional amount of fluid being administered. This can cause heart failure. This, or the bleeding, can cause fluid to accumulate in the lungs, making it more difficult to breathe or get rid of artificial respiration.

  Lying still in bed can cause of thrombosis. If this dislodges, a blood clot can end up in the lungs. This causes acute deterioration and shortness of breath.
  In order to avoid the above problems, bed rest precautions are taken: such as pneumatic stockings, cycling in bed, bed mobility, or sitting in a chair as soon as possible.

Life after an SAH

You may continue to have complaints that are not obvious to others. Common examples of this are physical and mental fatigue, problems with processing stimuli, concentration problems, forgetfulness, and headaches. This can be quite a constraint on resuming your daily life again.
 

• Daily activities

  After a subarachnoid hemorrhage and the treatment of a brain aneurysm, there are no special restrictions or everyday rules. Questions often arise about heavy physical labor, pushing, flying, visiting a sauna, roller coaster, or sexual activity. There is no scientific evidence that these activities increase the risk of a new hemorrhage. However, existing complaints may very well increase as a result of these activities. The advice is that all activities can be resumed as long as this is possible without issue.

• Common symptoms

  Subarachnoid hemorrhage has a major impact on your daily life, not only for you but also for your partner and family members. You may not be able to remember a period of time during your admission once you have been discharged. The majority of people continue to suffer from issues after the hemorrhage. The most common symptoms in the six months after the subarachnoid hemorrhage are: 

  • fatigue
  • headache or pressure on the head
  • changes in mood (anxiety, rapid anger, depression, stress)
  • memory problems
  • problems with concentration 
  • acting and thinking more slowly
  • reduced or absent sense of taste and smell
  • poorer hearing
  • poorer vision

  It is important that you receive guidance from professionals for these symptoms and their consequences for you and your environment.
  Aftercare is organized differently for each treatment center in the Netherlands.
   

• Lifestyle advice

  Smoking

  Smoking is one of the main risks of a brain aneurysm and subarachnoid hemorrhage. If you continue to smoke after subarachnoid hemorrhage, it is known that the chance of a new hemorrhage is up to 3 times higher in the remaining years of life. In the presence of psychological symptoms, such as depression, stress or anxiety, it can be even more difficult to stop smoking or to continue not smoking. It is important that you seek professional guidance from your general practitioner or nurse practitioner if you find it difficult to stop smoking. It is also known that the chance of success in quitting smoking is many times greater if family members stop smoking out of solidarity and for their own health as well.

  Blood pressure

  Another significant risk factor for developing a subarachnoid hemorrhage is high blood pressure. Have your blood pressure checked regularly by your general practitioner and treated with medication if it is too high. Symptoms of high blood pressure may include headaches, palpitations, or tinnitus. It may also be discovered by chance. High blood pressure is more common in people who are stressed, overweight, who smoke, eat a lot of salty food, or are experiencing a stressful situation in the family. It also occurs with kidney problems.
   
  In addition to medication, it is important to change your lifestyle. Consult your general practitioner or nurse practitioner for advice and guidance on these lifestyle changes.
   

• Pregnancy

  There are no recommendations restricting pregnancy after subarachnoid hemorrhage.

• Driving

  After a subarachnoid hemorrhage, a 6-month suspension of driving is required. If, after this period, there are any residual symptoms that affect driving ability, a specialized report from your specialist is required. On the basis of this report, the Dutch central driver licensing office (CBR) can decide whether an additional independent medical examination or a driving test is required. Your medical specialist will write the specialized report in addition to the health certificate issued by the CBR.
   

Discharge from hospital

In the course of admission to the nursing ward, the neurosurgeon's medical treatment gradually tapers off. Your stay will be more about rehabilitation.
During recovery, your medical team will advise you on the best place to recover after hospitalization.
Discharge to home
If daily function can be resumed independently and safely, you can go home after your discharge. Your family or friends can pick you up at the agreed upon time. For example, if you still need therapy at home, you will be referred to a practice for physiotherapy or occupational therapy. If you need care, the nurse will fill out a request for home care. An expert from the Centrum Indicatiestelling Zorg (Care Assessment Centre - CIZ) will, after consultation with you, give you advice on the care you need at home.
 

• Rehabilitation

  Rehabilitation at a rehabilitation center

  For rehabilitation in a rehabilitation center (Medical Specialist Rehabilitation) there must be sufficient capacity and the prospect of a future discharge to the home. If you are chosen for this, the rehabilitation doctor will register you for this type of rehabilitation. After completion of the neurosurgical treatment, you may be transferred to the regional hospital where you were initially cared for during the waiting period for the time being.

