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Hello - Bagpuss


Gill C
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Hi there have just registered today. I am a 43 mother of 1, in April 2010 I suffered an SA (which didn't burst as far as we know) behind my right eye. It took 6 weeks for them to diagnose my SA despite the pain I was in & the problem with my eye dliating & then not moving, followed by a 3rd degree palsy. I was whisked into Southampton neuro with less than an hours notice & operated on the follwing day as an urgent case, my anyusirm was clipped.

I am now home 7 slowly recoveing lthough my eye is still not functioning properly, I am getting contradictory info from the local eye clinic from the neuro consultant as to how good the recovey will be which is very frustrating.

I m just looking for people who have been through the sme thing to share experinces with

thanks for reading"

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Hi Bagpuss a very warm welcome to this site.I'm afraid I can't give you any reassurance re the location of your anni etc; mine was in a different place,the effects were different but you will find some one here who undoubtedly can! What I can tell you is that it is such early days for you, recovery is a slow process! Stay positive and strong it's the only thing to do at this stage. Wishing you all the best and looking forward to hearing of good progress in the near future. Maggiex

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Good Morning Bagpuss and Welcome,

Sorry to hear that you were messed around with for so long but now you can let the recovery begin.

As maggie say's (morning), you are at the start of a slow healing process. Have a browse through this site and you will notice one thing....you are not alone. We all have our stories and we all need to talk to other people, that are going through or have been through the same thing.

"Let the healing begin"

Gary

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Hi Bagpuss and welcome! :-D

There's a few of us on here that have had a third nerve palsy to the eye. The double vision is the pits and one of the worse things to put up with after a SAH, especially in the evening when you start getting tired ...so I know how you're feeling!

My sight took quite a while to get better and I still have double vision to the extremes. It took me ages to be able to look up at the sky or a tall building, as it really took me out of my comfort zone. When I left hospital, I was told that my sight would be back to normal in six weeks and they didn't seem too bothered about it. However, it didn't and I saw the Optholomagist (spelling?) for at least 12 months, it was probably longer. I had to wear glasses with one of the lenses being covered with prism tape to help. When my eyes were particularly tired and when I was feeling dizzy, I used to completely patch over one of the eyes with a cotton wool cosmetic pad and surgical tape!

You're very early into your recovery, so I would imagine that it will take a while for the eye muscles to become stronger and start to align. There's been a few posts on here about double vision and nerve palsy, so it may be worth your while to do a forum search using those keywords. The search box is at the top right hand side.

Wishing you well....xx

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Hi

A warm welcome to the site. It has helped me enormously.

I didn't suffer the exact same as you. I suffered a SAH on the 21st November 2009 following a burst aneurysm.

One common thread amongst us all, is that the recovery is slow. Accepting this is part of the battle. It's still very early days for you and it takes time for our emotions to settle.

It took me around six months to become patient! I tried to slot into my old life but it made me tired, upset and frustrated. I am now working within new parameters and lowering the bar means I am now 'achieving' instead of 'failing.'

Let us know how you are getting on and we'll be more than happy to help.

L xx

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thanks for your replies, it's very reassuring to know there are people out there who understand as my hubby just keeps saying I am getting better but then he can see it whereas I can't it's so slow"

I am very angry still that the first time I presented at hospital they dismissed the severe pain behind my eye as a migraine (I di have one whilst there but I've hd migraines since I was 13 & it never caused me to roll around the bed in agony!). The Cons I saw ddn't want to to a ct or lumber puncture because of my weight & was thoroughly unsymapthetic & rude. It took 17 days for arrange an emergency MRI & a further 8 days for the report to come through!:oops

My eye is pretty bad, they tell me it's too far off normal to correct with prisms at the moment but the Cons didn't examine me other than to ask if I could open my eye!

Ijust want to be able to drive again but it's up to the DVLA, Karen are you allowed to drive & if so how long did you get suspended for (if any) & how do you find it??

