My Story by Sarah

[kempse]

Having visited this site several time since discovering it about 3 weeks ago and reading, with interest, other peoples experiences, I thought it was time that I shared my own! My next plan is to make a donation to “behind the gray” which appears to be a very worthwhile site. It is my only regret that I didn’t find it earlier, as I know I would have found it invaluable at times during my own recovery.

Firstly, I will apologise that this might be a bit lengthy, but like someone else on the site said, writing about it does get it off your chest and is therapeutic, so here goes…..

My name is Sarah, I live in a village in the Derbyshire Peak District, I am married and have three children - two teenagers and a nine year old.

My story starts on 8th November, 2008 which was a Saturday. I was 46 at that time. I had had a very busy and stressful week of which I will give you a quick insight as I am convinced that these events contributed to my blood pressure being raised and subsequently causing me to have a heamorrhage.

Apart from the normal hectic family schedule of being a part time worker of two jobs, a mother, a wife and a taxi driver for my 3 kids, that particular week also included 3 parents’ evenings at two different schools, my daughter having a bad panic attack at school with a subsequent meeting with the headmaster and my eldest son nearly being arrested for not signing a statement that he had given to the police. The latter happened on 5th November - after giving the statement, which he had no idea he had to sign, he had left the house to rejoin his mates to go to a local bonfire, but rather than come back down stairs and past the two policemen he had left the house via his bedroom window! At this point one policeman said to the other “go and arrest him”, they then told me that they wouldn’t arrest him if I got to him first so off I ran, heart pounding, along with my 77 year old Dad in tow, who had just called by to drop my other son off from football training! I did manage to get to him before the police did, which I thought was quite impressive particularly as they were at an advantage coz they had radios and had already radioed colleagues at the bonfire to watch out for him, which I thought was a bit unfair! My son was never charged with anything so all that hassle and the stress it caused me was quite unnecessary. Also my stress levels had not been helped by the fact that I had just lost most of my savings which had been in shares in one of the big banks that nearly collapsed around that time – a bank that I have worked for since the late 1970’s!

Still feeling uptight by the week’s events on the Saturday morning, I decided I really ought to try and relax a little; I went into the lounge to sit down at about midday. No sooner had I sat down and I got a sudden headache, which I remember thinking was a bit strange as it was round the back of my head. The pain was not too severe but I did nevertheless take a couple of paracetamol.

Then, for some unknown reason, I felt I ought to go and tell my daughter about it -who, with my youngest son, were the only ones in the house at the time. My husband was at work and my other son had gone to a football match. When I got up the two flights of stairs to her bedroom I began to feel a bit odd and lay on her bed for a few minutes. I then got up and sat at her computer desk. At that point I could feel something awful was happening in my head and my peripheral vision was going. As my vision was getting narrower and narrower I thought any minute I'm going to pass out so I quickly said to my daughter, "If I pass out will you ring 999". The look on her face read "Do I have to??" which given that she was only 13 at the time and faced with this situation, was perhaps understandable? However, as I wasn’t sure that I could rely on her doing it, I quickly dialed 999 myself. I remember telling the operator that I thought I was having a stroke, although I really didn't have any idea what was happening - apart from I knew something serious was going on in my head. She told me not to jump to conclusions and to calm down, (easier said than done) Fortunately, I did not actually pass out and my vision soon came back to normal. The local Rapid Response unit was at my house within 2 minutes, and the ambulance was not far behind.

The paramedic did all the usual checks, bp etc. but to my surprise he eventually left saying "Well I could take you to hospital but you've probably got better things to do on a Saturday afternoon"!! Quite what “better things” he thought I could be doing in this state was beyond me!! I did, however, put my trust in him and took his comments to mean that I must be ok.

My husband arrived back from work shortly before the ambulance left and I then managed to get downstairs. I lay on the sofa which is where I virtually stayed for the next few days.

The next day, Sunday, my son woke me from one of my many cat naps to tell me that we’d had burglars! His relatively new trials bike and his rather expensive mountain bike had both gone from the garden shed. Feeling as I did, this was not news I wanted to hear! (I’d already had the house burgled back in 2000 when I was 8 months pregnant) but this time I was in no fit state to do much about it, so my son reported it to the police and sorted it all out. Needless to say the motor bike wasn’t covered by the household insurance and no one has ever been caught.

