SAH Awareness

[kelvz48]

OK Every year, 8500 people in the UK will have a subarachnoid haemorrhage, of whom about 50 percent will survive. That means 4250 people per year dont survive. That seems like a huge number to me so why are there so many misdiagnosis cases just on this site alone and why isn't there a raised awareness to this condition especially among GP's and doctors.

[Louise]

My husbands cousin was one of those 4250 they thought it was a viral infection, on saying that I do know that in a lot of cases it isnt easy to detect it depends on how you are to the hospital staff, I think it must be difficult on the whole....

Think the awareness is like the information we get when we leave the hospital a bit thin on the ground.....

love the flag by the way - our Nephew's half welsh....

[winter]

Those numbers are high! I don't understand, either, why so many cases are misdiagnosed to start with. It is truly horrifying that this happens even once! Obviously more education is needed within the medical community! My SAH occured at work, and thankfully my co-workers were there to help me and called 911. However, the medics should have talked more to them, they knew something was not right w/me. The medics thought maybe I had a case of food poisoning - because of the vomiting that came on suddenly. I did pass some of their tests: what day is this, how many fingers am I holding up, etc... I was struggling inside my head to stay alert and alive. After their assessment, they asked me if I wanted to go to the hospital or not, just to get checked out! I asked them why they were asking me that and what did they think, after all they were supposed to know. My coworkers said, yes-take her. I was feeling confused, embarassed and just didn't know what to think. Then they asked me which hospital I wanted to go to! Told them I didn't know, closest one available. I learned later, that I had told my office manager, that I could hear her talking but didn't know what she was saying. If they had asked her questioins, maybe they would have had a better idea of what was happening to me. Once at the hospital, they did xrays of abdominal area. Found nothing. My blood pressure was actually perfect. I was, however slipping in and out of cousciousness. And the Dr. then began asking a lot more questions and sent me for MRI. Thank God for that, as it showed a brain bleed and I was then taken to another hospital. Sorry to have rambled on now! Your post today just brought back many memories and I am so thankful my co-workers told the EMTs to take me to hospital. The outcome otherwise, would not have been good! Your posting and another from a US site, has prompted me to write some letters, for better awareness. Maybe more of us could also do so. Might help save some lives! Have a good day Kelv, get some rest and know that many folks are sending good thoughts and wishes your way

carolyn

[kelvz48]

Yes I'm sure it is a difficult call to make. It just seems that an awful lot get misdiagnosed and given a couple of paracetmol to take.

[Gill C]

I had typical symptoms 10 days after the initial anni balloooned byt didn't develop the classic symptoms until then although the pain & stiiff neck & where it happened were completely classic. I even had my own GP & 2 GP friends telling me it looked like a bleed on the 17 day wait for an MRI. The other misdiagmoses were muscle spasms, migraine & cluster headaches (I now realise I had suffered with these for years not knowing what they were). My Gp was actually moer well informed than my hosptial eye clinic who although scanned me by CT didn't do the MRI as an urgent case buttreated me as a normal outpatient

Ihave been asked to go & talk to some tranee gp's about what happened to me which I am more than willing to do if it helps someone else get the right treatment. My problem is it was the hospital that let things down & they had lall the facilities & konowledge to make the right dianosis.

[kelvz48]

Talking to trainee GP's sounds like an excellent idea.

Anything to raise awareness.

[Stuart]

"The number of road accident deaths in the UK has dropped to the lowest level since records began, according to government statistics that showed 2,538 fatalities last year."

I'm astounded that there are more SAH fatalities than road fatalities.

[kelvz48]

It really is quite shocking.

[Stuart]

My GP said that from now on he will always refer anyone with a thunderclap type headache to hospital regardless.

[kelvz48]

You would think that should be the "norm".

We are certainly the lucky ones.

[Liz D]

In Scotland the NHS 24 operators are trained to ask certain questions no matter what the person's ccomplaint is and one of those questions is "do you have a headache" and if the answer is yes it's followed by "did it come on suddenly". When my husband called NHS 24 and answered yes to these questions he was transferred to a nurse (who asked further questions and tried to speak with me) who told him what she suspected was wrong with me. She then called an ambulance and phoned ahead to the A&E department, warning them that a suspected SAH patient was on her way. I was quickly booked in and then transferred to a medical ward. The doctor (who was a colleague, I was a secretary at the same hospital) who attended to me did some checks and then told me that I was very sick. He called Edinburgh Western's Neuro department for advice. He was told to start treatment for a SAH (ie medications and drips), their advice is to carry out treatment for SAH if that's what's susupected rather than wait for a definit diagnosis.

