Stories by others who have experienced this

Bianca

I was 47 years old when it happened in 2016. Our children were all still living at home and were 15, 18 and 21 years old. I enjoyed working in the corporate catering business.

1 When did you suffer a cerebral hemorrhage?

I was exercising with a friend on January 18, 2016. I noticed that the corner of my mouth felt numb. I did not pay much attention to this, but I was no longer able to hold my towel and my legs felt weak. My friend went to call for help. Our family physician came, and the ambulance quickly took me to the hospital. They thought that I had suffered a TIA. A scan performed in the Emergency Room at the hospital revealed that I had suffered a cerebral hemorrhage. It took several weeks before the cause of the hemorrhage was diagnosed as an AVM.
I was admitted to the Medium Care Unit. I had my first epileptic seizure there. They managed to control the seizures with medication. I immediately received therapies in the hospital, such as physical therapy and occupational therapy and underwent lots of tests. It soon became clear that my left hand was not functioning properly.

2 How did the rehabilitation progress?

I was transferred to a rehabilitation clinic on January 29 for an intensive inpatient rehabilitation program lasting 7½ weeks. I was doing quite well after that. Walking, cycling, exercising: everything was going well.
At the end of February, they discovered that the hemorrhage was caused by an AVM. They decided that I needed surgery. That surgery was finally performed on September 26, 2016 and the run-up to the surgery was a tense time for me. I would have to be awake for a large part of the nine-hour surgery. And this is what happened. People were talking to me during the surgery. I had epileptic seizures throughout the surgery. I have had epileptic seizures regularly since then, causing mainly my arm and hand to make uncontrolled movements and sometimes also my face. This can be very painful, and I always feel tired afterwards. I do not feel the seizure approaching, but it always stops on its own.
After the surgery, I received eight weeks of rehabilitation at an outpatient clinic. I suffer from severe edema and I am generally in worse condition than before the surgery. I received physical therapy, edema therapy, occupational therapy and ambulatory support at home.

3 What was the impact of the AVM hemorrhage on your life?

The hemorrhage and the consequences had a major impact on my life. I am permanently incapacitated for work and can no longer work. I am no longer able to do certain things as well as before: crochet, cycling, walking long distances. My emotions have changed, I cry really easily and always take tissues wherever I go. Things affect me a lot. If I need to go somewhere or I have a meeting, then I dread going there and cry before I go. I also have a lot of physical symptoms, such as: edema, epilepsy, loss of strength, numbness and pain. I notice that my energy levels are a lot lower, meaning that I need to rest in the afternoon. This sometimes makes it difficult to plan something, though I sometimes decide to do it anyway. I can feel the day after that I did too much the previous day. As my mobility is limited, both as a result of physical limitations and mental exertion, I spend a lot of time at home. People in my surroundings do not understand what the problem is: people often think that everything will be alright. I have also lost friends; they no longer visit. People in my circle are still quite young and are busy with work, family, etc. We don’t really talk about it as a family at home. I miss that sometimes.

Lies

I had a very positive outlook on life at the moment that I was struck by a cerebral hemorrhage. I had my life back on track after a turbulent time, I was completing my study in online marketing, went running three times per week, I had found a new home in a different town, my son and daughter (from a previous relationship, co-parenting) were doing well at their new school and I was in a nice stable relationship.

1 When did you suffer a cerebral hemorrhage?

I had just turned 41 years old the week before, it was going to be a nice sunny day. September 18, 2016 was a Sunday like any other, the last Sunday of its kind... I can still remember the moment that my left arm suddenly drooped motionless against my body. I even spoke to it (as if that would help): come on, pick that glass up! But no, nothing happened. A voice inside me said that this was not good, but what should I do? I was at home alone at the time. Thoughts start racing through your mind at that moment. Eventually I called the emergency number 112. My voice sounded strange, different, as if I was really drunk. The lady on the other end of the line decided to send an ambulance urgently: my most expensive taxi ride ever. But I am so glad that I called! After a number of tests in the Emergency Room, I was told that I had a cerebral hemorrhage, with severe loss of function on my left side. I had no function left in my leg, arm or hand. I could not walk, even sitting was a problem because I had no balance. Your life crumbles when you hear that: Figuratively, but also literally, because I will never be my old self again. 

