NASAH, EVD, Infections and Long Term Prognosis

[Greg 21.01.15]

Dear All,

 

Just curios to see if anyone out there is BTG land had a similar experience to me with their NASAH with complications and whether they feel this has had any impact on their long term prognosis.

 

To recap, I had an NASAH while at the gym, and after being picked up from the gym by my wife, I don't remember an awful lot else till I woke up in Neuro ICU 48 hours later with an external ventricular drain (EVD) poking out of my head (and a few other tubes as well....).

 

After about 3 days and I was not long down on the general neuro ward, I got an infection, ventriculitis, introduced into my head via the EVD, which was the point when the doctors starting looking a little bit more concerned. Needless to say with rather large amounts of antibiotics administered IV and IT (direct via the EVD into my ventricular space) after about 2 weeks or so I was clear of the infection. Phew!

 

Now I know we shouldn't cross compare, as wall our cases are different, but I am just curious if anyone else had similar complications and whether they received any particular information, feedback, cautions etc from medics as to the impact of such infections. At the time I was in hospital I did quiz my medics about this, and all they would say is that it wouldn't help things but that was about the extent of it. And maybe that is all that can be said, but I was curious to ask out there to see if anyone else had travelled a similar path so to speak.

 

If I am honest part of the reason for asking about this is that my recovery is not progressing as I had hoped. I'm not daft (well not particularly) and appreciated from early on that I had a good chance of some permanent issues/impairments but I was then and am still now dam happy to be alive and kicking so can live with that. However, where I feel I am hitting my head (metaphorically) against a wall, is with fatigue.

 

All the cognitive stuff works (more or less, there are some issues) but it doesn't work for very long at all. With the support of a neuro OT from Headway, I have been trying to get back to work, on a very gentle phased return, but even early on we had to knock back what were really quite modest hours. I was building up too much fatigue while working that I just didn't have time to recover from before the next round of work, and this was then impacting my general health.

 

I am 15 months out post my SAH, and know that the window for making major improvements is closing. I am lucky work are being very supportive, I am lucky to have a great boss who I have worked for 16 years now, but I guess a point will come, they can't wait for ever, and that give me pause for thought.

 

I know there are folks out there, that have really bad fatigue issues and keep a happy smiling face about it all (I have one particular person in mind), so I feel bad grumbling away about it. I guess I am just getting to the point where I have to start thinking about moderating my expectations, and learning to love the new state of play, but part of me wants to be able to explain a bit more why things are working out as they are (I'm a biologist research scientist I can't hope it!), hence my open question to folks about EVD's and infections.

 

Right I have rambled on enough, I hope this doesn't get moderated down in size! Thanks in advance for all your thoughts on this.

 

Cheers

 

greg.

[ClareM]

Hi Greg

I had similar events to yours but without the infection. Mine also happened around the same time as yours so we are about the same place post SAH.

 

You have probably seen my more recent posts and know I am back to work and more recently have changed my job. Fatigue is still a big issue to me especially so more recently as I am having to learn a lot of new stuff. There is no way I could work a full week and find working 2 days then day off (today Wednesday yippee! ) works well for me. It's strange as I can run 6 miles after a day at work with no problem, but if I had to sit down and do some paperwork after working I would not cope.

 

My family find it difficult to understand what the fatigue is like, it's not just being tired it's almost like a feeling of desperation and need to just stop everything. In your job I can imagine a lot of brain power is needed so maybe that is causing problems. I know at work if I have to do calculations I need quiet to be able to concentrate enough to do them. Concentration is extremely difficult if not impossible when I am fatigued - I just have to give up and leave it for another day!

I am not sure if the infection you had has lead to your prolonged recovery, maybe worthwhile asking your nurse specialist if you have one. I was in hospital with a girl who had an abscess on her brain- she had no surgery - and we have kept in touch. She is a teacher and is back working full time but still suffers fatigue.
Maybe this is the new you but don't despair, I was told recovery can take up to 2 years so we still have time. Maybe best to readjust your expectations, I know I had to and am much happier for it.

Clare xx

[Winb143]

Hi Greg,

 

I got it also, when I saw my Surgeon I asked "why did I get so many germs hit me"  his reply was "when you open the head you are prone to getting germs" and as the brain is a sort of sealed unit it made sense (as much as I could take on board).

