Lesley's Story (Shanti)

[Karen]

The following SAH account was written by Lesley (Shanti) and it also appears on the homepage under the category of "My Story"..

Hello to everyone on this fantastic site. Thought I'd jump in (though feel a bit shy!) and introduce myself. My name is Lesley C and I live with my long term partner, Paul in Hyde, Manchester. I discovered this site a few weeks back and spent many a long hour reading all your stories which have helped me enormously in coming to terms with what has happened to me. This is my story:

8 Sept 07 I had a dizzy spell and fell and fractured my left wrist. Whilst my left arm was still in plaster in early Oct 07 I had an episode of a thunderclap headache (though didn't know it at the time, just that I'd never felt pain like it and felt sick and faint) when I was trying to wash my hair over the bath with my right hand. Went off to the local Casualty with my partner, Paul, sent home with 'might be a migraine - come back if it gets worse' advice. Had progressively worse headaches (developed a serious paracetamol habit!) and a stiff achy neck over the next few weeks. Had a few fuzzy/double vision moments in my right eye on a few mornings which would then clear.

8th Nov my sister, Louise persuaded me to go for an eye test as she thought this might be contributing to my bad headaches. (Never suffered from headaches in my life before and hadn't had a proper eye test for years). So phoned Asda and asked for their opticians. Got a cancellation that very afternoon - I will never forget: 3:30 pm! The locum (1st knight in shining armour in this saga!) who examined my eyes, thought there was something wrong behind my right eye and told me I had to go to the Eye Clinic in Royal Oldham Hospital, like NOW! He gave me a letter for my GP and told me to go to the surgery immediately......

I drove my car around to the surgery (about 300/400 metres) and as I parked up, my head exploded with pain and I thought I was going to pass out. Anyway, managed to stagger (its dark by this time) across the car park and into the surgery. My GP was on holiday so gave the letter to the receptionist and told her I had to see a doctor quickly and explained (she must have been blind and deaf not to notice as I was howling in agony) something awful was happening to me. I was taken in to see another GP who then phoned the Eye Clinic at Royal Oldham and spoke to a specialist and arranged for me to go straight there. He had to get hold of my partner, Paul as it would have taken too long to wait for an ambulance as we were now in the middle of the rush hour. Whilst the GP was making these phone calls I'm still howling by the way and obviously trying to keep my skull on by holding it tightly with both hands! The GP (1st pantomine villain you can boo here!) then refused my request for painkillers and insisted that I leave his office and go and wait in the waiting room for Paul and so off I went unaccompanied and cannoned off walls and somehow managed to get down the corridor and back into the waiting room. Everyone was looking at me as I waited for my partner to arrive (approx 15 minutes) as I was moaning in agony. I'd tucked myself into a corner seat by a window and was frightened I was going to wet myself or be sick or something. The receptionist (1st pantomine villainess - feel free to boo here too!) gave me one or two 'Oh my God don't some people make a fuss' and raised her eyes to heaven looks, over her desk in my general direction, the rest of the time studiously ignoring me!

When Paul arrived off we went up the motorway to Royal Oldham Hospital (me howling and trying to keep my head on with my hands all the way) and thankfully once there I was taken seriously, although they weren't sure right away what had happened to me. Poor Paul, by this time he was as white as a sheet and shaking himself! I was given very strong painkillers and some special tablets (haven't a clue what they were, but they were for my right eye). Spent a weird weekend at home propped up on the sofa, but in not as bad pain and went back to see an eye specialist (Mr Nolan - 2nd knight in shining armour) at Royal Oldham on the Monday, 12 Nov, who looked again behind my right eye and more or less said ' lay down on this stretcher, don't move a muscle, I'm just going to call an ambulance'. He made arrangements for me to be taken to Salford Royal (Hope) Hospital and off I went with a wonderful SRN called Bridget Murray off E2 ward (absolute heroine - you can cheer and clap here) who stayed with me until late that night and held my hand throughout (I will never forget her kindness), as I was taken first to Casualty at Salford Royal, examined by a neurosurgeon and then for CT scans.

Results were: right posterior communicating artery aneurysm and small aneurysm in the right sylvian fissure arising from the middle cerebral artery and slightly prominent vascular structures at the foramen magnum of uncertain significance. (Sorry haven't grasped all the acronyms for all this medical stuff yet).

