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My Mum one year on....


Guest hellie
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Guest hellie

Hi all,

I have been looking at this site for a week or so now and have just plucked up the courage to say hi.

Its a year this week since my mum had her SAH, well i say a year, i mean a year since it was diagnosed. The bleed (week 1)was at first said to be a migraine, (week 2) i then took her to hospital to be told it was sinusitis and then (third week) was told " I dont really know take these stronger pain killers" i spoke to the Dr later and he said it can't be a tumour or a stroke, but could give us no idea. Well needless to say i now have no faith at all in our local GP. It was the third weekend that mum had a second bleed and that time it was a job for the ambulance, it was so scary, dad rung me at 11pm, hes hopeless in a crisis, anyway we got to the hospital and it was touch and go for a while. Mum was still able to speak. Anyway to cut a long story short Mum was transfered to Frenchay hospital the following day and had the anny coiled the day after that, it was touch and go for a while but mum was in Frenchay for 10 days and back to Yeovil hospital for a week. Frenchay was a wonderfull place the nurses im sure must be angels.

Now this is where I get very frustated, I feel like we have been dumped. the only followup mum has had was six weeks later she had a angiogram at frenchay and thats it. Is this normal? She goes to the GP to get bp and cholesterol checked regularly which she get very angry about, and boy can she swear now lol, you have to laugh sometimes or im sure i would go mad.

So all in all Mum is doing so well, she's tired but had returned to work, for 6 hours a week, but she has just had a very bad chest infection ( Dr said nearly pneumonia) ****** Drs.

I see from this site it is very common to be miss diagnosed, i still get so angry with my soon to be ex GP.

Any way thanks for this brilliant web site, sorry if ive put this on the wrong bit but I seem to have a touch of verbal diarrhoea :oops: and I couldnt stop

Wish you all the very best

Luv Hellie

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Hi Hellie and welcome.....

Can't believe that you had to pluck up courage to talk to us......we're all very nice, honestly! :lol:

Mis-diagnosis is something that the majority of us have had ..... saying that, probably if all GP's sent all of their patients into casualty that were complaining of a bad headache etc....casualty would probably be stretched to the limit .... however, as SAH is extremely serious and can be fatal, it's not something to be taken lightly. The fatality rate from SAH is high, due to the initial prognosis by GP's and their lack of action. After experiencing this a 2nd time around, if it happened again, then I would go straight to casualty and bypass the GP completely.....you learn to trust your instincts once you've gone through this sort of illness. If I had been admitted earlier, then I'm sure that I wouldn't have had all of the physical problems that I have now.....rant over! :)

There does seem to be a lack of aftercare once you've been "fixed" and released from hospital......it's important to find a good GP who'll keep an eye on your blood pressure, cholesterol and hopefully your mental health. It's quite common to experience anxiety and depression post SAH/Stroke, so a decent GP will ask you how you are and how you're coping. Any re-hab is normally carried out by GP referral to your local hospital.......recovery is ongoing and I'm 19 months post SAH and I've experienced recovery throughout this time. Don't be told that there is a set time limit, as everybody recovers at their own pace. If your Mum needs help with anything, she needs to see her GP who should refer her to the local hospital. She shouldn't be worried about seeking help and a good GP is worth their weight in gold.

I haven't been able to return to work, as I still have problems, but fatigue is very common for many years after a SAH.

Hellie, can I ask how old you are? I have a son and daughter, aged 20 and 16 and I know how hard it's been from them.....it's a worrying time for everyone involved and it takes quite a while to find a bit of normality.

Great to hear from you and glad that you plucked up the courage to talk to us..... :wink:

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Guest hellie

Thanks for your reply, and I can tell you are a lovely bunch :)

I will be 40 in June and ive got two boys, one was 20 yesterday and the other is 18, my Mum is 57.

I have asked my Mums GP if he could get her some help from headway or a similar group because i think she would benefit from talking to others like her, but he has done nothing. Oh he did send her to the gym.

I must stop moaning lol, it seems ive turned into Victor Meldrew lately

Thanks again n be back soon

luv Hellie

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Hi Hellie,

Thanks for telling me your age! Sorry to seem nosey (even though I am anyway! :lol: ) but it's easier to know what sort of reply to give..

Are you able to encourage your Mum to come onto this site? Some of us meet up in a pub in Basingstoke with our partners, every other month on a Friday evening, we have a drink or two and a meal........it's quite therapeutic. We don't tend to talk loads about SAH, it's more of a social evening, but it's lovely to have the contact.....it's very informal. You don't live too far away from me.....I'm in Wimborne, Dorset. We could set up more of these types of meets locally, but it depends if anybody is interested.

Have you tried the Different Strokes website to see if they have any support groups local to your area? They are also excellent. I think that most of us have found the support from others in the same boat very helpful in our recovery.....it's good to talk....hope that you can encourage your Mum to come on board with us.

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Guest dirtypunk1970

Oi Oi!

Yes I got frustrated, too. Although it wasn't my GP who cocked up, it was the hospital who sent me home twice telling me I just had a migraine...That lasted nearly two weeks????? I couldn't accept that such an intense pain could last so long, and cause such disorientation.

