Daffodil

Jenni, 

The fact you’re were walking and talking when you went into hospital meant they didn’t recognise the symptoms ,not great I know and others have experienced similar and then sadly they couldn’t get the positive confirmation of a bleed with a LP . As I understand it a CT scan isn’t as clear as a MRI to confirm blood in ventricles and arachnoid space and whilst all bleeds are incredibly serious , depending on the grade of the bleed it may mean less blood is present , as does where the bleed is located, there are so many variables so often the LP becomes the check point if unsure. 

My daughters were 6 and 9 when I had my SAH and they had to adapt to mummy being very poorly for a long time An day unable to care for them and then not driving for well over a year and generally not able to do everything as I did and everyone here told me not to worry, that they would weather it, just to Be honest with them and kind to myself as I healed .

They were right. My girls are 16 and 14 now and they have grown into compassionate and independent young women, and a deal of that is down to their experience of supporting their mum, and that’s ok, and you know what ? They wish it hadn’t happened but they also see the value of having lived through it. Life goes on. We learn, love and go on. You will too. 

The BTG gang knew when they gave me that advice over 7 yrs ago that the best way to recover and adapt to change is to look after yourself and don’t beat yourself up and about the whys and regret. Your little girl has her mummy, that’s the key thing to celebrate , nothing is going to change the fact that our bleed happened, so slow it all down, don’t worry about what you could have done differently. 

A lovely post and very honest. I winced as I recalled that constipation from all the meds...good to hear the site is helping you , it certainly has helped me. The water and pacing and meditation will all be useful that’s for sure. 

you asked about nausea, mine continued for a good whilst after my bleed but I had some other complications that could have been the cause of that. Main thing if it’s increasing , or getting worse then speak to docs, don’t suffer in silence or ignore things. 

Look forward to hearing from you on the site. 

Sophie, beautiful words to share and they moved me too. Our frame of reference for our own reactions and capability gets shifted entirely by the SAH but for us, the lucky one who lived to tell that tell we start building that new framework, testing new limits, finding changed tolerances. Fly high Sophie. I wish you all the luck in the world and keep us posted. X  

Sophie, bravo for writing your story and sharing as it will bring comfort to anyone else bite your age and otherwise. We will try and help you understand some of the feelings and changes you may have since SAH as we will have that in common but age will not be Something we share! I i was 23 years older than you when I had mine!  Please do ask if you have any questions about how you are progressing and I hope you are doing ok. You may also want to get in touch with the charity Different Strokes who help young people who have had strokes which an SAH is considered to be. 

Take care x

Hi Jackie, welcome to BTG and I'm sorry you are feeling so low and unwell at the moment. I am really hoping you will start to see some improvements in the coming months and that the site will help with some answers and some reassurance.

I had ICP monitoring post my SAH and via an EVD and it is horrid as despite wonderful teams you lose some CSF and that is a dreadful feeling. Also remember our body is used to absorbing the CSF and when it doesn't our electrolytes and minerals go haywire. For me the experience of low pressure and effects of that on a recovering brain leaves me feeling dreadful but it does pass, if it doesn't that is a sign to seek more help and don't ignore it with your shunt, 

I had to have numerous LPs to date ; following my discharge , then later on before having my VP shunt and since then a few times to check on few things and each time the effects of that have left me feeling low, and the stuffing completely  knocked out of me. I can only tell you that learning to live with the clunky effects of a shunt takes a bit of getting used to and you are doing ever so well so be proud of yourself for all you have acheieved so far. 

When i came here after my shunt and SAH I was terrified, nothing felt right, I was worried and the Louise, Super Mario and Win all let me know that having a shunt just required finding a new state of balance and also some occasional singing. And in my case occassional swearing .

I had a lot of one step forwards and two steps back but youre not alone and you will continue to move forward. Keep on keeping on and rest whenever you need to. 

Great post Daf, you have done well indeed. Those early days are very hard for us and for family. 

The toilet challenges shall we call them can cause some amusement can't they? Remind me to tell the tale about the flying bedpan incident...or maybe not ?

Welcome to Btg and thanks for sharing your story. It sounds like your ability to stay calm under crisis , probably from your experience in the force , really helped you when you needed it most.

