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Introduction from a newbie SAH survivor from the UK


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I can't fault my neurosurgeon either - he saved my life and passed on my details to my specialist within 24 hours.  My specialist was amazing - he was always at the end of a phone whether I was due for an appointment or not - I never had to go through his secretary or a switchboard. Many a time did he literally put my mind at ease and gave me amazing advice when I needed it.

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I think the challenge is the variance in the level of after care and knowledge-speciality and advice offered across the UK. I was very lucky, I had access to A super neuro nursing team during my stay and it continued after discharge and I and my GP could and did call them to check symptoms etc and liase sometimes on care and intervention I needed when I was readmitted and I also have a hydrocephalus nurse specialist whom I can call. I also could email them with non urgent questions and they ran follow up clinics and checks in addition to my consultant check ups . I can still call them now as I remain on service and it was this team not my consultant who referred me to neurophyschologist when I was struggling with my return to work.

My consultant is fab but he fixes the unfixable and doesn't talk in terms of what the impact of changes and differences are post that and they are often black and white in their view. When I see him now he just reminds me of the reality of the survival and pretty much says' what do you expect' he also early on said he knew I would be impatient so I have heeded his view, I need patience, this is not a sprint recovery with fix timelines. Headway were also amazing to help me understand life post bleed and surgery.

Do I think a post stroke service should be implemented, better coordinated and matched as an experience in every hospital , yes100% I would get behind that but often it needs shared experience like we get here to make that really valuable.

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My Surgeon was very good, he is matter of fact ie no chit chat, just the facts. 

 

He knew what he was doing, thank goodness he kept a close eye on me.

 

He told a nurse "I do not want that bedsore turning into a four".

 

My hubby had a male nurse he could ring when he was worried about me.

 

So listening to you all I was lucky perhaps it was the ventriculitis and sepsis I got

while in hospital that I got and needed extra care.  My poor family suffered xx

 

Let's all get better and when we have bad days say to ourselves "Life is Good" 

and smile xx

Be Well All

 

WinB143 xx

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On 12/6/2014 at 19:20, Winb143 said:

My Surgeon was very good, he is matter of fact ie no chit chat, just the facts. 

 

He knew what he was doing, thank goodness he kept a close eye on me.

 

He told a nurse "I do not want that bedsore turning into a four".

 

My hubby had a male nurse he could ring when he was worried about me.

 

So listening to you all I was lucky perhaps it was the ventriculitis and sepsis I got

while in hospital that I got and needed extra care.  My poor family suffered xx

 

Let's all get better and when we have bad days say to ourselves "Life is Good" 

and smile xx

Be Well All

 

WinB143 xx

 

I believe I had a great surgeon, but I think she just didn't have a great bedside manner. I also think that, in part, I minimized so much and kept such a happy face when I was feeling horrible that I communicated that I was better than I was. 

 

I had EXCELLENT nurses throughout. I can't complain. I had a bedsore during another health issue from the lack of care of one nurse (the only one I've ever had bad care from) and it was horrible. Those things last for a long time. I had to have it debrided weekly for months because it was on my coccyx and I'd lost so much weight I had no fat so the bone was coming through. Sexy!

 

No offense, but it's very nice to say "On a bad day say 'life is good' but that takes away our right to have a bad day." We have to all heal emotionally in our own time. That is like others telling us to be happy we're still alive. We do understand that we are lucky to be alive, however we are still allowed to feel frustrated on bad days, and upset that this happened to us. I know that you suffer a great deal and I appreciate your always up attitude, Win, but sadly not all of us always have that.

 

When I am suffering from a bad day I can't simply say "Life is good" and take it easy and go back to bed. I have to still go to work and be a teacher and be up and caring and notice when  child is having a hard day, and keep my temper even, and respond to emails and work stress so it's hard on days like that to say "Life is good" because while, overall, it is good when I feel like garbage, it doesn't feel very good at the time. To suggest I shouldn't feel lousy about my situation on days I don't feel well is to take away my right to deal emotionally with how I am feeling; with how any of us are feeling.

 

I'm not a Debbie Downer, trust me. I think it might be because I was told I was fine in the hospital and maybe because you were given honest answers that you are able to have a better outlook. I was told I'd be completely normal and all my symptoms were mostly from the meds I was being given and anything I was dealing with was just temporary and would go away. Yet I am still coming up with new things.

 

My latest fun thing--I have started to forget what I'm doing while I'm doing it sometimes. It's happened 3 or 4 times in the last 3 months and it's scary as all get out! Happened yesterday on a run. I suddenly found myself crossing a street and didn't know where I was, why I was there, or what I was doing. I had to talk myself through it all until I could remember I was on a run. I started to have a full on panic attack because I was completely "lost". So that is officially Not Fun and not something I can say "Life is good" about because it scared the poodles out of me!

