Gemma B-B - new member

[Gemma B-B]

Hi all,
My name is Gemma, I am 27 years old and I had a non-aneurysm SAH on the 28th January this year. I suffer from a congenital heart defect and had my SAH either during or just after having surgery to have a stent put in my aorta in order to widen it. I don’t have any memory of after the surgery but my husband has told me that when I woke up from the surgery I was complaining of a terrible headache and was nauseous.

I ended up losing consciousness and because of this I was sent for a CT scan in the early hours of the morning. This revealed that I had had the SAH and I was transferred to a specialist neuro hospital. I was very lucky that all this happened whilst I was in a hospital and near to a specialist unit. Once in the specialist hospital I had a temporary drain fitted and was stabilised. I spent the next few days in ICU and eventually had to have a permanent shunt fitted as I had developed hydrocephalus. I was discharged from hospital at the end of February and have been recovering at home since.
 
In my first few weeks at home I was very fatigued and would sleep for around 12-14 hours a night and have a nap during the day as well. This has improved over the last few weeks and I am following a more normal sleeping pattern (although it is still more than pre-SAH). Since being home I have also experienced severe back pain. I called the specialist nurse I had at the hospital and she informed me that this is common post SAH and is due to the dried blood around my brain going down my spinal cord and being reabsorbed. Although this was very unpleasant I have noticed that my cognition has improved enormously since this happened, especially my short-term memory.
 
I found this website a couple of weeks ago once I was out of hospital and felt up to browsing on the web. I felt that I left the hospital with very little idea of what had happened to me and what the long term implications would be although admittedly looking back my memory and general cognition was so poor upon leaving the hospital that it didn’t occur to me to ask questions (which is very odd for me!). This website has been incredibly useful in giving me some more information about recovery and SAH in general.

It is really useful being able to read about other people’s experiences – so thank you for sharing! After spending so long browsing I decided to join and to post an introduction. Now that I am getting back on my feet and my cognition has improved I am much more aware of how I have changed since the SAH, I still have some memory issues, some fatigue and generally feel slower mentally. I also have days where I lack the motivation to do much of anything, which is odd for me as I have also been a busy person.

I find that many of my work colleagues and friends find it difficult to understand what has happened to me and how I feel I have changed – when I discuss things such as forgetting what I am doing I get a lot of ‘oh everyone has that’, which may be true, however for me it is a change from how I was before the SAH.
 
I have my follow up neuro appointment at the end of April and am hoping to get some more information then and to discuss going back to work (I worked full time as a secondary school teacher before my surgery and hope to go back to work on a phased return before the summer holiday). I am quite nervous about going back to work as my job is quite stressful and I wonder how I will cope with it; however I am quite keen to try and get back to normal. I am grateful though to have found this website though so thank you!

[Daffodil]

Hi Gemma. Welcome to BTG. I'm glad you got help so quickly and they treated you well but what a frightening time for you and the family.

Take things easy , your motivation hopefully will improve over time but you've had your stent surgery, the drain surgery, then the shunt surgery on top of a bleed, that's a lot for a body and brain to contend with in recovery and healing even for someone so young and fit as I am sure you are.

There are a few of us on here with shunts after developing hydrocephalus post the SAH , it's a rarer Side effect but it adds a new state for the recovering brain to adapt to as its a life long condition managed by the shunt. You may want to contact SHINE as they will send you alert card for hydrocephalus , I find it reassuring to carry it. Has your hair grown back yet?

I know you will be keen to get back to work but take it slowly , maybe ask if you can just go and sit in a class for an hour when you feel ready and see how that effects you. Cognitive concentration is exhausting initially as can be lots of sensory noise, both of which you have a lot of in teaching I imagine but you'll find a way.

Good luck with neuro appointment, write a list of questions you want answered. Glad you found some comfort here.

[kempse]

Hi Gemma

 

Welcome to Behind the Gray.  Wow, you have been through the mill, but like you say, at least you were in the right place at the time.

 

I suppose going back to work before the school holiday is not such a bad thing in that it will give you an idea of what it's like, but also knowing you will soon have the long break to concentrate on resting and repairing - or at least that's the theory.  I found it pretty hard going just having my own two teenagers at the time of my event plus an 8 year old to look after, never mind a class full!

 

It's very common for friends, colleagues and even family not to fully appreciate what you have been through so joining this site is an excellent place as we've all been through it and do understand!

 

I'm beginning to understand congenital heart defects too, as my husband is currently awaiting major open heart surgery to correct things he was born with.  

 

I think you have endured a lot of trauma lately and really need to take things easy.  Your young age will be on your side, but that's not to say you don't still need the time to recover like the rest of us.

 

Wishing you all the best,

Sarah.