2 How did the rehabilitation progress?

What next? I started working on my recovery with a positive attitude from day one (with the support of my partner, parents and children, aged six and eight years at the time). In less than a week I was moved from the hospital to a rehabilitation center. You cannot influence everything, but you can influence your attitude towards things. So from that moment on I fought every day to regain my functions, as an inpatient for the first six weeks and then in the outpatient clinic.

Further tests were performed in December 2016 to determine the possible cause of my cerebral hemorrhage. They found an AVM (tangle of blood vessels), which was surgically removed (via a hole in the skull) on the advice of the neurosurgeon in early April 2017. I didn’t have a choice really, because not having the surgery meant a 76% chance of another hemorrhage. I suffered a small relapse in my arm and hand, but also in my leg. The mental blow followed soon after. I suddenly realized what had happened to me and we were told all the time how different things might have been. You don’t really think about this as long as you are in “survival mode”, there simply isn’t any space for this. The focus is on recovery, fighting, falling, getting back up and continuing. The months that followed were full of emotions: a real emotional roller coaster. You experience the full range: sadness, anger, fatigue, joy, frustration, acceptance (how?) and anger again. But also disappointment. You feel sad when people in your circle don’t know how to handle a situation like this. I don’t need or expect any pity, but sympathy and genuine interest can offer tremendous support. Not only for me, but also for the people close to me. Because one thing is clear: you are not the only one who suffers a CVA. Those close to you (partner, children, parents) are also affected, they also need support and sympathy.
 

3 What was the impact of the AVM hemorrhage on your life?

I will have to learn to accept that the recovery process takes a lot of time and patience. I also wonder whether I should accept this. It is often referred to as a living bereavement and this has nothing to do with acceptance. Processing that bereavement; I think that is what it should be called. I try to cope with the new me and the limitations that come with that new me. And I also continue to fight for the small things that still show progression, such as muscle fitness and training muscle mass. But I am also still really struggling to find the right balance between exertion and relaxation. For a busy bee like me it is still really difficult to rest at the right time. My life will never be the same again, I do not know if I will ever be able to cycle long distances again, wrestle with my children or go for a run. This is the start of a different life, the new life of Lies 2.0. The most important thing to me is that I am still here, I can still see the world around me, see my children, tell those near to me that I love them and enjoy the little things.
My message: live, enjoy and do not postpone until tomorrow that which you can do today. Really, things could all be very different tomorrow and you don’t want to regret not having done, said or explained things.

Never judge someone at face value, you don’t know whether there might be tears hiding behind my smile...

Suzanne

I work as a nurse, I am married and have two children, Thomas aged nine years and Lucas aged seven years. I love going to music festivals, like to dance and enjoy making clothes.

1 When did you suffer a cerebral hemorrhage?

I had just turned 30 when it was discovered. I was working a night shift as a nurse in the hospital. I suddenly developed a really bad headache and my ears were ringing. I thought that I was suffering a migraine, because I had never experienced such a bad headache before. As I was working in the hospital, I was immediately taken for a CT scan. The neurologist then told me that I had an aneurysm caused by an AVM. I was admitted to the hospital immediately and received treatment for the aneurysm the following day. I would receive treatment for the AVM after that. I suffered a lot of headaches whilst in hospital.

2 How did the treatment progress?

Once I had recovered from this treatment, I had a meeting with the neurosurgeon to discuss the treatment options. I opted for embolization via the groin, because I wanted to avoid major surgery. Fortunately, they were able to seal the AVM with glue in one procedure, so I did not require further treatment. But it took a year to complete all the examinations and treatments and give me the certainty that the AVM was completely sealed off. The doctor did say that, because I was so young, I would need another angiogram after five years to check if everything was still looking good. In the period that I was waiting for the treatment, I did sometimes feel scared that things would go wrong if I had a headache. I received a leaflet about my condition, and I looked for information on the internet, but I could not find a lot of information about this.