 

My husband said he thinks I was moved too quickly from ICU to an open ward and everytime I went up,  back down I came to IC

 

Keep happy when possible as we made it through adversity  xx

 

Good Luck and Go live life to the full  and have a sleep in between lol  xxxx 

 

 

Win xx xx   Note:~ as for window for improvement,  I am improving slow but sure and I know I have got better thanks to my Family and You lot on BTG ..so never give up Greg we will get there perhaps longer than others but we will make it xx

[Gilly]

Hi Greg

You say your window for improvement is closing. We have probably all been told when that is, but it appears they range from weeks to years. What actually happened to us varies so much so our healing will be different to. I wish you all the very best

[momo]

Hi Greg I think recovery time is dependent on the extent of your bleed, I still feel I'm improving nearly eight years after the bleed.

I also had an EVD and was told I developed an infection. I don't remember any of my month in hospital.  Are you thinking there may be a connection between EVD / infection and recovery? If so that's something I hadn't thought about.

I would ignore any timescales they give you for recovery I think they only serve to disappoint when things don't happen fast enough.

 

For me recovery has been ongoing..

It's always good to find out as much as you can.

 

[paul99]

Hi Greg

 

Infection is always a risk after surgery and its s**ds law so to speak but you have come through quite well up to now but I can assure you the window for improvement never close's as a certain young lady I know very well  is eight years and six months down the line and small improvements are still being made

so patience is a virtue you will make improvements every day and not realise it just look after yourself and your body and brain will do what it can in its own time  good luck

[Winb143]

I agree with Momo, Greg, as they do not want to give us false hopes so they hedge their bets (Wins logic lol)

 

Each of us are different,  a Man who used to make my Hubby's sheet metal for him had an SAH and he never made it.  !!

 

So keep that Window Way Open !!  We are coming through it xx xx be it 3/5/10 years or more as long as we keep getting better who cares xx

 

Good luck again Greg xx 

Run out of likes so like all posts on here today xxxx

[Daffodil]

Greg, sorry to hear you are facing right at that wall of fatigue. I wish I could tell you that it lifts completely, for some maybe it does but for others, well it's a fluid and adjusting thing. Pacing, whilst boring has to be mastered.

When I came on BTG Looking for hope and help after having my shunt fitted I was confused by people offering to lend out spoons...what kind of place is this I thought but then Keith I think it was told me to read up on the spoon theory, it's posted on here under pinned posts and then things started to make sense. I think only then I started to adjust and realise that I can't go back to old nor can I expect things to come back the same, not after the assault our brains went through and have no doubt an assault is what it was. But that doesn't mean you should stop trying just find a new way, new habits. Old ones just don't work for me anymore.

I don't mean to sound harsh, I am still adjusting, but that getting better, that period of two years is rubbish to my mind. I still make progress and regains and I am just over the four year mark. Yes it's less remarked but I can do much more and cope with things that I just couldn't a year, two years...well you get the picture. Work wise I now work 16 hours a week , so some moderating here and that's it, I'm at my lot for now with also having two kids aged 12 and 10 it's all I can manage and it's taken a long while of very gradual build up to get there, and forget a social life, that's still work in progress.

My view though is that if you are purposeful and doing quality work then there is often a huge pay off to an employer in having a committed quality albeit less capacity worker , just my point of view. I have taken on a new and pretty demanding role that I can do in that timescale and it works for me and us as a family. The other thing is being happy with the balance, no point reaching for 100% work goals if the is nothing left in the tank for anything else. You have to set your levels for now.

I have a theory that once you get air to the brain it's never quite the same, it's designed as a closed system after all so those of us with EVD and shunts may have that extra factor to contend with, but maybe not. Same with a infection, might be another factor, might not. Who knows? Not me.

