Chris - SAH

[Chris]

Firstly, hello everyone I found my way here via googling terms written in my discharge summary in an effort to learn more about my illness, the more I read the more confusing it gets.

 

So, I'm 31 and had an aneurysm rupture resulting in a sah and a 9 day stay in Salford Royal hospital and an aneurysm coiled, had the follow up appointment with the neurologist on the 21st of this month and was left pretty confused with the "your aneurysm is sorted and any issues are in your head" I'm aware a psychologist is a completely different thing altogether but surely his advice could have been better? I'm now not sure what to expect from my recovery, will I improve or am I stuck like I am now? 

 

I also have a really rubbish memory since the op and constantly forget all the questions I want to ask, hence joining here the convenience of being able to type one out when my memory allows. 

 

Many thanks,

 

Chris.

[Super Mario]

Welcome to BTG Chris.

Everyone's recovery is different so no one can predict how yours will go. It is a known fact that short term memory loss can be a result of a SAH but over time it can improve.

Common and good advice is to drink plenty of water, this keeps you hydrated and apparently helps the brain to heal, it does help a lot with any resultant headaches you may have.

 

22 hours ago, Chris said:

your aneurysm is sorted and any issues are in your head"

 

To be honest and in my opinion only that is a very harsh statement.

 

Of course you are looking for more information, it is only natural. Feel free to ask any questions, there will be someone who will be able to answer them. Please be aware though that we are not medically qualified, so we cannot comment on or give medical advice.

 

We are here to support you in your recovery. 

[Chelle C]

Hi Chris,

Welcome to BTG, sorry that you`ve had an SAH, you will find a lot of helpful information here, We are not allowed to give medical advice but we all very supportive as we help each other along the recovery road.

 

Sounds like you are still in the early stages of recovery, I`m assuming you are about 6 months since SAH if so then it is still early days for you, recovery can be a very slow process your brain and body have suffered a trauma and they both need time to recover, make sure you drink plenty of water and try not to over do things, when you are tired make sure you listen to your body and brain and rest, fatigue is a major thing after SAH we all suffer from it.

 

You will find a lot of people on here have memory problems, I myself have short term memory issues, it can be frustrating at times.

 

Have a good look around the forum, you will find a lot of helpful info, come into the green room and join in the banter,

 

Glad you have found us, we are here to help and support you,

Look forward to hearing more from you,

Love

Michelle xx

[Chris]

I remember the consultant saying drink plenty of fluids while I was in the critical care ward and it did stick in my head at the time as I was most interested in getting out of hospital,  since the nimodapine course finnished my headaches have faded and now I only get them when I'm tired, thinking hard (calculating mass flow rate for eg) or doing something physically strenuous I'm imagining this will continue with time, headaches are the easiest part to deal with. 

 

I was a bit in disbelief when he said that, I suspect he knows nothing about psychology and it was a poorly worded suggestion that I see a psychologist. 

 

Im not expecting any medical advice (took me 5 days of moaning about a headache and other symptoms before I went to my gp when I had my sah in june) nor would I accept any I'd received over a forum, no offence intended. 

 

The biggest problems I'm having at the minute are no sleep and a very short temper makes me pretty unpleasant to be around so it's good I live on my own haha

[Tina]

Hi Chris

 

A very warm welcome to BTG, glad you found us.

 

I agree with Super Mario, a very harsh statement from your neurologist.

When i had my SAH i was all over the place in the early stages, physically, mentally and emotionally. It turned my whole world upside down. I  also could not sleep very well at all, in fact i still have problems with sleeping now, nearly 8 years on, but it has improved.

 

Its not surprising you are short tempered at the moment, with lack of sleep and also you are in the very early stages of recovery. Your brain has had a major trauma and is trying to repair and continue to work as normal at the same time. Can you try and rest up during the day at all ? If you are thinking of going back to work, a phased return is always a good idea to consider. Go steady and be kind to yourself, things will get better.  

 

Look forward to hearing more from you and as the others have said you have found the right place for lots of helpful information and friendly support. As Michelle has mentioned above, feel free to ask any questions and  join in the daily banter in the Green Room .