That call handler at NHS 24 helped save my life as this was my second bleed and my aneurysm was dissecting the artery. My daughter works in the HR department of NHS 24 and never really understood why asking about a headache was included in their training, now she does!

I know I was very lucky, especially after what some people on this site had to go through before they were diagnosed. I'ts that simple question "did it come on suddenly" that should ring alarm bells with any doctor!

[kelvz48]

Liz, you are so right. A couple of simple questions.

[savingthebrain]

For some reason, the doctors here usually ask: "Is this the worst headache of your life?" More often than not, a person with an acute bleed would say yes.

But to be safe, if your gut says something is wrong, always push for a CT scan at the very least. A non-contrast CT is fast and doesn't need preparation. It may not clearly detect aneurysms but it'll tell you if there's blood in the brain or in the ventricles. Doctors should really practice pushing for CT scans, because unlike other organs that heal, brain tissue dies after 4-6 minutes without oxygen. Such a delicate, delicate organ... and one we can't take any chances with.

[Gill C]

Kath thats' interesting, I didn't know blood on the brain would show on a CT scan. I had a CT which came back clear as mine didn't burst so it was only found on an MRI 17 days later & even then not clearly until the angio was done.

[savingthebrain]

Gill,

Bleeding into the brain tissue or into the ventricles (such as in the case of a ruptured aneurysm) should show in the CT -- unless it is a very, very small bleed. If the bleed is new and the doctors want to determine if it progresses, they may order a repeat CT scan after a few hours.

Non-contrast CTs will not give you a good picture of blood vessels, however. It will not detect aneurysms that haven't ruptured, as these are blood vessels (arteries). To view blood vessels, you need a CT angiography. Or better yet, a 4-vessel angiography.

And of course, MRIs are the best. But they take longer to schedule and are expensive!

[KelBel]

Liz - you have just reminded me that I was also misdiagnosed by NHS Direct!

I had my initial SAH on Friday 11th Dec '09, whilst getting ready for my xmas do. It felt as if something went pop in my head and then I had a woolly/fuzzy head sensation and felt really hot... (the rest of that night is in my initial story so won't bore all with that again, but may re-write and add to my story and re-post at some point).

I was ill all day Sat (and taking paracetamol etc to try to get rid of head and neck pain, and then on Sunday 13th Dec I was woken at 4am by a sudden increased pain in the back of my head - like someone had whacked me round the back of my head/neck (which I also recall describing as if I had an axe embedded in my head...)

I logged on to my laptop and onto NHS direct, completed all details, then tried to go back to sleep as I couldn't find a diagnosis, and had to wait up to 5hrs for a callback...

I got a call at 9.30am... was asked lots of questions then got a call from a Dr, answered lots of questions again and was told to go to the walk-in clinic for full assessment, as it sounded like a virus...

I had a shower and got dressed, and drove myself (?!!!) to the walk-in clinic at midday.

I got told I had a virus, but because I started crying and saying I didn't think it was a virus and couldn't understand why my bp was so high, they made an appointment for 7pm (!) with an emergency Dr.

I drove home and sat in bed in severe pain for 7hrs... to then be told again that I had a virus... (why oh why did I not go to A&E? even my sister kept saying on the phone that maybe I should go... )

So all in all I was misdiagnosed 3 times!

I finally saw an experienced nurse, who really listens to your symptoms and makes notes, and was told to go to the local hospital to rule out a bleed in the brain on Tues 15th Dec.

So I did not get admitted to hospital until after midday on Tues 15th and did not have my op until 18th Dec!! No wonder I suffered severe vasospasm during my op... and the hospitals had incorrectly noted in my records that I had had my SAH on the 15th...

Pretty shocking really

I did complain about 3 months ago to both the walk-in clinic and the out of hours service, and I did receive a reply a few days ago from the out of hours service; who are willing to arrange a meeting to discuss any further concerns, I might just take them up on that! To raise the issue of more awareness needed if anything else!

I am so lucky to be alive, let alone alive without any physical disability!

Kel x

(sorry for rambling on... )

Edited October 13, 2010 by KelBel
sorry...

[Lin-lin]

My goodness Kel!

I'm so shocked by these stories.

I can't believe that some of you are here to tell the tale. You've really defied the odds.

I have no such horror story.

I collapsed in a public place; the hairdressers! Paramedics arrived at the scene before the hairdresser put the receiver back in the cradle! Apparently an ambulance was around the corner.