[Gemma B-B]

Thank you for the warm welcome. It has been a bit of a crazy, scary time and it is nice to chat with some other people who have been through the same thing as I have never actually met any one else that has. I think you are both right about taking things slowely with going back to work. I am hoping to start out with just sitting in class and getting used to being back in that environment and then move back up to actually teaching between now and summer.

 

Daffodil - I have had a look on the SHINE website and I think I will get an alert card. I already carry one for my heart condition anyway so I used to doing it. Unfortunately I am still sporting my half-shaved hair-do as my head wounds have only just fully healed and I couldn't really face going to the hairdressers. They ended up not being able to put the shunt where they originally wanted to so I ended up with half my head shaved and more than one wound. I am hoping to go and get a new hair cut over the next few days though.  

 

Sarah - lovely to hear from you. I hope your husband's heart surgery goes well.

 

Gemma

[Winb143]

Gemma,

 

Welcome to BTG,  this site helped my daughter while I was in cuckoo land and it's helped me in so many ways.

 

You have had it rough but things will get better now as you are officially a member of the Shunt Club. lol

 

Keep singing and smiling through all our problems is the answer xx if possible, as we can make it then.

 

Good luck on your recovery xx

 

WinB143 xx xx

[Tina]

Hi Gemma

 

A very warm welcome to BTG  really glad you have found some comfort here.

You have been through so much, so young bless you.

 

Some great responses with very wise words of advice.  

Look forward to hearing more from you.

 

Take care

Tina xx

[Louise]

Hi Gemma

 

warm welcome to the site, glad that you found us.

 

Yes some great responses as normal,

 

Take things easy and get to know how far you can push yourself before the fatigue sets in - not easy I think I have it and phow it throws a curveball...  but age is on your side honey.

 

take care

[ClareM]

Hi Gemma

 

Welcome to BTG, sounds like you have been through a lot.

 

Take the advice everyone has given you, rest, water and patience! I was never a very patient person before this happened but find now that it's something I have to be. I met a lady in hospital who was a teacher and had had a brain abscess. She like you was hoping to go back to work before September just so she could start the new term fresh and not being phased. Good idea but take it easy, as my SAH specialist nurse said to me, going out and about is one thing but work is a different ball game.

 

I am still not sure when I am returning partly because I have a holiday booked about the time I am due back. Think the holiday will come first!

Good luck feel better soon!

Clare

[Macca]

Hi Gemma,

 

Welcome to BTG!  I can't remember when I was 27 - I'm double that plus 5!!!  Slowly slowly should be your motto until you recover properly.

 

After SAH your body may trick you into thinking you're feeling great, then let you know in no uncertain terms that you are going too fast for its liking!

 

Take your time, if you must go back to work do it on a phased return and take regular breaks.  Try not to travel long distances and don't do any overtime or homework marking!

 

Keep a diary so you can chart your progress.  Short term memory may have been affected and fatigue is common amongst us.  Don't get upset or angry if you can't  do some of the things you used to do before - just find another way and congratulate yourself for doing so!

 

Don't underestimate what you have been through, it was tough and you need proper reparation time!

 

Good luck 

 

Macca

[Gemma B-B]

Some excellent advice everyone so thank you - I think plenty of rest and learning to deal with the changes is key for me at the moment. Like you Clare I am not a patient person at all, but I think one of the things I need to learn from this experience is patience (that and to be less stressed!).

 

Before all this happened I feel like I was running full-pelt on a treadmill with working full time at quite a stressful job, seeing friends/family and doing up our house. I now feel like I’ve fallen off the treadmill, but that I have time to reflect and take stock of what is important and what isn’t.

 

And Macca I will definitely go back to work on a phased return and I think the diary is also a good idea – something I have been thinking about for a while but haven’t actually sat down and started yet!

[subzero]

Hello Gemma

 

A warm welcome to BTG and delighted you are already benefiting from the quality content in the posts.

 

Your story has similarities to where my wife was four years ago. Working full tilt in a stressful job while her kidneys were failing and refusing to give in- I finally got her to admit herself to hospital where she spent five weeks getting tests that still didn`t clarify what was wrong.

 

A DVT and kidney biopsy were followed by the severe headache that you mention-and like your experience-thankfully I was at her side when she lost conscientiousness in her hospital bed- and her SAH journey began-but the immediate attention by the doctors was vital I feel in what has been a remarkable recovery albeit four years on--  what followed is in my Introduction-

 

The comments you have received from our BTG friends shows how much they care about helping you make good progress in your recovery- take care- take time  and remember -  you have been given a great chance to continue living- you will never be able to put a value on that................