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Let's all get better and when we have bad days say to ourselves "Life is Good" 

and smile xx

Be Well All

 

I don't think that Win's post was intended to make you feel upset or to make you feel personally offended. Nobody is telling you that you can't have a bad day.....we all have those. The above comment from Win was well intentioned and I think that you've perhaps misread it or taken it out of context, as Win always ends her posts on a positive and light hearted note as that's how she deals with life.

 

Win's had it tougher than most of us on here physically and it's a miracle that she can even type a response on this forum from the early days of her daughter posting on here when Win was in hospital and the outcome sounded extremely bleak.  

 

I've seen Win's progress since she first came on to the site with her typing and posts ... and it's been personally uplifting to see her positivity after such a traumatic brain injury and to see the kindness that she's offered to others with her support, even though her own life isn't at all easy.

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Teechur,

I have posted before about this, but I too have had that feeling of being lost in a place I know well.  In fact, it has happened twice to me - once in Manchester City Centre, a place I know well, and secondly in a bar (or pub as we call it over here)that I have been going to for forty years or so.  On the first occasion, I sat down until my memory returned about a half hour later.

 

 On the latter occasion it frightened the staff in the bar and I was hospitalised as a result, but like you I didn't know where I was or why I was there.  I know both places extremely well but on these days I was very frightened.  I don't know that I dealt with either situation very well, indeed it still sends a chill through me when I think about it.

 

I don't kind of look at it as a right to be angry - I just am or I'm not, it's what's in me.  What I find is important is how one deals with it afterwards.  Of course you do have a right to be angry, or sad, or happy, or any of the other feelings we are capable of.  We all do.  I hope you are feeling better now, but I guess you are still trying to come to terms with what exactly happened, how it happened and how will it affect you in the future.

 

 For me it has happened twice in four and a half years ( the last time about three years ago) - I hope it won't happen again because, as you say, it is very scary and it is something I do not wish to experience again.

 

In Win's case, I think she was looking more widely and was just encouraging everyone generally. It's great she has such a bright outlook, I wish I was so bright. I have down days too and I'm sure Win does as well.  I don't think any one of us can go through the traumas that we have had and not experience bad days.  But progress gives us all hope and Win has acquired bucket loads which I think she is trying to share and I applaud that.

 

For me, life is life - sometimes good, sometimes rubbish and all points in between.  We all have a right to be who we are, and we are who we are, if that makes sense.

 

But I bat on, not just for me, but for those that love me, depend upon me and vice versa.  Life goes on, and I have to as well, dealing with all it throws my way, even though I don't like it at times.  Frustration is the emotion that gets to me the most.  None of us can help how we feel.

 

I can tell from the way you write, that life matters to you very much and you care.  No, your experience wasn't fun, and neither were mine, but since then I have many experiences that were fun and, I find, outweigh the bad ones I've had.  I hope you can find that too, over time.  I won't ever forget it though - I agree it is scary and completely disorientating.  Thanks for sharing your experience, I was surprised to find that someone else had the same as me and I hope that by sharing it ,others will be helped also.

 

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

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No one is saying don't have bad days or that you can't feel lousy as everyone here understands the struggles and fears that sit with all of us daily so I think you may have misinterpreted the meaning behind 'life is good'. I read it purely as keep hope that things will get better and can improve on those darkest and hardest of days and that was coming from one who has walked through an absolute firestorm to rally us and encourage us that even on bad days there can be hope. Wins intentions on here are always from the heart and to encourage others.

 

We each appreciate the daily struggle, each of them unique to circumstance , we better than anyone, it's not negating that. So teechur I just think you were in the grip of a grouchy mood yesterday that grabs us all and feeling the effects of a really bad day and you know what there is nothing wrong with being grouchy and coming here to vent but try to keep hope , a good perspective and never lose your empathy for others.

 

I challenge anyone not to be grouchy when their damaged and hurt grey matter is trying to process too much other stuff, it just misplaces thoughts and leaves you reeling , scared and missing the old familiar you. My daughters always let me know when I am trying to be too much of the person I once was, how? They turn round and say 'you are really really grumpy today and look really awful' ;) you know what ? they are always right because it's when I misinterpret meaning, lose words , purpose and balance and it's usually because that's a day I am less accepting of the fact that I broke something in my brain and have tried ( and failed) to up my speed limit to somewhere near old levels.

 

Frustrated with that? yep got the t-shirt , but it doesn't change the fact that I spilled coffee on the motherboard of my operating system and some days are going to be bad , but they are never as quite as bad as those really bad early days thankfully and I'm still here. Still smiling most days. And if I can't do what I did before I just have to keep finding and exploring what I can do now and what I will do in future and that does make us the lucky ones in my eyes.

Ps I hope your poodles come back soon:)

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Thanks Karen,

 

You understand me so well. xx

 

I am sorry Teechur if you are not too good and my post offends you but I cannot change

just for you, my outlook is,  be kind and smile so Sorry if it causes such offence to you.