I was in A&E within minutes, diagnosed relatively quickly and then transferred to another hospital a few hours later.

I can't imagine the pain and stress that some of you experienced when your SAH first happened. I always appreciated that the speed of my diagnosis was good, but I hadn't factored that it was not the norm!

..and Kel...you drove your car!!!!??? As Dizzee Rascal says, 'Bonkers!'

Well done on your recovery and super human strength!

L xx

[kempse]

Well I certainly wish there was more awareness and cannot believe so many of us are misdiagnosed.

I had rung 999 whilst the heamorrhage was happening and stated to the operator that I thought I was having a stroke - had the word heamorrhage crossed my mind I would have told her that was what I was having, as I could feel the blood escaping in my head but it was all in vain as the paramedic did not send me to hospital.

To think that during that following week, I called the Doctor out to my house (something I had never done before) and visited him at his surgery 3 days later and called NHS Direct at 4am and saw an optician, I think it is quite shameful that no one gave me any diagnosis - let alone the correct one. I am proud to say that it was my parents, with no medical training whatsoever, that finally persuaded the Doctor to send me to hospital where I was finally diagnosed and operated on.

It's certainly a scary experience, which takes a long time to come to terms with, but I am eternally grateful that I fell in the right 50% although it does make you wonder how many are not in this figure with us through mis-diagnosis. I think you have raised a very valid question Kelvin.

Sarah

[kelvz48]

Yep Sarah, I was just thinking 50/50 is not very good odds to start with and to be misdiagnosed could put you in the wrong 50%.

As I've said, the first doctor I saw was a bit annoyed at being called out, forgot her stethoscope so could not take blood pressure (which by the way was 240 by the time I got to hospital) and diagnosed me as having flu like symptons. I had to make another 2 visits to my doctor (thanks to my wife) before I was sent to hospital.

Surely GP,s can grasp that any rational person would not visit a surgery or take up a doctors valuable time just to complain about a little headache.

[Vivien]

I kind of had the opposite problem, I had a really bad headache and was vomiting and thought it was a migraine brought on by spasms in my neck. After two days I hadn't got better, my husband and family thought that I was sleeping, when in fact I was unconcious. I woke up and couldn't remember my husbands name, he called our GP out who said he thought that I should go to hospital.. I moaned about it as I thought it was a migraine, but my GP insisted and basically saved my life. Even in A & E I kept insisting that I wanted to go home and when shown a CT scan of this huge area of blood in my brain I said that I was going outside for a cigarette

Vivien

[kelvz48]

Vivian, we dont like to impose do we.

Was that your last cigarette?

[Louise]

Me again.

My life was saved by an ambulance man, I was on the way to one hospital (Edin Royal) & he said I think this is something more divert to the Westrn, which was so good because they have the neuro unit.....(only been told all this ofcourse dont remember it)

[kelvz48]

Hey Louise, bet you were glad that ambulance man made that call.

Can I just say at this point, when I started this thread I was feeling a little angry about the circumstances leading up to my admission into hospital. I must highlight that the care I received during my stay in hospital (Frenchay, Bristol) was second to none and I can never thank the team there enough.

Feeling a lot calmer now - God bless the National Health Service.

It's good to talk.

[Liz D]

Hi Kel

I think you should take them up on that offer and ask them why NHS 24 in Scotland ask the question about a headache and the operators in England don't! NHS 24 has offices in Glasgow and the neuro services in Glasgow have just recently been expanded and it was input from this department that brought about this question. It's a simple question but the answer, dealt with properly, can save lives!

I had a CT scan in our local hospital straight away and they were looking for a bleed but they couldn't see anything, so I had to wait until the next day and was given a lumbar puncture and the fluid was full of blood. That's when everything moved very quickly and I was transferred to Edinburgh. However, the consultant neuroradiologist saw the bleed on the scan and I had had 2 large bleeds. So we are also at the mercy of the experience of the person looking at our scans!

[ninja]

Hi

Due to misdiagnosis I was in and out of the GPs surgery and hospital for a period of 3 weeks before they found out what was wrong and that was down to the wife creating havoc in the hospital resulting in me having a lumbar puncture and finding blood in my spinal fluid, within 24 hours I was coiled. I suffered thunderclap headaches for the whole period. Yes I was lucky to survive but even worse due to the misdiagnosis I was still driving and shudder to think what could have happened if I had caused an accident, how many lives could I have taken - a horrible thought!!!

Cheers

John