Next morning I woke up to be told by Dr Hughes who was to perform the operation at 8:00 am that they were waiting for Paul to arrive as he was stuck in rush hour traffic. He made it clear to me how serious the situation was and how even surgical intervention might be fatal. We waited another hour for Paul to arrive during which time the doctor and the nursing team were virtually hopping from foot to foot as they had everything set up to perform my operation.

When Paul arrived, Dr Hughes took him aside and I saw Paul's legs buckle across the room, as the gravity of the situation was explained to him, but bless him he tried not to show me how scared he was. By this stage, I personally felt totally at peace and unafraid, literally just going with the flow. With hindsight I wonder if the body secretes a chemical or hormone or something that calms people down when they are virtually at death's door? Would love to hear your comments.

Would just mention that the anaethetist was a lady called Sheila, who was an absolute hoot, made me laugh as they were rushing up the corridor with me to the theatre!

They performed a CTB angio of the larger aneurysm (coiled). When I came round later that day I had a couple of intense shaking sort of fits that lifted me off the bed, just arms, legs and trunk though - didn't lose consciousness or anything like that.

The following morning I managed to thank Dr Hughes for operating on me successfully and everyone seemed very pleased with the outcome of the operation.

Have been left with a strange triangle of numbness on the front of my neck from my chin to my clavicle on the right hand side (getting better I noticed this morning - feeling coming back), tightness in the chest when I'm tired, feel better slightly raised up on pillows, strange taste in my mouth like blood sometimes in the mornings and like Karen, a third nerve palsy of the right eye. Karen would welcome some input on how long it took to get your right eye up and running again. Its mostly 'patched off' as the double vision and light sensitivity makes me feel nauseous.

I can't begin to praise the nursing care I received at Salford Royal enough, they were absolutely fantastic both in ICU (special mention of my namesake, SRN Lesley!) and on B7 and B8 wards. Oh, the delight of being back in the land of the living and that first cup of tea in a baby's feeder cup! Discharged on the 23 Nov, although initially I wasn't keen on the idea of going home, felt safe in the hospital I suppose.

Went back to the eye clinic at Royal Oldham, last Monday 14 Jan to see the wonderful Mr Nolan (who lets face it, saved my life!) and he thinks with time we can sort my right eye out, mentioned special glasses with prisms, but leaving it well alone until 10 March when I'm to go back. The bad aches/pains, mostly confined to the sinus area - brow bone over the right eye - are getting better day by day. (Can't really call them headaches, more just localised aches/pains).

Still having problems with a stiff/painful neck though (on occasion feel like the whole artery that runs up the right hand side of my neck, over my head and behind my right eye feels painful and 'stretched'). I also suffer from terrible tiredness, its literally like the bottom falls out of my world when I've been active for a few hours, and I just have to lie down on the sofa and go to sleep for an hour. Managing to keep the house (I split the tasks over 5 days) do the shopping (Paul takes me in the car) and do the washing/drying etc. Also do most of the cooking (not Paul's strong point) and washing up. I've always been a busy bee and would go crackers if I couldn't do anything. Paul is trying to build up his own business and has enough to do. Its weird not having to go to work though, and truthfully don't think I'll bother going back to work full time when I recover sufficiently, I'm 60 now and worked full time for nearly 40 years so I've done my bit. Will do some volunteer work I think and have more time for walking, travelling and my passion: gardening.

Don't like too much noise and too many people around either. Feel specially tired on return from a supermarket shop or if I've had a friend visiting and been chatting intensely for an hour or two, also long telephone calls. Suppose the latter two come under 'concentration' issues.

Go back to Salford Royal on 30 Jan - must try to remember to ask them what they intend to do about the smaller aneurysm which hasn't been coiled and what does 'prominent vascular structures at the foramen magnum' mean. No mention of a CT scan on the appointment letter re the 30th though, so expect its just a normal appointment to check how I'm getting on.

Also need to ask them if I can have a crown replaced at the dentist, don't know if it was whilst I had the thunderclap headaches, but I have broken off a crown completely and broke the top off another tooth. My dentist said she doesn't want to give me an anaesthetic unless the hospital give the go ahead.

