julianc

43 days post surgery/NASAH

Getting longer between daytime naps.  Fewer if any sudden energy drains, just the regular tiredness slowly setting in.  2 recent meetings went very well and I feel like me completely.

One advantage a scare like this gives us all is the appreciation for the truly valuable things in life.  They vary from person to person so go ahead and fuss over yours like you didn't before.

I agree that after-care is where this is so little understood.  The repair work by the doctors and nurses is brilliant, but the longer term after-care isn't.  That's why I find this site so helpful.  I don't feel so alone, and I feel supported even though people are physically miles away from each other.  I love the fact that it's for everyone, no matter what.

 

Macca

Although the responders have different experiences most agree that that care in hospital was good but there is a split in terms of the advice and information about life after SAH.  Haven't done the maths (math for statesiders) but it looks 50/50.

I would ask all hospitals to refer people to here for follow up advice.  The whole gamut of levels.  From a 1st person perspective.

Priceless.

Maybe we should leave the surgeons to surgery and just appoint a new kind of consultant that advises on post hospital life and care. Nothing else. Just the off boarding. A member of staff who is informed by constant referral to former patients and not an old text book or ill founded supposition or wishful thinking. Facts based on real life from that facility.

Good mind to put it up on the UK government's petition site. Any UK members agree?

My original neurosurgeon and my second and third neurologists both said I'd be completely normal and I believed them. I wish they'd been honest when the reality is that only 15% of people return to a completely symptom free life. I think if I'd been told from the start that I might not return to my previous state of health I might have been more realistic in my expectations. At the same time, that probably would have just made me more driven (because I'm like that) to return to normal. I do live a pretty "normal" life for most people. I am way more active than the average American, which makes me doggone proud!

I feel like I can't LIKE your post because I agree you.  All levels of neurosurgeons (1st, 2nd and 3rd) should have been more honest or kept their ill informed opinions to themselves.

How can this be allowed to happen today?  All they need to do is record a video, update it every quarter to take into account any advances the establishment makes in treating SAH then give patients a link to it and this forum.  Done.  No time wasted.  No false hopes created. Realistic expectations set.  Helpful support ensured.

Grrrrrrrrrr.

end of day 37

No headaches

Minimal tiredness (2hour shut eye at 2pm)

Tiredness is still starting in the eyeballs unlike immediately post NASAH

So far so good.  Night night all.

When my doctor told me this it absolutely devastated me! I really did think I'd get back to my old life. I am accepting it more that I may never be that old me, but part of that life I absolutely want back. I particularly want back my Sporty Spice part. That's my main focus because my running feeds my soul and my doctor supports it. In fact, it is part of my prescription. She encourages all of her patients to run and lift weights as part of their self care program. 

Neither my consultant/surgeon (with whom I never actually spoke 1 to 1), any of the doctors/consultants at the hospital or my own doctor from the local practice has said anything about expectations of what I should be getting back in terms of life.  Nothing.

Only behindthegrey forum members have shed light on that murky subject.

Be thankful and happy when you're feeling blessed and thankful and happy, but it's okay to be down and to feel that way because there is no way that this doesn't suck at times. It's okay to say that out loud and it's okay to feel mad, just don't wallow in it. We've all vented on here and I promise (or at least hope) that none of us will give you the "But you're lucky to be alive" line because you know that. We all know we're lucky to be alive but there is nothing lucky feeling about getting up, managing to brush our teeth and take a wee and put on half our clothes and then be ready to get back in bed for the day! 

 

Go stand in front of the mirror and practice this word, "No." "No, I'm sorry, I can't." "I'd love to, but I simply can't." "I'm sorry but I can't."

Teechur, I have only quoted part of your post but I devoured all of it with great interest.  I think we should create a section with nothing but short stories of each person's experience after the 1st year or 2.  No more.  No thanks or comments just pure stories.  Perhaps graded according to the doctors' qualification of each SAH.  Just an idea.

I am heeding the advice Teechur.  Your handle make it feel like being at school.  I am taking each day as it comes, and ready to stop or not commit if it is too much of a stretch.  Trust me when I say I have no problem saying "Sorry that simply won't be possible" with an optional "I've had  brain surgery!  You're lucky they raised my tolerance while they were there".  I jest.  I do a lot of that.  But I did that before too so its good... or so I keep/kept telling myself that.