One thing I'll share which my surgeon told me is that when you have an evd, it's placed for a reason ( and boy is it complex surgery) and the reason is to provide a release for build up of pressure happening. I for instance had to have the Evd to stabilise me before they would even consider coiling the bleed and the pipe was in a long time so pressure was irregular to say the least over that time. The ventricles are blocked at that moment and just can't cope. ( mine sadly never recovered thus my shunt)

Anyhow That blood filled cerebral fluid ( sorry folks ) which couldn't drain off around our brains the usual way had to come off quick but before that happens the pressure built up is not great for the nerves in the brain. ( can you tell I read up about this and my resulting hydrocephalus a lot...) so this will also be having an effect as well as the bleed or at least so I was told. In effect two types of damage.

So have hope Greg, ego to achieve is a powerful thing to drive us forward but can often trip us up as we seek to regain fragments of our old selves. The more intense the cognitive and analytic demand is in the work you do the more breaks and pause you need. Even now I can typically only manage a max 5 hour day on my pc and calls but I have to adjust my rest pattern if I have to accommodate my doing a full day of meeting and analysis work , thankfully that's rare these days. Like me my work has adjusted. I hope yours will too, sounds like they are good.

[Greg 21.01.15]

Thank you all, Clare, Win, Gilly, Momo, Paul and Daff, I appreciate all your wise words. A good reminder that I need to stop thinking about things in such a black and white way, and have a little more patience. 

 

Daff, I will have a read of the spoon theory post, I haven't read it yet, but will do. You mention pacing, and perhaps that's what I am not doing very well at the moment. I had it reasonably well sorted for a while but I know I underestimated hugely the impact of even a small passed return would have on me. So perhaps  a little bit of a reevaluation of what is feasible to do in the periods when I am not work (which is most of the the time right now!) would be a good idea. 

 

Clare, as you said it's so hard for those around you to appreciate what the fatigue is like, in part because it is hard to explain. I'm pleased for you that you can still run, one thing I found out the hard way is that it is exercise or work, not both on the same day, both together really spells trouble for me! Shame really as there was nothing nicer than sweating out the rigours of a hard day at work on the bike or down the gym. But time to come up with new habits, forward!

 

As everyone said, I should ignore the timescales, they do only serve to disappoint. I guess my uncertainty with where things go with work, makes me look where I am post SAH time wise, to see what is the likely outcome. Work aren't leaning on me yet, and hopefully they will be patient for a while longer, but we will see.

 

It's good and encouraging to hear all that folks are managing to achieve post their cerebral incidents (as I like to refer to me SAH). My original post did start off in the main as a point of interest re EVD's, infections and prognosis. Neurology as a field is something that lags so far behind so many other areas of human biology/medicine. Our abilities to analyse and treat, though improving, still have such a long way to go. It's an occupational hazard of mine to be curious about it, who knows perhaps there's a paper in there somewhere!

 

Again, thank you all, hope you all got to enjoy the nice weather we had here in the UK today, it was glorious ( at least down this way!)

 

Cheers!

[Daffodil]

Greg. Patience...yep still struggle with that one!

Curiosity about the brain is an excellent division and I agree with you that so much is unknown, keep exploring, why not....maybe a new field to diversify into for you? Kris on her is a neuroscientist so hoping she picks up on this thread next time she pops in.

Confession here. I keep a book about the brain in my car, For moments when I just am sitting or maybe have escaped from a noisy setting. I am fascinated by it and understanding a little more as I feel very up close and personal with my own now. .

My neuro team concede that sitting up close to the day to day changes post SAH means we often have good insights, that's definately been my experience so your gut about infection could be right, have you thought of seeing if there is a study ongoing? So with my shunt for instance when I was having to juggle to find a setting that worked for me in the early days , scans proved I needed to adjust to a higher tolerance but I could explain and describe the physical effects of why I knew I needed it adjusting so I do think that our reality of observing our symptoms can offer some alternative insights.

Compromise is hard in the early years, knowing if you do this you have to not do that but it improves and your capacity will increase.

[Gemma B-B]

Hi Greg,

 

As you are aware we too are at a similar point in recovery as I had my brain event last January (as I recently found out it was a intra-ventricular haemorrhage I guess I can't call it a SAH anymore!). Anyway, also had an EVD and then a shunt fitted, although I was lucky not to get any infection.

 

I don't think we can underestimate the amount it takes from us to go through surgery such as those needed to fit an EVD or a shunt. Having an infection on top of that must also be tough going.

