Colleen Posted June 6, 2016 Posted June 6, 2016 Hi Julie, We must always remember that each case is different and your doctors will be most informed about your needs. I was blessed to receive very fast treatment following my rupture, and I did not have any hydrocephalus or vasospasms. My husband literally stayed with me round the clock at the hospital and watched me like a hawk for the slightest sign of complication. The only ones I had were minor in comparison to your experience. Take your time to heal well. Colleen 2 Quote
Daffodil Posted June 6, 2016 Posted June 6, 2016 Hi Julie. How far you have come since the beginning of the year when your husband first came to the site. The exhaustion is frustrating isn't it but I am sure you are doing your best to listen to the signs and take plenty of breaks when you can. Pacing myself at everything is my new normal but four years on it has become part of my habit to remove myself from busy or loud situations to give my brain enough time to just pause and for me to settle and I can report that life is pretty good these days. I was a little younger than you when I had mine and like you now have a shunt , there's a few of us girls in the shunt club, Carolyn, Win, Super Mario, Louise to name a few but I think all on BTG concur that adjusting to that new state of our brain and circumstance is hard going but you will get there. I am sure the surgery will go well for you and it's natural to be worried and fear going backwards. Also when we had the bleed we were out of it for most of the time where as this time you get to witness the worry of those around you which of course you want to protect them from. If you can try to talk to everyone and just all come together in it. I can relate to this in that I had to have my shunt placed three months after my bleed when the hydrocephalus returned and they needed a permanent solution. I had to be back in for quite a number of weeks on that occassion and I remember going to surgery just full of fear but also I knew that in the long run it would bring me and my family some peace of mind by having had the procedure. Which it has of course and that's what I hope will come in time for you. Yes there is a new dimension to uour recovery but you will get through it like Jess said. Take care now. Go easy and steady, baby steps and good luck. All will be well. 2 Quote
Winb143 Posted June 7, 2016 Posted June 7, 2016 Hello Julie, There are quite a few who had clipping, and there is Carolyn who had a totally new one !! I do not remember anything until shunt was in and the lovely nurse I had. She said she would look after me and she did, and I thanked her with a song !! hope it wasn't one of my Dads songs as they were rude lol xx Good luck and it is okay to be scared so if you need a chat come on here as this is a good place to come when down or worried. I had coiling done and keep singing, so after your op expect a song from some of us lol xx Take care and let us know how things go xx singing happy songs and a smile is the best medicine for us xx Love Winb143 xxxx xxxx Drink the water !! it is good for brain xx 1 Quote
Louise Posted June 8, 2016 Posted June 8, 2016 Hi Julie lovely to get your update wishing you all the best take care 1 Quote
Julie Reay Posted August 11, 2016 Posted August 11, 2016 Ok folks Julie here with an update. My clipping was meant to be carried out 5 weeks ago now, unfortunately it's now been cancelled 3 times. I have my next date booked in for next Thursday. Please keep your fingers crossed that this time it goes ahead, I am starting to get very frustrated with the whole process and getting myself very worked up. It might not be so bad if it was a local hospital but it's two hours drive away from us, and I don't drive so it means someone taking time off work to take me...... Normally my poor long suffering husband..... To give you a clue as to what I've had to put up with my opp was cancelled last Friday as there were no beds available in intensive care for when I came out of theatre (I have no problem with this, someone needed the bed more than me ie emergency) So was sent home with the knowledge that some one would call me the following Monday with a new date...... Monday came and went no phone call, so on Tuesday I called them , They told me that someone from the hospital would call me back before 5 that evening.... No one called so I called them Wednesday after lunch.....Well believe me When I say I had to pick myself up off the floor when they told me and I quote oh Mrs Reay I was meant to call you back yesterday to then be informed that I'm meant to be on the operating table now, and they are very sorry for the mix up and not calling me back yesterday.... I am boiling....He asked me what I'd had to eat and drink today, so I told him I'd had breakfast and then I said that it would take me two hours to get over there, he then said oh well we will have to cancel it again and book you in for next Thursday at 11..... I know they were good with me when I had the brain haemorrhage and with my eye ops... But this is now turning into some kind of comedy...... I can feel my blood pressure rising with every phone call I have to make...... I just wish I could get myself back to some kind of normality, for gods sake it's been 9 month since my sah and I don't feel like I've progressed any further. I'm starting to get worked up now for the slightest of things, and once again hubby taking the brunt of it all.... Has anyone else gone through this? All I want is for things to go back to how they were!! And have some decent eyesight back, and a brain I won't fear will explode on me at any second again!!!! 1 Quote
