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Hi my name is Justine but everyone calls me Jus and im new to this site


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Well i say new but i've been using it for months now and not dared register before now....not sure why really because i have found it to be a great comfort to me since my head exploded (SAH) on the 27th January 2012. It was a Friday and i had just come home from work about 4.20 pm from my teaching job,my husband handed me a coffee and bang my head exploded! I can remember falling to the floor and been violently sick..my 2 children aged 17 and 10 at the time went to get their dad who had wandered into the garden who called the ambulance. After my local hospital confirmed a bleed i was transfered to Leeds General. I can't really remember any more details but have been told i was having fits and was unable to move down one side. I was monitored over the weekend and then coiled on the Monday morning.....I spent a while in the HDU ward and then moved to a different one before i was allowed home.I've found it really hard to cope....i still look at my 2 boys and husband and animals and wonder how long i've got with them....and recent M.R.I. results have really freaked me out because it states my operation was complicated by substantial coil protrusion on the parent artery thus requiring me to be on Aspirin for life....not sure what that all means but it worries me a lot!!!! Have i got 2 dodgy arteries? Will i have another SAH because of this and Aspirin thins the blood so oh my word if i did this would completly finish me!!! Anyway thats me and my story and thanks to everyone on this site i no longer feel quite so lonely.

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Justine,

Welcome to BTG.

I was going to do a question the other day and ask if we all are taking a baby aspirin a day??? I have so many bruises from taking one & last week I showed them to my Neurologist and asked will I bleed to death if I have another stroke etc?? Nope not potent enough he said, although my bruising was impressive for a baby aspirin.

I am guessing the parent artery is one of the 2 main arteries? I had an inoperable bleed in one of mine, a stroke or 2 ( not really sure) , and a brain tumor was found so I understand your worry. It is not suppose to happen again they say or it is really very rare.

So how are you feeling now? What is your status?

I am glad you found this site it will be helpful and no question is too small or too big to bounce off our minds… bad term – Bounce off us.

Take care, MaryB

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Hi Jus and welcome sorry to hear that your results have worried you, will you be seeing your Neuro-surgeon again soon if so maybe he will be able to explain it to you in more detail then if not it may be worth trying to contact him via his secretary. Try not too worry to much about future bleeds although its something we all have done in the early months of recovery so it is easier said than done.

I'm glad that you have found the site useful during the early days of recovery and you will find us all helpful and very friendly look forward to hearing more from you.

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Hi jus I know someone who had a bleed about 15 years ago and he has to take aspirin for life he is ok and still alive and hasn't had another bleed. I know its scary I was petrified for ages after mine but it will get easier with time just rest when you need to drink water and relax the more you worry the more you feel. Drs know what they are doing so if they have told you to take aspirin take it but still ask for a second opinion which you are entitled to but I am sure you will be ok. Jess.xxx

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Hi Jus

My story is a bit different as I have had a hemeridge without cause so far, so nothing coiled, which kinda frightens me more because goodness knows where the blood came from and if it ever will happen again.

I noticed that you were sent to LGI like me...Were you under Dr Phillips?? I have found him ok so far, but they never seem too open with info. They must see a lot of people with bleeds about 3 per week apparently,so they must know what they are talking about?!

Thats the thing with me,I have lost confidence in my own body and Dr's coz i saw 8 different Dr's at my G.P and Walk in clinics before one of them sent me to A&E where i had a CT scan and the bleed was seen so I was rushed straight to LGI for more tests and monitoring, despite the worst head ache of my life, vomiting sleeping loads and feeling out of it, no wonder i question everything Drs say now, and that has left me with severe anxiety!

I too look at my 2 yr old and partner everyday and wonder what will happen next, I keep wondering if this will fade coz i cant live in fear forever!

This site is amazing, there is always someone around to answer your q's and put your mind at rest which is what we need the most!