Find it difficult to find words that fit when I'm talking to people sometimes, and come out with hilarious substitutes. Like right now, I know there is a word for this, but can't for the life of me remember what it is. The other day I told a friend on the phone I was 'going smoking now' instead of 'going shopping now'. Its strange when you are in mid flow and suddenly stop dead in the middle of a sentence, not so bad with family or friends but out and about people look really puzzled and you feel really stupid.

To finish must thank you all again for sharing your stories on this site, for people like me, it has really helped just reading them through.

I've been very lucky to survive and blessed by having a wonderful partner of 16 years, Paul who has been fantastic through all of this, held my hand and given endless hugs and reassurance when I badly needed it. Christmas was very special and poignant as I was only out of hospital for 4 weeks, but we managed to throw it all together. Making plans for a holiday end May/early June in the Western Isles of Scotland (our special place). I'll have to find a photo of us both to put on here.

Very Happy

Sorry if I've waffled on too long, feels good actually to share all this with you all,

Big hugs all round,

Lesley xx

Oh, Shanti means Peace in sanskrit just in case you're wondering. I'm into Eastern mysticism and my last words as I went under in the theatre were: Shanti, shanti, shanti

[Janet]

Hi Lesley (Shanti)

Welcome to our virtual family. Like yourself I also suffered a Third Nerve Palsy but mine was o the left side my story is further down on this thread.

I now have near enough perfect vision in my left eye and just suffer with double vision if I bend down to quickly and I get pain around my eye if I'm over tired.

I was originaly told that because four of the six nerves were damaged that I would never get the sight back and given the name of a consultant who is the best in the country for correcting squints as my eye was stuck down in the right corner.

The worst thing for me was the thought of never being able to use my eye again. I had what I call a miracle as my eye started to open and vision return on Christmas Day.

The fatigue in the first few months does get better but its a hard process learning to listen to your body and rest when you need to.

Like you too much noise is a problem and the short term memory is a vey real problem gets worse the more tired you are.

Good Luck with your appointment on the 30th remember to write down the questions you need answers to.

Look forward to hearing more about you.

Janet x

[Karen]

Hi Lesley,

You sound very similar to myself .... and the problems that I was dealing with.

Well, the third nerve palsy ..... when I was transferred from the Neuro hospital to Poole hospital .... I saw an eye specialist and she thought that the pirates patch was slightly archaic ..... so, she dug out a pair of glasses from her drawer, that were fitted with "plain" lenses.....like the type that you would try on at an opticians for the style etc. Anyway, the right lens, which was my bad eye, she cut a piece of Scotch prism tape, and she shaped it, to fit the lens. The prism tape, stopped my eyes from trying to align or should I say stopped the double vision and I must admit, that I preferred to wear the glasses when I was out, rather than the black pirates patch! The patch also caused irritation around the eye and rubbed like billy ho!

When I first came out of hospital and returned home, I often felt like the glasses were no good, especially at night and the patch just irritated me, especially when my eye hurt......so, I bought a pack of round, cotton wool make up remover pads and cut them roughly to the size of the patch, bought some surgical tape and put a few pieces of that on and secured it over my eye ...... it was much more comfortable and I used that method for many months and on occasions, when the eye pain is still bad (which isn't often now), I will still use these pads, especially at night when my eye has had enough.....

I was also given lubricating eye drops, as my eye wasn't moving as it should be. I occasionally still use eye drops and I still have times when my eye feels dry .... it's hard to explain really...... however, the cooling sensation of the eye drops, seems to help.

Again, I was given the notorious "6 month rule" that my eye would be back to normal and if not, that would probably be it. Well, it didn't go back to normal at 6 months......all I can say is that I've had continuous improvement with it, even at 2.6 years post SAH, so don't give up on it. My sight is still quite a problem for me, especially close up and my eyes tire easily. I still can't look upward, without it paining me or look to my extremities......left or right. It also takes me time to focus without anything going into double, but I feel as though I'm still improving.... I'm also nearly colour blind now and even though I had a bit of colour blindness when I was young, I was quite shocked.

The pain around the eye, does improve and for me, got stacks better .... the pain around the eye, was often worse than the headache ... but it does improve greatly and I just used to use the cotton wool patch and take the normal painkillers. You can get specific painkillers for the nerve pain, so if you're suffering then speak to your GP.

I still use the glasses, not all of the time, but now I only have about 1cm of prism tape on them and that just takes the edge off things and stops the eyes meeting and straining. My right eye is still out of alignment, slightly lower, but things are always worse, when I'm tired.....especially at night.