Anyway "The" headache had set in and on the Monday I got the Doctor round to my house in the hope that he would see there was something seriously wrong. Unfortunately he didn't.

By the Wednesday, about 4.30 in the morning and not having slept all night because of the pain, I rang NHS Direct who basically told me to take less paracetamol. I remember thinking I wanted more painkillers not less!!

On the Thursday, my Dad, who lives near by, drove me the 5 miles to the Doctor's surgery where I saw the same GP who had been to my house on the Monday. Surely he would refer me to hospital for investigation this time? I couldn’t move my head down to my chin which even I knew was not a good sign, in fact I was hardly able to move my head in any direction. Again he did several tests, reflexes etc., but again he sent me home saying that if I was no better by Monday, then I should go back and see him!

The next day, Friday, my parents came round to see how I was (they had been checking on me regularly since it happened) and I broke down saying that I couldn't wait till Monday, the thought of trying to get through another weekend with this headache and no doctors surgery open, filled me with horror.

Although, my Mum didn't say anything at the time, I think by now alarm bells were ringing with her because her father had died from a SAH about 20 years earlier. Likewise he was delayed in getting to hospital by misdiagnosis from two doctors.

My parents left and I must have fallen asleep because at about 4pm my Dad returned saying that he had rung the Doctors and had asked that I see a specialist a.s.a.p. The Doctor then contacted the Hospital and luckily, there was a Neuro Clinic that afternoon so he arranged for me to attend. I asked my Dad what time we had to be there and he said “Now!”

If I had known I would be staying in there for 11 days, I might have packed a bag!!

Despite a long 5 hour wait at the clinic, I eventually saw a consultant, who sent me for a scan - this revealed that I had suffered a heamorrhage. I then had an angiogram which confirmed it to be a ruptured aneurysm. At this point I had never heard of an aneurysm but I do remember feeling relieved that at last someone had found the cause of that horrendous headache and that I wasn't inventing it!

The panic set in when they told me that it needed coiling. Well not so much that, as the list of things they told me might happen whilst they did it! I now know that they have to tell you all the possible risks etc, but at the time I didn't. I just remember thinking how will my children cope if I don’t survive this and I haven’t even made a Will. I was bombarded with statistics of the chances of stroke/survival etc. which meant nothing much to me so I asked the surgeon bluntly, “Have you ever killed anyone off whilst doing it? When he replied “no” I felt a lot better!! Needless to say, the relief when I came round from the anesthetic was tremendous. I woke to a nurse saying "Sarah you're being very awkward" I was trying to get the mask off my face - I thought I was in a Cattle Market Auction!! Probably triggered by the sudden noise from a deep sleep?

Luckily I recovered very quickly with no visible problems. I do however have another aneurysm up there but it is too small to operate on.

On 14th October 09 I had some more coils put in the aneurysm that had ruptured. (This operation had already been cancelled twice – once on the morning I was due to go in - because they couldn’t find me a bed! The second time, I actually cancelled it myself, as it was right in the middle of my fortnight off work and no way did I want to spend my holiday in hospital! An angiogram in April had revealed that blood was still entering the aneurysm. Apparently they had not wanted to put too many coils in it during the first operation for fear of them coming back out into my artery/vein and causing me to have a stroke. (My arteries/veins at that time were badly in spasm and having seen a computer

image of them following the heamorrhage, I'm surprised any blood could flow through at all!!) I have since read that the spasm usually occurs 5-7 days after the heamorrhage and can be devastating – another reason for me being annoyed I wasn’t sent to hospital sooner.

This time I went into hospital on the Tuesday, operated on the Wednesday and out on the Friday. I had been very anxious and tearful in the days leading up to it, I didn’t think I would have been able to get to sleep the night before in the hospital but I did drop off at about 11pm, but an hour and a half later was woken by a Doctor to take blood etc in preparation for the op! It then took me ages to get back to sleep again! I was given something to relax me in the morning (by request) and hey presto, it was all over and what’s more I didn’t even have the usual enormous bruise round my groin!! My husband, parents and two eldest kids came to visit. (My youngest is apparently too young to visit on that ward).

