Subarachnoid haemorrhage: a recent survivor

My name is Jen and I'm a recent subarachnoid haemorrhage (SAH) survivor.

This is the timeline:

10th February 2010 in the evening: Subarachnoid haemorrhage
11th February: transferred to neurological hospital - CT scan, angiogram then an attempt at coiling which was unsuccessful
12th February: craniotomy for clipping of aneurysm
13th February: 50th birthday!!

As you can imagine, my birthday celebrations were put on hold this year...

Under stress

I was temping as a medical secretary at the local hospital as well as for a BUPA Consultant, working 2 jobs because my partner was out of work and because I had lost my corporate job last August and the NHS one didn't pay half as much. I was under a LOT of stress at work but I thought I was strong enough to deal with it...

Calling an ambulance

On Wednesday 10th February I had a stonking headache but I went to my Pilates class at the hospital after work; after all, I had paid for it up front and didn't want to lose out. I didn't work out that hard because I was very, very tired, but I went home happy. I sat down on the sofa to chill out, with a Pepsi Max in one hand and a Crunchie in the other.

All of a sudden I felt very unwell. I complained to my daughter that I couldn't get comfortable and started to feel rather panicky. My shoulders and head felt like they were in a pressure cooker, but I tried to tell myself I had just twisted my neck at Pilates, because my neck was so stiff. Then I started to feel sick so I asked for a bowl.

At this point, I asked my partner to call an ambulance. I remember thinking "this must be what having a stroke feels like", but at the same time I was running through FAST (Facial weakness, Arm weakness, Speech problems, Time to call 999) in my head and thinking "hmmm, I can move my arms, my face isn't drooping, I can talk... it can't be a stroke."

Going to hospital

The paramedics came and asked me lots of questions which I answered but found very tiring. They shone a light in my eyes and tested my limbs for weakness. Eventually they asked if I wanted to go to hospital or sleep it off. I remember thinking, "What is WRONG with you? Can't you SEE I'm terribly unwell?", but just answered quietly that I didn't WANT to go to hospital but knew I had to. They asked me to walk out to the ambulance(!), which I did still holding a bowl, and I sat in one of the seats, trying not to move my head or neck, while my daughter sat in the other. They didn't get me to lie down on the bed or anything. We don't have a car, but luckily we live near the hospital so my partner said he'd meet us there.

All I remember after that is throwing up as I was being wheeled through A&E, the light hurting my eyes, and being taken through to a cubicle. Apparently, my 19 year old daughter did the admin stuff with reception, then my partner arrived. I am told we were moved to a small room and I was put in a gown, and lots of people kept coming and doing neurological observations on me, asking me questions, making me push/pull against them, etc.

CT scans

I eventually got taken for a CT scan, and admitted to the Acute Assessment Unit, at which point it was around midnight and my daughter and partner went home. During the night someone came and told me I had had a bleed, and that they were talking to a neurological hospital based in London, where I would be taken the next morning. I remember thinking this must be serious at that point!

Early next morning I was blue-lighted to the hospital, but I was very concerned about making sure someone called my partner to explain, so that HE could explain to my daughter. Apparently he played it down so she wouldn't panic. They let my family know (they all live in France) and arranged to come up to London to see me after my op the next day.

On arrival at the hospital I had a CT scan with dye so that they could visualise the arteries. I don't remember much about it apart from them saying I would feel like I'd wet myself but I wouldn't have: I didn't feel that way at all! The other thing I remember is thinking that all the doctors/radiologists/anaesthetists were very good looking!!

Attempted coiling

Next, they said they would attempt coiling and they wanted me awake for that. Now, I know what I'm like (and I've always dreaded having an angiogram) so I told them how I'd "tried to get off the operating table" when I had my daughter by Caesarean. They said, "we need you still for this" so they put me to sleep.

Craniotomy

Unfortunately, when I woke up they told me that they couldn't see where the aneurysm might be (or something - it's a bit vague), so I would have to see the surgeon. She came by later to explain that she needed to do a craniotomy because there was an area just above the eye where there was something abnormal, but they weren't sure if it was an aneurysm. Just as she had told me the operation was for the next morning, my partner and daughter turned up so she was able to tell them herself. My partner started quizzing her on how many of these operations she'd done, and I remember cringing because I knew this was the leading hospital. She took it very well though, and was quite jokey about it. Turns out, she is their leading surgeon, and specialises in vascular problems, so it was quite ironic really.