All I was told when I was finally discharged for the last time was "There's nothing we can do, we can't give you any medicine to make your co-ordination come back. You'd be better off in your own surroundings" :?

When I got home from hospital all I did was sit down and cry.. For my poor bleeding brain, the fact that I could have died, and I still wasn't really sure if I'd ever get any better. It wasn't until I was told about this site that I realised I wasn't completely on my own with this thing.

It DOES get better...eventually.

Dirtypunk1970 xx

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Hi there

And welcome to the site Hellie.

Think I was one of the lucky ones because it was the quick thinking ambulance men that saved my life & got me to the right hospital.

However I do know what its like on the mis-diagnosis front Ronnie's cousin was mis-diagnosed then when finally they realised the CT scanner was broken so have the otherside of the coin too.

Take care

Louise.

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Guest Hannah

Hi Hellie,

Welcome, just thought I'd chip in from another 'daughters' point of view.

We also has a mis diagnosis too. On the day mum first got sick we got the GP out who diagnosed food poisoning.... two days later he thought the food poisoning was so bad she may need to go to the hospital to be rehydrated. My dad kept commenting on the strange 'starey' eyes and stiff neck so the GP thought it could be meningitis... admitted - CT - operated on within 12 hours.

I suppose your average GP would not necessarily think of a haemorrhage with the S + D symptoms. He has since apologised profusely and I think he will be a good GP to have in the community when mum is finally released for hospital.

We had a period of time between leaving the acute stroke unit and securing a place in the rehab unit when there was a deafening silence in terms of support or next steps. The worry and anger my dad and I went through when we thought that she was was going to be left at home was huge. It was out constant noise and pushing which has led her to getting the treatment and support she needed.

I do know that she when she returns home she will be back into the same dissapointing authority... and that worries me. I think the relationship with the GP is the key to getting support/counselling so I concur with Karen in the benefits of finding a good one.

Some hospitals have counselling/neuro psychotherapists attached to the stroke unit which a good GP should be able to refer your mum to.

Take care

Hannahx

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  • 4 weeks later...
Guest Marian

Hi Hannah,

It's your nutty mum, here don't foget I am finallly discharged on 29th May so I willl need this site quite a lot I think-you will have to show me how to use it properly on won't you?

Lots of Love Mum XXXXX

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Hi Hannah's Mum! :) aka Marian :lol:

We'll look forward to talking to you and bet you can't wait to finally get home!

You'll have to come and chat with us in the Green Room ... :)

Hope that your weekend is going okay....

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Guest hellie

Hi there,

I have been writing a little blow by blow account of Mums SAH and thought i would add something here as it jogged my memory. Its very odd, not sure if thats the right word, but here it is.

My mums name is Shirley, my Dads brother also married a Shirley, so now we have 2 Shirley Eeles's.

Now considering that Drs say SAH is very uncommon, whats the chances of them both having a one. Well my Auntie Shirley also and a SAH ten years ago. She has also made a full recovery :D .

Well that it for now folks, time for bed :roll:

be back soon

Luv Hellie

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hello there Hellie how you and your mum doing?

Yep like the rest of us I was misdiagnosised. Migraine the first time and I still have a pretty big chip about it, now waiting to calm down a bit but I'm definitely writing to the hospital. My Gp suspected a bleed right away and I feel i had all the typical symptoms explosion in my head, worst pain ever, vomiting, photophobia etc. I had returned to work 6 weeks after that first bleed we now know I had 2 other mini ones inbetween as well. I was very angry as i felt relatively unscathed the first time and now have had to go through all this. I'm trying to stop this thinking, its unhealthly and realistically I don't know how things would have turned out before. I would still have had to have an angio and have the coiling done.

Sah's being rare, I'm 31 and was told I was v young, unexpected blah blah blah. I've since heard about 4 or 5 other young survivers. And since mine a few folk in my home town which is small have had SAH's!!

I also now swear like a trooper and have a temper. I would have used the odd swear world before but now especially if I'm cross or have been pushed its very colourful. My brother and my husband used to wind me up for craic as I was bit of a goody two shoes before. Anyway on the plus side thats calming down now alot. As such just over all I really don't recognise the person I was at christmas. Big cheesy platitude but time REALLY is a great healer.

All the best to you and your mum

Aine xox

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Aine, Hellie the same here .... I know quite a few people that know others that have had a SAH .... I don't think that it's quite so uncommon as we're led to believe.....may be not as common as the clotting type of stroke, but it makes you wonder why the alarm bells don't ring with GP's when they're making their initial diagnosis? Yes, it's fairly rare, but it's definetly not that uncommon.

I just hope that my own GP practice have now brushed up on the subject .... Eric made a complaint to them when I was in hospital, about the fact that I'd had a probable warning bleed 4 yrs earlier and that this factor wasn't taken into account by the Doc. I was quite surprised that Eric did this, as he's not normally a person to do this type of thing....but the Practice said that they would sort it out, "in house" as such and he left it at that. It wasn't the case of suing anybody, but the case of not wanting anybody else to have to suffer the same. It's funny though, that the Doc who I had the problems with, no longer seems to be working there.

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