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Did anyone else get misdiagnosed at first?


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Hi all

I appreciate that I cannot and would not ask for legal advice, but I have complained to my hospital about why it took 48 hours to perform a ct scan to detect my intra cerebral haemorrhage, and subsequent hydrocephalus, but Having met with doctors, there seems to be a massive cover up with doctors supporting doctors and at a recent meeting I felt truly ganged up on by everyone there :(

As anyone else experienced this?

Many thanks Jo

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I was they were saying it was a hangover from the Saturday morning till the Wednesday night then they transferred me when they found blood in the spinal fluid. My mom did write a letter of complaint but never received a reply and I told her to forget it. Jess.xxx

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I had good care by surgeon but my family took it in turns to make sure I was cared for properly.

After care was a let down, just a few bad eggs !! but I was in cuckoo land so it was all dream like.

Glad I never knew really !!

I remember one nice nurse, she said "I wont let no one hurt you" and they said I sang to her.

Be Well and smile.

WinB143

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Apparently I was quite hysterical when I got to a&e so they gave me morphine. As a result, I had no reflexes so when the doctor came to me he diagnosed a seizure. My partner kept insisting that I don't have seizures and that my Mum had died from sah and he thought I may be having a brain haemorrhage.

It was 4 hours later that they decided to send me for a scan as a seizure should have passed by then. Of course, they found a bleed like my partner had been telling them for hours.

Looking back on it, it was early Sunday morning and no doubt they get a lot of hysterical people still drunk from the night before perhaps. It's not an excuse really, but they came good for me in the end and here I am which is 100% more than I can say for my Mum.

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I didn't get a ct scan for 10 days after the pain behind my eye. Even then it was clear. It took another 4 or so weeks to be diagnosed. One of my friends is a gp and she kept saying I should sue but nothing that happened would have made up for issues I have post op.

I have to say initially I was diagnosed with migraine and didn't have classic Sah symptoms apart from the severe head pain but then my anni didn't rupture.

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Hi Jo,

In my case it took 144 hours from ringing 999 to getting a scan and then approximately another 60 hours before I was operated on (due to it being the weekend and not so many surgeons work at weekends) - not very satisfactory really. I would probably have taken matters further if this time delay had left me with any disability that prevented me from working or leading a normal life. Thankfully, the severe vasospasm which I had during the delay didn't result in too much damage.

I did ask my gp to write to the ambulance service on my behalf airing my concerns about not sending me to hospital when I rang 999 and whilst he told me that he had done this, I never heard any more. An apology would have been nice!

Sarah

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My SAH occurred on a Friday around lunchtime. I had the trade mark thunderclap headache followed by pain and muted hearing along with stiff neck.

I was able to make my way to an emergency appointment at my GPs surgery. Visiting the doctor is something that was a extremely rare event for me. I explained all my symptoms, he took my BP (which was very high) and came to the conclusion that I was having a migraine! I told him that I do not suffer migraine and in fact that I very rarely get any kind of headaches. But he stuck to his diagnosis, and told me that he would make me an appointment at the migraine clinic.

Thankfully my wife and son could both see that all was not right, and they both insisted that I go to A&E. After a couple of hours of further pain I eventually agreed.

The Doctor in A&E was told exactly what happened to me. He carried out the usual BP checks and checked my pupil reactions and mobility and strength. When he asked me to score my pain out of 10, he looked very surprised and almost unconvinced when I told him it was definitely a 10!

He decided to admit me to a ward for the night. Apart from the nurses checking my BP at regular intervals, nothing else was done and there was never any comment made as to what the problem might be.

I was finally sent for a scan the next day. That's when things changed, Doctors eventually took me seriously and there was a sudden change in their attitude and urgency. Fortunately for me I was immediately transferred to the RVI in Newcastle, where I was given a further more detailed scan. This confirmed I had suffered an SAH, and I was scheduled for surgery the following day.

Needless to say that my GP is no longer my GP.

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Hi Jo don't give up on your complaint it will all be in your notes go with your gut instinct on this.

I always feel shocked when I read of people's misdiagnosis, the survival stats are so poor but to be misdiagnosed is truly shocking.

I collapsed within 2 minutes of my bleed. I knew I had to tell someone (quickly) where the pain was, how bad it was, my name phone number etc and that's all I remember. My husband had arrived at the hospital first (he had been told I had feinted) he knew it was really bad as I was whisked straight though for an immediate CT scan with urgency.

