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Six months on - Daffodil


Daffodil
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Hi all. It's almost six month since my SAH . I collapsed at work but luckily someone recognised the symptoms and I got help fast with surgery for coiling and a temporary drain for hydrocephalus. I was recovering well then I had to go back 6 week ago with high CSF pressure and now have a VP shunt. The last few months have been incredibly hard and i have a new respect for pain. When I am feeling positive I can see the good fortune I have to still be here but I am very up and down in my mood. Having a shunt installed really set me back, emotionally and physically, and it seems to be hard to get a correct setting,I have had three adjustments already. Has anyone had similar and able to reassure that the shunt will improve my quality of life?

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Hi Daffodil,

There are only a few people on here that have had a shunt fitted post SAH, so I'm hoping that they will reply to you.

As for the emotional stuff, then I think that it's perhaps no different than the rest of us. A SAH is a great deal to come to terms with, both with anxiety and perhaps a little bit of depression too.

It sounds as though you've been through a lot in your first 6 months physically and this is bound to take it out of you mentally.

Six months recovery is such early days and I truly believe that it takes a good 2 years for your brain/emotions/anxiety to start to settle down. If you're feeling anxiety or depression, go and see your GP, as it's not abnormal to have these feelings and they will be able to help you.

Hugs xxx

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Thanks Karen :wink: I appreciate the response and advice, my GP has been fantastic so I'm getting good support there. Everyone tells me how lucky I've been but I guess getting used to th permanent change in lifestyle and physical ability takes time. Hope some other shunt beneficiaries reply. I've called mine James.

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Thanks Karen :wink: I appreciate the response and advice, my GP has been fantastic so I'm getting good support there. Everyone tells me how lucky I've been but I guess getting used to th permanent change in lifestyle and physical ability takes time. Hope some other shunt beneficiaries reply. I've called mine James.

I call mine "my brain drain" as I am sure a few cells are being lost through it daily. :-D

Mine, apparently was set several times whilst in hospital but I can't remember that as I was totally out of it. I have had no problems with it at all in the last 8 years.

Once they have got the setting correct it will make a huge difference. I think it is just trial and error until the correct setting for you is found.

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Hi daffodil,

I don't have a shunt but my son had one fitted in Jan 2011 (for a brain cyst, not an SAH) The operation knocked the stuffing out of him & he was incredibly unwell for a very long time. However, I am seeing improvements now - he can run about & jump on his trampoline for longer periods, although those may not be activities you're planning to do :wink:. He also struggled (and still does occasionally) with the emotional side of having a shunt fitted. One of the other members on here gave me the advice to see it as a friend helping you instead of an enemy. This seemed to help him a little & I hope it helps you too.

 

As Penny said, once it is set right you will hopefully have no further problems. My sons' has not needed to be adjusted so far and although it has been a long road, there are very definite improvements happening now.

Michelle x

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Michelle, thanks for sharing, I am glad your son is doing ok. I guess trampolining is not top of my list but my Daughters would like to see me have a bit more bounce than I have currently. I know I would too. It surprising that the shunt has knocked the stuffing out of me more than the SAH but maybe it's the combination of the two. Happy Saturday everyone.

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Hiya an welcome

Hmm emotions I'm 8 month down the line an my emotions still kickin in I had 5 mins this mornin in tears for no reason I was thinkin about the two body guards they put at the bottom of my bed because I wanted the toilet an bein drugged up I didn't know what I was doin. I was told after that I'd ripped all my lines out my hand arm an oh my pipe out my private bit oups I've never been nasty but I got bouncers at the end of my bed oh dear !!!!

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Hi Daffodil,

A warm welcome to BTG.

It's a huge rollercoaster of emotions following an SAH.

Mine was 2yrs ago and I've learnt to take each day as it comes.

 

Now and again I'll break friends with the clip in my head, but we're good buddies most of the time!

Have you read 'a letter from your brain' on the home page, under inspiration?

I always harp on about it but it really is a brilliant piece of writing and I still read it often, especially if I need grounding.

 

I hope your shunt gets sorted soon, I'm sure your'll then see improvements.

