A subarachnoid hemorrhage (SAH) occurs very suddenly, without any form of warning. This hemorrhage derives its name from the location in the head: just above the brain, under the arachnoid mater. An AVM in this subarachnoid space can result in a SAH. You will be admitted urgently for the treatment of the consequences of the hemorrhage.
The blood that collects in the arachnoid mater around the brain can spread to the ventricles of the brain.
Symptoms include: acute severe headache, nausea, vomiting, neurological loss of function, stiff neck, epilepsy and reduced consciousness or loss of consciousness.
Admission to the hospital
It is vital that you receive emergency medical treatment after a subarachnoid hemorrhage and that you are taken as soon as possible to a hospital that can treat the aneurysm. You can die or suffer severe damage as a result of this condition. The risk of a new hemorrhage is high. Once we have found the aneurysm that has caused the hemorrhage, we will try to treat the aneurysm as soon as possible. The buildup of cerebrospinal fluid can also form a life-threatening problem. In that case, a drain will be inserted in the ventricle so that the fluid can drain off. The first weeks after the hemorrhage can be unpredictable as complications regularly occur, such as blood flow problems in the brain, metabolic disruption or infections.
If you are admitted to the hospital, because we think that you have suffered a cerebral hemorrhage, then we will first perform a CT scan (Computer Tomography) of the brain. X-rays are used to produce a cross-section of your head. This allows us to see what type of brain hemorrhage you have had. The blood vessels can be imaged clearly in a CT scan if we inject a contrast agent via the vein in your arm (CT angiogram). This allows us to detect an AVM.
If there is no hemorrhage visible on the CT scan, then we will perform a lumbar puncture 24 hours after the symptoms started. Cerebrospinal fluid will be collected via this lumbar puncture. We can look for signs of a subarachnoid hemorrhage in the cerebrospinal fluid.
You will be admitted to the Intensive Care Unit or the Medium Care Unit if close monitoring and support of your vital bodily functions is required. Examples include ventilation, blood pressure support, observation of the pressure in your head or your heart rhythm. You will be transferred to a nursing ward once your situation allows for this and you no longer require continuous monitoring or support of your bodily functions.
You will be admitted to the nursing ward if your situation allows for this. You will generally be given a private room. In addition to the regular monitoring of your bodily functions, we will try to give you the rest and safety that you need. As your situation stabilizes, the treatment team on the nursing ward will determine which problems still exist after the hemorrhage and will discuss with you and your loved ones how and where you can best recover from the hemorrhage.
You will be cared for and monitored by a specially trained nurse. In addition to the monitoring and care, the nurse will also be responsible for the coordination of your care.
A doctor is available 24 hours per day for the medical treatment, under the supervision of a medical specialist from the department. The medical specialist and the doctor on the ward will be in contact on a daily basis about your treatment and the plan of action. The attending physician will visit you during his/her ward rounds every morning and will discuss with you and the nurse how your treatment is progressing. You will be given results of examinations during these visits. If new examinations have been scheduled, then the nurse will give you verbal and written information. If necessary, an additional meeting can be scheduled with the doctor.
The consequences of the SAH can vary. You may be paralyzed on one side of the body, have difficulty swallowing and speaking or have problems relating to your ability to think (cognitive impairment). Therefore, you will meet therapists from different departments who can quantify and treat the effects of the SAH on your general functioning.
The treatment team consists of various professionals. They discuss cases with each other. We try to ensure that you will be guided by the same people as much as possible during the admission.
The treatment team consists of:
- Treating neurosurgeon/neuro-intervention specialist: doctor who will perform the treatment.
- Ward doctor (resident): present in the ICU, MCU or nursing ward from Monday to Friday from 9:00 am to 5:00 pm. He or she is responsible for the implementation and continuity of the daily medical care. A doctor is available on the nursing ward 24 hours per day.
- Intensive care specialist: the doctor treating you in the Intensive Care Unit. This doctor is present 24 hours per day.
- Nurse: is responsible for the coordination of your care, observing you, helping you with daily self-care, administering medication and performing procedures as instructed by the doctor.
- Nurse practitioner: Some treatment centers have a nurse practitioner available for your patient group. A nurse practitioner is allowed to carry out medical procedures independently within his or her specialization. He or she usually ensures the continuity of care and the follow-up care.
- Rehabilitation doctor: coordinates the care offered by fellow treating therapists such as speech therapy, physical therapy and occupational therapy and gives advice about your recovery.
- Physical therapist: treats problems relating to movement, breathing, coughing or to help you rebuild your stamina.
- Speech therapist: treats problems with swallowing or speech. You will also be treated by the speech therapist if you have a breathing tube (tracheal cannula).