 

In terms of fatigue - I have no concrete answers. Fatigue for me is still one of those evasive things - as soon as you think you have a handle on it something happens and bam! you are back where you started (or near to it). Like you I did some work with my OT on fatigue and one thing I found useful was analysing what things actually made me more fatigued - I was often surprised as what those activities were and it was helpful for me in understanding the different types of things that now make my brain tired.

 

In terms of the return to work - I have been on a phased return since January. I have literally just started my first four day week following the Easter holiday. Although I manage to go into work for technically 'full' working days the reality is that I am teaching a reduced timetable - for example 3 or 4 periods out of 6 - which is less than I taught before my haemorrhage. I imagine going forward that what I will be able to manage is (hopefully) 4 days in work with a Wednesday off. With that I won't actually teach any full (6 period) days but will teach 3 or 4 period days and then do some marking/admin where I can in between.

 

Although on the face of it I will be doing 4 days in work this will involve adjustment as only part of it will be spend teaching and the rest will be spent having breaks or doing other tasks. My work has been supportive thus far and they are aware of what my limitations might be, so hopefully this will continue. I am also finding adjusting the my altered physical conditions somewhat difficult as now, due to the spinal damage, walking around is much more difficult.

 

I guess my only advice in terms of the return to work is almost to be as open minded as possible about how you could return to work - for example would only doing morning suit you better? Would having a longer break in the middle of the day help? You could then sit down with work and see what they can offer you. I think the other unfortunate thing, which you have alluded to in your post, is the fact that going into work often means sacrificing some out of work activities. I find the same thing as I simply do not have the energy for it all so have to find a balance of working and also getting some enjoyment outside of work.

 

The only other thing that I have found that works for my is what my OT calls 'total cognitive breaks' where I go and sit in a separate room and take a break with no noise, people to chat to and no computer or mobile to look at. I find these do work well for me as the 'old' me would always be doing something, even in a break, such as checking emails and the 'new' me simply cannot cope with that as I once did.  

 

Sorry for the rather long rambling email - not sure if any of it is any use. Please keep us posted on how you are doing and good luck x  

[Greg 21.01.15]

Gemma, I think our OT's have been doing very similar things with us. I went through the same exercise, looking at what triggers fatigue and what activities help keep it at bay. Yes total cognitive breaks, I have been trying everything from walking around the block by myself, to breathing exercises, basically anything to distract my brain and give it a rest. It does help especially when at work, I'm the same I can't check in emails as a break from work, I can't sit and have coffee with the team  to have a break, both especially the talking really gives me fatigue issues, the head starts spinning, and the aphasia kicks in.

 

We have a quiet meditation room at work, but I've yet managed to find it unoccupied, shame as this should provide a nice haven from the hubbub of the office. The other thing I have bought myself are a pair of noise cancelling headphones so that when I'm at my desk I can keep distraction noise at bay, seems to be work quite well.

 

With my phased return I need to be patient, but at the moment there isn't much room to do much too it, I am effectively doing 2.5 hours one morning a week at work, and 2.5 hours later in the week at home, all with carefully planned out breaks etc. I was doing two mornings at home, one at work but that was too much fatigue was just accumulating badly. Just hoping I can stabilise the fatigue  with the two session a week, build up a routine, and then when conformable look at how I can start increasing it. Some clever thinking will be required to beat the fatigue. As you said Gemma, I need to be open to different solutions. 

 

Gemma good luck with the teaching, I can't imagine a scenario more hostile to my fatigue than a class full of kids of any age right now! Sounds like you are making some good progress into finding a work pattern that works, I hope it continues in the right direction, good luck with those 4 day weeks. And I'm glad that work are supportive, it makes so much difference.

 

I worked this morning at home and had my weekly 30 min training session with an instructor, and I am still standing, tired but in one piece so not a bad day!

 

Cheers

 

greg

[Chris G]

So my experience was similar but also without the infection.  I was in ICU for 10 days.  They did not move me until the last day before I was going home and the tube was removed.

 

So I still experience some fatigue (my injury was in October of last year).  I try to make it a positive as I really enjoy going to bed now when previously I had a hard time going to sleep.  Fatigue during the day is not too bad, but my question is..is it really fatigue?

