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A sixteen year old's story


Sophie

As a healthy sixteen year old being told that you need life saving brain surgery is a little more than unexpected to say the least.

In April of this year I collapsed with friends and was rushed to hospital. After many different scans and an extremely Ill teenager who had never had an issue in the past, let's just say I left doctors puzzled.

 

However, my medical mystery wasn't left without an answer for long. My family and I soon found out that I had a ruptured aneurysm which is otherwise known as a Subarachnoid haemorrhage. Within 48 hours I was having life saving brain surgery as my aneurysm was coiled. I can't remember much about collapsing or the sudden shock of pain, but I can remember and always will remember the excruciating pain that I woke up to which I can only explain as my head exploding and my entire face becoming numb.

 

I have since found out that 3/5 people do not survive a ruptured brain aneurysm which has since been extremely difficult for me to deal with as being faced with death at such a tender age is possibly the most frightening thing I could think of. I was keen to share my story as it is extremely rare for someone of my age to have had a ruptured aneurysm, this has been made very clear to me as I can find nobody close to my age that understands what I have gone through.

 

Thankfully my story has a happy ending and with the wonderful support of my family I was able to make a full recovery. However, I feel that I have done a lot of this alone, through this life changing process I have had no one my age or older to talk to about my experience as empathy seems to be lacking in almost everyone I know. I wanted to write this to support any young person like myself, who feels like they are the only teenager with this condition, as I know that this is exactly how I have felt and still feel. 

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Sophie, bravo for writing your story and sharing as it will bring comfort to anyone else bite your age and otherwise. We will try and help you understand some of the feelings and changes you may have since SAH as we will have that in common but age will not be Something we share! I i was 23 years older than you when I had mine!  Please do ask if you have any questions about how you are progressing and I hope you are doing ok. You may also want to get in touch with the charity Different Strokes who help young people who have had strokes which an SAH is considered to be. 

Take care x

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I was told that I was on the young side to be having a SAH at 29, I can't begin to imagine what it must be like for someone only 16. It can often feel like a lonely road because most people aren't even aware of what a subarachnoid haemorrhage is (I certainly had no idea before it happened to me) so peoples reactions to it vary, this lack of empathy might just be a lack of understanding in some people. There's also the fact that, most of the time, we have no external indicators to show whats happened to us (even more so with the coil), we look normal, we look fine, so people assume we are (you break your leg, you get a plaster cast) but you will undoubtedly get the deepest level of sympathy from everyone on here as we have all been through this and are here to help.

 

Kay x

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I would just like to say thank you to everyone that has messaged me. I collapaed on Saturday night 22nd April I was out with friends, they very cleverly called an ambulance and my mum. Unfortunately when the ambulance men arrived they thought I was drunk or had taken something (which I wasn't) I have since found out that I had collapsed for about 15 minutes and had thrown up all over myself (not my style) I have no memory of this at all, I couldn't speak after I had collapsed also. The ambulance men then took me to Kingston hospital,

 

I was actually discharged from Kingston hospital much to my parents horror as my mum had specifically asked that i have a brain scan as the GP thought i had, had migraine in the February that had lasted a week (we now know it definitely wasn't a migraine). The hospital claimed "it was just a blip" 

 

The following day my mum tooK me to a different AnE (I'm sure we will never return to Kingston Hospital again) and things moved on from there including a: Brain scan, Lumbar puncture and MRI Scan and last but not least being blue lighted Charing Cross hospital, where i had a CT scan at about 3 in the morning. On April 27th my aneurysm was successfully coiled. Because of my age my recovery has left doctors stunned. I am currently doing my GCSE's (something that doctors thought wouldn't happen this year) I have also had double vision since my collapse which has finally cleared which in some cases can take up to a year. 

Thank you for the support its incredibly reassuring to read and relate to your trauma.

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Hi Sophie, welcome to BTG glad you appear to be making a good recovery. Very brave to be taking your GCSE's good luck, hope you do well.

 

My brother had a SAH aged 15 - he is now 61, I had mine 2 years ago at age 55. We are unsure if his was auerysmal or not as neither my mum or dad are still alive and they knew the details. I don't even know if they coiled that many years ago. When he had his the first thought was that he had been drinking, he had been to his girlfriends and run home.  

The hospital were interested as we were both treated at the same place, but their records don't go back that far. He was in hospital for a long time, months I think and he had to learn to walk again as in those days you stayed in bed. Things certainly have changed since then. He did make a good recovery though and went on to race motor bikes - in the amateur field. He's still alive and well though slightly mad lol! He says we are special mad brother and sister ;) 

 

Mine was non-aneurysmal with hydrocephalus. I have recovered well with just fatigue and slight memory problems..

 

I hope you continue to recover well, feel free to come back and ask any questions, there is always someone here to listen.

 

Clare xx

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I'm finding almost everything extremely emotional at the moment. My family has provided me with the most fantastic support, but I feel very isolated from them at times, I just can't seem to shake the hollow feeling inside. My short term memory loss has also become far more prominent to me as I could remember a conversation word for word and now I struggle to put a story together which is becoming extremely frustrating as I'm sure you will all understand!

