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My SAH was July 2017 and clipped. I hope was borderline with CSF not draining and overbalancing, think was just not taking enough care. Had a shunt put in in October. I’ve had it adjusted at Addenbrookes twice as they thought it was overdraining but once again this has made my balance worse so will probably have it back to original setting in two weeks when I see the consultant. Anyone else have problems with their shunt?  I hate it but guess it’s doing its job. 

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Touch wood not yet Penny apart from the lumps and tubes yuk lol.  But without it I'd be lost as was in cuckooland for an age!! 

 

I have a permanent one  and it woke me up and I sung to a nurse ?? Go figure  lol 

 

There are a few on here who have had it adjusted.. They will pick this up and answer you..Good luck and keep a smile at hand xxxx

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Mines not adjustable Penny, the way I look at it its keeping me alive, once its at a place your ok with it'll be ok...

 

all the best take care..

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Daffs had to have hers altered Penny when she reads it I am sure she will reply (daffodil but I shorten names) lol xxxx

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Here I am Win, better late than never eh?

 

I experienced the effects of Hydrocephalus again after my bleed and whilst had a EVD when initially treated this was removed but later on like you I had to have a permanent Shunt placed when it was clear my ventricles wer too damaged to function properly  but this was a few months out from my grade 4 bleed. 

 

Long post warning. Sorry. 

 

I  now have an adjustable Shunt but in the weeks/ months after I had it placed I had terrible balance issues and sickness. This meant I had three adjustments to my setting until I found one I could function on. It wasn’t a switch though to make everything feel ok, it took at least a year from the last adjustment to get anywhere like feeling ok with it. That means sickness, dizziness, falls, oh and couldn’t drive for well over a year. You have to allow for the effects of the bleed primarily , the state of then placing and adjusting to having a shunt on top In my opinion adds exaggeration to many classic SAH effects. 

 

Living with a shunt is tricky  ( check out Shine for more advice on that) but we have to remember we have also had a significant bleed which caused damage, surgery which caused damage , and effects of the pressure from Hydrocephalus when untreated, yep more damage, then living with Shunt creates an unnatural state for the brain too so it’s not an easy mix to adjust to.

 

I best describe living with my Shunt as clunky . I have to be slower, more considered and measured in all I do and vigilant to changes. But I don’t hate it, it keeps me here. I can do so much again and if it’s clunky then that’s a price worth paying. 

Adjusting to a permanent condition is hard and and you need help to accept that to be honest. I’m mostly there nearly seven years out but it was an uneasy state early on and I resented having to have this kit in my head. 

 

I had to let go of my old self for the most and my ego of that to allow myself to explore what is possible now. And not all days are easy but there is enjoyment in most, apart from the rubbish head fog days in which case call me again the morning, 

Win, Super Mario, Louise were my Shunt gal warriors when I joined BTG, they let me know life goes on and Super Mario was flying all over the place and I thought ‘ I want to do that too’

 

My Advice. Take a look at what and how you do things, accept offers of help, speak to your team if things are intolerable and advocate for what you need to live with a Shunt . If you don’t feel things are right then keep chasing as none can know what is like for you, each person will have a different impact on them and reaction.

 

If it’s feeling out of balance constantly and hurts to stand then my  experience is get it checked for malfunctions.  If it comes on when you move faster, get up for instance then it could be you need to slow or change how you do things. Even now I can never just leap to standing. If I do that I will fall. 

 

Teams who treat this are learning but the fact that they don’t know why or how the brain constantly create and absorb CSF and what affects means that any mechanism to assist or replace that function will never match our own previous ability to do it naturally and aligned to what our bodies needed. Thus my definition of clunky!

 

Candidly there are times when I rush to the loo and know that my shunt has just ‘drained’. I can tell as I recognise the CSF smell. I have shared that with my Neuro Team and they expressed surprise and incredulity that there could be an effect like that but I know I am not alone in experience of that and that’s just one thing they don’t get, and there are many.  But teams do want to listen, mine do anyway, I have the best Shunt nurse ever! 

 

Penny, have hope it will improve for you but don’t accept or be fobbed off. If you feel it’s not working for you then explore with your team what will. Don’t ignore any sign though which is sudden and could be Shunt related. Get yourself checked immediately without delay. 

 

Me? Well after all my early on adjustments I have a steady state for the most part. Few blips here and there which have required investigation and some extra MRI ( I still have annual checks) and last year I had some short term vision issues which we thought could be connected but are optical-migraines which my brain registers differently according to my neurologist. I keep alert for any sign of malfunction and other than that just try to live my adjusted best life. 

 

By by the way I was 39 when I had my Shunt placed 

 

Good luck 

 

 

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Penny, I must say I did not know they have an adjustable shunt  lucky so far I have not problem other then the tube lump.  I am always very tired it has been two year just have some strange sensations and my right ear always feels funny i just figure going to be like that rest of my life I also do not like it but it is part  of us now, Sometimes feels like creepy crawlers running down by head. also it has been 2 years 

 

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