Maybe the trampoline isn't such a great idea right now but maybe a lil skip around would be good!!?

Take care,

SarahLou Xx

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Keep chin up and if in doubt see Surgeon ...mine was/is okay...apart from lump at back of head lol feels awful and pipe runs down neck..

I cry on a regular basis...always have done , guess I already was watery headed. joke !

Give it time look back in a month or 2 and see if you feel better to how you were...We are Special so wear your shunt with pride ..lol

 

Hope this site helps you as it has me

Keep Well and sing....xx

Love

WinB143 xxxx

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hi daffodil

welcome to btg

my lin has a shunt which was put in because of hydrochplus which a dr didnt want to treat she has an adjustable one i know the benefits once they get the setting right to allow the right amount of cfs the fluid surrounding the brain to remain it is time consuming but the benefit you will see will be a pleasure please try and put up with the discomfort it wil be worth the effort lins coma scale was three before they put the shunt in when she woke up after the op it went up to 11 so a massive improvement so chin up and give us a smile its worth it take care

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Thank you Win, Paul and Sarah. I have had a much happier weekend just talking to you all through ths site and hearing your advice. My rather mad haircut and horrible piping from the shunt is an excuse to wear hats which I love to do and I will try and sing more Win. Crying I can do rather well already but know that i feels better when i have a good old sob. So far so good on this shunt setting, maybe ths one is my magic number. Enjoy the sun everyone.

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Thank you Win, Paul and Sarah. I have had a much happier weekend just talking to you all through ths site and hearing your advice. My rather mad haircut and horrible piping from the shunt is an excuse to wear hats which I love to do and I will try and sing more Win. Crying I can do rather well already but know that i feels better when i have a good old sob. So far so good on this shunt setting, maybe ths one is my magic number. Enjoy the sun everyone.

Is the piping not under your skin draining to your abdomen?

I wear my hair extremely short as you can see in my avator and there is a lump on the back of my head but folk say it is not noticable unless I point it out.

The one thing that is noticable is the burr hole just above my hairline at the front where there was a temporary drain.

I only wear hats when it is cold or hot and the metal in the shunt seems to burn through my brain.

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daffodil

dont forget the crying is one of the early stages of recovery ive allowed lins hair to grow a tiny bit at the back so it hides the tube although unless you know its there it is invisable lin has the tellytubby hole at the front of her skull which the hair covers well

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My tube is behind ear under skin ie in head..but you can feel it on a bad day...I have noticed that when I am upset my shunt hurts, well

it seems to work overtime..does this make sense?

Guess I never make much sense nowdays ! So keep calm all of us with shunts x

Be Well All

Love

WinB143 xxxx

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Try not to worry Daffodil, your hair will grow back and hide the shunt soon & no-one will notice it then.

My sons burr hole & shunt come out of the right side of his head, the valve is behind his ear which makes it stick out quite a bit compared to the other ear but he keeps his hair longer now to hide this & it is not noticeable. His pipe work runs down his neck & chest to his abdomen & was very noticeable at first but as he's got better and put on some weight it is really hard to see (maybe just as it crosses his collar bone now). At the start I could track it all the way down his body so I assume it settles in over time and becomes almost invisible?

You have had such a lot to deal with while recovering from SAH and I promise that in a few months, a year, 18 months you will keep getting better & better physically & emotionally.

Michelle xx

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Yep Penny the shunt tubing is underneath but I lost a lot of weight like goldsh girls son so it's quite visible over my collar bone and running behind my ear but I know that'll improve. The shunt itself i can do a combover of sorts but not to bothered. Now I'm not having the pressure extremes my appetite is returning and the nausea diminishing and It's been a good day, Hardly any dizziness even with the hot weather. Burr hole is interesting as it acts like a babies fontanelle and I now if I'm low or high. Thanks for lifting me up. Glad I found you.

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Hi Daffodil and welcome to BTG. I love your name, 'Daffodil'. :-D

I don't have a shunt but just wanted to say that I agree with you about BTG cheering a person up. Even though we often share frightening experiences and are anxious about our feelings and what's happening to us it really makes a positive difference to come here and 'talk' with others who have been there.

Sandi K. Xoxox

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