 

I am having a party in early July to welcome me home and celebrate my survival. The word 'survival' again is something that seems to hit hard at times when I'm least expecting it-my laughter can quite often turn into tears, this reaction is couldn't be further from my personality. I miss feeling untouchable if I'm honest and envy my friends who still think they can take on anything, and aren't petrified of a headache, or exhausted after carry out the most pointless activities.

 

Sounds all rather bleak at the moment, I don't always look at my aneurysm this way, most of the time I'm incredibly proud to have been through such a traumatic event, I feel that it truly is a part of me and just another chapter in my ever changing story. However, If I want to recover I'm aware that this part comes hand in hand with the positive times. 

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Sending you lots of hugs Sophie,its early days.I totally understand how your feeling, it's been a major event for you,especially as your so young.

A local group I attend has a young lady not much older than you, she has done marvellous,you'll get there with the love and support from your family and friends .

you need to rest, sleep when your tired,let your friends take you out even if it's just going for a short walk.There is light at the end of the tunnel.

Godbless you xxx

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Sophie it is really early days for you, that feeling of disbelief at what has happened will settle in time. Your memory will hopefully improve, at your stage I couldn't remember much at all. I remember cooking a chilli and not being able to remember if I had put the chilli powder in or not. Needless to say it was a very hot chilli!

You sound tired, are you trying to do too much? Taking your GCSE's must be so hard on you afyer what you have been through, you are very brave to be doing that. I would imagine that has really taken its toll and maybe anything else is just too much. I can imagine how important those exams are to you, so maybe try and avoid anything else until they are over.

 

Hang on in there, you are doing well

 

xx

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Sophie ,

 

We had a Mum come on here and her Daughter was going to go to University, she put it off for a year and went when she felt able and her Mum gave us an update.

 

I cannot remember the girls name sorry but someone might remember it.

 

Short Term Memory loss arghhhh.  I am an old dear and can remember years ago but ask me what I said to hubby 5 minutes ago ???  lol

 

You will get better but it is a long haul and you have youth on your side.  All I had was excess fat that kept me going lol

I was told by Surgeon No Stress and keep away from sob stories, you need happiness in your life xx

 

I wish you well and all the best for the future because you do have one !!  Now get yourself better and sing when down happy songs only and surround yourself

with good memories.   We are all here to prove there is a life after an SAH xx

 

Good  luck and when down come on here if needed,  to give vent  or whatever xx

 

Love

Win xxxx

 

 

 

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Sophie, as I am new on this forum I am not sure if you are still logging in but if you are I want you to know that I think you are a wonderful, inspirational young woman and I can only add "SMILE a lot, every single day" xx

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I can't thank you all enough for your wonderful support, it has improved my recovery immensely. 

 

I have finally been able to lift myself out of the bleak area and start living a little again, I got the train yesterday which was the first time since I collapsed (I can't believe I found a train journey so exciting!) My GCSEs have also finished and I am no looking towards my prom which is again something that at one point was not going to happen.

 

I have also started to write all my thoughts and feelings down, everything I can possibly think of and I am now trying to compress it into a speech, as I would like to provide knowledge on SAH but also the trauma of any major incident. I'm 16 and I have a lot more to do with my life, but I think I now understand a lot more about the world around me. People that can't cope with others pain or stress don't mean as much to me anymore for example. Therfore this long summer that I luckily have, I am going to try and become an inspirational speaker.

 

I wanted to write this as if anyone feels the way I did a few weeks ago, it doesn't last forever, my frustration in a way has become my passion and I can't wait to share it with others.

 

Thank you again for your support, each individual message helps me improve greatly and brings comfort to my family also, as this has effected them as well as me.

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Good for you Sophie, well done on completing your GCE`s fingers and toes are crossed for you and your results. I am glad that you have decided to write all your thoughts and feelings down each day, when going through such a trial it will be good for you to look back now and then and realise what a tremendous journey you have been on and just how very far you have come. You are an inspirational young woman.xx

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Sophie I have a niece called Sophie so you keep going forward and we are always pleased to hear from you as it gives others hope.

 

Remember there is a life after SAH xx Go forward and spread the word ha ha xxx

 

So pleased for how your life is going forward.

 

Be happy and stress free  for the future  xxxx (when possible) if you feel a stress moment start singing or think of funny times  xx

Love

Win xxxxxxx   the old girl with a funny name ha.

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Dear Sophie,

 

What an inspiring young woman you are. Your posts touched me. I have a niece called Sophie who is 2 years older than you. It was a huge shock to me too when I had a ruptured aneurism on New Years Eve, and I am 53, so for you I can imagine that it must have been mind blowing. Like you, I have made a good recovery and we have to thank our lucky stars that we made it, as it could quite as easily been very different for both of us.