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Hi Bagpuss,

Welcome to the forum. I too have third nerve palsy. I am a year into recovery and please be assured your eyes will get better. I couldn't have prisms as the were too far out from each other. My double vision lasted five months and they made me wear the tape on my glasses. I remember one weekend when the single vision first started to come back. It was only for around 10 seconds and kept happening for a good hour. Next day I managed to hold it for about 25 seconds each time. I was so elated I sent lots of texts telling my friends the good news. As time progressed it has just got better and better. I now only have double to the extreme top, left side and at the very bottom. When they told me to give it a year I was horrified. But honestly you do start to change your own opinions along the way. Now I say " what's a year in comparison to a whole life.

As for the driving. well it's a real big issue for me. I was driving in my job and still don't have my licence. I do have a pretty big blind area, which I think is causing the hold up. Hopefully that wont be the case for you.

You are so so early in your recovery, Please give yourself time to allow your brain to work on things. I hope you continue to improve and can find the patience to allow it to happen.

Sally x

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Hi Bagpuss

Welcome to the site!

It is so good to have so many people to chat to who understand how we are feeling, or can help answer questions we may have.

Sorry to hear you were mis-diagnosed and messed around…it unfortunately seems to be a common trend for us SAH’ers…

17 days to arrange an ‘emergency’ MRi??! That is disgusting.

I did not have any nerve palsy so am unable to comment on that, and my aneurysm was coiled rather than clipped, but it is still very early days for you and lots of rest will be needed for some months yet I would imagine. It must be difficult having a young child to contend with too...

I am very overweight (in fact my operating hospital did send a letter to my original hospital for them to “please accept this obese lady back into your charge”!! charming) yet I was able to have a lumbar puncture? I do not see why they were unable to do one for you, although mine took 50mins longer than the 10mins they initially advised…and was most uncomfortable and inconclusive! I had also had 2 CT scans prior to the lumbar puncture (one without and then with dye).

It really does seem to depend on what hospital you go to…the levels of care and the procedures used to determine what has happened are all different. Also the follow-ups and after-care vary around the country.

Is there anyone at the school who might be able to give you a lift back home if you are able to walk your son to school? Or would you be able to get a bus back home? You may be entitled to a disability bus pass at the moment (if you are unable to walk a certain distance). Have a look at your local council website.

Take care

Kel x

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Hi Bagpuss,

I had coiling and not clipping so the DVLA rules for driving post SAH, (I think) are different. However, I was allowed to drive at about 3 months post SAH, on condition that I wore the corrective glasses or patched over the eye to correct the double vision. Mind you, I wasn't capable of driving at that stage, as also had balance problems.

I probably started driving around the 4 month stage, but only very short journeys ... I still find long journeys a problem now, with the concentration and strain on the eyes....but, I can do enough to get me by.

Keith, one of the other Administrators has written a short article on Driving and the DVLA ... there are some links in his piece, that will take you to the DVLA website and where you will be able to get some info. Click on - http://www.behindthegray.net/vbulletin/content.php?174-Driving-After-a-Subarachnoid-Haemorrhage

I'm not sure if you realise, but you also have to inform your car insurance company that you've had a SAH. I believe that they can't discriminate against disability and therefore your premium shouldn't go up .... mine didn't and as long as the DVLA have declared you fit to drive, then it's okay.

Hope this helps....xx

By the way, I'm curious as to how you found this site, as I know that sometimes the SAH support nurses at Southampton give out our website details? Or did you just do a search?

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I saw the link on the Brain & spine foundation forum forum which I was told about by the Neuro nurse specialist at Wesex (louise).

I am just so needing to talk to other people who have been through the same thing right now, 3 weeks of the same 4 walls is driving me slowly mad:roll:

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Yep, it's good to talk to other people and after the SAH, you can feel a bit isolated to say the least and you can overdose on daytime TV! The vision problem is a big pain too, as you can't really do very much. I also used to get quite a bit of eye nerve pain and that's not nice either.

The website today is fairly quiet, but there's always normally people in and out of the Green Room forum during the day just exchanging a bit of banter...