 

Take care

Tina xx 

[ClareM]

Chris not much I can add except be kind to yourself. This is such a life changing event and I don't think you realise at your early stage how momentous it is. 

 

The memory problems may improve but you may be left with some more long term deficits. It is something I am coming to terms with and using new strategies to help with. 

 

Embrace the new normal and don't push too hard against the fatigue - it will always win! 

Keep coming back to BTG as it's one place you won't receive inane comments such as those from your neurologist. ?

 

Clare xx

[Winb143]

Hi Chris,

 

A lot of people say they have been sent home and it is like "okay what now".

My Daughter found this site and put me on here and it has been a Godsend as I thought doom and gloom to follow !!

 

There is life after a Brain bleed and you need to surround yourself by positive people not Doom and Gloomers. 

So as my Surgeon said to me."No Stress " so when stressed I sing it helps but only happy songs, and it relieves my stress and I try to be happy most of the time.

 

There are times when I want to shut the world out but BTG has helped me so much and the people on here, I always walk away with a smile.

You will get there Chris keep looking forward and occasionally look back to see how far you have come.  Not too often though xx

 

Head up shoulders back off we go xxx We will beat this together. 

As for short term memory read, sing, read again do what you think will help you the best.  I couldn't remember where I lived so hubby wrote it on the wall and every morning he'd say (covering address) Where do we live.  it comes back slow but surely

 

Win xx

 

[Chris]

Initially when I was in hospital after surgery I felt fine as I did before it happened, a bit like I didn't get why I was still there once I had left the critical care ward...all that changed the day I came home and the main road where I live looked very different (new fences gardens had grown) since then I've found myself feeling generally confused and a bit lost for lack of a better description. 

 

I've never been a big sleeper and it definitely worse now as I never feel sleepy regardless of how knackered I am my eyes won't stay closed when I'm in bed, resting during the day isn't going to happen unless I'm on the verge of falling asleep I can't sleep when it's light outside. 

 

Returning to work isn't at the front of my mind at the minute I was unemployed when I had my sah and best I can hope for is a min wage agency job in a warehouse,  I can't sit in an interview and say I can work, I'd be lying, I might be able to get to work anything more than that is an unknown I can just about cope with a half hour dog walk and a 5 min walk to the shop in the same day.

 

I get that a sah is a serious thing to go through, I'd never heard of a sah before I had mine and I'm unsure what to compare it to. I'll absolutely agree with the fatigue a short walk too far will render me a speed bump on the couch for a few hours after. The "okay, what now?" is exactly how I feel, like I'm waiting for something but I don't know what or when it's going to happen.

 

Reading isn't for me being dyslexic I can read through a paragraph or so and then it's like staring at a word search.

 

My memory is a weird one, I can remember places, people and all that it's more a problem of forgetting what I'm doing, like what did I come to the shop for? Or why can't I figure out how to count the £9 I had in my hand, I counted it before I went and knew what cash I had when i went and I was drawing a blank. Singing isn't for me either I sound kind of like Barry white after a throat punch haha I live in a flat all my neighbours would complain.

Edited October 3, 2016 by Chris
To make it easier to read

[Tina]

Chris just take your time and as said before be kind to yourself.

Its good that you have your dog to walk each day, as some kind of routine is a good thing.

What is your dogs name?  I used to set myself a small goal each day and it felt good that i had achieved something. I used to run my own business from home, i tried to get back, but it was just too much.

 

With the short term memory, to help, i always use post it notes or put reminders on my phone.

I have to do this daily. Maybe put a post it note in your wallet when you go shopping so you wont forget what you were going for. The fatigue is a horrible thing....if you push too hard, your body tells you to slow down. I have learnt to pace myself, does not always work though lol  !

 

Maybe we should leave the singing to our lovely Win   ha ha

 

Take care

Tina xx

[Chris G]

Hi Chris,

 

And welcome.  I am also a Chris.

 

As all have said above, try to be patience and let time do it's thing.  Mine was just a NASAH, but I still had to recover mentally and physically.  It takes time and it is not always a steady curve up.  It's up and down.

 

As mentioned, we can't give medical advice, nor should you take it from us.  I also struggled with not being able to sleep, but found a solution that helped me.  I now sleep as well as I ever did without any medication.  Again, time will help you.