Stay strong

Bev

xxx

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Have just checked the site again and again i cry....its just so comforting to see people actually take the time to read my waffle and reply! hello Bev...i wasnt under Dr Phillips care but Dr Ross whom i only ever saw once before my coiling procedure...and have never seen since.Thats what is so hard about all this head exploding thing....you can't seem to get any straight answers from anyone and all iv'e ever been told is i'm incredibly lucky....of course i am and everybody else who has had to go through this terrible life changing experience but i cant help but think its similar to being hit by a bus (you dont feel that lucky!)I seem to have good days and bad days....some days i can get through a whole day without having to take any pain relief and then others i get twinges and throbbing around the site that exploded and i go into panic mode and sit holding my head as though that will stop any explosion....thats how irrational i've become. I've also found that the people i thought were my friends were not really. I am really lucky to have one true friend though, Wendy,....she completly understands everything ive gone through as her own mum had a SAH and she calms,counsels and never judges me.Its thanks to Wendy that im out and about now....in the early days i was so scared of going out and it happening that i didnt do anything...go anywhere...or see anyone other than my family and Wendy...i will always be eternally gratefully to her for not letting me sink into despair. i never really thought about how it must feel to have a bleed and not know why Bev, i understand your worry in a different kind of way,although i can't completly understand what that must feel like...it just seems so unfair all this carry on! Anyway now i shall think of you often and include you in my daily prayer.

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Jus hello & welcome to BTG. The others have given great advice.

I would imagine that you will be checked over regularly to see how the coils are faring & if you have any concerns do speak to your neuro or the neuro nurse if you have one.

I know I used to pray every night to wake up the next morning for the first few months at home, that fear does lessen honestly!!

Bev I can understand your feelings too, although my anni didn't rupture it took 6 weeks & several visits to my own gp & the hospital before it was found. I found that once I'd had my op I learnt to trust the surgeons as they had saved my life, everything they told me was true but you have to ask the right questions to get the answers you need. There are quite a few NASAH people on here & I don't think I know of anyone who has it had happen to them again. Sometimes you really have to take a leap of faith with what they tell you.

Lots of rest, water & take it slowly are the recipe for recovery honestly

Take care both of you xxx

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Jus

I just had goose pimples reading that, thats really sweet. Im going to work tomorrow for the second try and am so scared to say the least because i know noone understands & just because i look ok, they think i am 100% well, but im not and dont think I ever will be the same! Its the anxiety with me, i feel a pain in my head i go into panic mode or dizzy or ANYTHING i feel as if im in panic mode waiting for it all to take a down turn and it to all happen again but this time worse! How do u ever forget whats happened? i even do all of the pushing and pulling things in my arms & legs that they make u do in the hospital and squeezing my eyes together to make sure that I still have feeling in my arms,legs and face and look at my pupils to make sure they dialite. I have been bk to the Dr countless times to ask them to check my eyes to make sure there is no swelling at the bk of them like when it happened....i am Oificially MAD! :crazy:

Thank the lord for this site and being able to rant on is all I can say!

Thanks for listening

xx

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Hi Jus and a very warm welcome to BTG. I'm glad you found us all on this site as it seems to be helping you already knowing you are with others that have suffered the same thing. I was treated at the next neuro hospital down from you - the Hallamshire in Sheffield. I had my bleed in Nov 2008 and remember well the feelings and anxieties you are currently experiencing. My three children were 8, 13 and 15 back then and the same thoughts went through my head and I spent most of 2009 fretting about a second coiling op that I had to have to add some more coils. I was put on aspirin for 6 months following each op so there must be a good reason for it. The worry/anxiety does lessen with time like others have said. By the sounds of it, you are getting excellent support from your friend Wendy and there is always this site if you need to ask anything.

Take care,

Sarah

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Bev I also have a small child, Nathan was 4 when I had my anni clipped. Looking after him is the biggest struggle of all so I do empathise with you totally. I began to figure that if I woke up every day ok for the first couple of months then what the surgeons were telling me was right.

We may not be exactly the same we were before but in some ways we can be better as we know what is important in life now.

