Claudette

Thank you Macca and Weedrea. And to answer your question, Weedrea, they wanted to coil the 2mm unruptured aneurysm they had previously left untreated, adding a stent as well. But whereas with my initial operation, they reached my brain through my artery, because of the position of this aneurysm - right in the centre of my head - they wanted to gain access to it by cutting open my skull.

I've progressed a lot since I had the haemorrhage, but it's taken me 7 months to get to this stage. It kind of felt like I'd be going backwards if I had the op, in terms of my progress, and although the consultant wouldn't advise me of what I should do (as he wanted it to be completely my choice), I got the impression that he felt it would be better to just leave it alone with the option of operating on it at a later date if I change my mind. So that's what I've gone for.

Now for my next challenge - getting back to work! xx

Hi All

Thanks again for the advice.  Daffodil, I've just been looking at the You Tube video you suggested.  Really good information there.  I'm kicking myself that I never thought to look on You Tube!  And I'm meant to be a teacher! Thanks for that.  I've only just seen it though.  Wish I had taken a look before my appointment with the consultant.

Well, I've had the appointment and I've decided to not have surgery.  I was already thinking in terms of that, but made up my mind when the consultant told me what he would have to do.  Nope.  Didn't want that, so, as he said it was stable and that I was unlikely to have another haemorrhage (possibly, but unlikely), I've chosen to leave things as they are but just get them to monitor it when they do the next angiogram.  Believe it or not, I actually feel a little relieved.  I felt in limbo before, what with not knowing what to do.  Now that I've made up my mind, I feel that I can finally start getting on with my life.

So Macca, I'm going to try to be a 'glass is half full' type of gal from now on.  Hard for me, what with being a Wednesday's child, but I'm going to give it a good try.  Onwards and upwards!

xxx

Thanks Sarah.  And I hope everything goes alright for you too.  What larks, eh?!

xx

Thank you everyone!  I'm certainly feeling a lot better about it all today.  All I can do is put my trust in the doctors and surround myself with a lot of positivity.  But I have to admit, I didn't realise that the coils 'settle'.  I assumed that once they were in, they were in, with nothing more to be done.  I mean, how many times do we have to go back to the hospital for recoiling?

I'm still unsure of what I want them to do.  I don't really want to have another brain operation, but I also don't want the worry of thinking that I'm going to have another haemorrhage.  Well, I'm seeing the consultant next week, so we'll see how that goes.  I'll let you all know how that goes.

xxx

Thank you both.  I've just spoken to the Clinical Nurse in the Neuro team.  I have three aneurysms; two of which were coiled and one, the smaller one, left untreated.  Apparently there is a remnant space in my larger aneurysm, which they said is stable, but they have decided to call me in for a talk to see how I feel about leaving it as it is or recoiling.  They said that the smaller unprotected aneurysm poses little risk, but that that risk is slightly increased due to the fact that I've already had a haemorrhage.  So the Neuro team want to meet with me to discuss the options available.

It's all just so awful.  The thought of my aneurysms rupturing again sends shivvers down my spine, but Sarah, you're right: I think I'd rather have the little brute coiled than have a time bomb in my head waiting to explode.

Thank you both again for your comments.  It really is reassuring speaking to people who have already been there and done that, so thank you.

Claudette xx

Hi All

I'm feeling a bit low at the moment.  Right now I'm waiting to hear from the Neuro team that administered my 6 month angiogram after my Subarachnoid Haemorrhage.  I've been told that they've looked at the results, and it's possible that I'm going to need to have another brain operation - I assume this is because the coils have 'settled' in the aneurysm and so will need more coils inserted, but I'm not actually sure what's happening.  And I'm frightened.  They are going to make a decision today and, hopefully, inform me properly of what's going on.

Has this happened to anyone else?  If I am given a choice, what should I choose?  Have re-coiling or leave well alone?

Gemma, that sounds great.  Your school seem to be supporting you well.  Mine too.  My Head Teacher and HR came round recently to see how I'm getting on and to see what support they could offer.  I'm aiming on returning to work after the Easter holidays, and a phased return has been suggested for me too.  I am nervous about the return though.  

At the beginning of the last term of the last academic year, I was promoted to be the school's SEN Co-Ordinator (SENCO).  As the previous SENCO had been asked to leave, I was kind of thrown in at the deep-end.  There was a lot of outstanding work to do, a new SEN framework to learn, and no one to do a proper handover. I also have to do the SENCO course (a master's degree). As you can imagine, I was stressed to the hilt!  So it's not really a surprise that my brain had had enough and just said "no!"

When I return to work, I'm going to be returning to that job, and although I love it, and want to be able to do it, I'm not sure I'm going to be able to cope.  My Clinical Psychologist has been brilliant and is helping to prepare me for my return, and I'm sure once I start, it won't be as bad as I've been envisaging.  But I have a very good imagination and the thought of returning to a school with 100s of screaming children and back to back meetings fills me with dread!  I'm going to give it a good try though!  

Thank you for your advice.  I hope your return to work continues to go well.

x

I've been so eager to get things back to 'normal' that I seem to have pushed myself too far.  My Clinical Psychologist also feels that I'm doing too much so I am going to ease up a bit and do a little less. It's been good to get out of the house though.  Exercising and meeting people has been helping to lift my mood, as well as get me more active.    The local leisure centre I attend in Southwark (South East London) do sessions by the Community Neuro Rehabilitation Team based at St Thomas' Hospital. They offer a 6-12 week programme for people in Southwark and Lambeth with neurological conditions, at a discounted rate, and we get to use the gym facilities under the supervision of the community neuro physiotherapist and assistant.  I love it, but It's such a shame, that I've only just discovered it, 6 months after my haemorrhage.