Like you i was able to talk and communicate I'm told  but I don't have recollection for which I'm grateful because like you I do remember the pain in the days and weeks after and morphine was the only thing that touched it.

Funny those syringes though aren't they. Felt like a kid! 

So do keep going steady chap. Nice and easy does it and it will pay off. Maybe just some practice putts in the garden for now but of course aim yourself for the course eventually but maybe not a full round straight off. Best of luck to you. 

Lovely Macca x

Carina. Welcome and well done on not only writing all that down but in a second language! I'm glad you found us but it sounds like you had a tough time and the fall out from the bleed is not uncommon in how your describe it.

I would really suggest getting yourself referred for neuropsychology assessment as it can really help you understand your deficits post SAH and to come up with coping and plans to help get back to work in a way that works.

Teaching and teaching languages no less is a demanding cognitive occupation and it s going to take time but be kind to yourself and maybe look at ways of doing things differently to how you used to teach, just a thought. Take care now

Win is so right. What a clever and quick thinking daughter you have. Also there are some great charities that help kids process traumatic events if she ever needs to talk in future.

My girls tiptoed around me for quite a long time afterwards and were easily scared until they could see more of the 'mum' energy and gumption returning but they now have a lot of empathy and care for me and also others so think they learnt a lot from the tough times. Take care Sammy. Say bravo to that little angel of yours.

Happy popiversary. Mine is following yours on March 8th, also three years so we have been in step.

Like you thankful for the opportunity to live.

They do say medically trained people can be the last people to seek treatment! I'm glad you are seeing some steady recovery. You are so right about the insight into ageing. I often sit with my dad who is in his 70's now, and he moans about being creaky and can't move as he did.

Then I moan a little about being tired and not being able to move as I did and then we look at each other and just laugh because thankfully we are both here and just slowed down enough to enjoy and appreciate the moments and time we have together which is beautiful really.

Limits are hard to accept whatever your age or whatever the reason change was wrought.

I love this ditty Mrs O! and I will follow your lead and try hard not to be crappy x

Sorry to hear about your dad . Macca gives good advice, the brain is resilient but when it is healing itself and dealing with the trauma then I think it goes into energy saving mode by pretty much shutting down everything else. I can only tell you the effects of the hydrocephalus for me felt like having my brain squeezed in a vice and it made everything hurt and the operation to place the VP is itself major brain surgery on top of the effects of a bleed which makes a complicated recovery even more complex so your dad is doing very well to have come through all his trauma.

If the shunt wasn't working for a while then it's possible his brain is trying to adjust to the impact of that pressure build up being relieved and sleeping is a good escape . There are people on here with similar stories. Keep talking to him, keep hope and tell mum she needs to look after herself so she has energy as this is not a sprint of a recovery but more a marathon. Take care Truzz.

Wow sue. Welcome to BTG . Congratulations on surviving all that and for gradually coming through the fog. Some shared experience with you; coiling, hydro, shunt so I know that feeling of knowing it is low pressure and having to do something! You've been through some major surgeries, recovering from effects of bleed and hydro and Things are going to improve for your but it will take time and you need to be patient and kind with yourself as there will be some strange sensations along the way as you heal.

I'm not sure what the rules are in Oz but in UK you have to have six months clear from brain surgery to be cleared to drive but to be honest it's a good way of reminding you to take things at a different pace to what you did previously. Accept all offers of help, set small goals and celebrate all your achievements big or small. Take care .

Carolyn. Glad you are home and starting to make those baby steps and as you say if you can live with the boredom and lack of finances then the year would be a good plan...I took a year and even now I realise I won't get back to levels previously but I have a different way of living now. Win gives the best advice and I find when things are hard I sing a little song and think 'win would get that' , bet a few of us do that. Keep going and welcome as one of the shunt gals!

Hi Pat. Wow that was your lucky day in many ways I suppose but such a hard time for you and family. Nine months in now , well done, i understand your frustration that things would be more back to normal by now but as Tina says the healing of the brain is a marvellous and miraculous thing but it takes an age and comes in it's own time and won't be rushed. I am two and a half years on and mostly have pretty steady and good days now, they are not at pace levels I used to have but without the amount of pain and twinges that were ever present in the first year. Be sure that life will gradually lead you to your new normal. Keep being kind to yourself, rest when you need to and drink plenty of water. Good luck