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Painful Shunt tubing in abdomen

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Hi guys,

Wanting some advice please.


My last update, I had a lumbar shunt fitted in March this year, where I suffered some awful low pressure symptoms due to the shunt over draining. The whole nation went into lockdown, where I had to endure these horrible symptoms until it was safe for me to go back into hospital. CT scan showed I'd developed slit ventricles due to over drainage. 


The neuro surgeon decided to tie off the troubling lumbar shunt and leave it in as a back up. He added a further Ventricular Peritoneal shunt, having to go in free hand using ultrasound as my ventricles had become constricted. I only found this out after the surgery, I'm now back in high pressure, hydrocephalus symptoms are being troublesome again.


And I'm really having problems with stabbing pains in my tummy and right side where my rib cage on my side. I'm feeling the tubing, I'm having to use a hot water bottle everyday to help with the discomfort. Some days I feel tubing in my neck go taught and get pleuric pain in my ribs and right shoulder. 


I've been trying to put up with it, but after 10 weeks, it's just not settling. I'm waiting for my appt to go back in to have the shunt setting lowered, should I say something and request an ultra sound on my tummy to have the distal end checked out, I'm in so much pain, I literally can't do anything.


Would really like to hear your thoughts from you guys in the shunt club xx

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Hey Bev

what a time you are having with this and I feel your pain as this is a hard time, I recall it too well. 


We cant give medical advice as you know but what has served me well is if something doesn’t let up or Is getting worse then go get checked out or at the least call your Neuro Team.


i had a lot of piping discomfort early on after my VP shunt was placed , they put it to the pipe work settling down , I also had a lot of nerve pain under my shoulder and under rib cage which took my breath away, heat definitely helped with some relief for that as did baths with bath salts( don’t laugh ) . My GP at the time was fab and thought it was an irritation of the phrenic nerve. It came and went but to be honest pain was pretty constant and yes it got better but I’m talking months before it started to ease. 


Also ask them to check mineral levels. You’ll have lost a fair bit of CSF and that plays havoc, you may need some vitamin supplements like D or magnesium. Try and eat really well , frequent and often and get some fish in there as well as mineral rich fruit and vegetables . 


Once i I got my setting right that helped as it allowed my body to actually start healing instead of lost energy having so much pain all the time 


But Bev my view is if this is constant still and getting worse then  I’d be getting it checked. Hydrocephalus as you know is a silent beast but not worth taking risks. 


Sending good vibes. You have come through a great deal , you should congratulate yourself on all you have  weathered. 


Daff x 

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Bless you Daff. Everything that you've described is exactly the same for me too.


Totally know what you mean when you say it takes your breath away, Literally! It sure does. Funnily enough, I've just started taking vitamin D, B12, magnesium and a fish oil supplement as the pain in my hands and feet have come back with a vengeance,  Fibro's flared up again, so maybe could be a contributing factor too.


I'm still feeling quite sick, sensitivity to light, sounds and smell, still overloaded, having to rely on anti sickness meds again. I feel I'm back to square one yet again!!

How long did you find it took before your symptoms started to settle down?


I'm now being medically retired from work, as it's 7 months since the first shunt op, it's been a long 2 1/2yrs in my recovery, Neuro surgeon said, I won't now get back to how I use to be pre bleed, I'm having to find my new norm now. So having to deal with my impending retirement from work, having giving my all to get back working 16hrs from home, I just can't cope with it any longer, it's not giving up, it's recognition that change is needed.


Daff, you've been a wealth of information and support to me these past few years, thank you sooo much. I live on my own, my daughter who's been a fantastic support has now gone back to uni, it's been a bit scary being back on my own again.


The OT has made sure I've got all the adaptations that I need, so just seeing how I get on. My oldest daughter who lives 5 mins away, pops in after work, so I can have a bath/shower. 


Resilience is our strength, still here, still hoping xxx

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Bev i think you are doing amazingly. It’s hard the letting go of who we recognised ourselves as and the anchors of jobs, purpose and all the other markers which we built our life navigations around. Those fall away and then it’s  an adjustment of what next, what’s possible in today, in tomorrow and celebrate the good and small things amongst that.


so a few things that help, still help me. 

1. Mindfulness. I practiced before and I practice now but harder but with more gentleness.  So I’m not rigid in my practice and can find mindfulness in many things I do, it helps me stay present and worry less.


2. Eating regularly and keeping the water up. And if you are low pressure symptomatic post all your work  I still use the old can of full fat coke , that was my Neurosurgeons suggestion! 


3. Start from the worst point. Measure from there. See you are doing amazing! 


Retirement will reveal opportunity. Find something new to love , to be curious about that sits with the head worx. Be brave but gentle And patient and take ALL the help you can get. 


It took 12 months before James (Shunt) and I had a more stable relationship but it got incrementally better once i stopped expecting too much too fast. Easier said than done and stubbornness and pushing boundaries is equally important but it’s finding a balance that works for today. 


8 years with him now and i still see progress. Always hope 


Daff x x

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  • 3 months later...

Hi Daff,

It's been a while and I just want to say a big thank you 😊 For all your support and advice you've given me these past few years, which have been invaluable to me.


I feel like my journey after my bleed has been a very similar one to yours and it makes me feel that I'm not alone.


I had another shunt adjustment in Jan, where they've lowered the settings to 1.5 so I'm now having to readjust again to everything. Blimey doesn't it take time, it seems for me it takes about 3 months for the pressure to settle. But i'm still getting horrible stitch like pain in my tummy. The hydrocephalus nurse said I need to find another way of doing things, so i'm not bending forward, which irritates the tubing. I'm still hoping that one-day it will settle.


So it's official now, I've been medically retired. I don't think it's quite sunk in yet to be honest.


Hope you are doing ok in lockdown


Best wishes


Bev xx

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