Macca Posted August 11, 2016 Posted August 11, 2016 Hi Julie, First - stop beating yourself up about this. At the moment you have to live with 'what is,' not 'what was' or 'what might be.' Sounds like an appalling mix up with the hospital and you should complain about that in due course because it isn't acceptable. Nevertheless you can do that later. The first thing is to get yourself sorted. Yes, it is frustrating when things are outside your control, so it is a waste of time and effort to get mad about them and it achieves very little, if anything. Instead, try and focus on what you can control and influence. Your hubby is on your side so please don't take it out on him! You will have to see how things are when you come out after your op - and remember, results aren't instantaneous in many cases - recovery is an individual thing and happens in its own time, not necessarily when we want it to. So be patient (no pun intended) and let time and healing take their own course. Many of us have suffered the same or similar types of situation you describe - and we are still here, so there is hope. What you have now is your current 'normal.' Everything you add on after your operation is a bonus, so please be positive, there is much to look forward to, as long as you don't dwell in the past too much! I wish you well - good luck and please let us know how you get on after your operation! Macca 5 Quote
Skippy Posted August 11, 2016 Posted August 11, 2016 Awful mix up for you Julie, but I agree with everything Macca has said. You have a date now, concentrate on that and when it's all done and you're up to it, complain in writing. As for now, try to relax and prepare yourself for next week. We're all here for you Julie xx 4 Quote
Winb143 Posted August 11, 2016 Posted August 11, 2016 Julie I think you need a song by yours truly to cheer you up. ( just kidding) It isn't on though to be serious about it. xx I feel for you getting worked up and then cancelled hold on I'll growl for you, Grrrr !!! My Surgeon told me no stress as it is bad for us, hence the singing and chocolates. You have come this far and although it is annoying ..keep your chin up, and I'll keep my 3 up xx (must lay off chocs) Good luck for next Thursday ? and they are dealing with you without any bleed in their way, so I will wish you all the best. Love Win xx xx A song is at hand when you get over it xx and I'll try not to sing a rude one lol xxxx 4 Quote
Tina Posted August 11, 2016 Posted August 11, 2016 Julie, bless your heart, i really feel for you xx What an absolute nightmare for you and your husband to go through and to be messed about so badly! Let alone the added extra stress and anxiety it has caused you.... it's just not acceptable! I have just been through something similar with ops being cancelled. No phone calls back when they said they would, loads of chasing, phone calls, emails to get another date through. So very frustrating ! As Macca, Sami & Win have already said, please try and relax now you have a date...easy to say i know xx When it's all over and you feel up to it, as Macca & Sami have suggested complain in writing. Wishing you all the very best for your surgery next Thursday. Thoughts are with you, Take care Love Tina xx 4 Quote
subzero Posted August 11, 2016 Posted August 11, 2016 Hello Julie, thanks for sharing your anxieties and frustrations earlier today. I do hope the reassurances of those that have replied, have given you some help as you await next Thursday`s procedures. It is good that your sight has shown some improvement. This must have been such a worry for you in these early days post your SAH. My wife`s sight was very poor for three months due to haemorrhaging behind her eyes, but she was assured that this would resolve..and indeed her sight did improve considerably. I remember it was Andy, your husband who first made contact with BTG back in December. We were pleased that the site was a good support for him then. How is he coping with the difficulties SAH has brought to your family unit ? As a carer following my wife`s SAH five years ago, I know how hard it is deal with the traumatic effects of SAH and to keep the family home functioning under so much pressure. Please tell him we are thinking about him too. Take care and thanks again keeping in touch. Subs 4 Quote
Julie Reay Posted August 14, 2016 Posted August 14, 2016 Thanks guys it's a big help knowing that others have been through the same. Andy's life has mostly returned back to normal, coming home from work to a mad house. I am trying to return to a normal routine cooking, cleaning but Andy has to do a lot more household jobs than he used to ie washing, ironing but we're managing. I suppose you have too! But I am nowhere near returning to work, and fear that it won't happen. I have a very physical job in a factory, and really don't feel like I will be able to do the same job, but I remain hopeful.... Thanks for the encouragement guys, hope your all doing well on your own personnel journeys. 3 Quote
Daffodil Posted August 15, 2016 Posted August 15, 2016 Julie, just keeping everything crossed for this Thursday for you and no more upsets with appointments. Just to add I found it hard at first to balance my disappointment and upset , everything seemed to cut and affect me so deeply. I'm sure looking back I had emotional lability for a while as I would cry at the drop of a hat but even now if I don't cry sometimes and hold the feeling back then I will pay for it. Clumsiliy I'm trying to say don't be hard on yourself that this fear and worry about next op is affecting you, know that it is, let other people know that it is too and so you may be a little sharper around the edges and then adopt a little more ' be kinder to self' attitude at least until op is well in the rear view. Good luck x 3 Quote