- Occupational therapist: identifies problems in daily functioning and can provide aids if necessary (e.g. a wheelchair).
- Dietician: offers advice for problems with eating or the nutritional status.
- Social worker: offers support for social problems, such as problems that occur when someone becomes mentally incompetent or the possible financial consequences of the condition.
- Pastoral caregiver: can support you and your loved ones if you have questions regarding the meaning of life.
- Care Transfer Point: arranges home nursing care, aids or a stay in a nursing home after the hospital admission.
A subarachnoid hemorrhage can leave you feeling confused and agitated, which can result in unsafe situations. Sometimes it is necessary to use soft restraints on the wrists, ankles and waist to guarantee your safety and that of others. People generally find these measures unpleasant. If these measures are necessary, we will discuss this with your contact person.
All patients receive a standard number of medications following a subarachnoid hemorrhage, such as painkillers, medication to improve blood flow to the brain tissue and medication to promote regular bowel movements. Home medication such as anticoagulants and blood pressure medication are usually stopped. You can continue to use other medication as normal.
The brain and the spinal cord are surrounded by cerebrospinal fluid (liquor). The cerebrospinal fluid has various important functions, namely:
- Protecting the brain. The brain is surrounded by the cerebrospinal fluid and therefore cannot touch the skull. The cerebrospinal fluid also protects us against poisonous substances in the blood.
- Passing on information from the brain to other cells in our body.
Why insert a drain?If there is a problem with the circulation of the cerebrospinal fluid, then the fluid can accumulate in the brain. An accumulation of cerebrospinal fluid causes increased pressure in the brain. This can disrupt the functioning of the brain and cause brain damage. When cerebrospinal fluid accumulates in the brain, we need to do something to limit the damage as much as possible.
The treatmentExternal ventricle drain
An external ventricle drain (EVD) is a thin tube (drain) that is inserted surgically in the ventricle via your skull. During the surgery, the neurosurgeon makes a small incision in your skin. The neurosurgeon will make a hole measuring approximately 1 cm in diameter in the skull. A section of the drain tube is then inserted in the ventricle. The skin is then closed, and the drain tube is fixed in position by means of a suture or a plaster. The collection system for the drain will be attached to your bed and you will be on bed rest. The doctor will determine the level at which the collection system will be attached.
Ventriculo-Peritoneal drain (VP-drain)
If the absorption of cerebrospinal fluid is a problem for a longer period, then a Ventriculo-Peritoneal drain (VP-drain) is an option. This drain helps to remove the cerebrospinal fluid. The drain is a tube that the doctor inserts in the ventricle. The drain runs internally to your abdomen, where it is coiled up. The drain has a pressure relief valve. This valve is located under the scalp and can be felt above the right ear. It ensures that cerebrospinal fluid is removed via the drain to the abdomen if the pressure in the head becomes too high. The draining of cerebrospinal fluid will stop once the pressure in your head returns to normal. Surgery is required to insert this drain. It is a fairly simple procedure. The doctor will drill a hole on the right side of the skull. The doctor will insert the drain into the ventricle via this hole and push the tube under the skin towards the abdominal cavity. The operation will take approximately one hour.
There is a risk of complications with any surgical procedure. The most common complication with a VP drain is an infection, or the inadequate functioning of the drain. The neurosurgeon will discuss the potential complications of this surgery with you.
External lumbar drain
If the fluid accumulation causes problems several days after the hemorrhage, then an external lumbar drain (ELD) will be considered. An ELD is a thin tube (drain) that is inserted through your skin in the lowest part of your back. The drain will be inserted via a thin needle. You will have to assume a special position with your back rounded as far as possible (lying down or seated) for the needle to be inserted. This position makes the space between the vertebrae as big as possible. The doctor and nurse will guide and support you into this position. The collection system for the drain will be attached to your bed and you will be on bed rest. The doctor will determine the level at which the collection system will be attached.
Drain challenge closure of the EVD/ELDIf you have an EVD/ELD, at some point it will be possible to remove the EVD/ELD. The EVD/ELD will first be sealed for 24 hours to test whether your body can cope with this. This is called the drain challenge. Your level of consciousness and your vital signs — such as breathing, heart rate, temperature and blood pressure — will be checked every two hours during these 24 hours.
If your level of consciousness and vital signs remain good, then a pressure measurement will be performed the next morning. During the pressure measurement, the pressure in your brain will be measured to check whether your body is draining the cerebrospinal fluid correctly on its own. If this measurement is good, then your treating physician will be consulted to determine whether the EVD/ELD can be removed.