I agree that overdoing it one day might cost you three.  Seen that already after the weekend away a week ago.  A few hours of sleep avoidance cost me the next day.  I do notice however that the sleepyness doesn't feel the same as it did in the first 4 week post surgery.  Previously I was almost like an inflatable toy whose big vent had been unplugged.  AN IMMEDIATE TIREDNESS.  Now its much more like it was pre NASAH.  Also its more like normal in that (and forgive me if this is just me) it starts in the eyes rather than hitting you in the head.  I might expand on that later but I hope it resounds with others.

Our health and benefits system here in the UK, although not ideal, does provide a certain amount of cover from which, whilst handy, I have no intention of benefitting.  Oooh look at that!  I skillfully avoided ending on a preposition!  Please indulge me I can sometimes be a bit of a grammar pedant!  That much has not changed.  Oh and our work holidays are separate to our sick leave, which I believe can be different in the USA.

So when I got out of the hospital with just "go back to life" that's completely what I expected, that I could go back to my life exactly as it had been before I left. I planned to return to work the next week (I got out on a Thursday). I returned to my coaching duties as a marathon coach that weekend using a walker. I did not cancel any of my upcoming races (although I had to cancel most of them, but I did complete a half marathon in June using the walker). Needless to say when I did not return immediately to my normal life I was one P-Oed girl! Learning that what I was experiencing was normal helped SO much. At first I was very happy, just felt lucky to be alive, like the world was my oyster.

 

Since then the limitations sometimes get me way way down. I am not as limited as I could be so for that I am thankful. I am back to running and it is the only time that I am almost always without pain. I am back to coaching, although my time is slower, I can still cheer and motivate. My dogs get out running with me a few times a week, which we all enjoy. It's just that work is trying to kill me (I'm a full time teacher) and I'm considering disability or half time at the very least. I love my kids so it is a tough decision to make. 

........

Now granted the Thanksgiving before my SAH I ran all four days, four marathons for a total of over 108 miles and came out feeling great and I'm just not there right now, but I will be back there if it KILLS me! But for now, I am not advising any marathons for you!

I was never one for massive physical activity so in that sense I cannot judge if my personal best times in the quarter/half/full marathons have changed.  Never done one, and have no intention of doing one.  It also means on that subject area at least I cannot bring myself down because I cannot perform as I did previously.  I am however in sales and marketing and so any effects on my personality or memory would show themselves up pretty soon.  We shall see on that front, initial feedback has been good, nay excellent.

The last 3 days have shown a marked improvement in wakefulness although a daytime sleep is still appreciated, was it not ever thus?  Last night I made it through without waking up.  Partially thanks to my little ones who kept any noise to one beneath my threshold.  I do sometimes think that the waking up is simply due to drinking almost a litre just before going to sleep (approx 2 pints). That's a lot to carry around!

This morning was our eldest's (almost 4 years old) nativity where she played one of a chorus of angels.  It was lovely.  I didn't cry.  As main family photographer I am normally relegated to being behind the viewfinder and this was no exception.  Back of hall.  DSLR in one hand, miniDV HD recorder in the other.  I shall be making a recommendation to the school to appoint a professional or a keen parent to undertake that on behalf of all the parents.  1 in 3 parents I think were viewing the nativity on their smartphone!

Now doing some home admin stuff and preparing a presentation.  Thank you again for the great advice and superb post Teechur.

Jules

Did fine.  Some window shopping beforehand.  Decent enough meeting.  Tiny bit of supermarket shopping afterwards. Bus home.  All good.

Was definitely tired.

Took to bed.

All fine now.  Night night all.

Thanks Super Mario

Rest assured I am not pushing in the sense that there is no resistance to doing these things. I am not like others who go for 5km walks. , hell I couldn't be bothered doing that when I was well! Believe me I am not out to prove anything to anyone or myself.

Just ambling along doing stuff until a signal goes off clearly saying or hinting at 'don't'.

If the signal goes off I head back.

Thanks for the concern though. I am behaving trust me.

Good morning all.

Potentially another good day after a good night.  Did the milk run with a crying near 2 year old at 1:30am this morning, bathed her in the morning (overflowing nappy demanded it) and prepared packed lunch for the eldest.  No headache in sight or on site.  Long may it continue.