I really thought I wouldn't sleep that night, but I did. I just felt so awful, I was looking forward to them getting on with it. I thought, "all I have to do is go to sleep and let the specialists take over". I had recited various prayers, and felt very calm. I even thought, if I have to die then so be it. The surgeon had obviously had to explain what the risks were, and I knew I could die, although it didn't worry me that much (me! the highly anxious person!). Next morning I asked for pen and paper so I could write letters to my partner and daughter. I didn't want to do "in case of death" letters, but I wanted them to have something that said how much I love them. They found them on my table when they came up to the ward to wait for me, which is what I wanted.

I was wheeled down to theatre and taken in for my anaesthetic. Like the day before, I thought that everyone who looked after me looked absolutely gorgeous! It was really weird; I work in a hospital myself and I remember thinking that this was obviously where all the good-looking people came to work. It was so funny!

After the operation

Obviously, I don't remember much after that. After the op I was taken to High Dependency Unit where my partner and daughter joined me. I was apparently very talkative when I woke up, joking with the nurse about her Yorkshire accent, saying I could fancy fish and chips, trying to sit up, complaining about the catheter, etc. I have only got my daughter's word for it! One thing I do remember is that when my partner and daughter went to leave I got very upset because my partner wouldn't give me a proper cuddle. He couldn't get the side of the bed down because of the urine bag etc hanging on the side, and I got very agitated. My daughter could see how upset I was, so she held on to the bag and the side of the bed so that he could give me a proper hug. Bless her!

The next day (I think), I was brought back to my ward, and I was just happy to not have so many wires coming out of me, hoping I'd get some sleep. All I wanted to do for the first few days was sleep and I was very upset that everyone else seemed to be so noisy. Some of the other patients were further along in their recovery than me, so they were talking loudly, having visitors, etc. I just wanted them all to shut up and leave me alone! I was being woken every 4 hours for Nimodipine to avoid vasospasm, and I had neurological observations every time as well. I think I was very grumpy!

My 50th birthday

The day after my operation was my 50th birthday. My partner, daughter and someone else (hiding behind a huge poster of a chocolate cake with a 50 on it) turned up with cake, singing Happy Birthday. Then the poster was lowered and I was astounded to see one of my sisters. I was all "What are you doing here? You live in Paris!". It was lovely. I had some cake, but I really didn't feel like it. She stayed for a few days, and then after she left, one of my brothers turned up - with the same reaction: "What are you doing here? You live in Paris!" He brought me earplugs, courtesy of my sister-in-law (who had to stay outside as she had a chest infection). I also got a parcel from my eldest sister, containing among other things a knitted eye-mask, which was wonderful because I was still suffering badly from photophobia. Also, the lights are always on in a hospital ward, even when they are dimmed at night, so the eye-mask came in very, very handy indeed.

Recovery and rehabilitation

To cut a long story short, I was in the neurological hospital for 4 weeks, partly due to continuing nausea, dizziness, headaches etc, and partly because the ward had an outbreak of the Norovirus just after I got there so they were unable to transfer people to other hospitals. I was moved to a side room in my last week, and then I was moved back to my local hospital for "neuro rehab". Again, I got a side room (thanks to my manager!), and I made a gentle recovery.

Six weeks after my subarachnoid haemorrhage I was allowed home, once I could master the stairs. I do have a hygroma inside my head - a collection of fluid between the brain and the skull - and I have a "pseudomeningocele" which is a collection of cerebrospinal fluid under the skin by my scar. I am waiting for my follow-up appointment to see how the surgeon wants to deal with it. She said they are usually harmless and usually resolve spontaneously within 3-4 weeks, but mine is persisting. It's unsightly but not painful.

I've been home 2 weeks now, and life is beautiful! Well, that is if you don't count money problems: as I was a temp, I have no income and my partner is still out of work. We have applied for Employment and Support Allowance (which used to be called incapacity benefit), but they still haven't paid us anything. It will be back-dated to 11th February, and it will be most welcome when it finally arrives!

I am extremely lucky in that I have no obvious neurological after-effects. I sometimes use the wrong words, or feel slightly off-balance, but that's about it. The main thing is the TIREDNESS! I am finding it very hard to be so limited and feel like a wuss, but the doctors keep reminding me I've had major brain surgery and that it will take a while to get back to normal.

Further information

You can read more about Jen on her blog.

If you have any questions about subarachnoid haemorrhage or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

You may also find these links useful: