Mis Diagnosis

[Slim]

Hi Guys,

Reading the forums, it seems the majority of us had SAH's before that were mis/undiagnosed. Also some have had the SAH as a complication of a hospital procedure.

I was just wondering if anyone has taken this any further, if they feel they were taken seriously or even had an admission of fault or apology.

I've certainly been left with the attitude that these things happen, it is difficult to spot but we got it right the next time round so thats ok then. And your alive what more do you want! I am angry about it, this is another stage of the grieving process for the old me. If you are not already bitter or angry, please do not let me affect you. I am trying to get rid of it as quickly as possible just have some of these issues to work through. I don't think it is too much to want to hold someone accountable! Any way, trying to compose an objective letter to the orginal guy who in my opinion cocked up.

Will let you know how it goes.

Aine

[Janet]

Hi Aine

My anni was undiagnised for nearly a week but luckily they kept me in. My gripe was with the neuro specialist who looked at my CT/MRI scans on the Thursday by only holding them up to the sunlight and was suprised he couldn,t see anything.

The only good thing he did was take them back to Walton with him where it was found from the initial CT scan, the process could and should have been a lot quicker.

Janet

[ninja]

Hi

I started having my headaches on Christmas Day 2005 and was eventually coiled on January 13th 2006 over 2 weeks later. I was checked for meningitis and eventually they put the headaches down to my cervical spondylosis which I must admit I put into their heads because I thought it was. However I was admitted and discharged from hospital on 3 occasions with the headaches getting worse and worse, I was even driving with this going on in my head!!

Eventually after my wife caused a fuss I had a scan and lumbar puncture and they found I had a SAH, I was taken to another hospital where I was eventually coiled.

Yes the consultant in the first hospital did admit that "they got it wrong", whether thats written down is another matter.

I have not made any claim, I'm just happy to be alive and more or less headache free.

Cheers

John

[Louise]

I was going to say at least your still here to tell the story.

I had mengitis after I got out of hospital (a bug in the brain) but I wouldnt dream of sueing them - they saved my life, not once but twice....

Louise.xx

[Slim]

No guys you've picked me up wrong.

I'm not intending to sue the hospital, I basically would just like an apology and for no one else to go through this. I had 6 weeks between bleeds, think I had a minor one in between. Although I think I would be more than entitled to compensation as their mistake I feel has cost me quite dearly. Yes I am alive but am not the same person and quite frankly its the attitude that "Stuff" happens that gets me most.

The only reason I'm not sueing is because I really don't have the energy, I don't want to be consumed by this but I would like it to be taken seriously and no one should ever have to go through this again. I was led to believe that it is very rare among young people, this site proves different and i've also heard of lots of people in their twenties, what is scarily common is misdiagnosis, which did seem to happen more commonly to people admitted at a weekend, but I have no concrete proof of this so am just going to follow up what I know about.

Donald just read over and told me to add a bit. The diagnosis procedure usually involves a scan and if that is inconclusive they do a lumbar puncture. In my case scan didn't show up because of were anni is. The were unable to do a lumber puncture, So with text book symtoms I feel they should have tried something else as they couldn't do a check with the lumbar puncture. I could barely move as I left the hospital ward, I had to get Donald to bring me a wheel chair. I really can't understand how they discharged me in the shape I was in. Called Docs out on Sunday night got more Morphine. But easily that has been the most painful and distressing weekend of my life. Donald says that when i then went back in with the later anni the staff in the neuro ward were very surprised that they had not been consulted given the text book symtoms and the inabilty to get spinal fluid.

There is also a letter in my file stating that they are considering changing the procedures so that a similar situation will not occur and that an Angiogram will be carried out in such a case rather than discharged back to GP care. It would have been nice for them to tell me this rather than have it in a lettter hidden in a file.

Ta Aine

[Guest hellie]

i know what you mean, my mum was mis diagnosed 4 times in the space of 3 weeks. Her GP thought it was a migraine the first time. A&E thought it was sinusitis, the GP then said I dont know take these stronger pain killers and come back if it get no better. That time I phoned him and said I thought it was something serious but he made me feel stupid. 3 days later it was serious enough for an ambulance, but they still thought it was a stroke and moved her to a stroke ward.

I am still very angry, its been over a year now. I went to the GP a week after mum had her coiling and kicked up a fuss in the surgery, lucky for him he was on holiday but the manager was quite concerned to start with but that was only because he thought I wanted compensation.

The GP did phone me at home, but as you would expect I was at the hospital with mum, so he left a message with my 18 year old son to say sorry. abit of a cop out if you ask me. He did come to the hospital after I had asked him not to come as mum didnt want to see him, and wouldnt look at me, he just said he was sorry and had never seen a annurisum/heamorage in 25 years as a GP. GRRRRRRRRRHHHHHHHH

this makes me so angry remembering it all now, we are supposed to trust these people.

I think complaints should be made, otherwise many more SAH's will be mis diagnosed. I know of another lady since my mum who has gone to the same GP who was sent straight to hospital with a suspected bleed so I feel some good has come from the fuss I made.

As you say though whats done is done and you have to move on and not let it eat away at you. I feel abit of a fraud and can only imagine how you can cope with it.

Well I hope your letter goes well

all the best

Hellie

[Guest Portia del Carmen]

I've had 2 SAH's and was misdiagnosed both times... it seems odd in a way that those of us who are still here to tell the story seem to have had the same experience - maybe there is something about the level of symptoms/ ability to recover which leads doctors to the wrong conclusion.

I am still to an extent unhappy, although not angry about the misdiagnosis, and it has made me to a degree cycnical and circumspect about what I am told by a doctor.

The first time, in 2003, I had all the classic symptoms... the "worst headache in the world," nausea/sickness, photophobia and stiff neck. The paramedic who first saw me thought it was food poisoning because of the sickness -ignored all the other symptoms and this "diagnosis" clearly filtered through to the junior A&E doctor who sent me home with painkillers for the headache and told me it was food poisoning. Obviously still ignoring the obvious symptoms of cerebral irritation which most people assume was menangitis-type symptomology. Don't get me started on whether you should send someone who might have food poisoning home with painkillers, either.

Anyway, over the next 2 days I got worse - apparently, I can't remember. My (now) husband took me to a private GP (it was the weekend by now) who immediately spotted the obvious symptoms and referred me back to the same hospital where I'd been in A&E. The neurologist who saw me was really quite outspoken about the treatment I'd had in A&E and I was transferred to the National Hospital. Thankfully.

The 2nd time (end Jan this year) I had unusual symptoms. No headache(!) but felt like I had flu and some balance/ neck/ back pain. I realise now my back and neck felt wierd because of blood heading down the spinal column... Attended GP who knows (a) medical history and ( the existence of other annies - who refused to refer me for private physio (which would have spotted the back pain was not normal) and told me I had an ear infection. He told me to take Sudafed (which puts up your blood pressure...)

After the weekend I had entered full vasospasm mode - couldn't use the right words and again the GP said "it's viral" but go to A&E - who admitted me under a cardiologist (!) didn't do what you're supposed to do for someone with suspected cerebral "accident" (lie flat, consider Nimodipene, etc.) they refused/failed to speak to my consultant at the National, refused to transfer me there even privately ("we're not here to fund someone else's private practice") and the discharged me home before the 2nd round of results from lumbar puncture. I was so far (about a week) from the bleed that the scan results were inconclusive but they sent me home before ringing me up to say they'd just had my lumbar results back and I had to go back into hospital...

That all felt very cathartic to write. I like to think I'm not angry - after all, I'm still here. There must be something which led to me being able to survive. However, I do intend now to exercise extreme caution when going to a doctor - even my GP has now written to me telling me I've been diagnosed with hypertension (I haven't) and that they need to check my BP (they did a month ago) and nothing from them to say "hope you're OK after nearly dying for the 2nd time." Maybe I am angry after all...

I should add that there is absolutely nothing which can be complaied about about the treatment at the National Hospital -who actually know what they're doing, care about it (and most importantly the patient and supporting cast) and when they're not sure about something tell you that, rather than a cardiologist at Hemel Hempstead arriving to tell you complete rubbish about a scan result which he doesn't understand.

Yes, actually, still angry. An apology at any stage is always a bonus. Doctors don't seem to see that.

[sue]

Hi Guys,

can def go with you all on misdiagnosis, was in church, just sat down when my "big pain" hit me, ended up collapsed on the floor (though not properly unconscious) was taken to hospital where I happened to mention in the state I was in that my uncle had died in the same hospital the day before, was told I probably had a stress headache!!!

Sent home, to cut a VERY! long story short, 4 days and 4 GPs later my husband sent for an ambulance as I was getting worse and THEN only then did I get my CT scan that put me in the right place in the right hospital!!

Hey, went from migraine, to suspected meningitis but only my daughter thought I'd had a brain heamorrhage, she even phoned our GP to tell him so!!!

He felt that she was over reacting??? mmm..... don't think so!!!

Anyway, didn't complain, cos i'm here to tell the tale.