 

In another thread I described in detail my emotional state after returning home.  For a while everyone checks on you and wants to hear your story.  Then they move on and you are left alone with it.  I compare it to Post Partum.  No one wants to hear now if I have a headache or feel tired.  So I think to some degree, what we describe as fatigue is really a mild depression.  Personally, I battle this often, and just keep reminding myself that every day is a gift, whatever may be going on in the day.  All of life's stresses seem amplified somehow, but at least I am alive to be stressed, as crazy as that sounds.

 

Anyhow, I hope this helps and I wish you well.

[iola]

Hi,

I just passed my three yr on April 9 and I can tell you it has been one hilly road of ups and downs. My Dr. told me it would take 12 to 18 months to feel better but to make no mistake I was a different person now. Yep, that's true. It has taken so much longer and at the three yr mark I finally feel like I may just live. The first yr is just awful and the second year is frustrating and now I finally see improvements.

I still have bad days and today I put down 20 bags of mulch and it beat me up. I am tired all the time but I get up and go. What else can you do?

Better days are waiting for you, just be patient and you will see.

[Gemma B-B]

Fatigue is definitely the killer thing. As I think I mentioned I went up to four days for the first time last week and by the end of the week I was shattered (with the usual brain symptoms to really let me know I had overdone it - headache, aphasia etc.). I spent the weekend feeling quite defeated about it all. My husband has tried to talk me out of it as I did have a busy week last week (on my day off I was at the hospital being fitted for AFOs to wear on my legs due to my spinal issues and I spent Saturday morning having an hour long head and spine MRI). I am hoping that it is the combination of a lot of things last week that contributed to my fatigue and once I get used to the 4 days it will not be as bad. I still find it a frustrating and difficult thing to work around.

 

Oddly enough the classroom hasn't been as bad an environment as I thought it would. Generally speaking it is ok as I am in charge and can make them all be quiet which suits me. I actually think working in an open office or something similar would be worse for me as I find it hard to block out any extra noise and it really fatigues me. With the teaching timetable I am currently on I can teach a lesson and then have a break and maybe do a bit of admin or marking before teaching a bit more. The mix of activities suits me and having my own classroom where I can work in peace is also good.

 

Good luck with building up your hours. You are definitely going about it in the right way by testing things out and going forth or back as you need to. I hope you find a good solution that works for you.

 

Gemma

[Winb143]

Nice post "I"

 

It will give the new one's on here/BTG,  a bit of heart and we can all make it xx

 

So Good Luck to All who are a little down as life does get better, slow but surely we will get there.

 

Love to All

 

 

Win xx  

[Greg 21.01.15]

Thanks Iola and Gemma for you posts, sorry don't seem to be getting update alerts from any posts at the mo....

 

Iola, I'm kind of with you, year 1 wasn't so awful for me as I don't think I really understood the impact the SAH had really had on me. Year 2 now, yep, you are right, spot on,  frustration, so hopefully year three I will follow you in to more positivity. Congrats on your three anni, and thanks for sharing, as Win said it gives us newbies a bit of heart.

 

Gemma, I am working on a similar principle, that given some time to settle into the new routines of more hours, so long as it isn't too much of an increase I should be able to adjust to it. I think what I still keep on forgetting (there goes those memory problems again  ) is that it takes longer than your think to build up the stamina! So good luck with your move to four days, hope this week is going better and all went OK with your hospital appointments last weekend.

[Gemma B-B]

Hi Greg,

 

Yes it definitely takes longer than what you think. When my OT first told me it would take at least a year I couldn't quite believe her - now I definitely can! Luckily for me my workplace are ok with my long phased return. I tend to spend a couple of weeks at each stage before picking up anything else. I also think I am probably nearing my limit with the four days and the amount of lessons I am teaching, so will need to then sit down with work and see what will be suitable come September.  

 

This past week has gone better thank you. Just always take me a while to get used to the new routine. My hospital appointment also went ok - was just a spinal MRI. Have a load of consultant appointments coming up in the next few months so that will keep me busy! I hope you are having a good week too. Roll on the bank holiday weekend

 

Gemma x