I forgot to say, that you can get physio, especially if the eye/head movement is causing dizziness ...... I did, but only got referred at the 12 month post SAH stage, when the Optholomagist discharged me .....

[Shanti]

Hi Janet and Karen

Thank you for your lovely welcome to the site and for updates on your respective eye progress. Positive feedback like that is invaluable for someone like me, gives me hope that I can get my right eye functioning again in time. If I patch the left eye I can see out of the right, if I take a few moments to focus on one spot. If I look to left or right, up or down though, I have to refocus again. Seeing double seems to have stopped. Everything is bathed in golden light though and colours are deeper than out of my 'normal' left eye.

I too wear a pirate's patch with cotton wool remover pads or a folded over to size tissue (even better when watching TV with my good eye or reading - more cushioned than a cotton pad) underneath, have to remove the pads though when go to the supermarket or I get really 'funny' looks. Do people offer to get you a parrot to complete the 'look' too?

The ophthalmologist mentioned about the plain glasses and prisms etc but will know more when I go back to see him on 10 March.

Like most people on here, just hope I can get my driving licence back at some point. Though don't feel I could drive at the moment anyway with one eye, have trouble judging distances when going up and down kerbs etc.

Already started to make a list for 30 Jan appointment. Its amazing how much I forget now if I don't write it down. Even with a list, I still usually walk back into the supermarket for something after we've loaded all the shopping in the car.

Have been up all night with that awful 'stretched artery' ache up the back of my neck and my left leg and knee in restless mode. Even though I was tired just couldn't get to sleep. Had a curry and a busy day with visitors yesterday, perhaps overstimulated?

Off to put the kettle on, thanks again, hope you all have a lovely day. Can't wait for Spring and being able to get out in the garden.

Love and hugs

Lesley xxx

[Karen]

Hi Lesley,

You did make me laugh about the Parrot! Mind you, at least people can see that there's something wrong with you and give you a wide berth .... If I wear my glasses with the prism lens, then I find that people are a bit more sympathetic and even though I still get funny looks, they do tend to get out of my way.

The depth perception thing, ie. judging kerbs and humps and bumps in paths is a real nuisance ..... mine's got a lot better as the eye has improved. I was also told by the SAH specialist nurse, not to wear the patch all of the time or the eye muscles get lazy and it can hold back the recovery for your eye......mind you, that's easier said than done, when your seeing double and your eye hurts!

Getting off to sleep can be quite a problem for many of us, especially in the early days ..... I could often still be awake at 4am, even though I was dog tired........ I also had restless legs and muscle twitching.......I'm now taking a Vit D and calcium supplement, prescribed by the Doc, as my body had become depleted of both, probably from taking Phenytoin - anti seizure med ..... it's definetly helped. xx

[Holly]

Hi Lesley, I'm glad you've found this wonderful site. I'm so glad that I did, it's been a God send to me. The NHS should point everyone that's had what we've had to this site, ha!

I do like your sense of homour. I love the way you have written your story, bless you, you had a really difficult time.

You're amongst friendly people here, who understands what you are going through one way or another.

Karen, is very special as she has given me so much advice. If it wasn't for this site I know I would be a wreck. I suppose what I'm trying to say is that the information you find on here is great because what we've all gone through seems to be a dark subject to find out about else where. Gosh! I'm rambling on, ha!

Take it easy and take care,

H xxx

[Shanti]

Karen: re restless legs, Paul thinks I should be taking Magnesium and Calcium - will keep you posted on progress if I take the supplements. Drives me mad in the night and is one of the reasons I'm usually downstairs by 4:00 am in the morning!

Holly: thank you for your kind response to my story. Most of the stories on here are pretty harrowing aren't they. But what stands out above all is how brave everyone is. Like you this site has been a wonderful discovery for me, just been reading on another part of the site where Karen mentions stabbing pains in her feet and other strange symptoms. Guess what: yes tonight I've started with stabbing pains in my right sole. Never had them before in my life. So good to know we're all having diverse and weird symptoms post SAH. This site would be a treasure trove of information for medical students if they take the time to catalogue it all!

Big hugs, off to bed now and strangely another weird thing is last thing at night my left leg doesn't want to support my weight on the stairs and starts to go weak at the knee - very odd as its perfectly alright the rest of the time!

Lesley xx