Chris G Posted August 16, 2016 Posted August 16, 2016 Julie, Pick out your least favorite household chore, like laundry, and screw it up. You will never have to do it again. Shrink a shirt or something. 5 Quote
Julie Reay Posted August 18, 2016 Posted August 18, 2016 Guess what guys cancelled again. No beds in intensive care. That was atempt number 5 so now been given a date of next Wednesday, praying I won't get cancelled again. I really am starting to give up hope of ever having this op........ Quote
Super Mario Posted August 18, 2016 Posted August 18, 2016 Julie, I can understand the intensive care situation but I was under the impression that you were only supposed to get 3 cancellations before you have to get the procedure done. Fingers crossed that it happens on Wednesday for you. I can imagine how the worry and frustration is affecting you. 1 Quote
Skippy Posted August 18, 2016 Posted August 18, 2016 Oh Julie - that's awful for you - was also under the same impression as SM above - everything crossed for Wednesday for you xx 1 Quote
Tina Posted August 18, 2016 Posted August 18, 2016 Unbelievable Julie !!! Really feel for you. Also have everything crossed for next Wednesday xx Take care Love Tina xx 1 Quote
Winb143 Posted August 18, 2016 Posted August 18, 2016 All what the others have said Julie, bad form on the hospital !! Get in touch with MP, mind if there anything like mine useless xx Let us pray they don't let you down anymore !! I am annoyed for you xxxx Love Win xxxxxx Grrrrrr = Growl in anger xxxx 1 Quote
Sharlua Posted August 18, 2016 Posted August 18, 2016 Nightmare for you but guess hospital cannot predict how many going to need intensive care, the other cancellations just incompetence. Still would go with NHS any day though than have American system. The stress however of getting that procedure and then finding it is cancelled must be awful - got to happen the next time surely - keep strong hopefully will be over soon. Will be keeping fingers and toes crossed for you. regards Sharon x 1 Quote
kempse Posted August 19, 2016 Posted August 19, 2016 Hi Julie, I'm so sorry you are having to deal with all this - as if the operation wasn't enough to think about without all this extra stress. I thought my experience of having further coiling was bad enough, when the procedure was cancelled on two occasions on the day I was supposed to go in. I remember all too well how worked- up I felt having got myself in a state for the operation - it's not nice. Surely, on the law of averages, they can't possibly cancel it again - I hope not, you've been through enough. Wishing you all the best, Sarah 3 Quote
Winb143 Posted August 23, 2016 Posted August 23, 2016 Julie, Is it tomorrow ? don't want to put the kybosh on it so less said about it xxxx but good luck xxxxx I wont tell you about my blood test as that pales into insignificance to yours lol xxx Trying to cheer you up !! You will be fine and remember a happy song and sing it xxx but it must be a happy one also xx Well I'll sign off. Wishing you Good luck and a song will be waiting after your op tomorrow or next day xx just say if you need a song! Love Win xxxx When you smile, smile, smile, smile ,smile ~ a song to keep you in good stead xxxx Shirley Bassey 2 Quote
Chris G Posted August 23, 2016 Posted August 23, 2016 I can only imagine your frustration at this point. But please try to not let the stress get to you. Hopefully they will get it together and get you scheduled soon. Best wishes! Chris 1 Quote
Tina Posted September 8, 2016 Posted September 8, 2016 Hi Julie Thinking of you and hope all is going well. Take care Love Tina xx 1 Quote
Julie Reay Posted September 14, 2016 Posted September 14, 2016 Well guys an update I've finally had my clipping done. Had a bit of a rough time, had to spend a little more time in intensive care than what I would have liked. It was all going so well, came round from my operation and was fine, even managed to eat a sandwich and talk to family on the phone and had visitors. Next morning I was moved to a ward and all seemed to be going well. Problems arose late that day when I started fitting, and had to be put back into intensive care. After losing a couple of days again and thinking someone had been messing about with my phone, I was convinced someone had changed the date from Thursday to Monday. Finally I started to feel myself again come Tuesday and was allowed home on the Thursday. That was two week ago now. Unfortunatly the fit have degraded my eyesight again so I'll apologise if there are lots of spelling mistakes and missed full stops lol. I am hoping that this is going to be temporary and it's going to gradually improve, otherwise it will cost me a small fortune in new glasses. I am now awaiting my coiling operation which hopefully will be carried out in about 6 weeks time, all being well and beds available again in intensive care. Thanks guys for being a sounding board, it really is great just to have somewhere to come when we need to. 8 Quote
Winb143 Posted September 15, 2016 Posted September 15, 2016 Julie , Glad you got a bed at last and sorry about the fits they are poo things to have, I've had mine since puberty but have become stronger since SAH but we will get there. Coiling isn't as bad as what you just had. It is less invasive. (Not that I can remember any of it). You keep well and listen to body and when shattered relax when possible. We have to listen to our bodies more but all mine says is "more chocolates" xx Be Well and all the best Win xxxxxxx 4 Quote
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