 

Now smile at least? even a moody smile will suffice.

I will not change my outlook for you as already said,  so sorry if I offended you by being happy that I am still alive.

 

WinB143

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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.

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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.

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So....along comes June 3 and my life forever changed.  A coil, two clips, shunt, etc etc etc.  I woke up in the hospital feeling very stupid but naive enough to assume I would be back on track in a few weeks.  6 months later I know for a fact I couldn't possibly work and I will most likely never meet that other Carolyn again.  

 

Several weeks after I came home I was full of questions and fear so came to the internet hoping to find answers and maybe a support system of some sort.  I too was sent home without a lot of explanation of what to expect not just for the next few months but for the rest of my life.  My family doesn't quite "get it" either.  I felt very very alone.  I found you guys.  I read some of your stories and followed some of the topics to see how you were doing - some times not so great - either physically or emotionally.

 

My heart breaks every single time I read a "newbie" post or a post from a vet that describes some very sad experiences or feelings.  Seriously.  Life is up and down for sure.  Lately I feel good for an hour or so and then my head might start to hurt or my emotions get the best of me and I feel that I can't get much lower than that.  I may not comment but I will read a few posts here and always find something pertinent that helps me move past the bad times and onto the next thing.  

 

I have always responded best to humor and/or positive thinking.  Studied both for a while.  i.e. sent a post to julian and mentioned Norman Vincent Peale.  For those of you who don't know he was one of the greatest instructors of positive thinking - ever.  I find that I would rather buy into that than negativity.

 

 My husband is kind of a "negative nancy" or "debbie downer" type guy.  But I first dated him because he was one of the funniest people I had ever met.  He can still be that but life overtakes him sometimes.  Don't get me wrong - I have severe bouts of depression and rage.  I'm not sure any of us can get through day to day without some of that.  

 

So...when I discovered this site and saw these posts written by a woman who went through so much and is shown as a Mrs. Overalls (had no clue who she was) and she was talking about singing etc. I was hooked.  Sometimes I don't feel like singing and might crinkle my eyebrows when I read the post suggesting I do but mostly it encourages me to get up, grab a cd, and start singing like I used to.  Unfortunately the sound drives me crazy.  lol.  

 

Anyhoo - sorry this is so long.  I love you all and wouldn't feel it was normal if we didn't unload sometimes.  Take care and don't work too hard and stress yourself out.  

 

p.s. guess what I did yesterday.  Wobbled around in the kitchen, lost control, fell onto the floor breaking my big toe and cracking my head on my microwave cart.  How dumb was that?  I'm fine.  Take care!

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On 12/9/2014 at 15:17, julianc said:

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.

 

That's great news Jules :) really pleased for you !

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Jules,

Good to hear you are doing better, and it gets better with every passing day.

Good luck to you xx

 

Now Carolyn xx you crinkle at singing along with me !! ha,  come on lets give my family a tune as it's only

1.35 am here. zzz what,  what ! oh was I snoring again.

Ta Pal xx

 

Thanks to all BTG'ers and I better get my beauty sleep, oh it's too late anyone got an iron. 

I heard egg whites are good xx

 

Love

Win xx night All xx

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

 

Hi Julian, there are a few Neuro Hospitals who do use this site for information and also refer people who are struggling with their recovery. Lack of recovery info and support is the main reason why this site was set up and the need to talk to others in the same boat to share experiences .... wish that somebody had done something similar before I had my own SAH. x

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I'm sorry, Win. I do love your sunny attitude and I don't want you to change for ANYONE, especially not for me. I guess what I was trying to say, in a not very eloquent way, is sometimes we have to feel what we feel and not try to gloss over it because it's important to let out anger or frustration when it is there. Then, at least for me, it is SO much easier to get back to life is good .Because it really is.

 

I am a WAY more glass is half full kinda gal, even if it doesn't seem like it. Had a good day yesterday, but today we're in the midst of three big storms and the barometer changes are wreaking havoc on my head.

 

Macca that is scary! I did email my doctor on Monday but she hasn't replied so I don't know if she got it or not. I'm not sure what to think. I wonder if it's medication side effects cropping up. I am on Duoloxatine (Cymbalta) and one of the side effects, which is rare, is amnesia. So could be that, I suppose.

 

The weakness in my jaw could also be related to that medication. Scares me because it's the only thing that's worked at all, but I don't really want to get lost driving home from work, or lose the ability to chew my food because well...that would be embarrassing!

 

Oh Carolyn, owie! That totally sounds like something I would do! Be careful! I'm assuming that, like me, you do NOT have six dogs to trip over. I'm amazed I don't fall more often at home. I am running a race this weekend where, last year, I fell flat on my face without breaking my fall and got a concussion. So I'm hoping that will NOT happen this year.

