4 months on

[suek.0148]

Hi all

It's been a while since I last wrote. It's so refreshing to come back on and see that I'm not the only one with lingering issues since my NASAH.

I've managed to return to normal in many ways so mustn't moan too much - however tiredness and head 'pressure' when I get stressed or over busy are still quite debilitating, particularly in the evenings when I go to bed to literally 'get my head down' by 10.00.

I'm also finding I can't cope well with busy or intense situations like shopping malls or meetings and big social occasions. I haven't read a book for ages and my concentration levels aren't what they were.

I pinned a letter from the top neurosurgeon in the uk apologising that I was dismissed from hospital without any proper advice or explanation of what had happened to me. He said that 'if' I had had a bleed, it was a 'minor' one of unknown aetiology and I shouldnt worry and will be back to normal soon. I look at it when I start to worry but do wonder if there is much understanding out there as to the long term consequences of even these 'small' seemingly insignificant events like mine.

I'm a coper but even I have been fearful about reoccurrence and question whether I am getting the 'balance' right now and having enough rest. For someone who was active, fit and healthy before, the lack of ability to do all I want to do has been a real challenge and not helped by everyones well meaning concern, which just makes me feel a complete invalid.

Ho hum - reading everyone else's posts it is good to know I'm not alone and my symptoms are quite common. Thanks for being there x

[Sandi K]

Hello again!

I really don't think the experts know much about what happens during the recovery period. It seems that they let even those who have had major surgery make their own way through recovery once discharged from hospital. It also seems that NASAHs are assumed to be ok and that minimal follow up is required.

The reality is that we all need follow up to understand what is happening to us. I'm 7 months from my NASAH and I do not have the same energy and I'm still symptomatic. I doubt I'll be full-time in my job before the 1 year mark.

It sounds like you are doing really well in your recovery. The most important thing is to listen to your body and rest when you need to.

Sandi K. Xo

[Bill B]

Hi Suek!

If you had a bleed?............ Don't worry? .....the dismissive attitude of some of the "top" neuro -surgeons, is quite beyond belief. It seems to be a common experience amongst SAH survivors, and associated conditions, that we should not worry and all we need is time, to return normal. This attitude is based on a complete misunderstanding of the long term consequences of a cranial bleed. Clinicians have an excellent understanding of the physical workings of the Human machine and cannot understand why we don't respond favorably after we have been fixed.

In my case , the Tinnitus, weakness down my left side, insane tiredness and fear of crowds and moving objects, are all imagined.

Well, imagined they may be, but they weren't there before I had the SAH.

The only symptom that they think is not imagined, is, double-vision, and that is because the Neuro surgeon found a physical explanation for it.(Third nerve palsy).

I have had many conversations with the three neuro surgeons who have been involved in my own surgeries, and all I have ever had (in response to my questions regarding my unexplained symptoms ) is a blank stare and "It's probably just a coincidence".

It's as if I've been making it all up, and to be quite frank , until I visited this site, I thought I was, making it all up.

I now know that all these things, that we all experience , are real and have a significant effect on our lives. Too many of us report the same,or similar symptoms for it to be imagined. Neuro surgery is amazing and we are all here because of the brilliance of these very clever people, but the the understanding of the aftermath, is still in it's infancy. There is more knowledge here , on this site, than there is amongst the clinicians.

So, Suek, all I can say to you, is , listen to the collective wisdom of this site.

Over and over again people will suggest that you should "listen" to your own body. This is the best advice I have had.

You're not making it up,

Your issues are real ,and just because you don't have a scar to prove your condition, you should not feel you need to hurry back to normality.

In your own time, on your own terms.

All the best,

Bill B. x

[Sicknote]

Hi Sue

I am at a similar stage to yourself, my intial symptoms were 1st Feb, although I didn't get my NASAH diagnosed until the 8th Feb. As you it was only the LP that showed up the diagnosis, my CT scan was clear.

I feel like I'm making things up sometimes, the CT was negative, so perhaps this is all a dream and I didn't really have a bleed.....although my CT was 8 days after prob NASAH I'm told they can be negative especially if small bleed.

Then I think well if such a small bleed why am I still recovering - why aren't I back to normal as the neurosurgeon stated I would be. I can only reiterate what others have said on here aftercare and follow up is non existent....why would the neurosurgeons know what the recovery was like for us NASAH sufferers....we get discharged very early on in our recovery (because we're not interesting enough to need surgery - prob not the case but I felt that too!) and they never see us again... so how do they know how long its going to take us and what we will go through on our journey!

I think you're doing great at this stage from reading your post - I am currently still suffering fatigue, although I can see improvements, have good days and bad days with this, have minor memory issues but my main issue is headaches and concentration - I'm unable to read/concentrate for longer than 30 mins without getting headaches....this is the most frustrating for me...no sign of returning to work yet, sitting twiddling my thumbs is just not me....

This time last week I was feeling bad about this recovery, I knew I was lucky in many ways but could only see the down side and felt something was wrong with me that I hadn't made that quick recovery my Drs led me to believe would happen.

Then I found this site and it has helped me heaps this week, reading through bits and pieces when I can and realising I am not alone, unique or abnormal....we're all different.

All the best

Kate

[ann_calgary]

Then I found this site and it has helped me heaps this week, reading through bits and pieces when I can and realising I am not alone, unique or abnormal....we're all different.

I love this, Kate! It is true that we are all different and yet we share a LOT as a group. I am also very thankful for BTG.

In your own time, on your own terms.

Bill I like this one too! I think we should have an awesome quote section!

Sue, most of your challenges are exactly like mine except the reading part. I am 6 months post and I started reading again last month. I find 10 pages at a time is my limit. I am sure eventually we can all do more.

[tracy]

Hi

My NASAH was almost a year ago now and im still suffering with head fullness, like theres a massive pressure in it especially at night. Still very fatigued, memory problems and balance problems sometimes. Still get odd head pains sometimes very painful but only last few minutes.

I was left too, just go home and get on with life i was told. I was even told i had MS for 2 months before they realised the MRI scan was showing just the damage done by the bleed. I look the same but everying i feel,see,do is different. For me its learning to deal with this. I long to wake up and my head feel as it did before but it never happens.

Its so geat that we have people on here to speak to.

Take care

Traci S xx

[suek.0148]

Thanks guys so much for responding. My husband says the neuro teams ought to do what market research companies do these days and employ people to scour chat rooms because you can learn a lot from them. Sorry to hear about all the varying degrees of discomfort suffered by so many of us. At least we know we're not suffering alone and I'll try not to leave it so long before I check in to this site again. Making time to rest is so crucial and maybe I need to do more of that and be patient.

Best wishes

Sue