New member Carole

[Carole]

Hi everyone,

I had an SAH just over three years ago now and have only just come across Behind the Gray.

Mine happened whilst visiting my Dad in hospital. I just bent down to switch the tv off in the dayroom when I had, what I thought was a terrible headache coming on. I quickly realised it was not and the jarring pain in my head, shoulder and neck had me on the floor in seconds!

Unfortunately, the hospital I was in was a geriatric altzheimers one and I had to have an ambulance to another one. Once they realised what it could be, I was transferred to yet another hospital (all in my home area). There I had a brain scan and the burst aneurism was discovered.

For the next eight days, I was kept flat on my back in bed, with very little info given to my husband and family. My hearing was very sensitive, and every little noise was magnified. I was put on a fluid drip and encouraged to drink as much as possible, as this evidently helps. I was also light sensitive. The nursing staff and cleaners didn't seem very aware of my condition and if it wasn't for my husband and daughters taking it in turn to try to help and encourage me to eat, I wouldn't have had anything!

On the seventh day, the consultant or surgeon came to see me and my husband at the bedside, and said an angiogram would be done and if I survived it, they would consider surgery. (all week doctors had been saying, "if she survives the next 24hours, we'll consider this, and if she survives after that, we'll do that"!!!) we had no encouragement or hope given, it was all very frightening and updating.

After the surgery, it was obvious that it had worked, and although recovery seemed endless, I felt lightheaded with relief (as did my family and friends).

I was sent home a week later, and although at that time, I could hardly walk and couldn't open my mouth more than about a quarter of an inch, I was very relieved!

Since then, I have had no contact or check up from the hospital or doctor, and just had to get on with it myself.

Sorry this is such a long first entry, but I felt I needed to get it off my chest!

Thanks for listening and just being there.

Carole.

[donnamarie]

Hi Carole welcome to behind the gray.

Most people dont have the greatest experince with getting information in hospital but if i was you i would ring your consultant or GP and ask why a follow up was not done. look forward to chatting to you

donna

[Lin-lin]

Hi Carole,

Thanks for posting your story it was interesting to read, perhaps doubly so for me as I live nearby! I live in Skewen, just up the road from you!

I am assuming that you were treated at Morriston? You may be aware that the neuro ward has since closed. I was treated at the Heath, Cardiff, two years ago in November 2009.

My recovery has been good physically although I do moan that I cannot run as fast as before and I am not as ‘dynamic’ when it comes to yoga and pilates; but I do acknowledge that I am lucky to be able to grumble about such things.

The greatest challenges for me have been emotional and psychological. I just feel different. I don’t like the same things and find it hard to engage with some of my old friends. It’s a very strange. I look the same and sound the same, but I am not the same. I can sometimes feel detached from people.

I receive help from Headway. We meet at Penllergaer which is where the Swansea branch is based. I receive group counselling with a counsultant neuro psychologist which has been invaluable.

I have also made friends which have helped with my emotional recovery. I have found adjusting to my new circumstances very difficult, grappling with a loss of career, athletic ability and social life. Headway has been a life saver for me, as has this site.

Here is a link for Headway,

http://www.headway.org.uk/home.aspx

Look forward to chatting soon,

Lynne

[shirls]

Hi Carole

Sounds like you and your family were treated very badly. Welcome you will find lots of help and advice from everyone on here.

Shirls

[Louise]

Hi Carole

Warm welcome to the site.

I am so sorry you've had such a bad esperience reading Lynne's entry about Morriston being now closed if you were thats maybe why you've had no contract or check-up, if it wasnt I'd get onto where-ever because you should have had at least one check up to make sure everything was ok....

Im glad you found the site and hope to hear more from you....

take care

[Sandi K]

Hi Carole,welcome to BTG. Your treatment in hospital was awful! My heart goes out to you, it must have been a very scary time for you and your family and I know you will have left the hospital with many questions. I wonder if you've not had any follow up because the neuro unit closed? Several members here have follow up appointments even years later, it might be something to discuss with your GP.

Sandi K.

[Lin-lin]

I agree that you should have the courtesy of a follow up appointment, just for peace of mind.

That said, follow up appointments concentrate recovery on the physical only, (as is important,) but if your physically 'fine' there can be an expectation that you should then 'just get on with it.'

The neuro psychologist I see at Headway is actually a Consultant from Morriston, so I don't know whether he could give you some pointers.

Alternatively, maybe the first port of call is your GP. I don't know whether you were coiled or clipped, (I am guessing clipped because I understand from friends at Headway that clipping was the familiar procedure at Morriston at that time,) but as a matter of course you should have been re-called for a check up.