Increasing intracranial pressure
Your intracranial pressure may increase during the 24 hours that the EVD/ELD is sealed off. This can cause you to become drowsy, suffer more headaches and become nauseous. If your intracranial pressure increases, then your treating physician will be consulted to determine whether the EVD/ELD needs to be opened again.
Discharge from the hospital
The medical-technical treatment by the neurosurgeon will gradually decrease during the time spent on the nursing ward. The focus of your admission will switch to rehabilitation.
During your recovery, you will be given advice from your treatment team about where you can recover after the hospital admission.
Discharge to homeIf you are able to perform daily tasks independently and safely, then you can be discharged to home. Your family or relatives can collect you at the agreed time. If you require further therapy at home, then you will be referred to — for example — a physical therapy or occupational therapy practice. If you require care at home, the nurse will complete an application for home nursing care. An expert from the Centrum Indicatiestelling Zorg (CIZ) [Healthcare Indication Center] will give you advice about the care that you require at home.
You may notice after some time that you continue to experience problems with fatigue, processing of stimuli, concentration or memory. This will be discussed during the follow-up appointments and if necessary you will be referred to a rehabilitation center for day treatment.
Rehabilitation in a rehabilitation centerFor you to receive rehabilitation treatment in a rehabilitation center (Specialized Medical Rehabilitation), you must have the capacity to undergo the treatment and there must be a prospect of future discharge to the home situation. If you are selected for this form of rehabilitation, then the rehabilitation physician will enroll you. After completing the neurosurgical treatment, you may be transferred to the peripheral hospital where you were originally admitted during the waiting time for a place in the rehabilitation center.
Rehabilitation in a nursing homeIf your capacity to undergo treatment is limited to such an extent that you need to rest a lot in between treatments and you do have the prospect of being discharged to the home situation in the future, then you can opt for Geriatric Rehabilitation Care (GRC) in a nursing home. After completing the neurosurgical treatment, you may be transferred to the peripheral hospital where you were originally admitted during the waiting time for a place in the nursing home. The Care Transfer Point will support you in selecting one of the nursing homes where GRC is possible and will arrange the registration.
Rehabilitation for a longer period in a nursing homeIf you still require a lot of support during daily activities and it is not certain whether discharge to the home situation is an option for you, then a prolonged stay in a nursing home with rehabilitation is an option (indication 9b). You will have a longer period available in which you can work on your recovery and discharge to the home situation if possible. After completing the neurosurgical treatment, you may be transferred to the peripheral hospital where you were originally admitted during the waiting time for a place in the nursing home. The Care Transfer Point will support you in selecting one of the nursing homes where a stay with indication 9b is possible.
Early Intensive Neuro-rehabilitation (EIN)EIN is an intensive rehabilitation program for patients who have suffered severe brain damage and are in a state of reduced consciousness as a result. The EIN program can contribute significantly to recovering consciousness. There are only a few centers in the Netherlands where this program is available. In the southern part of the Netherlands this is available via Libranet, rehabilitation center “Het Leijpark” in Tilburg. The indication is set by the rehabilitation physicians of the institution.
Prolonged stay in a nursing home
If the care staff take over most of your personal care and you are not expected to recover to such an extent that you can be discharged to the home situation, then admission for a prolonged stay is the obvious choice. Experience teaches us that this is rare in younger patients following a cerebral hemorrhage. After completing the neurosurgical treatment, you may be transferred to the peripheral hospital where you were originally admitted during the waiting time for a place in the nursing home. The Care Transfer Point will support you in selecting one of the nursing homes where a prolonged stay is possible.
If you have been discharged and you do not require any nursing care during the journey, then your loved ones can collect you from the nursing ward.
If you are being transferred to another facility and you require nursing care during the journey, then the nurse on the ward will arrange your transport by ambulance.
The nurse will give the medical and nursing discharge papers to the EMT. Your family physician will receive a note explaining which treatment you have received.
There are no strict limitations about what you can do after being discharged from the hospital, but you will notice that you cannot resume all activities immediately without causing your symptoms to worsen.
Often the symptoms will worsen after returning home, because you will be more active and there will be more stimuli from the environment than was the case in the hospital. Even the car journey home can cause symptoms, because everything whizzes past at speed. The visits, phone calls and your own attempts to resume chores at home can also exacerbate your symptoms.
Common symptoms following excessive stimuli are:
- headache or pressure on the head
- fatigue, physical or mental
- drowsiness or difficulty falling asleep
- nausea, vomiting
- dizziness and balance problems
- hypersensitivity to activity, light or sounds
- irritable or emotional reactions to your surroundings
Tips to limit symptoms
- Increase your activities gradually. If the symptoms increase, then this is a sign that you should slow down a little.