  Rehabilitation in a nursing home

  If your strength is so limited that you still need a lot of rest between therapy sessions and there is a prospect of a future discharge to the home, you can opt for the Geriatrische Revalidatie Zorg (Geriatric Rehabilitation Care, GRZ) at a nursing home. After completion of the neurosurgical treatment, you may be transferred to the regional hospital where you were initially cared for during the waiting period. The Transferpunt Zorg (healthcare referral center) assists in choosing from the nursing homes where GRZ is possible, and takes care of the registration.

  Long-term rehabilitation in a nursing home

   If there is still a lot of support needed for daily activities and it is uncertain whether discharge to the home is still possible, a long-term stay with rehabilitation at a nursing home is an option (care indication 9b). The patient will have a longer period of time to recover and, if possible, discharge to the home is an option. After completion of the neurosurgical treatment, you may be transferred to the regional hospital where you were initially cared for during the waiting period. The Transferpunt Zorg (healthcare referral center) assists in choosing from the nursing homes where it is possible to stay for care indication 9b. 

  Vroege Intensieve Neurorevalidatie (Early Intensive Neurorehabilitation - VIN)

  VIN is an intensive rehabilitation program for patients who have suffered serious brain damage and are therefore in a state of impaired consciousness. The VIN program can make a significant contribution to the restoration of consciousness. There are only a few centers in the Netherlands where this program is employed. In the south of the Netherlands this is Libranet, the Leijpark location in Tilburg. The care indication is determined by the rehabilitation physicians of the institution.

  Long-term stay in a nursing home

  If self-care is largely taken over and your doctors expect that you will not recover sufficiently to return home, you may be admitted to a nursing home for a long period of time. This is rare in younger patients with a brain hemorrhage. After completion of the neurosurgical treatment, you may be transferred to the regional hospital where you were initially cared for during the waiting period. The Transferpunt Zorg (healthcare referral center) assists in choosing from the nursing homes where a long-term stay is possible.
   

• Transfer and transport

  If you are discharged and you do not need nursing care during the transport, your loved ones may pick you up from the nursing ward.
  If you are transferred to another institution and need nursing care during your trip, the nurse in the department will arrange for you to be transported by ambulance.
  The nurse gives the medical and nurse transfer to the ambulance attendant. Your general practitioner will receive a letter stating what treatment you have had.
   

Rehabilitation aimed at improving complaints and limitations

Rehabilitation at a later stage

Aftercare

Survivor stories Anita

1 When did you find out you had an SAH (brain hemorrhage)?

Five years ago, after a visit to the general practitioner, I ended up at the ER in Arnhem, to my great surprise. There, a SAH due to a burst aneurysm was detected. I was transferred for treatment. I had a terrible headache for 10 days, I was nauseous, and I had to vomit. All of this occurred suddenly and severely. I also had a strange feeling in my arms and legs. I didn't see the seriousness of the situation back then. It wasn't until later that I realized that I was really suffering from something serious. In fact, I was actually very lucky, since I am able to tell this story.

2 How did the treatment go?

The next day the neurosurgeon came by to get acquainted and to explain what the next steps would be. The aneurysm had to be coiled. The calmness he radiated and the matter-of-fact, clear explanation, allowed me to face the operation confidently. After the operation I spent a night at the Medium Care and after a period in the nursing ward I could go home. Except for the fatigue, I felt good.

3 How do you look back on your recovery?

The recovery period was trial and error. I greatly underestimated the impact of the SAH. I am the type of person who is used to being busy with all kinds of things all day long. That was no longer possible. I had to deal with a lot of fatigue and irritability. Talking was exhausting; I was yawning and sometimes nauseous. I also got frustrated because I couldn't do everything at the pace I wanted and was used to.
I told my story to the nurse specialist and heard that most people after a SAH have complaints like this. It was nice to hear that there was getting stronger and she gave me tips on how to proceed. I'm still reaching my limits every now and then. Afterwards, I can usually point out the cause of this. In recent years, I have learned that I can do anything I want, as long as I pace myself. But pacing is still the hardest part for me. I am always open about what's happened to me and the consequences of it. This is because, at first sight, my limitations are not obvious. By being open about it, people understand me and can take it into account. We regularly make jokes about it. That keeps things light.

4 What do your check-ups look like?

At the moment I am still being monitored: I undergo an annual MRI scan to check if there is any development in the aneurysm. I don't think that's a problem and I don't find it nerve-racking any more. At my own request, I have been receiving the results over the past few years by telephone. If I want a consultation with the doctor, this is also possible.

5 How did you experience the care?

Five years ago, I was taken care of very well by the nurse. She could tell what I needed and was understanding. I was comfortable in the nursing ward. Doctors, nurses, the nurse specialist, and the nutrition assistants I have dealt with were all professional, clear, friendly, involved, and reachable. I felt supported.