No sooner had they arrived than I threw up – not much of a welcome! The nurse who came to help, advised me that I was born on the same day as her!!

I went for my follow up appointment on 11th Jan this year (a nice way to spend your birthday!!) –apparently they are pleased with the result of the recoiling. I am due for another scan in October – so that’s something to look forward to!!

Somewhere along the line I took part in some research into cerebral aneurysms – I think it was quite a big study and is still ongoing so hopefully when it’s completed and analyzed, even more will be known about the subject. At least I felt that I had done my bit.

The only side effect, apart from the usual tiredness/ memory/recalling words/emotional turmoil etc, that I have suffered from, since the SAH is that I get "flashing lights" from time to time (13 times since October’s operation). These apparently are like those experienced by people who suffer migraine, but as I have never had a migraine and even now, when I do get these zig-zag flashing lights, I do not suffer any headache, I do wonder what causes them. Anyway my Consultant, who has already referred me to an eye specialist, hasn’t yet been able to come up with an answer so I guess I will just have to live with it!

I consider myself very fortunate to have come out of this as well as I have, luckily it has not stopped me from doing anything. The past 14 months have not been the easiest but looking back, I think I can be quite proud that I have managed to do and cope with what I have, whilst recovering from have a SAH – namely my husband loosing his job, (from May to October) decorating three bedrooms, the lounge, hall, stairs and landing, getting my daughter out of her school and into another one, on appeal, and back again coz she didn’t like it! Having to decide whether to apply for voluntary redundancy, which, two weeks after brain surgery is not the easiest thing to have to think about! My youngest son having a bad injury in football training in November and ending up in A&E (a broken nose which later needed operating on) and then, more recently my central heating packed up for 3 days during this cold spell!! Oh and the exhaust has gone on my car! Good job I walk to work!!

I am therefore hoping that 2010 will be a good, or at least better year for both my self and all of you who use this site.

Anyway, I think I have rambled on long enough so will end my story here!

Sarah

[rod123]

Hi Sarah, You've certainly had your hands full,Glad you managed to get your story on and read it with interest, you sound as though you've coped very well and so welcome to the site and i hope you do have a better 2010 Best wishes Rod

P.S Merrill gets flashing lights when she closes her eyes for about 2 mins after she gets into bed each night although i don't think it's as bad now as it was in the begining.

Edited January 16, 2010 by rod123

[KelBel]

Hi Sarah

Wow, what a story!

There is just so much misdiagnosis!...

I totally agree with the "I remember feeling relieved that at last someone had found the cause of that horrendous headache and that I wasn't inventing it!" That is exactly how I felt!

I was misdiagnosed a few times before eventually being sent for a CT scan and the subsequent finding of an aneurysm and coiling op.

Initially when I saw a few doctors who told me I had a virus and should rest and take paracetamol, I started to think... maybe I am being a little over-dramatic about this continuous headache....but I just could not understand how a virus could make my head hurt so much yet not appear to affect the rest of my body. It just didn't make any sense to me...

I recall a lot of what happened to me, but I do not recall them explaining too much about the op, although they did say that there a 5% chance of stroke during the op but 95% chance of stroke without the op, so the odds seemed to indicate the op was the best way forward!

Crikey - You have been through so much since your SAH, you are such a strong person! You should be proud!!

I don't quite know how you coped with 3 children (2 thirds of which are at the nice teenager stage!?), husband, redundancies, car going wrong etc etc...

I feel really tired today because of one young nephew who is so full of beans!!; I am still living at my parents house for the moment, and my mum is looking after my nephews overnight tonight.

My youngest nephew is 2 and a half and made me feel tired within 30mins of arrival!! lol bless him, he is into everything....he wanted a game on my laptop, then he wanted to play a game on my mobile, then he's watching CBeebies on the laptop...then playing with cars, farmyard, footballs etc round the front room...

I am lucky that i don't have children of my own to look after as I don't quite know how I would do it!

You keep getting better, and I hope you have a healthy, happy and stress-less 2010!! (I would say stress-free but you have too many little people and a hubby to look after, so that would just be plain silly! ;oD )

Take care

Kelley

[Tina]

Hi Sarah a very warm welcome to you.....wow!!!.....you have done amazingly.....well done you, take care, look forward to hearing more from you.