Love to you all. Suexx

[Karen]

Hi,

I think that a lot of us have a similar story to tell .... I don't think that you'll get a Doctor to say "sorry", as it's an admittance of liability and in this day an age of a "suing" culture, it's probably not a word that you'll hear.

However, the GP that didn't act when I was ill, doesn't seem to be at our local Practice anymore .... Eric complained to the Practice Manager when I was in hospital, about his lack of action, even though I'd had a probable warning bleed 4 years earlier and he had that info.

I wouldn't dream of suing anybody, as I know that it would take away yet more valuable resources from the NHS and wouldn't want to feel responsible for that..... but if Eric's actions help anybody else to get earlier treatment, then I'm as happy as I can be.

I've probably now got "troublemaker" plastered across my records....

If the GP had got me in to the hospital when he said he would, then more than likely I wouldn't have had the seizures and wouldn't have had the eyesight problems. Those extra 4 days of stalling, cost me a lot .... Yes, I was angry, but you have to move on or become bitter .... nothing is going to change what has happened to you.

[Guest michael's girl]

This angers me as for some 19 days we went through a series of mis- diagnosises. I watch my partner feel and look awful, hes always put up with bad head aches but this one was awful plus the sickness and pain in neck and back, plus as I know realize it was classic pre bleed and had this been spotted early Michael wouldnt still be in hospital now. We had everything from well neck sprain and wiplash and discitus, and no more then (no MRI) 2 xrays and some blood taken. I would so like to take them to court but feel it wouldnt be worth it and well like was said b4 the nhs is stretched enough. Just one brain scan or a lumbar puncture when he was first admited would have shown blood in csf. I think what is needed is a leaflet for the public and gps making them aware of the situation and the classic signs of a SAH........ I mean he presesnted with a popping in his head then the worst head ache in the world then sickness and stiffness in neck and back and pain in thos areas. i just dont get it. He went on for 2 and half weeks like this until the big one hit. A CT or a lumbar puncture when first in hospital would have saved the nhs alot of capital. im thankful he got transfered to a center for neurology in cardiff and the have him great there.

I know its not worth it to try to make someon pay or for and appology as I have a mate who complained and took the gp to court over her sons menigitus which was misdiagnosed and she lost so y bother, we just have to be thankfull we r still here and hes still here.

xxxxxxxxxxxxxxx

[Guest michael's girl]

This is what is needed!!!!!!! like the ones for aids and for other ailments. but I think there has to be some awareness both on behalf of gps and of A&Es.....

[rince]

I was "lucky" and was in a specialist unit within hours of my SAH. I had a CT scan at my local hospital, as ordered by the consultant in A&E. That showed a bleed. If it is just a matter of being scaned or a lumbar puncture then EVERYONE who presents at a hospital with the classic symptons should receive one or both. I have been told that time isn't important in terms of hours but days without treatment can be fatal (don't know how true that is because I don't know what to believe). I do know that they do leave a period of time from the initial bleed before attempting a coiling but I'm not sure why.

[bogbrush]

Considering that re-bleeding has such a high mortality rate, time is absolutely critical. The sooner a diagnosis is made, the sooner management of SAH can begin. Priority is to prevent re-bleeding and although coiling/clipping ultimately achieves this, there are other things that can be done by proper medical management to prevent re-bleeding. CT scanning should be mandatory for any suspicion of SAH, so the doctors know what they are dealing with from the outset.

I am here today, in spite of, not because of the A&E doctors at my local hospital, which I believe is the same hospital you were admitted to Scott?

Regards

Keith

[rince]

Yep Keith the North Hants, or Basingstoke Hospital to everyone else. The first mention apparently of SAH was by the paramedic who attended but the first Dr was more interested in my history of drug use (asked my wife the same question over and over "what has he taken?"). The consultant saw me for five minutes and ordered the CT scan.

[bogbrush]

It was the early hours of a bank holiday when I went in .... no consultant in sight, hence migraine diagnosed and no CT scan until many hours later after my second bleed.

Regards

Keith

[Blondie]

It's terrifying to think about the impact it can have to not be correctly diagnosed. I was really really lucky - I was whizzed through RUH's A&E and the first doctor I saw sussed it all out straight away, and I was sent off for a CT scan, and then whizzed off to Frenchay.

[Louise]

Hi there

Yes it can be quite an inpact if there's a miss diagnoses, I was lucky to have 2 brilliant ambulance men who realized that something was up they got me to the right hospital.

The otherside of the coin was Ronnie's young cousin, they miss diagnosed her twice, then the CT scanner wasnt working......

Louise.xxx