I often wonder what the outcome would have been if I hadn't collapsed and hadn't got that immediate CT scan.

I also wonder how many deaths there are from misdiagnosed bleeds.

I would keep everything in writing as too stressful complaining face to face.

Good luck.

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Wow. I was very fortunate. I didn't go in right away because I thought I was being silly to go to the ER for a stupid headache even though the pain was excrutiating. When I did, within ten minutes they had me in and within 20 minutes I was getting a CT scan and was immediately admitted. Such a blessing that they have a good neurology program at Providence Hospital in Everett, WA. I even had a former student perform the CT scan and she was an A+ student so I know she did an amazing job.

I guess if a person were considering a lawsuit they'd have to weigh the benefit vs the stress. Compared to some of you I am doing fantastic, but that kind of stress would send me off the deep end. I don't think it would be worth it, although I wouldn't want to see it happen to anyone else. It's a hard call.

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I walked into the ER and basically told the check in person I thought I was having a stroke. She probably didn't take me seriously and sent me to the waiting room where I waited to be seen for two hours. Once I was finally seen, I had a CT scan and an MRI and then a spinal tap. Once I had the spinal tap, the decision to transfer me to a hospital in Seattle was made at once.

Interestingly, I went by ambulance, which drove around through Tacoma and up to Seattle, a 75 mile trip. I was hoping for lights and siren, but no such luck. The only other option would have been by ferry (an hour's ride at best and probably not even available at that time of night) or the Life Flight helicopter. I remember thinking if they took the helicopter, I was determined to enjoy the ride even with that horrible headache. I've never been on a helicopter.

I got to Seattle on Saturday morning and I always thought they operated Sunday morning. Now I'm thinking they actually did do the coiling on Saturday, as I got to the hospital at about 6am. It's amazing what I can't remember about any of that. I also can't remember if I had a headache when I got to Seattle.

I do know I texted people I knew and said I was in the hospital with an aneurysm, naturally not bothering to explain anything and scaring everyone to death, especially as the battery in my phone gave out and it was another day till anyone knew how I was doing.

I do know, though, that the next time I go into the hospital with anything serious, it's going to be by ambulance and I'll definitely be making more noise about my situation!

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One of the lucky ones I guess in when I collapsed and the symptoms I was showing made connecting the dots easier.

But I understand that having a haemorrhage can make them think your either very drunk, or on drugs, or just a pest because your doing mad stuff. maybe not the best of ways to explain.

However I had been going back and forth to the GP with headaches and those were put down to stress...which obvious now was wrong.

take care

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My headache started completely suddenly with no prior warning whatsoever on a Tuesday evening. Just sitting, innocently checking my emails (we'd been away for my daughter's wedding the previous extended weekend) and I was happy and relaxed, expecting to get changed and go out for a meal with my step-daughter who had come back with us.

Then - wham, some ghost came up and whanged me over the head with a cast iron frying pan. The neck pain followed within seconds. I just remember sitting there feeling stunned and thinking that this was so awful it could not last - but it went on. I had the presence of mind to wonder if I was having a stroke so I moved all my limbs one by one and they all worked.

I was already upstairs in the study and my only instinct was to get to bed and lie down - how I got there, I have no recollection of, but I did. I called out to my husband from there (he tells me) and he rang the GP and got through to the Duty doctors.

They spoke to me, then him and told him I had a migraine and he was to give me some painkillers and let me sleep. An hour later, he rang again and the process was repeated but I had lost the will to argue - even though my mind was telling me this was something awful - not a migraine.

The following morning, according to the notes he sent other members of my family at the time, I got up and had a bath at 7.30 - not like me as I am usually pretty rubbish in the morning! I truly cannot remember doing that or anything else that happened for about 10 days.

But I was due to drive the village community bus that morning so it seems something in my brain was still working. My husband put me back into bed and went and drove the bus for me. When he came back, I was up, dressed and downstairs - but seemed to have no idea who he was. This was 1.30 pm the following day. He again rang the GP and described me and an ambulance was sent immediately.

I am relying solely on my husband's notes about what happened thereafter but, by 5pm, following a CT scan, I was in another ambulance en route to another hospital. He was told by a nurse at the first hospital that it was "lucky" I had been sent for a scan, as many doctors would not have bothered.