Love Tina xx

[Liz D]

Hi Sarah

You should be proud of yourself, what a story! I was lucky form the start, the nurse at the other end of the phone when my husband called NHS24 (that's what NHS direct is called in Scotland) told him she thought it was a bleed. So that's what the hospital was expecting. Never mind about packing a bag, I would have shaved my legs!! I should have gone to the beatician the day of my SAH as we were going out to celebrate my birthday, but I just wasn't up to it. When the doc (a former colleague!!) examined me and said he was going to check my ankles I could have crawled away!! No matter how much pain we are in, vanity will always be there! I can laugh about now but at the time I was mortified, thank goodness for surgical stockings!!

I agree with you about stress. I don't beleive it's the cause of why aneurysms grow but I do think stress can cause them to rupture. I had a bleed when I was 37, a few weeks after my dad died suddenly. Then last year when I had my SAH, I was feeling very stressed. But then stress can raise your blood pressure. I have also found a family link. I don't know my dad's family very well but have spent the latter part of last year contacting some of them. I now know that my paternal grandfather died from a SAH and that I have a cousin who had a SAH February 2008. So finally I know what caused mine. My cousin lives in Canada and it's quite interesting that her daughter will now be scanned regularly, as they say there is a family llink. I will wait to see what the implications for my 3 children and are 5 siblings are here.

I also agree with you about this site. I was 8 months into recovery when I found it. Just to find others who understand is such a relief and the support is just wonderful. It's definately helped my recovery.

Liz xx

[kempse]

Thanks to you all for your "posts" I am reading them, but will respond later. I already typed up a reply but got so many interruptions (Phone ringing, Jehovah Witnesses at the door) that by the time I hit the button, I think I the line must have gone down and I lost the lot!!

Sarah

[caz]

Hi Sarah,

Welcome to you, i too had been told i had a bad headache or migraine even though the pain was so intense, my speach was slurred, right side pretty useless and no sight. My sone and hubby had to get me into a car and to the hospital so i can understand how frightened you must have been. I send you my best wishes and hope to hear from you again soon

carol x

[kempse]

Have finally got a quiet 5 mins – everyone has gone out – it’s bliss.

No wonder, Kelley that your nephew wore you out the other day – I think you did well to last 30 minutes before getting tired!! Unfortunately he will be too young to understand what you have just been through. At least my children were a bit older and had some understanding and sympathy, albeit, it was short lived!! I think I preferred the days when they were very young – at least you didn’t get all the answering back and staying out late etc that comes with teenagers. Hope you are still doing well.

Yes, Liz weren’t those surgical stockings a godsend!! Likewise I can see the funny side of so much now, but at the time when it’s all happening it seems far from being funny. I’m not sure whether I have ready your story yet, have you had two bleeds and one on your birthday?? I would have thought one was quite enough. My consultant didn’t think there was a family link in my case unless either my parents or siblings had had a problem. Neither of my parents have had a bleed, (my Mum will be 80 later this month) and neither have my two sisters or brother. I hope it stays that way. I will have to learn how to deal with stress more effectively!

Tina, thanks for the welcome, I think my anni was on the same artery as yours – Basilar Tip or as I nicknamed it, Basil Faulty!

Rod, yes I was quite surprised when it eventually worked. I can’t believe how many views it has had already!

Thanks also to you Carol for your welcome I think sometimes it’s a pity that pain can’t be seen and then perhaps Doctors might have an idea how bad it actually is!!

Louise, I did notice your welcome note to me on another thread so thanks for that.

Sarah

[Janet]

Hi Sarah

Welcome to BTG and thanks for sharing your story with us. Unfortunately misdiagnosis happens all to often still. I spent almost a week in my local hospital before being diagnosed even though the nearest Neurologial Unit is only a few miles away from us. Its good to hear that despite all that life has thrown at you since your SAH you have managed to make such good progress with your recovery.

Look forward to hearing more from you.

[kempse]

Thanks for your welcome Janet.

I did not get off to a very good start today - I was woken by the phone ringing at 9.15am. It was my boss - I should have been at work at 9 -Whoops!