3 How did the rehabilitation progress?

I recovered well after the treatment and was soon able to return to work, but I did notice that I felt tired more easily after work and that I had no energy left for other things. As I was working in a busy department in the hospital, I decided to find a different job. I also started working fewer hours. I often had anxiety when I suffered a headache, because I would be scared that something bad was going to happen. It took a long time for this anxiety to go away. My husband was scared when he received a phone call in the middle of the night from the hospital saying that I had suffered an aneurysm, he was also really nervous when I received the treatment. My husband was very worried when I was sick and kept a close eye on me. My children were still really young and were not fully aware of what was happening. In the meantime, I had found different work as a nurse and I was trying to improve the balance between work and private life, which I was achieving quite well. I started looking at things differently and I started making more conscious decisions about what was really important to me in life: doing more things with my family and worrying less about my work in healthcare.

4 What was the impact of the AVM hemorrhage on your life?

I had a follow-up angiogram this year and this revealed that a part of the AVM has not been sealed off, for which the neurosurgeon is recommending surgery instead of embolization. This was something my husband and I did not see coming. I thought that they would be able to glue that last bit too, but the neurosurgeon says that surgery is the best option for me. I will now have an MRI scan first to determine how the surgeons can best perform the surgery and then I will meet with the neurosurgeon to discuss the treatment. I am really dreading this major surgery. Now that my children are older, then are starting to understand what will happen if I have the treatment. But I am trying not to think about this too much.

Alexandra

There are certain moments in life which seem to happen on purpose to wake us up from our eternal sleep. To me, this happened when I had a hemorrhagic stroke due to an AVM I did not know I had.

1 When did you suffer a hemorrhagic stroke?

I was 26 and had been living in Amsterdam for almost four years when I suffered a hemorrhagic stroke which was caused by a ruptured AVM that I didn’t know I had. It happened in the last day of February, as I was returning from work together with my husband Niek (then boyfriend). We work at the same multinational IT company and although I don’t remember that day or the week after, he has told it to me many times over, so it feels more “familiar” now. 

I was having “the worse headache in my life” and went directly to sit on the bed while Niek was preparing dinner. I made an effort to eat dinner but struggled and immediately had to rush to the bathroom and vomit. The pain was too much and I screamed “call the ambulance” to Niek, struggling to speak. When the ambulance came I was first directed to a local hospital in Amsterdam which took a CT scan and saw the bleeding, but since they didn’t have enough specialists, they sent me on to the Erasmus Medical Center (EMC) in Rotterdam.

2 How did the treatment progress?

There I had a lot of pain in the first days and I could not stand noise and lights, it is by no means a fun memory. The neurologists were trying to give me some tests to check my memory but it was so bad I could not even remember something they had told me two minutes before. The surgeon suggested a craniotomy to remove the AVM but that could only be scheduled a month after. 

So it meant I had to go home and try to keep calm and not panic about the upcoming brain surgery. It was the most cruel month in my life. All I could do was go for a walk each day, but my balance was terrible, so I always had to hold someone’s hand in order not to fall over or lose balance completely. After the surgery took place, everything seemed to slowly get better, but little did I know that cognitively I will never recover completely.

3 What was the impact of the hemorrhagic stroke on your life?

One month after the surgery, I tried to go back to my old job and was very keen on “making it work” as if nothing had happened. But after a while, with the help of neurologists and neuropsychologists from the rehabilitation center in Amsterdam, it became clear that it was no longer possible to keep that pace, just as it was no longer possible to think fast, to multi-task and my short-term memory had been severely affected by my stroke. On top of that, I was still suffering daily migraines, so I had to take a step back.

When that happened, I felt useless and didn’t see a reason why I was still alive, so soon my husband noticed that I was going through a depression. At therapy, they discovered PTSD as well and immediately started working on a treatment. It took more than half a year to feel a little bit better again after this deep fall… 

Right now, I am approaching life differently: living moment by moment and not trying to force myself to do anything that I feel would be too much for my body or my brain.
Thus living by the motto: “Mens sana in corpore sano (a healthy mind in a healthy body)”.

Nikkie

Except for sports and driving a car, I was always able to take part in things, even though I think that I already had brain damage by then. It has never stopped me from doing things. I completed elementary school, high school, community college and a year at college. I travelled the world on my own and did lots of things. I had boyfriends and even found the love of my life, who I married just last week.

