What’s it like to have a brain hemorrhage? Surely, it’s triggered by something or more dramatic than … feeling like you twisted your neck? Well, yes and no. This is Jen’s story of what happened when she had a brain hemorrhage.
Can you tell us a bit about yourself?
Hi! My name is Jen, I’m 50 and was born in France but both my parents are British. I spent most of my life in France but moved back to the UK 12 years ago with my 20-year old daughter, Claire. I’m divorced but have a long-term partner.
I have loved photography all my life and am now preparing to make a move from office job to child photographer. I have discovered that life is too short to not do what you love for a living!
What were you doing when the hemorrhage occurred? What did it feel like?
I hadn’t ever suffered from anything major, health-wise. On February 10th I had just got home from my Pilates class and flopped on the sofa when I suddenly felt very strange.
At first, I felt like I’d twisted my neck or something, but then I realized that my shoulders, neck and head felt like they were in a pressure cooker. I panicked slightly because I couldn’t get comfortable and as it continued I realized this was not good.
I got my partner to call for an ambulance and my daughter to bring me a bowl because I felt very sick. I started thinking “this must be what having a stroke feels like.” The paramedics arrived and examined me, and asked me if I wanted to “sleep it off” or go to hospital. I remember thinking “What a strange question!” and told them that although I was really not keen to go, I knew I had to go to hospital.
What happened after you had the hemorrhage?
As we arrived at hospital I started throwing up and apparently this went on for some time although – I don’t remember much after this point. I was eventually taken for a CT scan and admitted to the ward.
My partner and daughter went home around midnight but during the night I was told that I had had a bleed on the brain called “subarachnoid haemorrhage.” The doctors talked to people at the National Hospital for Neurology and Neurosurgery and I was to be taken there in the morning.
knew it must be serious but I had no idea of the statistics. Apparently, more than one third of survivors have major neurological deficits. Furthermore, an estimated 10-15% of patients die before reaching the hospital. Mortality rate reaches as high as 40% within the first week. About half die in the first 6 months.
The next morning I was taken to the NHNN with sirens and horn blaring. When I got there I was taken for a CT with contrast and then they attempted to “coil” my aneurysm.
This was not possible so I was told I had to have brain surgery the next day to place a “clip” across the neck of the aneurysm. The five-hour operation consisted of cutting a bone flap from my skull to allow access to the brain.
When I woke up, the whole side of my face was black and blue from the surgery and my eye swelled shut. I had a big bandage around my head and I felt sick, dizzy, my head was hurting and the light hurt my eyes. But I was alive!
For the next 21 days I had to be woken every four hours to take a drug called Nimodipine to avoid “vasospasm” which can lead to a stroke. I stayed in that hospital four weeks and was then transferred back to my local hospital for a further 2 weeks.
In hospital I had a bit of physiotherapy and occupational therapy, but I was one of the lucky ones. I did not have any major physical problem, such as limb weakness or a speech defect.
I was determined to make it to the bathroom by myself as I couldn’t bear the thought of using a bedpan, but I had to have help showering for several weeks. As soon as I could master the stairs I was allowed home – although this did take six weeks!
Have there been any long-lasting effects of the hemorrhage and surgery?
Since I’ve been home, the biggest problem has been the crippling fatigue. I also have problems with short-term memory, face recognition, concentration and something called “divided attention”. At first, I also had problems finding the right words for things but now that only happens when I’ve overdone it.
The fatigue is very hard to deal with. For example, I had a shower in the morning then came downstairs to see that the groceries had been delivered. I started putting them away in the fridge but after about three minutes I was exhausted and my daughter made me go and sit down.
Before I started I felt fine, but just those two things in one morning (shower + physical activity) were too much for me. The hardest thing is not seeing it coming. I pootle along just fine until all of a sudden, out of the blue, I have to go and sit/lie down. If I do too much two days running, the third day I will have to sleep all morning, with no energy to even lift my head off the pillow.
How long until you were back to your “normal” self?
I have been told this will go on for months and at the moment I am unable to work because I can’t do anything for any length of time.
Are you at risk to have another one?
Apparently, there was no contributing factor to my hemorrhage, although I had been under a LOT of stress at work. Now that the aneurysm has been clipped, and no other aneurysms were seen on the CT, there is no reason for me to have this happen again. Fingers crossed!!
What advice would you give to someone who has a friend or loved one going through serious surgery and a long recovery period? What can we do?
I would say it’s possibly harder on the loved ones looking on than on the patient. Of course, it’s painful and scary, but when it’s happening to you, you just get on with it. When you see your loved one go through it, you feel helpless. I’ve experienced this first hand. My mother had an ischaemic stroke four years ago, although she is doing really well now.).
The only thing one can do is be patient with the patient. We got lots of help from various quarters, including the specialist nurse at the hospital who gave me a really good booklet which you can browse online here.
Keep the faith and always “think positive”. Where there is life there is hope. I have heard so many stories from people whose family were told to prepare for the worst and they have got better against all odds, so it DOES happen. Just stay strong.
Have you ever had a serious surgery? Any questions for Jen?
P.S. True Story: My husband died from brain cancer at 36