There seems to be so much on offer in my area for people with brain injuries, but you need a degree just to work out where they all are!  The Neuro Gym  is great as I didn't have the confidence to use the gym by myself before.  It makes such a difference knowing that there is someone there watching over you; someone who knows what they're doing! I've only just started, Daffodil, so no real tips to offer, I'm afraid.  The main thing I'd say is to pace yourself and build up slowly.  My machine of preference is the treadmill!

Thanks for the advice on seeing a chronic pain specialist, Greg.  I had no idea they existed, so I will definitely talk to my Neuro nurse tomorrow. 

xx

Hi All

Thank you so much for your kind replies!  Headaches seem to be par of the course for us post SAHs.  Horrible to think that I'll probably have this for the rest of my life, but also good to hear that I'm not the only one and that it's nothing really worth worrying about.  I smiled when I read the comments about drinking enough water.  That was the bane of my life when I was still in hospital.  Didn't realise that that too is going to be a lifelong task.  I thought I was drinking enough, but in retrospect, probably not.  So I will definitely up my water intake.

I also still suffer a bit from insomnia.  It's common for me to wake up numerous times in the night, so perhaps the broken sleep is also playing a part.  I still drink coffee (1-2 cups a day), which is probably a no-no, and I do have quite a lot of stress.  Just listing it all is giving me a headache!  So, I'm going to increase the amount of water I drink, lay off the coffee for a while, and focus more on my de-stressing.  I already do yoga, swimming, pilates and attend sessions at my local gym run by a Neuro team, but maybe it's time I start singing!

Thank you all again for your support.  I'll let you know how I get on with the angiogram.  Fingers crossed!

Claudette xx

Dear All

I had my subarachnoid haemorrhage about six months ago.  A lot of the difficulties I had initially are slowly disappearing, and I now feel ready to return to work.  (I'm a primary school teacher).  But... I still get headaches.  Sometimes just slight headaches.  Sometimes bad enough for me to give up on the day and just go to bed!  No where near as bad as that thunderclap headache I had when my aneurysms ruptured though.

So my question is this:  Does anyone else still experience headaches, and if not, at what stage did they cease?  I've got my first angiogram scheduled for next week and I am nervous as hell!  

Any replies will be greatly appreciated.

Claudette

I've been using an oil diffuser/ioniser with lavender essential oil in it as I was having problems sleeping after my haemorrhage.  I also scoured the internet looking for foods rich in vitamin B and omega 3 - 'brain foods' meant to be good for brain functions.  In terms of supplements, I've been taking vitamin B tablets, garlic tablets and cod liver oil.  I have no idea if any of them work - for example, my memory is still rubbish - but it might be worth a try.

Hi Everyone (including you, Patsy!)

Thank you all for your support!  It's really made a difference knowing you're all there, helping to pick me up when I get down.  Up until last week when I joined Behind the Gray, I too was crying every day.  I felt scared most of the time, struggling to deal with my emotions and the physical difficulties I was encountering.  But it's been brilliant hearing all of your stories, and realising that I'm not so unique - there's loads of us out there, going through the same (or similar) problems.  It's really lifted my mood and given me an energy boost!

I realise that my mood and energy levels will fluctuate.  I still have a lot of issues to deal with but today I'm feeling good!  So, thank you everyone.  Things are already feeling better!

Claudette

x

Thank you all SO much for your kind words of wisdom!  I can't stress enough how valuable it is to me having this forum to turn to for advice or a hug.  I shall take Win's advice and start singing!  Thank you.  xx

Hi

I just joined today so I hope I'm putting this post in the right place...

I too am a SAH survivor, having had three aneurysms at the end of August 2015. My SAH journey started at night, with me having the worse headache I've ever had in my life. I couldn't sleep for the rest of the night, and so the following morning, my partner got me some pain relief from the chemist. This didn't work and the headache continued, with the addition of what I can only assume were seizures.

On the second day, I went to a drop-in centre and was told that it was nothing to worry about and that I just had a bad headache and very high blood pressure (179). I was given more pain relief and told to get my blood pressure checked at my GP, which I did. My GP advised me to have a blood test and to rest. The following day I collapsed, and was rushed to my local hospital by ambulance.

Although I was initially told that it was just a migraine and that I could go home, a consultant had the foresight to suggest that I have a CT scan. This showed that I had had an Subarachnoid Haemorrhage, with bleeding on and within my brain. A subsequent CT scan with dye showed that in fact I had had three aneurysms.

The consultant told me I was lucky to be alive, but also pointed out that although he felt that coiling the aneurysms would be the best approach, there was still a possibility that I could die. That said, I survived. Two of the aneurysms were coiled and one small one remains.

I have been home now for about three weeks, and spent two weeks in hospital. I am grateful to be alive - I have two beautiful children and a lot of family and friends, whose support has left me humbled. BUT... although I am improving physically (I feel stronger, I'm now sleeping better, and my headaches are no where near as severe as they used to be), emotionally/psychologically I'm a wreck. I've felt so isolated so it's been fantastic reading the posts from other survivors on this site.

Claudette

Hi

I had a SAH (3 aneurysms) at the end of August 2015. I am petrified of going out too far alone, and so, just 10 minutes ago, looked at information on MedicAlert bracelets! It is SO reassuring to know that I am not the only one with these type of concerns!

Claudette