- Create a regular and repetitive daily routine in which you alternate activity and rest. Do not let your moments of rest be dependent on your developing symptoms.
- Try to do one thing at a time. For example, switch off the radio or television in the background and put your cellphone away and only check it at set times each day.
- When you perform an activity for the first time, do this in a way that allows you to have control over the situation and stop if you want to. For example, doing the shopping or riding a bicycle. Take someone with you who can help you if it becomes too much.
- Always carry sunglasses and earplugs in your bag to use when you encounter unexpected environmental stimuli.
- Try not to do everything in one day. This is a trap that many people fall into on a good day and often results in a “harmonica effect” in which you suffer a setback in the following days.
- Schedule strenuous activities — or activities for which you need to be fit — in the morning when your energy levels are highest.
- Schedule adequate recovery time after strenuous activities. For example, ensure that you can take it easy the day after a birthday party.
- Avoid time pressure. Do not be tempted to finish a task quickly. Do not set any deadlines for yourself about when you should have recovered to perform an activity.
- Tell those around you what your limits are and explain to them that you cannot do everything the way you used to. If you find that explaining this often takes a lot of energy, you could send friends and family a message to explain this.
- Your symptoms can actually get worse if you do not exercise enough (for fear of making your symptoms worse). Try to get some gentle physical exercise on a daily basis, for example go for a walk or ride a bicycle if possible.
The mRS PROM study is a study that we are performing to improve the care for people who have suffered a subarachnoid hemorrhage (SAH). We want to do this by creating a good overview of the patient’s symptoms or problems. The improvement entails asking the patient and their loved ones to complete a questionnaire before the appointment, stating what they want to discuss with the specialist.
The study consists of three phases:
- Phase 1: we want to study how best to organize the care after a SAH by interviewing healthcare providers and patients. For example, we want to know what symptoms patients suffered, their limitations they encounter in daily life and what affects their quality of life. In addition, we will give them a number of questionnaires, so that we can discuss whether the questions are important to them and whether the questions were asked correctly.
- Phase 2: the questionnaire will be implemented in practice and the reliability of the questionnaire will be determined (for example, we will determine whether the questionnaire actually measures what we think it does).
- Phase 3: we will evaluate together with the patients and healthcare providers what the benefits — or possibly the disadvantages — of completing and discussing the questionnaire are and we will evaluate whether we can make changes or improvements.
Following a cerebral hemorrhage, it is often necessary to drain cerebrospinal fluid (liquor), which we also refer to as external liquor drainage. In the past, a patient with an external cerebrospinal fluid drain had to remain in bed in order to keep the pressure on the brain within set limits.
The LiquoGuard® is a device that is attached to the drain and ensures that the external liquor drainage is regulated and controlled. It offers you the option to get out of bed in the early stages of your recovery process.
We expect that the use of the LiquoGuard® will result in fewer complications and you should be able to leave the hospital sooner.
In order to test our expectations, we have set up a study to compare the number of complications, time in bed, etc. with and without the LiquoGuard®.
The bleeding following an aneurysm can cause brain damage. This damage is caused by a lack of oxygen in the brain and is also referred to as Delayed Cerebral Ischemia (DCI).
DCI occurs in approximately one in three people who suffer a SAH. It is one of the most important causes of permanent damage in these patients. DCI can be life-threatening and can result in the death of patients. It can also cause permanent neurological damage, such as symptoms of paralysis and problems with speech (aphasia). Patients who suffer damage due to DCI often need a long period of rehabilitation and sometimes end up in a nursing home despite their young age.
A medicine was developed in the 1980s that can prevent some cases of DCI. However, this medicine only works for a small group of patients. No significant improvements have been made in the past 30 years. It has recently been demonstrated that iron released from red blood cells during the hemorrhage plays an important role in the occurrence of brain damage. Therefore, we want to test a medicine that can remove iron and thereby prevent brain damage caused by lack of oxygen.
We hope that — as a result of this study — fewer patients will develop brain damage after a subarachnoid hemorrhage (SAH). Iron is released in the brain during the hemorrhage and this causes damage. We hope to reduce this damage using a medicine that captures this iron. The brain damage resulting from a SAH can cause death or permanent neurological loss of function. This means that patients often suffer symptoms of paralysis or problems with speech (aphasia). They often require lengthy rehabilitation and despite this, young patients are no longer able to go home and need to move to a nursing home. Many people who have suffered a SAH are also no longer able to work. We hope that the medicine that we want to test will result in less severe brain damage occurring. We also hope that this medicine can prevent damage from occurring altogether in a number of patients.