1 When was the AVM discovered?

I was born with a manufacturing error. It is not hereditary or contagious, it is just there, like my little finger and my nose. I have never known any different. Fortunately, it had never stopped me from doing anything until now. I did just about everything. It is best to avoid pressure, either around me or inside me. I need to avoid high blood pressure at all costs.
It became clear soon after my birth that something was not right. I was a happy child and developed skills such as eating, talking, etc. quickly and easily. However, my motor skills did not develop “as normal”, my skull was bigger than average, and my mother could hear “whooshing” in my head. This was later revealed to be blood that was flowing too quickly through the veins in my head.

2 When did you suffer a cerebral hemorrhage?

The hemorrhage occurred in early December 2017; I don’t know exactly when. It was actually a blessing in disguise, as I do not know how I would have been able to “slow myself down” otherwise. It may sound strange, but I am glad that I suffered the hemorrhage. I think that I had been pushing myself too hard for years and that my body had tried to tell me this “in a gentle way” several times, but I did not listen.
I remember not being able to think straight, vomiting all the time and feeling really tired. I was unable to walk or sit up straight. My balance was poor, and I was badly incontinent.
On December 22, 2017 the neurologist told me: you have suffered a cerebral hemorrhage. I am enrolling you for rehabilitation and home nursing. I needed to be admitted for rehabilitation.

3 How did the rehabilitation progress?

I was admitted to a rehabilitation clinic on January 17, 2018. At first, I slept a lot. I think that I really needed this period of rest. I was immediately given structure: get up, eat, etc. the same thing at the same time every day. I think that as a result the burn-out and depression soon faded to the background. Only then was my body ready to tackle the rehabilitation. I was admitted for two months and then attended day rehabilitation for two and a half months. I had three major goals: being able to walk again, improve my mood and no longer be incontinent.
At first it did not feel like I was making any progress. That was really tough. Would everything work out in the end? I received occupational, speech and physical therapy and was scheduled for all sorts of things such as the arm-hand group, the judo group, the swimming, etc. I spoke to the social worker, psychologist and pastoral caregiver. It was really hard work and at the same time they taught me to recognize, acknowledge, lay down and respect my boundaries. I was not allowed to ask too much of myself, something I had probably been doing for a long time and obviously did not have a favorable effect.

I knew that my boyfriend, who I had been with for 12½ years, really wanted to get married. I was never really that interested in getting married. He stayed with me and said very clearly: “for better and for worse, in sickness and in health”. At the start I was worried that he would leave me, but he assured me that he was staying. I was in a horrible situation; he could have walked away. But he didn’t. I think that he helped me to find confidence and belief in myself again.

I remember thinking that I could do anything. Thinking that I could just get out of bed and walk down the hallway. Nothing was further from the truth: it simply was not possible. I felt that I had lost my intelligence, I could no longer follow what was happening around me and everything was moving too quickly. This was a really horrible feeling, particularly because everyone just carried on with their own lives and I wanted to do that too. I always used to think that things were boring if everything was nice and quiet, but now I really need that.
It is weird to notice that I live in a completely different world than the people around me. I remember feeling that the people who were also working on their rehabilitation understood me best. They also experienced a sense of bereavement, knew what it felt like to have to fight for your life. When I heard that I would probably never be able to ride a normal bicycle again I felt very sad. Those undergoing rehabilitation with me understood this. It is wonderful to see the bond that developed with people who I would normally not have had any connection with.

4 What was the impact of the AVM hemorrhage on your life?

It has been a long road and there are still some unpleasant times, but in general I am doing really well. I have noticed that I still cannot think as quickly as I used to, feel tired more quickly and need structure and clarity in my life. I struggle to switch between tasks and need more processing time. It is important that I do not plan too much. Two appointments in one day are more than enough. Something for which I need to use my brain in the morning and something involving sport or exercise in the afternoon. I often tell myself: “Here we go again” to motivate myself. I was always really good at motivating myself, perhaps too good. It is now important that I listen to myself and decide what I can and cannot do and to be clear about this to the outside world. It sometimes feels really horrible that I can no longer do everything, but on the other hand I need to be glad that I am still alive. It feels as if I have been given “extra time”.
I hate being patronized. Please don’t do that. I do not need pity, I have not suddenly lost my intelligence, I have simply been given a new set of instructions. Nikkie 2.0, Nikkie new style. I try to focus on the benefits of this, but that is not always easy.
On the other hand: I am still alive, but no longer have to take part in the mad rush of society. The only thing that I need to do is take good care of myself.