EMERDALE.CAIN DINGLE PORTRAYED A BRAIN ANYURISM, TBI survivors ALIKE ARE NOT HAPPY

OH fellow survivors. I am in a group ON Face book called Brain Heamorage Support. it is like this group a great help. well in the soap a actor suffered ablow to the head some months ago. he recoverd with none of our after affects. he then started having headaches., a few little blackouts and forgot a couple of things. storey cut short. he had a bulging vessel and had to have opp and one charectore said oh relative had that and had I thing up his groin and he was fine, easy op/... Cain Dingle went in and had op . He sounded so blarzay about it . oh just up thru groin and I am fine, he came out the next day . turned upat his house . said he was fine and then int pub??? er HELLO. I havnt chatted to one survivor who has NOT had some sort of knock on affect ;iLke memmory changes or cognative problems . Pleas you will have to see the soap to get the jist but please fill us in. has anybody had this op and it has been straight forward , and NO conditions or things affected afterwards as we don't want to hear from those who tell us you can have it and suffer nothing who have never had the opp or ABI or Stroke. HEADWAY your imput. knowledge support on this would be most helpful.

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  • Hi, I watch Emmerdale and have found the story very misleading. On the 3 occasions I've had the groin treatment, the doc advised.....you MUST rest for at least 3 days. This Emmerdale storyline is very misleading especially for those of us trying to explain our hidden disabilities. I always thought TV programmes were suppose to portray facts and correct ones at that

  • I too watch Emmerdale and Coronation Street. they are my guilty sins. A character in Corrie, Jim McDonald had the precise same accident as myself some years ago. He fell twenty feet onto his head on a building site. In the same soap, David Platt developed epilepsy. Both soaps stuck with the respective storylines for a week or two and then moved on.

    I share your concerns, however, it's soapland and I'm afraid any storyline is never allowed to 'drag' on for too long. Jim McDonald could never be shown to attend endless hospital appointments, endure therapy over weeks, months and years, etc, etc. David Platt could never be shown weaning himself on and off various medications over a quite possibly staggering length of time until the right combination was found. Let's be honest here, it's hardly entertaining living through it, watching it would be torture for the 'layman'.

    I appreciate that reality and the lack of it where health related matters are concerned is frustrating when you view it on tv, but to be honest, merely touching on the topic and brushing with reality is better than pretending it simply never happens.

  • while watching these programs is interesting it is better to remember nothing is real it is make believe stories.i would suggest you ask people how know like headway or other groups like it

  • one of my guilty sins, watching the soaps. What really gets me though they way the script writers have portrayed Cain - is that I't misleads people who've never had met anybody, or had a brain injury themselves. so as said elsewhere on many an occasion - you can walk and talk so what's the problem?

    Just wait a few weeks/months and lets see if 'his' personality/ memory/ vision/ appetite etc etc., - all or any of - start to show signs of deterioration! shall we take bets?

  • yes you are both right in what you say but sadly we are against other people in this world thinking a TBI or any Brain Poorly is all in our heads! We look ok so we must be.?? Soaps. media, music artist s ,idols etc are ways of getting the rest of the people who do not have an understanding to get one!. you put a information panflet or documentary infront of them ,unless they have an intrest they wont want to read/watch. but incorporating it into the things people do watch is away farward but must be the right information. surly. It is not like James Bond like the stunts he does is so OTT and as if!., we know it is far fetched but illnesses have to be shown realistically or it will be leart about the WRONG WAY

  • zainey: 'brain poorly' is such a lovely term! Might also suit those labelled as having 'mental health problems'. Don't know why but I hate that phrase, am I the only one to dislike it?

  • Make believe stories making folks BELIEVE THE WRONG THING . hey ho. on we go x

  • I thought they'd been fairly accurate with the Coronation st. 'Nick Tilsley' character but I see that now, after a shaky start, he's back to his old self.

    And though there's a big problem with us looking fine but feeling crap I don't think that's what they're conveying ; I think they could have shown a few glimpses of the residual issues he would still have if the story were to be believable.

    And yes Zainey, I had the brain coiling which is performed through the groin, and I was hospitalised for over 2 months. Now, 3 years on, I still have after-effects which won't be going away, but that's a result of the bleed, not the coiling.

    It might be the case that an un-ruptured aneurysm can be dealt with that swiftly but I'll have to Google it to be sure. xx

  • Apparently there aren't any symptoms of an un-ruptured aneurysm (unless it ruptures).