I am aware that there are some basic neuro equipment left at Morriston and I have had CT Scans there, but for better scans I have had to travel to Heath, Cardiff; so maybe you will have to travel a bit further afield for them these days.

Maybe your GP needs to be told your story. Your treatment does not seem to have followed the usual pattern and you need an explanation as to why.

Take care,

Lynne

[KelBel]

Hi Carole

Welcome to the site! I am glad you have finally found us, and you are already receiving some great advice on your thread.

It is awful that most of us leave hospital with little or no information given to us.

I do hope you manage to follow up with your GP or the hospital and get some advice.

Take care

Kel x

[Janet]

Hi Carole and welcome,

If you were clipped in most cases you are only seen once a couple of months after the op. Normally the Angiogram they do either before/after the procedure will have shown them if there were any further problems which you would have been told about. I also think you should see your G.P about maybe getting referred to a Neuro unit just so that your notes can be reviewed. Look forward to hearing more from you.

[Carole]

Hi, Thanks for letting me know about Headway, I have emailed them for more info.

I believe I was clipped as the surgery was through my skull, not via a vain in the groin.

I'll let you know what happens. Not sure if I'm doing things correctly on this site - it's all new to me. I'm more used to emailing and buying and selling on eBay!

Carole.

[Carole]

Hi Carole welcome to behind the gray.

Most people dont have the greatest experince with getting information in hospital but if i was you i would ring your consultant or GP and ask why a follow up was not done. look forward to chatting to you

donna

Hi, thanks for the advice, I'll check with the doctor.

Cute dogs by the way!

Carole

[Carole]

Hi Carole

Sounds like you and your family were treated very badly. Welcome you will find lots of help and advice from everyone on here.

Shirls

Hi, thanks, the help and advise given is much appreciated.

[Carole]

Hi Carole

Warm welcome to the site.

I am so sorry you've had such a bad esperience reading Lynne's entry about Morriston being now closed if you were thats maybe why you've had no contract or check-up, if it wasnt I'd get onto where-ever because you should have had at least one check up to make sure everything was ok....

Im glad you found the site and hope to hear more from you....

take care

Hi Louise,

The neuro Ward was open for at least a year after my op, (I wasn't aware it had closed yet).

My husband organised a charity event at our local club and we presented the ward with a cheque, that was about 9-12 months later. Hope you're ok, Carole.

[Carole]

Hi Carole,welcome to BTG. Your treatment in hospital was awful! My heart goes out to you, it must have been a very scary time for you and your family and I know you will have left the hospital with many questions. I wonder if you've not had any follow up because the neuro unit closed? Several members here have follow up appointments even years later, it might be something to discuss with your GP.

Sandi K.

Hi Sandi, yes, it was very scary at the time.

I've made a mostly complete recovery now, just a few memory blips and I get dates and numbers mixed up sometimes, but that could be partly due to age and being blonde!

Thanks for your reply and sympathy, hope you're ok too.

Carole.

[Carole]

Hi Carole

Welcome to the site! I am glad you have finally found us, and you are already receiving some great advice on your thread.

It is awful that most of us leave hospital with little or no information given to us.

I do hope you manage to follow up with your GP or the hospital and get some advice.

Take care

Kel x

Hi KelBel,

Thanks for the encouragement, will let you know any news.

Carole.

[goldfish.girl]

Hi Carole,

I'm guessing that you don't feel that all is fine now if you are searching on-line after 3 years? If you felt ok & life was back to normal you wouldn't be here?

Headway & the other advice you have received on this thread are the best way forward.

Good luck & I look forward to hearing how you get on.

Best wishes,

Michelle

[Carole]

Hi Michelle,

I think it's because I feel so much better now, that I am starting to question a few things.

My family and myself found a lack of communication on the ward during the eight days before the op, and we were given no hope, only doom and gloom, from the doctor on his rounds.

We are very grateful to the surgeon who operated and he did visit me a few days after it before I went home, but it was a brief visit, (understandably), and a lot of my questions went unanswered.

At the time, I just wanted to go home and try to put life back together.

Now, I wish there was more that could be done for people and their families, in this position, to help them understand things better, and their feelings taken more into account.

I did a gradual return to work eight months after my surgery, and now work part time instead of full time but feel and look much the same as before, just a few minor differences.

I feel very lucky and it has brought me and my husband even closer. I live for today now, and don't worry about little things so much!

Thanks for your message, hope you are ok too.

Carole.

[Carole]

Hi everyone,

I think some of my replies went to the wrong place, sorry.

Anyway, just to let you all know, I am grateful for your messages, and will be making a few enquiries with my doctor.

I have made an almost total recovery and am now back in work part time.

Just wish I could do more for others in our situation. It's a very scary time!

