SAH Awareness

[Karen]

I was mis-diagnosed at 38 and again at 42 ... it's not the way that it should be, but unfortunately it is. I would probably have had less deficits now, if I'd been properly treated at 38... but it didn't happen that way.

Kelvin, anger is a natural reaction in the early months ...I was angry at first and you can be eaten up by anger and totally consumed by it, but you do get over it and you can't change what has happened. All you can do, is concentrate on your recovery and find out your family medical history and make sure that your own children/siblings/relatives are informed.

I am thankful to the internet, as after the sentinel or warning bleed at 38, I trawled the net and came to my own conclusions. When it happened again at 42, my family knew what to tell the paramedics and it's thanks to them, that I'm not even worse off and still here to tell the tale.

Things should be different and maybe I should have been more insistent, but who knows and from what I've researched, many GP's will only come across a few SAH'ers in their working life time .... am sure that there are many other life threatening illnesses that also go undiagnosed with serious or fatal consequences and not just those of us that have had a SAH.

It would be interesting to know if any of you guys have asked your GP, how many cases of SAH he or she has seen? My GP has told me 4.

xx

[Gill C]

IIt would be interesting to know if any of you guys have asked your GP, how many cases of SAH he or she has seen? My GP has told me 4.

xx

I askd my lady GP how many people she knew of in the area & she said none. The male GP I saw also hadn't seen anyne with an SAH hence asking me to go & talk to the trainee GP's.

I too had an unsual story with my clipping as I hd vasospasms during the op wihtout havin had a bleed. Mr Sparrow mentioned it whilst with another neurosurgeon neither had known that to happen before!

[Tina60]

My headache started in the middle of the night while in bed - i thought it was a bad migraine, took some ibuprofen and lay down on the bed. Next thing I know it was 48 hours later and a nurse was telling me they were taking me up to be coiled as I had had a bleed in my head. From what I have gathered from family, my boyfriend at the time couldn't get any sense out of me in the morning - I was responding to commands so he got me downstairs and called an ambulance. I gather I looked like I'd had a stroke as one side of my body was dropping. The ambulance men took one look at me and whisked me to A & E where a CT scan was done and the SAH diagnosed.

I agree that something should be done to raise awareness in the NHS - then maybe that 50% figure would be a lot lower

[JayKay]

My first thought after having my SAH, while I was still in hospital, was "I must raise awareness". When it happened, I convinced myself at first I had twisted my neck somehow, as I was running through the stroke signs in my head and thought it can't be a stroke, I can speak, raise my arms, my face hasn't drooped. And yet I KNEW without a doubt that something had "gone" inside my head. I even pointed to the exact spot.

The paramedics did shine lights in my eyes and check for limb weakness, and as I was conscious and not talking rubbish they asked if I "wanted to sleep it off". I said "I don't want to go, but you are going to have to take me to hospital". Thankfully the junior dr said she would do a CT and if it showed nothing I'd have to have a lumbar puncture. I'm just glad (IYKWIM) that there was a lot of blood on the CT!!

My GP tells me that a GP might only see one SAH in his/her lifetime.... A&E doctors however should be more aware. Well, that's what I think anyway!

[Tina]

I was the first my GP had come across...i was mis diagnosed as having a sick bug. On the 3rd day, i was incoherent and could not get out of bed...my best friend took me to hospital, where i was rushed for a CT scan by a Doctor who picked up straight away what might be wrong ( tried to find him and say thank you but had moved on and could not find him ) i was then blue lighted to Atkinson Morley Tooting. I was very lucky and cant thank my Neuro Consultant and all the wonderful nurses that saved my life. My GP has also been wonderful, infact he told me a few days after i had my SAH, he was called out to another patient that had had an SAH, sadly he did not survive. He has only come across 2.

[kelvz48]

Wow, all these stories are amazing. I guess it's like Karen said though, "we can't change what happened". I for one am starting to feel more positive with every day now and have accepted that life may not be exactly the same as it was but I do have a life to get on with.