    Still not sure of the motives for screening this topic ?? xx

  • Cat: I was just looking at brain and spine org site and found this on SAH:

    brainandspine.org.uk/sites/...

    I wonder if you've seen it and whether you could add to it/advise or feed back?

    I've got to page 21 and WOW: I posted about tickles and burning in my brain here asking if others have, and here is the FIRST reference I've found anywhere about tickles (sadly still not found mention anywhere of burning,mine gets SO bad sometimes and headache pills don't touch it).

    Here's the bit from bottom right p21:

    "Unusual sensations

    People often say that they experience odd or unusual sensations in their brain which are different from headaches. They are very difficult to explain but people sometimes describe them as “tickly” and something like water running across the surface of the brain. No-one knows why these sensations occur but they are common and are nothing to be concerned about. They will usually ease in time."

    Made me feel good, some people somewhere must have bits of what I have. Why don't docs know?

    But STILL no info on why my skin suddenly changed after op. Something they injected into me? What? Can't see what else. ? Coz straight after op my tough skin suddenly changed so it tore SO easily (even on cereal packet and rough fabric, backs of my hands covered in little scars), still does, that's never gone away. And my eyes watering SO bad and then crusty for SO long after, together with vision changes. What is all that? SO many questions, never any answers. Need them.

    And there's a blog on that site too. Shame so many similar blogs/sites but spread all over the place, repeating similar but not linked up.

  • Sorry it's taken so long for me to reply Muddled. It takes me ages to read through text and then to assimilate the content.

    The article mostly describes the classic symptoms of SAH although they were not the way I remember it.

    Several weeks prior to the bleed I experienced crawling sensations over the top of my head and my taste and smell suddenly became corrupted.

    My favourite foods and fragrances tasted & smelled vile, almost overnight and when I read up on it the same explanation kept coming up . . . . . . . . .

    . . . . . . it is a signal of stroke, tumour or other acquired brain trauma.

    I eventually spoke to my GP who basically laughed at the idea and prescribed basic nasal drops. One month after seeing her, I suffered the SAH.

    Those symptoms are apparently all linked to BI as after-effects, whereas I had them prior the event and still have them three years later.

    Headache, vomiting and other odd symptoms are commonly listed as the pre-curser to SAH and the article backs this up. However, I experienced nothing prior to mine except for the realisation I was going to pass out.

    All I remember was a distant voice telling me I was safe now, but I managed to utter 'Please tell Helen and Ken I love them' (daughter & son).

    I later learned that I did have those classic symptoms of sickness/headache immediately after collapsing but remember nothing of it.

    The article plainly states there is no known link to stress yet just prior to my collapse I was reeling from the discovery of a scam on my bank account and my stress level was sky high ; the consultant later told my family it had almost certainly triggered the bleed.

    I did become aphasic after a couple of weeks in ICU was rushed back to theatre for a second procedure which corrected the issue.

    Everything else they document I can concur with i.e. the dysphasia, mobility and memory issues etc.

    I hope I've covered what you wanted to know Muddled ; it's all I can manage for now and I seem to have rambled on quite a bit !!

    Regards Cat xx

  • Thanks so much Cat: so interesting you had those warning signs but they aren't KNOWN about, maybe they should be. You were lucky the GP didn't put you down as 'schizophrenic' coz of your 'hallucinations'!

    I think stress does LOADS,they say it interferes with immune system too. Oddly it doesn't seem (?) to put my blood pressure up which they say it (always?) does.

    Thank you so much for taking the time, wonder if docs and medical schools might put this into training/practice, use the info to help others,maybe prevent? Dunno.

    I get bouts of not being able to say what I want or talk properly. I can feel it but think (unless real expert) others wouldn't notice. Social worker told me 'you do NOT have aphasia' but maybe was talking really well (in HER opinion) at that time on that day. I do know people think (obviously) that what I say is what I want/need to say but so often it isn't. So hard to explain. Some days can hardly talk for a bit, other days FAR better. So complicated isn't it?

    And I'm only NOW (9+ years) beginning to understand some of this, get insight. Would have been nice to get info and help with all of this at start: I was TERRIFIED by it all but worked out my brain was injured but had big trouble saying early on. Odd: my writing from then LOOKS to normal (how I wrote) but I struggled SO hard, HUGE effort, doesn't show though. But writing was easier than talking right from the start.

    Does anyone else have this after ABI? I haven't read about this anywhere, must search.

  • I prefer the keyboard . . . . . . . easiest for correcting the endless errors ! :o x

  • I agree, they did well with Nick and it helped my mum understand some of my frustrations, anger and confusion after my accident. I also thanked my wife a lot when Leanne left him! But as you say he does seem to have recovered very well.