 

Tell your husband to look after himself and keep strong also as he helps you along the way- this site will also help him tremendously in the days ahead.

 

Best wishes-

[momo]

Hello Gemma and welcome this site has helped me so much over the years.  

 

Early in my recovery about your stage I was elated to just have survived this thing and I was ready to get right back to normal as soon as possible, like Macca has said I was almost tricked into feeling this way.  Little did I know it would take me 3 years to drive again.  It's not until you look back that you see how far you have come, recovery can be slow so try not to rush things.  

 

Follow the advice from your consultant, write down a list of questions all the things your are worried about like when to go back to work etc.

 

Most of all I would say don't rush things this is a slow recovery, maybe not what you want to hear but you will get better in time and everyone is different.  Also you have age on your side which is good.

 

Like all of us here you have been very lucky you sound as though you are doing amazingly well at such an early stage.  Wishing you all the best Gemma remember any questions just ask. 

[Gemma B-B]

Sub-zero - thank you for posting. I went and read your introduction - you are right there are some similarities between what happened to me and your wife. It was nice to read about how well your wife has recovered so thank you for posting your story. Your wife has certainly been through a lot - I am glad  she has made a good recovery and I hope you are enjoying your retirement together.

 

Momo - nice to hear from you. I am really trying to move cautiously with my recovery as I don't want to do too much too soon. I have to admit that I am starting to get a bit bored being at home all the time, which I am taking as a sign I am slowely getting back to normal! I will definately do a list of questions for when I see the consultant and see what they think about returning to work.   

Gemma

[Gemma B-B]

5 month update –

Thought I would post a quick update as I am now 5 months down the line from my SAH. It is amazing the difference a couple of months can make – not just in terms of recovery -  for me it is mainly the change in my perspective and understanding of what has happened to me.

 

Generally my recovery has been good thus far. I am able to achieve some things each day and have started seeing friends and family more. Fatigue is still an issue but I am trying to learn to manage it. My main change in perspective has been in regard to returning to work. When I first posted on here I thought my return to work would be imminent. I have to say that the advice everyone gave me when I first posted on here about returning to work was definitely right – it has to be incredibly slow! I have to admit now that it is a much longer process then I ever comprehended when this first happened to me. It has taken me a long time to fully acknowledge the deficits I have been left with following this and what impact they may have on my life.

 

I started looking into going back to work in May and went to see my GP. I was referred for more neuro-psychology tests as I did poorly on them when I left the hospital at the end of February. I sat these at the end of May and had made an improvement in all areas but still had some deficits. As a result of this I started doing the SAH recovery group at the NHNN in London, which has been very useful thus far.

 

I saw my specialist at the start of June and they said I could potentially start back to work come September. I went to see my work’s OH last week and was told in no uncertain terms that I can’t return to work until my cognition has improved and I have done some more rehab. This was quite a shock for me as I thought I would be returning to work come September based upon what everyone else had said.

 

Luckily for me I was referred to a brain rehabilitation charity upon leaving the hospital. I started seeing them last week and have met with an OT there who will be helping me get back to work. She has said that my work’s OH was right and that my return to work will be incredibly slow. At the moment she is planning on meeting with me over the summer holiday and then coming into work with me in September – not to teach but to see me perform a range of tasks in the work place and see how I cope. She then thinks I should be able to start a phased return after Christmas up until the summer next year.

 

Obviously this is a very long-term and slow plan. I have to admit it is much slower than I ever anticipated, but I am starting to appreciate the recovery time after an SAH. Reading the posts people have made on here about their return to work has also made me realise what a challenge it can be and also how incredibly lucky I am to have the support of the charity in returning to work – I am not sure I could go it alone.

 

As I have said it has taken me a long time to realise that my expectations at the start of this were not realistic and that things are going to take much longer than I originally thought. The advice on here was spot-on however! Slowly is the way forward.  

Gemma

[Winb143]

Hi Gemma,

 

At least you are moving forward slow but sure. 

 

I wish you well and I am sure all will be okay with you as you are sensible.

 

Do not rush things as we already have said,  and you know this now xx

 

I wish you all the Best and remember keep happy and try singing xx

 

At least you have help now xx

 

If and when you need us we are here for you xx

Love

 

WinB143  xx xx Take it easy Gemma xx 

[Gemma B-B]

Hi Win,

 

Thank you for your kind wishes - I definitely now know that things can not be rushed. It has taken me a while to fully appreciate that but it is a lesson well learned and an important one on an SAH recovery, I think.

 

I have resumed my singing in the car and around the house now that I can handle music again - it is unfortunate for my poor husband!!

 

xxx

[Daffodil]

Gemma, good to hear you are singing again. Win will be pleased!