Thanks again, Carole.

[Lin-lin]

You appear to have made a very good recovery which is very encouraging. You come across very positive.

If you are interested in helping others, contributing on this site is a good start. We frequently get newbie’s joining, some who are only a matter of weeks post SAH. Their anxiety, fear and frustrations are quite palpable in their initial posts and so it is nice to be able to tell them that we felt the same at their stage in recovery and that it gets better. It is always a lovely experience to sense how their posts become more ‘relaxed’ as the months unfold as they gradually learn to accept what has happened.

If you are interested in helping further, Headway do some outreach work where volunteers visit local neuro rehab wards (I think there’s one in Port Talbot,) and they spend some time talking to patients and share experiences.

This is something that I am interested in, although I am not quite emotionally ready yet. It is certainly a long term goal nevertheless. My main priority at present is re-entering employment as I had to leave my career. The environment was totally unsuitable post SAH and I had to be realistic. All my mental energy is used for trying to get a job at the moment and together with my voluntary work, I do not have enough mental energy ‘spare’ to help Headway.

That is what I find most frustrating post SAH – the reduced mental energy and the inability to be as busy as I was. I am accepting it slowly, but that does not mean that I always like it! The sense that I am missing out on the usual milestones at my life’s stage can be irksome! However my friend’s at Headway have gone through the same and so I do receive some comfort from the shared experiences.

Anyway, I’m hi-jacking your thread with my own personal problems….you see – you’re helping out already!!

Lynne

[goldfish.girl]

Carole,

It is brilliant to read how well you have recovered and how positive you are. It's very uplifting

Michelle x

[Carole]

Hi Michelle,

I see you had your SAH a few months before I did, how are you now?

I've just been babbling on about myself mostly, so far!

I have been wowed by some of the stories from others that i've read, and am glad to feel that I'm not alone.

I'm still getting used to finding my around this site, hope my messages are coming out ok now.

Do I reply to each person individually, or just do one message and name people in paragraph form, sorry to be so thick, but this type of thing is new to me.

Thanks Carole

[Carole]

Hi Lynne,

Thanks for making me feel welcome and yes, hopefully I too will help to make others feel a bit better.

I have emailed Headway, (not had a reply yet), and may look into visiting patients. Sounds like a good idea.

Sorry to hear that you had to give up your job, but who knows, in time, maybe you will be well enough to do the same type of thing again.

I was a full time receptionist and animal carer before my SAH, now I work part time, at the same place, and co-ordinate and train volunteers at the Centre, and only cover reception when my replacement is off. I don't have the same concentration level that I had before, and prefer to do one thing at a time. Before, I used to multi task a lot and do a few things at once! I was usually rushing around arranging adoptions, (animals, that is), vaccinating, micro-chipping, dealing with upset/angry, usually lovely people on a day to day basis!

By the end of the day, my head would be spinning, even though I got a lot of job satisfaction.

This could not continue, obviously, when I made my gradual return to work.

I have improved a lot in the three years since it happened, although I didn't always show how I was feeling and tried to cover it up a bit because I thought that was the best thing to do. Maybe I should't have, but I've got by ok and everyone says I look and seem fine. Hope you feel as good as you look good in your profile pic!

Anyway, I'll keep a look out for newbys and try to help a bit.

Thanks, Carole

[goldfish.girl]

Hi Carole,

I'm going to let one of the more experienced people or the moderators answer your questions about posting on here - I'm afried i'm a bit of a biff on computers these days (even though my job was all computer based )

Very much like yourself, I can't multitask any more! I have memory/balance & organisational problems but mostly feel I got off very lightly after a SAH, The major issues for me now are fatigue & constant headache which massively impacts on my life. I have just found out this week that I am being given Ill Health Retirement from work (i have worked there for 23 years but been on sick leave for 14 months). I did go back to work for 2 yrs after SAH but unfortunately I'm no longer very good at that type of work & also had to keep dropping the hours due to tiredness etc. I will now have to think of alternative work that I could do well It's a new chapter for me & reading stories like yours gives me hope that I can find something else to be good at.

Michelle x

[Janet]

Hi Carole it is up to yourself if you want to respond individually to people but you can just mention whoever you want in one post. We have several forums as you will be finding out for different topics and for general day to day chit chat the Green Room. Take your time you'll soon learn your way around and any questions just ask someone will always point you in the right direction.

[kempse]

Hi Carole,

Sorry I'm a bit late is saying hello. I too had my sah just over 3 years ago, although I must say your experience in hospital sounds much worse than mine.

Glad you found this site - it took me just over a year to find it, but it certainly helps knowing of other peoples experiences.

I wish you well in your quest to help others,

Sarah.