Benjamin Newbery Posted June 1, 2014 Share Posted June 1, 2014 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. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted June 1, 2014 Share Posted June 1, 2014 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. Quote Link to comment Share on other sites More sharing options...
jess Posted June 1, 2014 Share Posted June 1, 2014 Welcome ben anything you want to know just ask xxx Quote Link to comment Share on other sites More sharing options...
Tina Posted June 1, 2014 Share Posted June 1, 2014 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 . Quote Link to comment Share on other sites More sharing options...
Guest Mike Posted June 2, 2014 Share Posted June 2, 2014 Mike Quote Link to comment Share on other sites More sharing options...
iola Posted June 2, 2014 Share Posted June 2, 2014 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 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted June 2, 2014 Share Posted June 2, 2014 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. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted June 2, 2014 Share Posted June 2, 2014 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 Quote Link to comment Share on other sites More sharing options...
Benjamin Newbery Posted June 2, 2014 Author Share Posted June 2, 2014 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 FamilyWinB143 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 nobody wants to hear me sing. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted June 2, 2014 Share Posted June 2, 2014 I had UTI Ben and I was away with the fairies. Welcome to the Shunters club Ben x (you should be welcoming me lol) Keep smiling when possible Best Wishes WinB143 xx Quote Link to comment Share on other sites More sharing options...
kempse Posted June 2, 2014 Share Posted June 2, 2014 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 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted June 2, 2014 Share Posted June 2, 2014 I was going to ask if you had a shunt Ben but then thought it bit rude....we will no doubt be asking you for your shunt tips and advice! Quote Link to comment Share on other sites More sharing options...
Benjamin Newbery Posted June 2, 2014 Author Share Posted June 2, 2014 I shall try my very best to answer any questions you both have, Daffodil and Win. Thank you for the welcome to the Shunters club. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted June 3, 2014 Share Posted June 3, 2014 Okay Ben your first question about shunts, ready? okay I'll start. Can I fly ? (not like a bird ) for a holiday? Hope all is well with you today Regards Winb143 x Keep smiling Quote Link to comment Share on other sites More sharing options...
Benjamin Newbery Posted June 3, 2014 Author Share Posted June 3, 2014 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. Quote Link to comment Share on other sites More sharing options...
Louise Posted June 4, 2014 Share Posted June 4, 2014 Hi Ben Warm welcome to the site, glad that you found us... Ah! Mumbles area been there.... take care Quote Link to comment Share on other sites More sharing options...
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