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Hello - I'm Ben from South Wales


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Good evening, everybody and thank you for adding me. I’m Ben, a 31 year old Man who also has Spina Bifida, living near Swansea, South Wales in the UK. I had a SAH on the 25th March 2014. The thunderclap headache came on as I was eating my fish and chips and the pain radiated all the way down to the top of my back. I didn’t go to hospital until the 27th as first of all the local doctor diagnosed that I had a pulled muscle in my neck, then the next day it got a little better.

On the 27th, I had terrible double vision which made my Mother phone an ambulance which took me to Morriston Hospital. After a few tests I was told that I’ve had a SAH and was quickly taken in an Ambulance with the blue lights etc, 90mph up to the University of Wales Hospital in Cardiff. I had coiling of 1 aneurysm on the anterior communicating artery but I have another very small one on the left middle cerebral artery which didn’t need coiling and the doctors are just going to keep an eye on it..

Two days after my coiling, I had a stomach bleed and went totally unresponsive, luckily I came around after two days, I think. I stayed in Cardiff until April 8th and was then allowed home. Since then I have been recuperating at home and up until this week, I was fine until I got a bladder infection.

I have had to be fine basically as my Dad has Leukaemia and my Mum and I have visited him in hospital as he undergoes chemotherapy.

It is a huge relief to read about the different pains and loss of vocabulary etc that you all have post-SAH. I hope to speak to anybody and everybody that want to speak to me. Take care.

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Welcome to BTG Ben.

There are plenty of survivors on here who will be able to give you lots of support. In the meantime do not push yourself too hard and make sure you drink gallons of water as this really does help with any headaches you may be suffering.

 

Any questions please feel free to ask as there may be someone who has experienced exactly the same, although we are unable to give medical advice as I am sure you realise.

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Hi Ben :) a very warm welcome to BTG !

Sadly it is very common to be misdiagnosed, it happened to me too.

 

It is very early days for you, lots of rest and pace yourself.

You have come to the right place for lots of helpful information and support.

 

Take care and we look forward to hearing more from you.

Wishing your father well and hope your Mum is doing ok too . 

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Hi Ben,

I so sorry this happened and you were told it was simple neck pain. I have read so many stories on here of being misdiagnosed.

You are so blessed that you were finally taken to the hospital and they found the SAH. You've been through a lot.

How are you feeling? Please do not do too much. I am a little over a year and still have headaches and dizziness and I'm sure part of that is I do way to much.

Pace yourself.

Iola

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Hi Ben, I am glad you are feeling a little better a couple of months in but don't push too hard , try and learn the signs for you that mean you are getting fatigued and rest rather than ignore them, it helps in the long run.

make sure you get yourself some sea air down on the Mumbles and just generally be kind to yourself.

I hope your dad's treatment isn't too gruelling, sending best wishes.

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Hi Ben,

 

Welcome to BTG.

 

I sang with my sisters and it helped me, (Not that I remember much of anything as I had hydrocephalus) now shunt in place I am okay.

 

Good luck to Parents Ben xx

 

Was your bladder infection due to catheter ? as I had UTI and the cause was the catheter.

Good luck to you and your Family

WinB143 xx

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Thank you so very much for the welcome, Ladies and Gents. I will definitely get a lot of sea air down the Mumbles, Daffodil. :)
 

Hi Ben,

I so sorry this happened and you were told it was simple neck pain. I have read so many stories on here of being misdiagnosed.

You are so blessed that you were finally taken to the hospital and they found the SAH. You've been through a lot.

How are you feeling? Please do not do too much. I am a little over a year and still have headaches and dizziness and I'm sure part of that is I do way to much.

Pace yourself.

Iola


Thanks for the welcome Iola. I still get headaches some days and sometimes dizziness and lightheadedness. Today I've got a weird pain in my belly.

I think 'doing too much' caused my UTI. Hope you're feeling well today. 
 

Hi Ben,
 
Welcome to BTG.
 
I sang with my sisters and it helped me, (Not that I remember much of anything as I had hydrocephalus) now shunt in place I am okay.
 
Good luck to Parents Ben xx
 
Was your bladder infection due to catheter ? as I had UTI and the cause was the catheter.
Good luck to you and your Family
WinB143 xx

 
Good afternoon and thanks for the welcome Win, you're 100% correct. The UTI was caused by the catheter. It was weird though, I've used them all my life and it's only the 2nd 'bad' UTI I've had in 20+ years.

I have hydrocephalus too, been shunted since I was a few days old. Trust me :D nobody wants to hear me sing.

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Hi Ben and a warm welcome to BTG - sounds like you've been through the mill recently. That was some speed that the ambulance clocked up to get you to Cardiff!  Glad to hear you are now recovering - I too was delayed getting to hospital - 6 days after my sah, but no blue lights in my case - just a lift in with my Dad. 

 

I wish your own Dad all the best with his treatment - and a big hug for Mum for being Mum!

 

Bye for now,

Sarah

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How are you, Win? I am well thanks apart from a dull pain in my belly.

I am not actually sure if my shunt is working as the last time I went to visit a Doctor regarding Hydrocephalus was a long time ago. He said that I might 'grow out of it' and the shunt may stop working anyway.

Regarding flying, I have flown twice, both times when I was much younger than I am now and I was fine.

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