I didn't realise how much I was still affected by "noise" until today. One of the local town branches diverted all their phone calls to our branch as their computers were down. With only 4 of us in the office today,the 3 phone lines just rang continually transferring from one ring tone to another. At one point I could have burst into tears as it was getting to me that much!!

Sarah

[Vivien]

Hi Sarah and welcome to the site, thankyou for sharing your story. A lot of people seem to be misdiagnosed before it is discovered they have had an SAH.

I think you are doing really well

Vivien

x

[michelle C]

Hi Sarah

Welcome to the family. Well you have been through it. I had to have more coils added last year i now have 11 coils, they didnt put more than 8 in due to the same problem with the coils popping out but unfortunately one did and caused a stroke which has left me with left side weakness, deafness (i now wear bilateral hearing aids) and a leg splint for foot drop. Through all that i am so glad to still be here:-D.

I had those flashibng light thats you mention i used to call them flashing tinsel and no-one knew what they were Karen helped there though shes brilliant, they are migraine Auoras (spelling) theres a thread on here somewhere, sorry cant remember at the mo head all over the place as usual:lol:.

Can i ask did you go to the Hallamshire Hospital?? i am not too far from you i live near Rotherham.

Well take care,

Love luck and laughter

Michelle C xxxxxxxxxxxxxxxxxxxxxx

[kempse]

Hi,

Thanks Vivien and Michelle for your "posts".

Michelle, I'm sorry to hear that one of your coils did actually come out and cause you to have a stroke - I can't imagine how you have coped with all that. I remember being very scared before my second op that this might happen although I did know my arteries were in better condition by then - giving a bit more room to manouvre. (I was obviously unaware the first time round).

Thanks for the tip about there being a thread on the subject of migraine aura - I will try and find it.

Yes, I was treated at the Hallamshire, I don't know what you think, but I have always been very impressed with my care etc. My Consultant and surgeon are really lovely people, although I dont think I ought to mention their names on here! I think we are fortunate to have a hospital with such a good neuro reputation so nearby. Some people, when I was in, had travelled miles to be there.

I have been to the Rotherham area quite a lot recently, my youngest son plays as a goalkeeper for Sheffield Wednesday, Young Owls and a lot of their matches are out your way.

Take care,

Sarah

[DebbieMcKenzie]

Hi Sarah,

Welcome to BTG. Thank you for telling your story. I can well understand how much noise affects you still. I am finding that as well. I went to see Avatar at the movies the other week in 3D and found that I couldn't cope with 3D effect with my eyes. I tried taking the 3D glasses off but that is worse as most of the screen is blurry without the glasses on. I just had to cope with it until the film finished.

There is a great thread regarding those flashing lights that you have been experiencing.

http://www.behindthegray.net/vbulletin/showthread.php?t=5495&highlight=scintillating

I have experienced them twice. The first time, the day after I came out of hospital. I didn't have any idea of what was happening and I ended up back in the Emergency at the hospital. No one had any idea about what they were.

[kempse]

Hi Debbie

Thanks a lot for the info. I will have a look at the thread tomorrow when I'm a bit fresher!

It's a shame you had the experience you did at the cinema - I'm not sure if I would be affected in the same way. I'm so short sighted - I don't know if I would see anything through the glasses anyway! I wish I did know what caused me to have the flashing lights, stress does seem to be a factor but I have found that drinking lots (and I mean lots) of water seems to get rid of it eventually. I think my brain becomes a bit dehydrated and then the water brings it back to life - that's my theory anyway! I was just thinking you, like me, must stay up late on here and then I realised that you are in Australia - has your day just started? I really think I ought to go to bed otherwise I shall be overlaying again tomorrow!

Thanks again,

Sarah.

[KelBel]

Hi Sarah,

Yes my nephew was a little bit too much for me, bless him. But we both had a little sleep and then it wasn't so bad! I would definitely be getting annoyed with tennage back-chat!! lol

Surgical stockings! - eugh, they cut into my legs and I ended up with little blisters on the back of my left knee where they were so tight! But admittedly they did cover up the hairy legs!! lol

Oh god, the noise thing does last a long time then!?