  • Yes I know they have to move the storylines along, but just an occasional hint, or reference, to the inevitable after effects would continue to keep some awareness of the issue going, not to mention the plausibility for we experts !

    But it was of some value if it reminded you of the respect and consideration our partners/carers deserve.

  • I lived in the East End for ten years and was horrified to discover that people from other parts of the country, and in other countries where it is broadcast) actually thought that we lived like the characters in Eastenders... in homes with old chairs and a rickety table, drinking tea by the gallon and dividing our time between the cafe and the pub and the launderette. It was a totally warped view and nothing like the daily lives of millions of Londoners. It is the same for survivors of BI , or breast cancer, or infant deaths, or rape or abuse or any of the other topics tackled by soaps.

    The soaps do have tremendous power and should be encouraged to use it wisely but at the end of the day they are entertainment. The very fact that they highlight important issues is something - that would never have happened years ago...and at least Headway were involved somewhere in the process because I am told an announcement and HUK details were given at the end of the show

    I think that soap story lines about health issues are a bit like adverts for mobile phones...it all looks really bright and simple but in small letters across the bottom it says for the purpose of this ad some steps have been skipped/shortened/simplified.

    It is frustrating that they do not give the full picture but the harsh reality is that showing episode after episode with the characters living with long term effects of brain injury is not going to make people want to watch these tv shows or persuade sponsors to buy ad time. Even soaps with their "gritty storylines" are still a form of escapism.

    Does anyone ever escape a brain injury unscathed? I don't see how they can...Even those who appear to (eventually) make a full recovery are still changed in some way by what happened to them. Everything that happens has some kind of impact or influence..life changes things.

  • Yes, it makes me MAD when I read neuro/brain cases (including errors) written up by doctors and so many of them end with the same cut and pasted line: 'the patient made a full recovery', I don't believe it, I think they are lying. Did anyone ask the patient? No. Why not?

  • I never watch soaps but the purpose of them is for entertainment as far as I can see.If I want facts I will look up on trusted web sites.Yes,perhaps the audience may get a different impression of a BI than has been most of our experience,then again I would hope viewers have the intelligence to know the difference between the content of a documentary and a soap.

  • There is a guy called Martin Kemp who acted in Eastenders and he was also a part of the 80s band Spandau Ballet. He had two brain tumors on top of his head. By the sounds of it, his op was simple, no big affects after. Lucky git.

    I know that is not the same sort of op as what you are talking about but it does make me think how lucky some people are.

    I had a brain tumor located on the brain stem. Because there were a bunch of nerves in the way of the tumour, the tumour could not be removed in one fell swoop. Nerves had to be brushed out of the way and so I had bruised nerves which has lead to weak muscles, notable in my face.

    Now, a friend once told me about someone he knew had a tumour in the same location as mine but the surgeons managed to get the tumour out without damaging the nerves!

    This person was up and around like any other person and was playing football and doing most things other people would do.

    Something tells me he was telling porkies.

    I realise he could've been telling the truth but I highly doubt it and I know this friend and he has a record of making things up.

    I honestly think he made this story up to make me feel low... It didn't work though :).

  • Hi zainey-lainey,

    Thank you for your post, which raises an important issue with the portrayal of brain injury on soaps such as Emmerdale.

    As you may know, Headway is often approached by the leading soaps for our input on their storylines, and we are happy to provide our support. However, the distorted world of soaps can make it very difficult for writers to portray the complex, long-term effects of a brain injury. In Cain Dingle's case, the aneurysm storyline was given only a very short run, so picking it up and treating it before it ruptured was the only plausible option.

    While in some ways this is a missed opportunity to raise awareness of the reality of brain injury, we did manage to get our national helpline details broadcast at the end of the show. This led to a large increase in calls and visits to our website, helping to raise awareness of the warning signs of an aneurysm and the support that is available from Headway.

    We'll continue to push for brain injury to be more accurately represented, so your feedback is extremely helpful to us.

    Best wishes,

    Headway

  • Thanks for that. Did Headway work with the producers on Coronation Street with Nick's storyline?

  • They certainly did Lydgate. x

  • Hi Lydgate,

    Sorry for the delay getting back to you.

    As Cat says yes, we were involved. We worked with the scriptwriters and Ben Price, who plays Nick, has taken an extremely active and ongoing role in researching brain injury and supporting Headway.

    Our original story on this is at headway.org.uk/news/coronat...

