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Hi All

I've just called the Hospital hear in Nottingham and have spoken to my Doctor's secretary. Apparently he has looked at my notes and my referall and has deemed me a 'routine' follow up which I'm told means that he doesn't think my case is 'serious' or 'urgent' :? . It's comforting in a way as he's the Nuerosurgeon so he should know - but also a little put out by the fact that I'm in effect - like you Karen - shoved to the bottom of the pile and left there untill a space arises.

Oh well at least in the meantime I can read all the literature the Nurse Practioner gave me on Anxiety whilst I have my second bottle of water!!!

Speak to you all later

Love

Sami xxx

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Hi Sami,

Good to hear that your counselling session was a positive experience ..... I think that there's probably a lot of baggage that people have in their past that affects them after a SAH ... certainly having a life/death experience makes you feel very vulnerable.

A lot of people I have spoken to, no longer plan things and tend to live for the day. I still feel as though I can't plan too far ahead, I'm not sure whether that's ever going to change now, but it seems to be a common reaction after a SAH. I can't seem to be able to look forward and see tomorrow, I'm only able to handle one day at a time. I used to be so organised ..... always making plans on how I was going to spend my time and my days off from work....always something on the go or people to see. However, by taking it day to day, it has cut down on the stress factor, so may be it's the brains crafty way of making you slow down!

Join the club! re: bottom of the pile ...... like you say though, good news in one sense that he thinks that you are doing okay.

I actually think that the anxiety factor has been the worse thing to handle, so if you are able to deal with that, then you will be half way there. I tend to go through patches of it, depending normally on my physical state.

I still get really anxious when I have the weird pains shooting through my head and last week I found myself shouting out aloud, something like "well come on then, do your worst etc......" (language was a bit more colourful than that) It did have the desired effect of getting rid of the adrenalin.....I'm not quite sure what came over me, at least I was at home with nobody around, otherwise they would have thought that I was going nuts, challenging my head to explode!! :lol:

May be I need the therapy!!!

Anyway, read too much again last night...couldn't put my book down and then couldn't get off to sleep.....I never learn.......still hopefully I will learn some moderation one day! :wink:

Hope your day is a good one,

Love Karen x :D

PS: Do you nibble the chocolate off your bounty first ?

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Hi Karen

I'll answer your last question first - it all depends on how much I want to savour it - but normally yes I do!!! Hahahaha!!

I try to plan things so that I have something to focus on in the future - almost like an aim to reach. Like this Saturday night we have a friends 30th birthday party and I know that if I have a Saturday I'm not going to want to go so I have planned what to do Saturday to distract myself. Paul will have to work again so that'll add to the anxiety and I'll distract myself by watching the Home and Away that I tape through the week - sad I know :oops: then Paul's sister Karen and my aunty Christine are coming to see me Saturday afternoon as they've not seen me since the SAH and I think are both feeling guilty - Lord only knows why. Then I can get ready for the party and that way I am distracted throughout the day but have some thing to aim for Saturday night. I daren't even think about planning holidays though. I wanted to take Siobhan to Center Parcs again the week before Christmas but I can't face booking it for two reasons 1 I don't know how i'll feel then and 2 the SAH happened on holiday and that has kind of put me off going away from home.

Maybe my brain is being overruled by the stubborn so and so that owned it before the SAH and is being told that no I won't slow down and I'll ****** well plan things if I want thank you very much!! :lol:

I get the weird shooting pains in my head too. They were the cause of the anxiety when Paul had to work the other night. I know that they're caused by anxiety aswell as the fact that the brain is healing, its just that when I don't get the headaches I can almost forget that the SAH ever happened. And yeah I said out loud "Don't you dare, just don't you dare. Not when Paul's not here, I will not let you put my daughter through that again" luckily I was looking in the mirror at the time!!

But yeah its almost as if by shouting at 'it' you're defying it and denouncing it and it kind of makes you feel stronger.

I didn't get a very good nights sleep last night - was tossing and turning all night for some reason. Didn't wake feeling bad though. I don't seem to wake focusing on my feelings any more which is progression. Just got to stop being so hard on myself and accept that I am allowed to be emotional without being depressed and that crying doesn't mean I'm weak etc.

Anyway going for a much needed lay down now.

Speak later

Sami xxx

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Hiya,

I'm a nibbler too.....but only in private! (Especially with a Mars Bar Ice Cream) :wink:

Like yourself, I can't plan a holiday....but I can understand how hard it must be for you, after having the bleed and being away from home. I certainly still don't want to fly....I've always suffered with ear ache and popping when I've flown, but if I had it now on a plane I think that I would have an attack of the vapours!! It's bad enough with the pressure in the car. Did you get the pressure feeling in your ears at the time of the SAH?