I find I am getting a little bit stressed if the tv is on or music is playing AND someone is trying to talk to me at the same time! I feel I can only concentrate on one thing only.

I cannot imagine what it will be like when I go back to work, with all the phones ringing and people talking etc....I work in an open-plan office, with about 60 people on our floor of the building!!!... eek. Admittedly it is not the noisiest floor, but it can get noisy at times.

I am going to pop into work this Thursday at 4pm to catch up with a few people on my floor, and am then going out for a curry night with a few colleagues after they finish! ;o)

I can't wait to see everyone - but I am a little anxious about how emotional I may be, as it will be the first time I have seen a lot of them since the night of our xmas do and my SAH!...

Hope you have a better day at work today? And did you get in on time??... ;o)

Take care

Kelley x

[kempse]

Morning everyone,

Kelley, hope you have a good time this afternoon/evening meeting up with friends and colleagues. Hopefully you will be ok – I know that I thought I was up to it in the early days then decided it was harder work than I had anticipated, particularly trying to keep up with the conversations especially if more than one person was talking at once. Trying to process information from conversations, in my case, seemed to be harder to do and words weren’t always forthcoming when replying which made it a bit tricky. I quite often had to make an exit from a group of people – I used to get quite dizzy in such situations. This does not mean that you will necessarily experience the same - just take it easy and don’t hesitate to warn them that you may get emotional – that way they might be a bit more understanding? Likewise I don’t suppose noise affects everyone and not very often myself (I get used to a lot of noise in my house) but yesterday it did seem to annoy me, in fact, just as I was going to bed, at about 1am (was ironing till then) next door’s house alarm went off – I have never heard such a piercing screech in my life!!

Luckily I don’t work on Tuesdays, but I still have to get up early to get them all to school/college. Because I overslept yesterday, so did they!

Michelle, I meant to say that when I moved here, many moons ago, our next door neighbour was one of the architects who designed the Royal Hallamshire Hospital. If I had known then, what I know now, I would have asked him to build a bigger car park, more lifts inside and the neuro wards not so high up!! Good view from up there though?

Speak to you all soon,

Sarah

[Super Mario]

Hi Sarah, I was also in the Hallamshire, were you under Mr Patel? When I go to OP now I use the tram because of the parking there. Bit of a haul from the uni stop but I can do it very slowly with rests on the way as it is all uphill.

[kempse]

Hi Penny,

Yes I am under Mr. P. at the Hallamshire. I've never thought to use the tram. The trouble with Sheffield - it seems to be all hills!! Last week when I saw Mr P., I went in by train, got a taxi up to the hospital, a bus back to the station and the train home. It all worked out perfectly with no waiting, apart from an hour to see him, but it was quite expensive to do! The only reason ,of course, that I didn't drive in, was the snow! I'm not sure whereabouts you live other than it can't be far from me, but I saw the main road into Sheffield from here on the local news and it looked horrendous - virtually impassable! Am glad to see the green again.

Debbie/Michelle (and Holly who orginated it) - I have looked at that article which you kindly pointed out to me about the flashing lights. I am now diagnosed!! I have asked doctors, consultants, opticians and eye specialists about it, yet the only answers I've had are from this article! - thanks, it was a great help.

Sarah

[Super Mario]

I have to rely on public transport because my license was rescinded and the disability the SAH left me with means I will never get it back.

Never mind, I cope.

[Karen]

Hi Sarah,

There is also another thread on here re: scintillating scotoma - http://www.behindthegray.net/vbulletin/showthread.php?t=5041&highlight=scintillating+scotoma

There's also a few web links on that thread and you just need to pick out what applies to you...xx

[kempse]

Karen, thanks for that I will look at it later - I have just discovered that someone has taken the plug out of the freezer and now everything has defrosted!! Pity you can't all come for tea -three full drawers of food!

Sarah

[Karen]

Oh my goodness! .... That's something that you really don't need!

Hope that you can save something! xx

[kempse]

Well, I've had an admission of guilt about the freezer - from my youngest son who said he had plugged his disco lights in the socket last night and forgot to plug the freezer back in.

It appears flashing lights continue to be the bane of my life!!

Sarah

[Karen]

Kids eh Sarah! Who would have 'em!