At the second hospital, I was taken immediately into the operating room (or what ever they call it) and a drain inserted. The following day they coiled the aneurysm. Then they battled for a week or so to stabilise me - my sodium levels were dangerously low - and the drain took ages to work - three attempts before they finally turned it off.

Was I "mis-diagnosed"? Well, yes, by the Duty doctor who decided over the phone that it was just a migraine. But that could be down to lack of urgency on my husband's part and my inability to remonstrate. I do find it distressing that someone thought is was simply "lucky" that I'd been sent for a CT scan - it really shouldn't be down to luck as to which doctor you come across.

I was not mis-diagnosed following the scan and I am, now, truly grateful to all those people who fought for me and, dare I say, with me. They told me then I had had a near-death experience. They told me afterwards I had made a remarkable recovery.

The aftercare? - well that's another story - and the journey to some acceptance of the resultant damage which no-one helps with.

But I am glad I'm alive now, despite moments of despair that I am not as I was.

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It is not uncommon that you weren't diagnosed correctly for SAH. My friend walked around for days until her family made her go to the doctor and then they finally figured it out.

Our symptoms are so evasive and often look like something else like a migraine, Seizures, RA or whatever. If you have a one sided physical symptom, they do better. There needs to be more education of ER and primary care doc.s

~Kris

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Hi Jo

My case was not misdiagnosis as such just significant delay in doing a ct scan. When I was admitted 3 years ago now with what turned out to be a subarachnoid haemorrhage it was 11 p.m. at night. it took doctors until almost 2 pm the following afternoon to do a scan after many hours deliberating over whether they should do a lumber puncture or not.

As the accepted wisdom seemed to be that time was of the essence when dealing with brain injuries I found this delay very worrying. I suppose in the end I was so relieved i had survived the esperience I chose not to pursue the matter further and concentrate on my own recovery which with hindsight was perhaps not the best action given that unfortunately there would undoubtedly be other patients treated by these doctors

Ian

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  • 5 weeks later...

Hi this is my first reply or post on here so please bear with me. I too was misdiagnosed when I had my sah in December last year. I was at work on the Monday when it happened. Having collapsed on the floor the ambulance was called but despite explaining the thunderclap headache, aversion to light and nausia they said i had sinusitis and told my husband to take me home and keep me topped up with anti sickness, sinutab, menthol crystals and beechams.

Still at home on the Wednesday i was slipping in and out of consciousness, couldn't walk, thunderclap headache i told my husband to call another ambulance which he did! They arrived examined me, read the previous crews report then said that I had been misdiagnosed I remember saying to them I didn't know you could feel this ill and still be alive when to my horror they said I didn't have sinusitis I had a virus and if I didn't feel better in 48hrs to ring my GP then they walked out of the door.

On the Thursday my husband demanded a doctors appointment, he took one look at me and told my husband to get me to hospital immediately with a letter he gave us. I was seen in A&E within ten minutes, examined and put in a dark room to protect my eyes from the light. I was given a lumber puncture at 10pm that night then woken at 1am to be told that it was positive and they had just phoned for an ambulance to transfer me to Nottingham.

I was driven with blue lights and sirens arriving at Nottingham at four in the morning when they started CTs etc. The results of the CT showed a bleed from an oversized irregular shaped aneurysm in the anterior communicating artery which unfortunately due to its location had bled onto both sides of my brain. It took three surgeons,all working from different angles and nine hours in surgery to stop the bleed and fit the coils.

I spent three weeks in hospital over Christmas being called wonder woman by the docs and my surgeons but I made it and they didn't think I would so despite the misdiagnosis I've had my winning lottery ticket even though someone was trying to throw it away.

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I collapsed at home in September 2011. Was unconscious for about 15 minutes, bought round by paramedics. Vomited and could not stand without help. My son and daughter were told I had suffered a panic attack! I explained I had a pain in the back of my head and paramedic made the statement ' you don't want to go to hospital do you?' Believe me it was a statement not a question.

This was 11.30pm. I was constantly sick through the night and my daughter called my doctor out the next day. She looked at me and called an ambulance. The hospital treatment at Heartlands and QE was excellent however I do feel lucky to have made it that far....thank goodness we are all here to tell the tale!

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