Anyway, if I go anywhere next year ..... it's going to be in the UK and booked last minute ..... preferably a 5 Star Hotel with a Spa!! :wink:

I've been in contact with Julie Cancea (also a SAH survivor) from the Different Strokes website....she helps out the charity a couple of days a week and was commenting on how we always refer to "my SAH" when we speak about it...and said it's funny how we "own" our SAH. Julie has her story on the Different Strokes site and it's inspiring....if you get a chance then have a read. She seems like a very nice lady.

Glad it's just not me that talks to their brain! Like you, I felt as though having a shout back made me feel more in control, instead of being controlled. Sometimes, think that somebody is going to lock me up and throw away the key! :lol:

It's a good idea to try and divert yourself on Saturday .... being on your own, does get better with time and I still get anxious even now when I know that Eric has to go away. I used to have tears when he went off and felt like a child of about six years of age.....that doesn't happen so much now, only on odd occasions if I'm having some physical symptoms. Once he's gone, I'm fine, it's just the thought of it. I know that the chances of anything happening are slim.....so now I try my best not to think about it. Hopefully, time is still a great healer..............it just feels as though time sometimes, is taking too long!!

Anyway, I think that you are doing marvellously, so just be kind to yourself! Must go, as about to prepare dinner ..... I made a chicken stir fry with a black bean sauce last night ...... it was horrid.......don't quite know what I did with it, but obviously massacred something along the way. (Mind you, the dog seemed to enjoy it...but then again he eats horse poo...so no compliments there!) So, making it up to my kids this evening with something that's hopefully half decent and edible! :lol:

You take care,

Lots of Love K x

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Hi Karen

At the time of MY SAH :) all I felt was a pop at my nape and then the almighty raging pain in the back of my head as if someone has smacked me in the back of the head with a baseball bat.

Will have a look at the Different Strokes website. I actually saw it when I was searching for a help group. I found yours in the same place as Keith did via Salford.

I hate the way I've been told its 'highly unlikey' to ever happen again. I want to know how high highly is. If you're three feet two the ceiling is high but if you're seven feet tall you'd have to duck down - you know what I mean?

I feel like that little scared six year old too so I know where you're coming from.

Good luck with dinner tonight and I hope the kids appreciate the effort and energy it takes :)

Have posted you a private message too.

Take care and catch you later

lots of love

Sami xxx

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Hi Sami,

Hope that you have a good evening and a decent sleep!

Yes, I know what you mean about "is it likely to happen again" .... I suppose it's a hard one to answer .... but it's an important question for those of us who have suffered this... It's okay for the medics to say, "well I have more chance of having one then you" etc.... but unfortunately, with what I've read, I know that it can happen again.

I also happen to know that my coiling has compacted...as I understand, it leaves a neck. Therefore, my coiling isn't 100% successful ... from the papers that I've read you need total occlusion to have a good result. I'm able to live with that fact ..... but sometimes, I wish that I could have had it clipped. I know that there are bigger risks when operating during clipping ..... but I often wonder whether coiling is the cheaper alternative. From what I can see, there's still not enough research re: clipping V coiling.

Perhaps, you can only draw on your own conclusions ..... but I'm certainly going to ask a few more questions on my next trip to the hospital. When I had my angio follow up at Southampton, I received a letter telling me that my coiling was "satisfactory".......at that point, I knew that it hadn't been totally successful....that's what my gut insitinct told me.....it turned out to be right and that the coils had compacted, but they were okay and it was "acceptable."

I know that in the real world there are no guarantees in life....but it's damned hard living with this and you could really do with somebody telling you that "everything is going to be alright". It's very hard at the time to ask the right questions.....I'm hoping that next time I see them....that I will.

Lots of love,

K x

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Hi

I have been warned that the coils can compact and that they may have to be redone but at least that will be a preventative operation rather than a life saving emergency one and yeah I know what you mean - that Body Shock programme about that guy's aneurysm being totally removed - I sometimes wish that they had taken that option with me. My sister in law works at the local hospital and the nuerosurgeons have told her that my coiling was "a complete success" and that they are "very happy with how things went in Plymouth". What we have to try and remember is that anything in life can happen and we can't dwell too much on the fact that it could happen again. If we dwell on it too much then it does stop us being who we really are. There is nothing we are going to be able to do about it if it does happen again so what is the point in getting worried. I'm taking comfort from the info that my sister in law passed onto me and also that my allocated specialist doesn't see my case as urgent.

I will be asking loads of questions when I get my appointment. The thing to do is to get a little note book and when you think of a question write it down and then take it to your appointment - that way you canwrite answers to the questions down too for future reassurance!!

Anyway off now, so I'll catch you tomorrow.

Lots of love and hugs :D

Sami xxxx

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