Now about to walk out of the house and do a post office run and get a bus into a nearby town for a meeting.  I think I am up to it as I am getting more and more convinced that I fall into the ludricrously lucky 10% who walk and talk their way out of longer term negative NASAH or SAH effects.

Please don't abandon me yet as, and you all know, it could all change.

Have a good day yourselves.

Jules

I am now walking about 5km a day. So everything came back!

Really happy for you in your recovery.

Was it a gradual day by day improvement or was there a defining day or moment when things seemed to 'click' back in?

How are the crowds now? I haven't suffered an aversion yet but I think my patience with crowded noisy bars has hit rock bottom.

Jules, when I made it to my first post op nativity last year I cried loudly and noisily so do take some tissues!!. I missed the first christmas after as I was in no fit state at that point

Another thing to be grateful for!!!  I won't miss Christmas!  At least I don't think I will.

FYI my mother in law is a former seamstress so the children's outfits are always quite wonderful, as are furniture and room decorations that she whips up in a few days.  Yup folks we are THOSE parents that make life hard for everyone else!  Please don't hate us. 

I have 2 days to cover the songs with the eldest one.  Which reminds me, I haven't tested my voice to see if its still there.  No reason to suspect I can't do my Josh Groban impersonation but its been a month so.....yup just tested with the NOEL album (fitting).  Still there!

Just because you feel good today still do not push yourself, still take it easy. Many of us have made that mistake and caused us to take a step back.

I agree, hence the constant reminder that payback might be just round the corner.  If my brain starts to say stuff like "take a break" then a break is taken.  None the less I am enjoying the semblance of my previous life!

When my brain wants to make itself heard it feels like someone just pulled the plug on my energy.  One moment absolutely fine, the next... someone flipped my OFF switch, my shoulders slope, my grin fades, and I am running on reserve power until I can get to my room, and the quiet and the dark.

Thank you for the words of caution.  Rest assured one ear is always listening to my brain.

Good morning everyone. In fact a VERY good morning.

So happy to tell you that I had a restless night...

Little ones woke up twice tonight... AND SO DID I TO HELP MY WIFE BATHE THEM!

This morning we rushed about getting them dressed and ready for nursery on time as the eldest has a nativity rehearsal that we as pushy parents cannot afford for her to miss lest it costs her her big chance... (She's almost 4!)

Feel normal!

But keep thinking pay back is just round the corner! Keeps me focused and grateful.

Hope you all do well today with your own agendas.

So happy I could hug everyone!!!!!

Julian

The perfect end to a great day. 23h and doing the dream feed for the little one, been up almost uninterrupted since 12:45pm.

Judicious application of ''s law' (a darker Murphy's law for the colonials - I jest - love you guys) makes me think thank tomorrow will be pay back day.

I will keep you posted.

Night night all.

Agreed Super Mario, heartedly and unreservedly agree and grateful.

Folks both near and far (UK, USA and Australia it appears), your support, words of encouragement and advice based on your own experiences are very very welcome, uplifting and helpful.

Sounds like you were very "lucky" in getting treated in time and at the right place.  Sometimes we are graced with that kind of luck in moments of trauma.  Day to day life doesn't always seem that way.  

................................

Please take good care of yourself.  Go slow with the things you think might be tough for you.  You sound like a strong person.  Use that strength to "soldier through".  Glad to meet you Jules.  Keep us posted and take one day at a time.  (I know I sound like Norman Vincent Peale or something.  Can't help it.  It was a right brain injury.  hahahaha)

Thank heavens for Google where I was able to look up the Norman Vincent Peale reference and thus maintain an air of being well informed and well read. 

I have been INCREDIBLY lucky.  I know it.  No 2 hours of wakefulness (still the same pedant I was pre NASAH) go past without me saying that out loud or recounting it to anyone who cares to listen.

Rest assured I am proceeding at the speed at which my brain allows me to.  If it says 'sleep' or 'rest' that is what I will do as soon as possible.

Are you going to return to work? If so when? (You don't have to answer- if I'm being too nosey) The standard recommendation is not to return before 3 months. I wanted to return sooner but I'm glad I didn't. I do accounting and it was VERY difficult!!! I did end up going out on disability, because I could not handle it.