 

I wish you a speedy recovery and some peace while it occurs.

 

Chris

[subzero]

Hello Chris

 

Many thanks for sharing your concerns post SAH. You certainly have found in BTG a site with friendly people who have so much experience to share, and help you understand what your recovery journey might mean.

 

You say it is not easy for you to concentrate on reading, however we will try and give you some help along the way.

 

I too feel it was rather harsh for you to be told that `the issues are in your head` !

When my wife was discharged May 2011 and we were told that her coiling was a success. We misunderstood that to mean that that was problem solved ! How wrong we were... and our journey was just beginning.

 

Take care and heed the advice already given about taking time to adjust.

 

Do you have any help from family or friends ?

 

Dogs usually know when their owner`s nature has changed. How is your `best friend`?

 

Subs

[ClareM]

Hi Chris

 

Your memory sounds just like mine. I couldn't find my sock the other day, searched high and low only to find I had already put it on! It seems to be the 'immediate' memory we often have a problem with. I have discussed this with my neuro psychologist and she is going to give me some strategies to deal with that when I next see her.

 

I find repeating things helps, like if I know I have to remember something I keep repeating it either out loud or in my head as soon as I know I must not forget. Sounds daft but does work.

Take it easy and enjoy those dog walks. I remember my first one with my dog after my bleed, he was so good, it was almost like he knew he had to take care of me.

 

Clare xx

 

[Winb143]

Chris,

 

Okay forget singing etc, but there is on here  'A Letter From Your Brain'   if you can manage to read it you will understand what your brain has been through.

 

When I came home after Ventriculitis and Sepsis along with my SAH, my home looked different and it took a while to realise  that a new fire had been put in and they moved furniture to allow for hospital bed.   Once I had shunt fitted all went back to normal, me singing and learning how to walk.  Still stuck at 125/200 yards but they said I'd never walk again !!

 

What I am trying to say is "You Will Make it"   just don't rush things and you will get there.  

Wishing you all the best and we can beat this xxxx

[Tina]

 

14 hours ago, Chris said:

Reading isn't for me being dyslexic I can read through a paragraph or so and then it's like staring at a word search.

 

 

To help me read, because of my double vision, like you everything seems to blur and jump all over the place. I sometimes use a ruler to break down paragraphs to no more than 4 lines. I have also used a sheet of paper to block the rest out and work my way down. Hope this may help. 

 

 

Chris, here is the link below to 'A Letter From Your Brain'  that the lovely Win was mentioning :

Just click on the bold print at the top.

 

 

[Louise]

Hi Chris

 

warm welcome glad you found us..

I think your neurologist is lacking in people skills what a horrible thing to say to you,

 

[Chris]

Sorry for the slow reply people, prospect of typing out a long post was enough to put me off haha.

 

Dogs name is cassie, 13 year old staff I got as a rescue at 7 months BEST 120 quid I've ever spent in my life she is a bit different since I came home just a bit more gentle when she takes food and that's about it, being 13 she's more interested in a walk then plenty sleep on the couch, armpit and ear licking haha

 

Other than my dog I have my mum, she went into a bit of overdrive after I came home and wanted me to stay in hospital longer but I do get to see her every other day which is nice, also my neighbour who is a good friend he paid for my taxi to the gp (refused to take it back too haha) when I went as i was skint and didn't want to ride my motorbike there.

 

Had a read through the letter to my brain thing, made me feel a bit guilty but it's a good inspirational/motivational read definitely helps to rationalise the injury I have and understand it better.

 

I also had a copy of the letter my neurosurgeon sent to my gp, is this part of the info I need to send to the dvla so I can get my driving entitlement back? While it's only a paragraph long it is positive sounding and mentions a 'Mr scan' is this not an mri scan? 

[Winb143]

Hi Again Chris,

MR is an MRI isn't it anyone ??? Magnetic Resonance (MR) Imaging.

I copied that bit .

 

See us Mums have our uses,  and about the letter from Brain, makes you know to take things easy no rushing or worrying

 

You will be okay

Good luck

Win.... Shewhomade it shorter this time lol x