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Thankyou Gill,Jess and Mary B I've already read your replies about 200 times because i find it reassuring xx Bev...I dont think anyone ever forgets an experience like ours....(and i did laugh at the image of you re-acting the hospital checks) i thought only i did that!!! My legs have never been as sleek and shaved.....at the time of my SAH i hadnt shaved them for ages (It was winter and i needed the extra warmth :lol:) so i was mortified when i finally realised the whole of Bradford and Leeds NHS staff may have confused me for a man!!!! that will never occur again. I think what helps me when i panic is that i am known to have this medical issue (and your known to have had yours) so the medical proffesion do know about us and will keep a check on us. I also have been back to work (part time) and am due back full time in Sept. Thats another hurdle we will have to tackle....not really looking forward to that but then i feel guilty and think i may be punished for seeming ungrateful at been able to return to work...everything seems complicated now because i know i always over think things whereas before all this happened i just sort of lived my life with a "what will be will be" attitude now its like "oh my word what if this happens cos of this" attitude xxx

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Hi Jus,

My sister is a nurse at BRI - I'm going to ask her if there was rumour going round the hospital about a hairy woman who they thought was a man :wink:

Welcome to BTG. It helps so much to find out that others have the same/similar worries to your own & it's good to hear you are taking comfort from it.

Your story about your legs reminded me that for a very long time after SAH I kept a toiletry bag (with some make up in it :roll:) ready to go & told my family exactly where it was. I also had a major clear out of my clothes - this was all because my ex husband trying to help took me pyjamas which weren't actually a matching top & bottom & my filthy, ripped gardening trousers to the hospital for me! He didn't bring me any underwear at all & when I asked for a lip gloss, he took an eye liner :lol: Obviously, these things were necessary to me AFTER I left HDU. The memory still makes me giggle - I was so horrified when the nurses were going through my bag to find me clothes so I could get up, dressed & walk about!! They must've thought I was really scruffy by nature.....cringe.....

No matter how embarrassing your memories of your hospital stay are, the neuro nurses & doctors will always have seen something worse. The need to always be prepared in case you end up back in hospital will fade over time along with the fear of it happening again.

Good luck with your continued recovery & it's nice to 'meet' you here.

Michelle x

Edited by goldfish.girl
Missed the point of my post
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Ha Ha Ha Ha i really did laugh out loud then and scared the dog about the hairy man legs!!!!

I ordered my partner to fetch me some razors along with clothes etc so I quickly shaved them on the ward b4 my angigram and cut myself to bits so the drs ,when they did the ward round, all focused on all the cuts on my legs i think they thought i had gone a bit mad, Andy only packed my red lacy thong so i had to wear that to the angigram they got a right treat!!!

why oh why, we have to keep our dignity even when our brains are exploding-bet they have seen it all hairy man legs-the lot!

Arr u gotta laugh or u would cry!!

:lol:

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Oh god,its good to laugh! ive just been and checked my pupils -yes they dilate ok!!! now for the arm and leg pushing and pulling, the raised eyebrows, sticking out my tongue - oh and I do remember im called Bev Edwards and live where i live! - Crikey, what will they think at work tomorrow when I ask if I can pull them to me and push me away with their legs and grip their hands tight about 5 times???-Yes i have lost it!!!

Ha ha ha

xxx

:crazy::shock:

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When I had SAH....I had carers come around.....they decided to shave my eyebrows....I was in cuckooland and never have shaved them..

plucked them Yes...now I have wonky brows like this ^^ and this ready? """""

In fact I have a suprised look on my face...lol...Swears and holds hands over brows ....

Be Well All

WinB143 xxxx

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oh my word.....:lol:why do that??? i fear no sleep tonight due to all this entertainment...im now fully awake so will go clean the kitchen floor in order to stop laughing...thanks to you all...i feel better xx

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Oh your all crazy on here!! Why oh why did they shave your eyebrows??? Thats funny!:lol:

Enjoy cleaning the kitchen floor Jus.....everyone knows whats happend to me so when i am sat in the window laughing all day they will just think its all part of the bleed and think i have gone mad-i actually think i have sometimes!

I'll let you know how i get on!!!

Laughing is the best medicine isnt it (i think thats what you say)

Big hugs to all my fellow btg's

xxxxxx

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