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Thanks those who asked about my poor toe.  :'(  It's much better!  Lot of bruising and lot of whining and drama from me but it will pass.  Teechur and Macca - you both freaked me out at your stories of ending up somewhere without knowing how or where.  Glad you both were able to deal with it and come home to tell us about it.  

 

Teechur - no...no doggies.  3 catties though.  And they try to trip me on my stairs.  lol.  Good luck with race!

 

Happy week all of you.

 

Carolyn

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It is okay Teechur,

 

It takes a big person to say sorry, I was mad when I read it but all the others calmed

me down with nice posts

 

If you get the rats again can you take it out on another ha !! points to all the others on BTG lol

 

I will type smile again but just don't read it okay.

 

Hope you feel better and back to your Zen self soon. 

 

Regards

Win (smile?) ha ha x

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Hope all of you are doing well this fine and chilly weekend.  I can't find the post but I remember seeing someone apologising for 'hijacking' the thread.  No need to apologise, I kicked it off after all.  Our experiences vary wildly from superbly informed to outright mis-information.  Hopefully future subscribers our current practioners will see this and take heed.

 

Anyway things are slowly returning to 'normal' for me, longer wakefulness less head stuffed sensation when getting up from the floor quickly.  I know I was let off very lightly so not pushing myself hard at all and just letting the improvement come at its own pace.

 

This evening I turned down an evening for Christmas drinks at a friend's house, becauseI knew it would only be a matter of a couple of hours before I would be asking to use their bedroom for a snooze!  Not the done things IMHO.

 

Have a good weekend all of you.

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It is so different for each of us. July 15 I had the SAH. After the dentist appt my neck was stiff. Got stiffer then at the drugstore kept rubbing it. Got in the car and whammo. Burning at the base of my neck, shot gun headache then it went over my head into my eyes. The world turned upside down and sideways. I drove 1/2 block back to the dentist and said "help me". Called the ambulance. Went to 2 hospitals and one that has neurosurgeons.

 

2 weeks of intensive care . I was awake and I remember every detail. It took 6 weeks on the couch at home. No sound, no light, no talking , no food as all I wanted to do was throw up. Gradually over the summer I felt a little better. But believe me i did not do a thing. I did not want to talk to anyone or do anything. I was terrified. Yes I got depressed then one day said I am getting better. 1 month later by 5th CT scan it was like it never happened.

 

My advice. Slow slow slow. Do not push a thing. You almost died. For some reason we were all saved. This is the most deadly bleed and if you live you will recover. It may take years but so what. Time is now. I am a very healthy person, positive, upbeat, lots of things to do, retired but wow was I ever consumed with rushing and perfection. It kicked my butt.

 

We live in Mexico 6 months and here I am. I made it. But guess what. I fell off a 3 foot cement wall and badly sprained my ankle. Now 2 weeks on the couch again. What the hell???? I was so lucky I did not hit my head on the cement I fell onto. So what is the lesson again???

 

Take care and time will heal . Just dont rush!

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You are really coming along Julian!!!! Love it! So happy for you!

 

Carolyn, my Stars and Stripes buddy, I too am extremely positive. Being positive does not mean we don't feel our feelings. Not in any way. It means that we acknowledge them, but still choose to soldier on and be thankful for each day. I'm not necessarily yet thankful that this happened but I am thankful for every good day I have and for the amazing life the Lord has bestowed upon me. Even my neurologist remarked on how much my positive attitude has benefited me. She gave me a big hug at my last appointment and told me she was proud of me because most patients she has with my condition are home in bed and not working. 

 

One thing that I have started to realize is that things do happen for a reason and that the reason for this is coming clear slowly (that has been part of what I've been frustrated with). My nephew has been suffering a series of small strokes and these strange migraines that mimic strokes. Sometimes he'll be paralyzed for a few days. It's really scary. He has, from all of this, chronic daily headaches! Welcome to the club, nephew! When he is at his wits end, he has me to turn to to listen. I let him vent and I I understand and we always come to laughter because you have to laugh because you can't cry all of the time! He is way worse off than I am. Poor kid. He's in his early 30s.

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You are really coming along Julian!!!! Love it! So happy for you!

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

 He is way worse off than I am. Poor kid. He's in his early 30s.

 

Dear All

 

Its great reading all these different experiences and I notice a common thread in many of them.  The new appreciation for life.  Definitely happening for me.

 

By the way I had a first full day of not sleeping during daytime... admittedly the 2 subsequent days did feature an hour or two in bed but progress is progress.  Musn't grumble.

 

Teechur, thanks for the comment and please pass on my best wishes for a recovery, treatment or cure to your nephew.  Hopefully he manages to get past this torturous time and it settles to something more manageable or completely innocuous.

 

Happy Holidays and Merry Christmas everyone

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