It's a hard thing making that adjustment, that mental acceptance, it's huge. We bounce along thinking thoughts of invincibility and then wham! the certainty and knowledge we had about our brain stamina is wiped out and we learn as we explore the new settings and begin to create different ways of doing things.

It will come for you. You know now that it may be frustratingly slower than you may wish but keep smiling when you can, take all that help and advice. Shout and scream and cry if you need and gradually you will see progress. You have seen it already.

Glad NHNN sessions are helping, they did for me too, I wish everyone could go to them after an SAH

Interestingly I spoke at length with colleague today and she compared my cognitive levels today to a year ago and marvelled how much improved it was again from then, then the year before that I was only just getting back to doing some hours and I was not really able to do much work to be honest and the year prior , well I was still in and out of the hospital. Progress. I think my biggest help in adjusting has been learning early on to pace at work and at home even if it's alien to my nature and ego!!

Keep being kind to yourself. Well done. Onwards.

[subzero]

Hi Gemma-

 

Great to hear from you and read your detailed update-

 

So glad to learn that you are taking a rational approach to your recovery given that you are now accepting that it will take time-

 

Wishing you the strength mentally and physically to deal with the days ahead -and glad that you feel that the advice of your friends on BTG has been very helpful

 

Keep strong

 

Subs

[Gemma B-B]

I agree completely that the mental acceptance is a huge leap Daffodil. I know from reading on here that lots of other people have struggled with getting back to everything they were and had before the SAH. For me pretty much all of that pressure came from myself – I was very lucky that all medical staff and family were much more cautious on the timeline of my recovery, however I also found that difficult too as I couldn’t understand why they were being so cautious!

 

The NHNN sessions are a big help – as you said I wish they were available for everyone following something like this. They definitely help with the acceptance side of things.

 

It is lovely to hear of the progress you are still making a few years down the line – it just goes to show that there is always progress still to be made and what a long journey recovery is.

 

Thank you for the kind wishes

Gemma xx

[Macca]

Sometimes I think trying to get back to what we all were before SAH is the wrong benchmark to set.  In a lot of cases, although understandable, it isn't realistic, it is aspirational and it sets us all up to think we are failures if we don't reach it.  In fact, we are not failures at all, we are living success stories.

 

We lost a battle but won the war to survive and thrive with a new lease at life.

 

When you think about it, the SAH is only one factor that affects us in our lives.  Ageing is another factor that happens gradually, but we accept its change as we have the time to accept it is happening and adapt our lives to fit things such as not being as fit and able, starting to lose memory capacity, not being able to run as much or as fast.

 

The problem with a SAH is that the change is instant, nobody told us it was coming and therefore we weren't ready for it or its consequences.

 

Remember when you played games as children?  Somebody would shout "Go" and everybody would take off, leaving one behind. That person would cry foul and say "I wasn't ready, let's start again."

 

That's us as adults, affected by SAH.  We weren't ready for it and we want to start again.  However, we are dealt a slightly different package that means we have to think about using the assets we now have, sometimes having to compensate for the ones we lost.

 

We can't undo what has happened to us, but we can look forwards and make the best of what we have and be positive about what is to come.  Yes, we will think about the way we were, but then we have to move on, make new goals.  Not to do so will leave us stuck in the past, reckless about what caused us to go under in the first place, whereas we are now all older and wiser and able to 'risk assess' our future paths for the benefit of not only ourselves, but those around us.

 

Life's quality is about health and well being, not about work, status and earning capacity.  For without the former we cannot achieve the second and those latter values therefore lose their meaning somewhat.

 

Gemma, well done for getting this far, I wish you well.  Take care,

 

Macca

[Gemma B-B]

Some excellent points Macca. When discussing the SAH and its effects I have had a number of older people say to me that they have experienced a decline in their mental and physical stamina with age that is in some ways similar to the SAH, however much, much slower than with the SAH and often much less severe. You are correct that it is the sudden change with the SAH that leaves you reeling and often wondering how to get back to 'before'.

 

I am definitely trying to focus on obtaining the best quality of life following this, whatever that ends up being, for both myself and my husband. That means that I need to be realistic about what I can now achieve both at work and at home and then work towards achieving a good balance. We shall see how I goes.....   

[Macca]

The best you can do is all anyone can ask of you Gemma -  well done for the realisation, I'm sure you will do well.

 

Macca

[Winb143]

I had a Day Gemma when I never thought once about my SAH.   I told all on here about it as I tell them about my moans. lol

 

I really had a good Day and had another Yesterday  so although it might be small it will gradually get better for you.

 

Just take one day at a time  Whoo song title there  by Vicki Carr xx  showing my age again lol  xx

 

Keep smiling xx

 

Love

Win xx