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Tracking SAH Recovery with aquired hydrocephalus; my thoughts


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Thanks for your update Daffs.

You should be very proud of everything you do and all that you are.

I'm very grateful for the strength your posts have given me.

You are a lovely lady full of wise words, thank you.

Big hugs to you.

Take care,

SL Xx

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  • 4 months later...

Reading this has been a real inspiration. My dad has gone through pretty much everything you described. He had hydrocephalus as a result of his grade 4 SAH and had a magnetically adjustable shunt fitted around two weeks ago. The difference has been just superb and we feel like we have got dad back.

However, he still confabulates and is currently still wheelchair bound despite being determined to get out of the wheelchair and walk normally - there is time! Reading your experience has been a real boost. Thank you so much for sharing.

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  • 2 years later...

I decided that it's maybe time to write a view further down the line on this thread as hydrocephalus is one of the lasting complications that can result from an SAH but there is little insights to be found.

 

Its now five years since I had my shunt put in after It became clear that the hydrocephalus that had been treated post my SAh in April 2012 had returned. I watched the 2012 olympics back at my treating SAH hospital, actually correction, I asked for them to turn it off as the noise and flashing lights from the opening and closing ceromony were just too much to bear but I did get a good photo of the red arrows flying over my hospital out the window but that was a hard time indeed. A lot of pain and a tumultuous time followed in finding my new balance. 

 

So how is life five years on from shunt insertion combining that with recovery from a grade 4 posterior artery bleed?

 

i have returned to work part time and stayed there. I have a very understanding employer and over time I have taken on a new role which absolutely fits with the stamina and capacity I can bring to work. In the early days I used audio books to practice my ability to listen and retain information as that was a real struggle at first and I got a lot wrong. Now I have a balance and I do what I can do to my limits and am honest with people but think I manage to do a good job and that was important to me. 

 

I can travel and live with my family independently , look after my growing daughters but I know that every 'effort' I make requires a pay back, so if I have a big day then I need to plan for the next to be very quiet, with extra sleep and rest and not much stimulation. Whilst this has improved over the years and I keep pushing the envelope of what I can do I am still left with lasting fatigue and cognitive issues and I do have spells which are very tricky and uncomfortable but that's my landscape now and it brings less fear and worry.

 

i have used aromatherapy to help me at times of anxiety and mindfulness which now is part of how I tread each day, I got to hear Jon Zabat Kinn speak recently and he reminded me that the art of living can be a study in mindfulness if that's how you approach it, that's what I try to do. 

 

I have scans and hydrocephalus clinic annually but also can contact my hydrocephalus team I needed, I di at the beginning of the year when I experienced a real shut down of senses and balance and had everyone worried, myself included, but a scan revealed no obvious cause, no block to shunt but it's something I have to check out, it can't be ignored. My shunt whirs away and on bad days I will tilt my head to be sure I can hear it working but I trust it does its job in draining the ventricles and just stay vigilant to anything that isn't my normal. 

 

To all all intents and purposes I look and present normally which is sometimes hard but people who know me well will tell you I have changed so much since 2012. I take a stick for long walks , I wear hats in all weathers and I don't stress the small things ( thanks Win,) I look after myself more and listen to and make time for what's important. I now volunteer for a medical school helping educate new trainee doctors and feel lucky to moderate here which makes this part of my routine now so I get to keep up with all of you. I'm shattered by most evenings and so my social life is pretty non existent but that's something I still have ambition to change. 

 

The critical time for me is a long way in my rear view mirror but my scars and deficits  remain close but I have adapted by finding new ways to do things and ditched the stuff that didn't matter or just doesn't fit my brain anymore. I miss my old ways but enjoy the new ways too. Constant change and evolution and being curious about what that looks like and could possibly be  has been helpful.

 

People won't see the everyday struggles we have but then again we don't always see theirs so I just figure tread gently with yourself and others and if it's a bad day today then hopefully tomorrow will be better and always try to be kind. That doesn't mean be a walkover though, on no, I have a certain fierce brand of kindness. 

 

my mantra, 'it is what it is' 

 

Onwards.!

 

 

 

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Well written/typed as usual Our Daffs,

 

This site and the likes of all of you has been a great help,  as it is somewhere I can give vent to my worries like is this and ask is this the norm..

 

We all know we cannot give medical advice but to share a problem on this site, well it seems to half/halve it xx makes sense? 

 

Thanks for post Daffs and us from the Shunt club need a smile  xx 

 

Love to all on BTG

Win xxxxxx

 

 

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  • 6 months later...

Daffodil

 

picked this up online from 2013. How are you now? Apart from being fantastic in your support for us all. Have you got any normality back. ? I had a SAH in July 2017 and shunt fitted in October. Still wobbly and headaches!!  Does it get better?  What can I do to help myself. So fed up with walking with a stick. Sorry but that’s how it is. No more 2mile walks with my springer. Does anyone know haw Long it takes to get a driving licence back. I feel marooned. 

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Hi Penny

 

glad you found this helpful. Like you I came looking for some help some months after having my shunt placed when I felt  dreadful and a little lost as to what happens next. I found my google search led me to BTG and it’s  a place where I found honesty, practical advice, shared experience and compassion in our bewilderment. 

 

I’ll try and answer some questions but as a snapshot here are some of my timeline highlights. 

 

I had had my drivers license revoked for over 13 months. It was a long time without mine and apply as soon as you can as the DVLA is not quick but I wouldn’t and couldnt have driven sooner, even after I got my license I could only do short journeys , struggled with night time journeys but now nearly six years post SAH I can manage longer drives and short night time ones.  When you are without you can gets free bus pass if you don’t  already qualify.

 

i was off work for 16 months and then when I went back I did 5 hrs a week. Yep 5! I built up slowly with help of employer and after two years I got back to 16 hours a week and still do this now and that’s my absolute  limit to balance with all the other life events like bringing up kids . Maybe in future I may find more reserve but it’s not there’s at the moment.

 

dizziness and imbalance lasted a long time. Like you I enjoyed walking my dog but also swimming, I couldn’t get back to swimming as the way I held my neck swimming tires me greatly post shunt but I now walk every day and have a good level of fitness. You have to build up very slowly and give it time.

 

i had to have help to travel somewhere by train at first when I started to gain more confidence and book assistance but now I can manage it independently but carry my stick and wear my ‘please offer me a seat’ badge . Last year though we almost missed a flight as I didn’t book assistance and I couldn’t get through the airport quickly, so learnt my lesson there. 

 

You asked what can you do? Well I learned fast to ask for help and not to worry what people thought , tbh hadn’t paid much attention to that pre SAH and I figure most people like to help and if they don’t well then let that ship pass.  It took a long time to get a new sense of balance and feel anywhere like my old self. I can’t tell you that I do now, but I feel like myself if that makes sense. I know this version of me a bit better now and I think that’s what is so hard in the months afterwards. Our lifetime of knowing our brains and bodies is emptied out and we kind of have to start building that new knowledge and find new limits and new ways.

 

Be curious  Penny about what Is possible but be kind with it. When I couldnt walk the dog I sat in a chair in my garden with a ball thrower. Not the same but we found a new way for that moment. And now I can walk two miles or more...but always with my stick . And that’s my new normal.  And but I’ll take it over where I was in the months straight after so I see it as progress and also how fortunate I am to get as far as I do with just my stick . Just try be kind and give yourself the consideration you would offer a friend in the same circumstances. 

 

So Does it get better? Well I hope with time it will improve for you as it has for me. 

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