I was also treated at Wessex Neuro, five years ago ... the two SAH nurses then, were Sarah Halcrow and Lesley Foulkes. Being nosey, do you live fairly local to Southampton? I'm about 25 miles from Southampton and live in Wimborne, Dorset. I'm presuming that Southampton are still running their bi-monthly SAH support group meets? ... Just realised that I'm bombarding you with 101 questions, sorry!

xx

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Welcome to this site.....BTG

I do like your name...I normally include pictures or gifs of your name as it helps my memory. Maybe not today.

Sorry about your experiences right now....they will improve over the weeks to months.

I can't add much more as I am a 'popper'...SAH. I can't use the other word here as I had internal bleeding when the aneurysm popped.

But Welcome... and we look forward to hearing about your definitely improvements.

Catch you later Bagpuss

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Karen it is Lesley not louise (this is where my head if not so good, I find myself doing stilly things or forgetting names I've known for ages!)

I e-mailed lesley & she mentioned the Wessex support group & I think they are restarting it cos she said they are working out how to do it & where so hopefully she will let me know when that happens. Did you have Mr Sparrow do you op? Ithink he's fab, very straight talking but he came in on Sunday to do my op specially.

I live the other way from you, Hampshire not Dorset, we are about 20 miles frome Wessex which was hard for my hubby as it tookhim an hour each way in the car & then had to sort out our little boy. He's been amazing & I know when I was in HDU I scared him as the vaspasm was bad so he can see very little improvement whereas I don't really reember HDU (other than it was awful) so can't see how far I have come!

I don't mind questions, it's just so great to 'speak' to people who know wha I'm going through:-D

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Think that my coiling was carried out by Mr. Millar and my consultant was Mr. Duffill.

Honestly, I am an idiot, I can now see that you've put your location under your photo!.. D'oh! :lol:

Oh! I'm surprised that Wessex Neuro have stopped doing the support evenings. I only went to one, but it was well attended. Hope that they get them up and running again.

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I think they are still running, Lesley wasn't very clear in her mail, this is what she said

'We run a support group, which we are currently sorting out how it would be best run, and at what venues. As soon as I have the details I will let you know.'

I don't remember the other Cons names & there was always an entoutage that came with the surgeons when they came round, there seemed to be 2 rounds day for some reason! I am waiting for my review appointment which should be another couple of momths. Hopefully I will see Mr Sparrow then.

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Hello and welcome! I'm sorry you were messed about like that :( I know not everyone gets the right treatment, and I suppose not everyone has the right symptoms, but still..... Anyway, you're over that bit now, so it's time to look after yourself and look to the future. My aneurysm was behind my right eye too, and I am obese, but I was so unwell the junior doctor requested a CT right away so I was lucky. Mine was clipped too.

After the op I had double vision while I was in hospital and they took me round to the ophthalmology dept to get the optic nerve checked out, which was interesting because I was working in that department when I had my SAH! Everyone was so lovely and keen to get me sorted. I didn't need a prism in the end because the double vision wasn't that bad, and the optic nerve wasn't swollen so I was told to "wait and see". My eyesight is fine now although I think it has deteriorated a bit but then I hit 50 when I had the SAH so maybe that's why!!! It's just my age :lol:

So, the main thing you'll realise chatting to people here and reading their stories is that you are NOT ALONE!

Take care and be gentle with yourself.

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HI JK

I did get a ct scan on the day I presented at the eye clinic with the beginning of the 3rd nerve plasy (dilate pupil & double viosn), it was onw within half an hour but it was clear. I was then referred for the MRI & that was the appointment I got 17 days later, we had thought of going private but as it wsa brain & blood vssels Spire wanted £1000 for it. At that stage my pain seemed to be being managed & i assumefd (wrongly) that as the ct was clear I wasn't in any danger!! I had the MRI & again assumed because I'd heard nothing within the first few days that there wasn't anything serious on there. I recived a phone call at 8pm on the Fri night telling me I needed to go in & was called on on Sat by ths sister on D neuro & operated on at 8.30 am on the Sunday. i only found out how serious I was after the op really. I am still thinking of complaining to the hospital CEO & even my GP friend has suggested legal action because of the delay when my symptoms were classic SAA.