 

I felt just like you in the early days, I was scared, I was sad, and then I came on this site and it helped me a great deal. I decided to stop focusing on the negatives, and instead, to focus on the positives of which there are many. It wasn't our time to go, we have more to achieve, and I am embracing my new opportunities. I decided to go away as much as possible and I spoil myself more now than I ever did before. You have a bright future with a new focus, take it with open arms Sophie. I wish you all the very best with your recovery, and your new future xxx

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It's been a very long time since I have written anything, so I figured it was time for an update. 

I passed my exams to begin with! I am now three months into my A levels and loving every second, surprising! Now that everything in my life is relatively normal again it's hard to believe that at one point this would have been  the point when the doctors suggested I should have taken my GCSE's instead of taking them so soon after my operation.

 

The summer was also full of festivals, another example of something that was suggested wasn't going to happen.

 

SAH is still a huge part of my life, it has changed me forever even at the young age of 17 I believe I can say that I won't be the same again, but that's something that I've learnt to embrace - Unfortunately now I just have 101 appointment's to go to but that's just part of my life now, part of my story and part of me. 

 

This update seems a bit empty but I wanted to write it to show that, even though SAH changes you, in no way does it become you. I personally couldn't be a happier person and I think that SAH has made me realise, that actually yes life throws things at you you didn't know were possible, things that you couldn't foresee happening even if you tried and several all at once or even what seems like the impossible, but I love living, so throw away because it's good to be alive. 

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Sophie, how wonderful to hear from you and for posting such positive news of your progress.

Your post will give so much support to others by showing that there is a good life after a SAH

Best of luck for the future and that all your ambitions will be achieved.

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Hi Sophie, my daughter had SAH aged 17 years, she has since completed her A levels and is in her second year of university and loving every minute of it!

It hasn't been easy, she still suffers from chronic fatigue, but she has great friends who support her when she's away at university. She knows her own limitations and has developed strategies to cope with her fatigue. We both still attend a monthly support group at the hospital where she was treated which helps us and also gives the opportunity to support others who have recently suffered SAH. 

You sound as positive and determined as my daughter, SAH definitely gives you a different perspective on life, be happy and fulfil your dreams!

Heather

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Well Done to Sophie and to Heathers Daughter look forward  xxxx Never back only when you need to.

 

Wishing both Young ones all the best for the future... And remember laughter is good for us and stress is not good  xxx

 

Thanks for update xxxx

 

Win xxxx She who sings and drives others potty xxx

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Hi all,

I honestly cannot believe that an entire year has gone by. It's the strangest feeling. It's difficult to remember a time before SAH I question sometimes just making sure, God did all of this just really happen in a year?! An obviously the answer is yes. Yes the absolutely mental year that you really couldn't write has just happened, and it's happened to you! 

 

I was thinking the other day how funny it is that your body just adapts to new situations, or rather how your mind and emotions adapt to the new way of living. At 17 I have simply adapted, I think that's a good way of putting it. It's a healthy way of looking at it too. To adapt is to make something suitable for a new use, well I'd say that sums up anyone recovering from SAH, you've modified yourself into something that's suits you that works with you. I really like me why would I let anything I enjoy or love become redundant, what's the point in that!

 

I said this time last year that the world survival scared me, that it hit home sometimes. I don't see it like that anymore because there were no whatif's I survived, we all survived! The more I think about it and talk and discuss it with people, the more I realise just how utterly beautiful it is. With survival comes living. People ask you what your plans are for the future, where do you see yourself in the next few years and i can't help thinking to myself just soaking up everything that comes my way, every Single experience. 

 

This all sounds a bit dramatic when you look at it, but that's not want it to be. I know how easy it is to get annoyed with yourself because you can't remember that one thing, the headache that meant an extra hour in the dark, the appointment you could really do with out especially on your birthday! 

But I also think that anyone reading this, if anyone reads this or gets to the end of this very long speech, should really just remember how far they've come, whether SAH is something new in your life or something that's been a part of it for years, you survived, and I'd say that is something to extremely proud of, because I know I am.

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Your words made me well up Sophie, it's a part of my SAH and me now !! Tears at the drop of a Hat !!

 

We are survivors and you have done extremely well for a young girl to put it into words.

 

I hope you have a good life and a happy one, now the world is waiting for Sophie's next instalment.  On her survival adventure.

 

Well done you for putting it so concisely as I cannot spell Succinctly lol xxxx  Now remember a smile a day keeps the blues away xx

 

All the Best,  that old girl with the silly name ...Keep us updated wont you xxx 

Love

Win xxxxxx

 

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I am so glad you are doing so well Sophie. You have clearly embraced the experience and come out with a hugely positive outlook on life, not an easy thing to do. 

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Sophie, beautiful words to share and they moved me too. Our frame of reference for our own reactions and capability gets shifted entirely by the SAH but for us, the lucky one who lived to tell that tell we start building that new framework, testing new limits, finding changed tolerances. Fly high Sophie. I wish you all the luck in the world and keep us posted. X  

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