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New member - Dory


Dory

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Hello everybody

 

I have been stalking you all for a few weeks and and feel that now is the time to introduce myself.

 

I suffered a ruptured aneurysm at 7.30am on 27 May 2016 whilst drinking coffee just before setting off for work.  At the time I did not realise the severity of my headache, I assumed that is was the return of the awful migraines I endured when I was younger.  In hindsight I should have realised as my mother's anni ruptured two weeks before her 58th birthday - mine took place two weeks after my 58th.

 

As I live alone, my wonderful daughter delivered Migraleve to ease the pain and was duly instructed to enjoy her weekend with her family.  My eldest son checked up on me over the next couple of days but was advised by his foolish mother that it was nothing more than a severe headache.

 

At 7.00 am on Bank Holiday Monday (30th May) I decided to call the NHS helpline as the pain was now intolerable - an ambulance was dispatched and help arrived at 7.05 (very impressive).

 

I was taken to the nearest hospital whereby they decided that I needed to be transferred to a neuro ward at a different hospital.  I was then taken to theatre where a shunt was put in place.

 

Much of my future treatment is a blur (my children have been drip-feeding me information) - I do recollect the surgeon telling me that I was being taken to theatre as I had suffered a SAH but when I told the surgeon that I did not wish to be resuscitated he said that he could not discuss it with me at that time?

 

I was discharged from the hospital on 10/06/2016 without any advice or support. Thankfully, my younger son and his wife took excellent care of me when I went to stay for them for the next two weeks, however I was desperate to return to my own home and familiar surroundings.

 

Prior to my discharge the surgeon advised me that the planned holiday abroad booked for October may not be possible, he will advise me further when I attend my appointment in September, but as he 'poured' coils into the anni (surely this is an exaggeration?) it may be advisable for me to cancel the holiday.  

 

Another angiogram will take place in the next few months (I cannot remember exactly when, as I am trying not to think about it).

 

In the meantime, I cannot work, drive or remember anything unless it is written down and, reluctantly, I am now using a white cane in an attempt to reduce the trips and falls.

 

I know it is inappropriate, but I sometimes feels that I will thump the next person who kindly tells me that I am lucky to be alive - am I really? 

 

And oh how I yearn for a cigarette.

 

Sorry for the rant/essay - I clearly needed to get it off my chest!

 

Kind regards

Dory

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Hi Dory,

 

I have given up a majority of things like Vino and Cigs and I have put on weight as chocs are my new cigs lol xx

 

Glad you made it and Welcome to BTG xxx

I was out  but remember nothing until they put shunt in after Ventriculitis  and Sepsis cleared up. I have coils in also.

 

When I went for my last MRI the surgeon said "all seems well but if you feel ill do not hesitate to tell your Doctor to send you back to us" or words like that !!   He also said No Stress so passing it on to you.  No Stress !!

 

Now take your time and smile a lot or sing or whatever makes you happy.

 

It is a long haul but we will make it and this site is a good place to come when down or feeling blue as we all have been there xx

 

Anyway Wishing you Well and keep in touch xx

Regards

WinB143 xxx alias Win xxxx

 

 

 

 

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Hi Dory

 

Welcome to BTG.  You'll be surprised at how many people tell you you're lucky to be alive and (for fear of getting thumped:wink:) yes you are, you're just not at the point in recovery where you can realise it yet.  You're more than a statistic - you're a survivor!!  It can be a long road to recovery, and I always say this, but you can make as many pit stops along the way as you want.  Right now you need to listen to your body, drink plenty of water as it helps the brain to repair and rest up as much as possible.

 

I'm nearly 10 years in and I can vividly remember being where you are right now in the feeling that there is nothing lucky about this and how unfair it is - all mixed with a really unhealthy dose of guilt and anger.

 

To be honest, I haven't changed my lifestyle at all since my SAH (I've dieted harder as I find the normal cardio exercise I did 3 times a week leaves me with a banging headache for days).

 

Take things slowly right now and adjust to what you can do, don't compare it to what you could do before, just recognise what you can still do.

 

We're all here for you if you need a rant, rave, laugh or shoulder to cry on.

 

Take care and look forward to hearing more from you xx

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Hi Dory

 

Welcome to BTG the survivors club. Yes it may seem a pain that everyone keeps telling you that you are lucky you survived but in time you will appreciate that sentiment. We ARE lucky, we ARE the survivors. And white stick or not and driving licence or not you are here and surely that is a better place to be than the alternative.

I travelled in the May after my sah in February, no problms except fatigue. 18 months down the line and I still suffer fatigue and extremely annoying memory deficits but other than that just a huge sigh of relief that I DID survive :)

 

Looking forward to hearing more from you. And as for cigarettes, I loved nothing more, gave up 2 years before my 'event' and LOVE the money I now have (though I'd love a cigarette ;) ). Just don't do it!

 

Clare xx

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Hi Dory,

 

Welcome to BTG.

 

You have certainly been through a lot and that takes a while to come to grips with. Even now I am still coming to terms with everything and learning to deal with the adjustments and I have had months to do so.

 

I had my haemorrhage whilst I was undergoing heart surgery for a congenital heart defect at the age of 27. I ended up in a coma and had an EVD fitted to reduce the pressure on the brain. Eventually this was changed to a permanent VP shunt as the hydrocephalus did not right itself. My neurosurgeons originally thought I had had a high grade SAH, however they have now said that I actually had an intra-ventricular haemorrhage (one within the brain) that spread into the sub-arachnoid space. I am still under these neuro-surgeons and have been told by them that I am definitely one of the lucky ones as the survival rate for the grade of brain haemorrhage I had is very low. I have also been told by the same ones that the side-effects I have experienced as a result of the haemorrhage are also to be expected.  

 

I am now 19 months down the line and although I know I am lucky to have survived this I have to admit that I have times when I don't feel it. My life is now quite different to what it was prior to my haemorrhage. I have returned to work, but now work part-time, I have only very recently (yesterday) had permission off th DVLA to drive again and due to the spinal damage I suffered as a result of the haemorrhage this will have to be a hand controlled car. The spinal damage also means that I now walk with a stick and have lost sensation from the mid-torso downwards so pretty much all day-to-day activities are more difficult than they were. The spinal issues may get worse so I may have to undergo spinal surgery at some point in the future. There is also, of course, the brain side of things were too much stimulation is an issue and  my memory is rather diabolical.

 

As other members on here have said things do get easier with time and you will find that there are many things you can do again, although they may be in  different way. I am not going to lie - the journey post haemorrhage can be a rocky one with ups and downs but there are positives out there and there is definitely life (and a good one) post-SAH.

 

In terms of travelling post-SAH. I have yet to go abroad (although that is partly due to the fact I have struggled to get insurance due to being on the waiting lists for various things) however many on here have. I have also been away in the UK and have managed that. My family were told to cancel our holiday at the time of my event and they chose not to and I was able to go on it (although I slept for a lot of it). I would recommend trying to get in touch with your consultant or a specialist nurse if you have one to see what their reasons are for the cancellation and if it is necessary.

 

Take care,

Gemma  

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