I read the NHS website about when SAA's start & even that fitted in with what they said ( I was on the loo when the pain hit). i am still angry about it all but not sure what action to take?

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Hello Bagpus

sorry for the late reply but have been having difficulties with the changes to the web and had to re-register

Firstly wellcome to BTG, I am another of those who like you/Sally/Janet/karen and quite a few other had a 3rd nerve palsy. I too had to ait 15 days to get a right diagnose of my SHA and only got a ct scan done when my right eye closed and started with double vision.

My eye took abt 2 months to open and at least a further 2 to 3 to gt from vision, like Sally and after a year I have double vision when looking to the extremes , except the left which is ok.

Been told by a member of another site that if you get some improvement you will end up getting it all back but it takes about 2 to 3 years.

Anyhow dont take my word for it as Karen has passed that time and still has difficulties. Anyhow you get used to it I guess, think of all the people who live with one eye due to an accident etc.

Anyhow patience and time, that is what you need. Still very early days so be calm and take each day as it comes. Any questions pls feel free to ask:-D

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Thanks luisa & glad you managed to gt back on BTG has become my lifeline very quickly!

My eye now opens halfway & the pupil is less dilated than it was.I don't get that horrible flare on a bright day like today any more.

OMG 15 days??? Were you in pain that whole time? My pain was managed after a bit but sleeping with the pain was inpossible & the less sleep i got the worse I felt! I cn't understand why it takes so long to be diagnosed as clearly when you pupil is dilated itis' something serious? I had my GP & my GP friend saying it looked like a bleed weeks before the MRI. My palsy started to kick in after 10 days from my initial presentaion at the medical admissions unit with the pain in my eye/head. The MRI was 17 days after the CT so in all it was 27 days. I had been to teh GP at least 4 times between the fist visit & the MRI & spent over £40 on prescriptions of diclofenac & anti b's for an eye infection!!

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Hi Gill,

Quite thought I had posted on your thread, but it appears not - perhaps cos I have spoken (so to speak) in the Green Room. Anyway, welcome to the site - I know you have found it to be godsend -it certainly helps being around people who can relate to your situation.

I'm sorry to hear it took so long to get your diagnosis, that unfortunately seems to happen all too often - I, for one, called 999 as my heamorrhage was taking place but the paramedic just left me saying I had probably got better things to do on a Saturday afternoon than go to hospital!!

I hope your eye improves for you over time - my eyes were not affected but I have recently started to worry as I have an unruptured anneurysm close to my opthalmic artery and was rushed to hospital on 26th June with double vision. I have not had any double vision since but that was the reason for going for an MRI on Sunday and I have an appointment next Monday with the consultant - which I am getting a bit anxious about.

Wishing you all the best in your recovery,

Lovely photo album by the way.

Sarah

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Thanks Sarah, I hope your apoiintment with the consultant goes well on Monday & it's nothing to worry about.(())

I can't blieve that even with classic SAH symptoms people get left without treatment or diagnosis. I am so lucky my SAd didn't bleed as my Cons says I woulld have died (sobering thought).

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Have my nuero clinic follow up on 19th August, looking forward to it strangely! Also have asked for a neuropsyhcology appointment at our local hospital to help with the emotional side of things which hopefully won't take too long to come through.

Edited by bagpuss
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Hi Gill

Glad you have your follow-up appointment coming up.

I made lots of notes for my follow-up appt; including questions I wanted to ask about what happened to me. i.e. size of aneursym, how many coils were used, how long the op took, what happens now and in future (when will I be better/back to 'normal'), when to go back to work/gym etc etc... And I made notes whilst in the meeting too, otherwise I may have forgotten some info!

Hope it all goes well for you

Kel x

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Hi Gill

Welcome to BTG, sorry I'm late in posting but am just catching up on all the posts.

My inlaws live in Porstmouth and we were there in April to celebrate my husband's stepmother's birthday. It's a very interesting place with lots of history!

Take care.

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