    Ben has attended the Headway Awards for the last couple of years so has remained involved with the charity.

    Unfortunately the stories do move on in the world of soaps, where we know that doesn't happen for many people after brain injury.

    Headway

  • I totally get it what you said earlier Muddled. I am the same as you . Sometimes I am slow slurring when I talk and some times to fast!. my brain finds wrong words also. . Lydgate I admire you as you can remember big words that I don't even no what they mean. maybe I did pre bang on head but not now. I say the beginning of one word and the end of another. it is quite funny at the time. .....................................Any one been able to drive staright after a coil op for anyurism? coz continuing with the convo about how soaps do storey lines about head injuries well the said actor drove his car day after he was out of hozzy day 2 after opp. hmmm

    Thank you Head way for replying, I get it that they cannot cover every detail about what we go through but what they do show at least get it right and realistic. What I hoped would not happen has.. Afriend has said why are you still having problems 5 years on when him in emmerdale and him in corry are ok now so soon after?? how many more will question our conditions,impairments and struggles after getting educated off soaps... grrrr we no the truth guess that's all that maters xx

  • Hi zainey-lainey,

    That's very frustrating to hear and it really highlights the need for a realistic, long-term brain injury storyline in popular programmes like the soaps.

    Unfortunately in Emmerdale, Cain's aneurysm story was only ever given a week or two so it had to be caught before it ruptured. That's not to say coiling isn't a serious operation which for many people needs a long recovery time, however in this case the pressures of the 'soap world' took over very quickly.

    We'll certainly continue to push this message as we work with the writers in future, and this thread is a big help to us in doing that. Thank you to everyone who has contributed to this discussion.

    Best wishes,

    Headway

  • I found this story line insulting to people who have suffered an anurism. I had a bleed 13 years ago, and although I was very lucky to survive I know others that didn't. I had three angiograms , and although I was told I would have to have surgery I didn't in the end. My bleed was apparently a rotten blood vessel which burst, and although the consultant found an anurism he decided it was best left alone as it was very small.

    I saw a lot of people in hospital who were not so fortunate as me, and although I have led a normal life since, I spent 3 weeks in hospital , and went back for a few checks after, it was well over a year before I was back to normal. For a long time I often would go to say something and my mind would go blank, I made a few mistakes with my work, and generally things were very difficult. The fact that I have an anurism doesn't worry me too much now, the consultant told me that you could live for many years with one , particularly if you don't smoke, exercise regularly, and eat sensibly. So I try to do all these things, and so far so good.

  • I don't believe it - last night Cain said he nearly died to somebody - oh really and out of hosp in 3 days or less - really unbelievable!

  • CAN YOU DRIVE ON DAY 2? oh dear another blip script writers

  • There was an earlier storyline on emmerdale about a brain tumour and the speed at which diagnoses, surgery and chemo were carried out and completed was so quick it was unreal as was the fact that there was no mention of the character having to surrender her driving license because of the seizures.

    Also the other line with the police woman with cancer, my wife knows two people who have had the same type of cancer and the one survivor (so far) has said there is no way the character would have been able to carry on her life in the way portrayed.

    It si fantasy sopa land as has been said before and whilstit may bring these conditions to the public they also tend to minimise the effect and the devastation felt by the victim. The best story line in this respect that I've seen was Haley in Corry.

    Fiction will always be better than reality otherwise who would watch it.

  • Patrick on eastenders is playing a good part as a stroke victim. is there any reason why all the soaps seem to cover the same storey lines. do they get a subject and all have to do it like rape. drugs, gay, altzimers etc and so on. coz if they want to win the awards then they need to touch people and make it realistic and help others by doing so. no awards in emmerdale then teehee

  • My "2 cents" on how soaps portray real life accidents:

    "Price described his latest storyline as his 'best ever' during his four-year stint on the ITV show, and added that he worked closely with the brain injury charity Headway to help him portray Nick after the accident. "

    digitalspy.co.uk/soaps/s3/c...

    "Ben Price, the actor who plays Nick Tilsley in Coronation Street, has thanked Headway for helping him prepare for his character's impending brain injury in the popular soap."

    Heres Headways official statement: headway.org.uk/news/coronat...

  • the actors do there homework they are very good...its the producers/script writers who put it out there. . Nicks was a good start but he was soon jogging around and no signs now in the soap. just the odd one now and then would be good like we have to live with... I just hope emplyees from PIP don't watch the soaps coz we are all doomed.. we can be fit for work very SOON after as the programes portray this with all the charectors who have done head injury/brain poorly roles. grrrr

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