[Sandi K]

My office is in the largest hospital on Vancouver Island. I was very lucky to be at work when I had my NASAH and was vey lucky that the paramedic who came to my office recognized quickly that 'something was happening to the brain'. I had the stiff neck and thunderclap headache. While vomiting into the garbage can in my office I remember him saying 'I don't think you are having a stroke but somethingnis happening to your brain. Do you mind if we take you to the hospital across town in the ambulance'. The other hospital is where neurology is. Thank goodness for that paramedic! In the ER they began treating me immediately as if I had an aneurysm (ct scan, bp meds, morphine, codein, ECG, and so on). in the end it was a perimesencephalic brain bleed.

The only complaint I have is that I was discharged with no information. The anxiety from the uncertainty is what I'm angry about. That much anxiety can't be good for recovery.

Sandi K.

[sam.dixon]

I too am one of the lucky ones. I had been out for a football club dinner and had had a few drinks. I was just getting into bed when I suddenly had the most horrendous headache and was then violently sick. My first thought was that it was too much alcohol, although I had only had a few glasses of wine and a couple of shorts. I was sick again, so began to think it was food poisoning. Each time I was sick, the pain came back with avengence and I was crying with the pain. My husband was putting cold flannels on my forehead as the pain was so intense. We took my temperature as we thought it could be meningitis (which has very similar symptoms I have read since) but this was normal.

My next though was migraine - my Mum suffered these and I remember she used to be sick and the doctor would come and give her a morphine injection. I needed something for the pain as it was so bad, so we called the hospital for advice. They weren't that helpful and said it was up to us. We could come down if we liked! So we rang our GP. He suggested paracetamol-which I promptly threw up! After being sick 5 times, we called the doctor again and he came out at 5am. He said he would give me an injection to stop the vomiting, but was not prepared to give me a morphine injection. He told me he wasn't happy and said that although it might only be a virus, he would like me to be checked in hospital.

As we had both been drinking, he called me an ambulance and I was having a CT scan by about 8.30am. My husband had gone home while I had the scan, as we have two children and they told me to get him back as they had found the cause of the headaches. When he came back they told us that I had had an SAH and that they needed to fly me to Southampton Hospital to the Neurology ward. I was gobsmacked as the painkillers were working by then! My husband went home to get bags packed and by the time he returned, I was lapsing into unconsciousness.

I have no recollection of the trip from the hospital to the Air Ambulance, and the next thing I knew I was waking up in Southampton with a drain in my brain and my head shaved. I had the memory of a goldfish and kept asking my husband the same questions over and over.

I stayed in Southampton for two and a half weeks. Their care was absolutely fantastic and they were so helpful and supportive once we returned to Jersey. As someone else mentioned, Lesley, the neuro nurse was fantastic and was always at the end of the phone for advice!

I don't remember much of the first week at all. Apparently I went downhill at one point as I suffered a vasospasm and ended up back in the high dependency unit.

It was a terrifying experience for my husband and family, but the care we received was amazing and I was definitely one of the lucky ones!

My sister-in-law's sister was not so lucky. A year earlier, she had a thunderclap headache, put up with it all day and went to her doctor after work. She was given a morphine injection, told to go to bed.... and died of a heart attack in the night!

My doctor definitely saved my life!

I also want to do something to raise awareness. I have since heard of two more people over here who were mis-diagnosed so have not had as good an outcome as me.

I returned to work part-time in September as Deputy Head and have just returned full time. As far as I can tell I have made a complete recovery and am very very lucky!

My husband is in a band and we are planning a fund-raising event to raise money for Southampton Neurological Hospital. I hope to get something in the local paper to raise awareness and I tell anyone who'll listen about it!

My doctor did ask me "Is it the worst headache you've ever had in your life?" I always go to see him in the practice now!