Not at all too nosey Ponigirl, I hope to return in January 2015 (just to be precise).  Initial meetings and discussions with people seem to suggest that I am indiscernable from pre NASAH Julian, barring the fatigue which I hope will continue to improve.  Time will tell.

Well Jules,

 

How are you today?  Please please say "oh much better Win".

 

Do not stress too much and if headache persists ( keeps on, went posh on you then) see Doc to

put your mind at ease. 

 

Be Well and have a good weekend

 

WinB143 xx

Hi Win

YUP, much better Win.  Much much better.  Thank you so much for your concern, sorry to have potentially worried you with my lack of response.  Just a bit busy.

Thanks again, all good.

Julian

Yesterday was good but its not a good day today. Woke up feeling bad and have improved only a little.

Its a general low level headache that is persising despite paracetamol and tramadol doses.

Mild discomfort so please don't fret too much for me.

Going somewhere cool, quiet and dark for a while.

This site has been immeasurably useful. A distillation of real life experiences living post NASAH few doctors could ever hope to relay. Perhaps we here are better/worse off than the total population of NASAH survivors but at least its something compared to nothing I got when I left JR.

I wonder if doctors now think that if they see patients use a smartphone that they'll obviously use the net to research so doctors don't bother explaining anything to them anymore. Plausible. If I was in that role I might.

That being said, and no disrespect to all present here, I am glad it was the doctors and nurses focusing on the surgery and post op care, leaving the task of explaining life after NASAH to you all!

Tina re your comment "sent home from hospital with little or no information whatsoever on what to expect or how you may feel."

Were you there with me? I didn't see you but you must have been because you nailed it. Yup. NO INFO AT ALL.

Zip, zilch, nothing, nada, rien.

Just a wave and longer wait for the Tramadol.

Can't fault the surgery, or care during the stay but the wave off was lacklustre and lacking in useful info to prepare one for the future.

Particularly the fact that the future alongside these after effects might be a prolonged one and not the usual "right as rain in a few weeks".

Thanks for the responses and suggestions Iola & Win.

Copious water?  Check.  3 litres per day is my target and I am on track again.  Alcohol is still off limits at least as far as I am concerned.  Self imposed sanction but I guess I will test the 'waters', so to speak, in the next few weeks.

Going well so far.

My short experience with a NASAH or Perimesencephalic SAH drives me to the conclusion that the brain doesn't like being soaked in blood despite obviously needing measured amounts of it to bring it oxygen.  What if the brain were to be washed somehow?  Clear out that contaminated blood CSF and allow the brain to deal with unpolluted CSF like the good old days?

My reasons for this:

When you have a SAH your head is generally kept at a 30 degree from horizontal.  This allows new CSF to reach the brain, and older  blood contaminated CSF to flow towards the bottom of the spine.

SAH patients have a tube to remove excess and blood contaminated cerebrospinal fluid (CSF).

At hospital and after discharge, mornings (after a night spent horizontally) were my worst time for head pain.  My own local doctor confirmed this was the reason.  4 weeks from the NASAH and I sleep at an angle and feel better for it.  I don't exactly BOUND out of bed but I get up and make breakfast and the lunch box for the eldest.

Everyone tells you to keep well hydrated.  Well, and a strange connection here, boxers put themselves at greater risk of brain injury by purposefully dehydrating themselves before a boxing match in order to reach the required maximum weight.  Where does an important amount of the removed liquid come from?  The cranium.  Without that liquid an important cushion to the blows they receive in the match is reduced and people are campaigning for more time between weigh in and the fight to allow them to rehydrate.  I bet boxers would do poorly too if that CSF was contaminated with blood that clogged up pores and reduced the brain's ability to hydrate using CSF.

One night in hospital my head started hurting so much I almost cried.  When I stood up in panic wondering what could I do, but not really caring if anything bad happened because what could be worse anyway?, I was surprised to find that the pain levelled then eased off.  Startingly quickly.

and lastly this....

http://www.bristol.ac.uk/news/2010/6867.html

A surgeon in Bristol has proposed precisely this treatment for babies suffering from cranial bleeding.  I haven't done more background reading than this but its a proper source.

Its not specific to SAH but I think that the underlying logic and principile are similar.