Vp shunt removal?
 

Has anyone ever had a removal of the vp shunt? I've had mine for 2 months and since day 1, I've wanted it OUT! It's not helping me, I've had tests that show its working but my symptoms have stayed. My headaches have actually gotten worse, and my anxiety is through the roof ever since.

Anyone have experience with this?

Thank you
Nicole

Have you had icp monitoring? I don't think shunt o grams show a good picture of what's happening. Our surgeon isn't a fan of icp monitoring (for our kid) but I have been close to pushing for that. He'll do a revision instead.

They would probably not remove the shunt, they could tie it off so it wasn't draining anymore. Less complications I think that way.

Hey Nicole,
I have one functioning shunt and one non functioning shunt within my skull. I queried this because in my view if it isn't working, why leave it there? why not remove it? It was explained to me to the brain's consistency is a bit like a bowl of jello. Sure you can push a tube through the jello, but when you remove the tube the jello falls back on itself. In terms of the brain this could easily damage the brain's fine circuitry and this was why the tubing was left in situ and the entire appliance replaced.
Prior to my initial surgery back in 1996, sure I had headaches, nothing monumental, just headaches. Post surgery... ....OMG!!!! I have NEVER been in such agony, it took months and months to 'semi' recover. I returned to my job but things were not good. The dr's? hmmm lets just say that was a waste of time and I learnt how best to manage for me. At first my stress levels were off the scale. Every twinge and I'd panic (so did my wife)But due to the medicos and their attitude I learnt to ignored symptoms and by the time I did act, my situation had become chronic and I was rushed in for an emergency craniotomy. My last operation was 3yrs ago now, since then I am yet to have a headache free day and I have not been able to return to work.
The dr's now say it's nothing they have done, that my continuing pain is because I left it too long before saying something was wrong and yet when I had spoken up in '96 I was labelled a hypochondriac. ????????

Now, you say the shunt has not assisted you, but, the shunt's role is to regulate the intracranial pressure (ICP). We naturally produce about 500ml of Cerebral Spinal Fluid (CSF) each day. If that fluid cannot get out of your skull this can cause problems. There needs to be a balance between brain matter, blood and CSF. The shunt helps to maintain this balance. Too much and you'll have problems, too little and again you'll have problems. Many dr's do not consider symptoms as their primary concern, but more, "What do the scans show?" If the scans show an issue then they may act. I say this as this has been my own experience, when I mention headaches the common response is "...oh headaches, EVERYBODY gets headaches..." As if I didn't already know this. BUT not everybody gets headaches like these.
In hospital I was asked to give my pain a rating out of 10. I said 15. The nurse turned to me and said "ohh it can't be that bad". Pain is a very subjective thing, if they've never experienced pain of this intensity, how can they understand it. It's simple. They can't. Only others who have been there can know. I explain it like this "when you hurt your arm, your arm hurts and it affects your arm. When its your head that hurts, it affects EVERYTHING!!!"
Others do not seem to understand this.

Hope it helps
Merl1n

I'm wondering if my surgeon would consider removing the shunt and catheter that goes into my abdomen and just leave the catheter that goes in to the ventricle. I'm do miserable. This isn't helping me at all. I just want it out 😢😢😢😢😢😢

Hey Nicole,
To be honest with you, they would not have placed a shunt if it was not deemed necessary. You would have to speak with your surgeon and neurologist. The shunt, in my experience anyway, certainly has some major impacts on life BUT (and this is a BIG BUT) I'm still alive. From all reports I would not be alive without it. The impacts for me have been huge and I would not wish this on anybody, my life will never be the same again and I know it, but the alternative... ...well, there wasn't one. Death ain't exactly an option as such.
Pogo is correct "have your icp checked". When I was in hospital they blocked off the whole appliance to test if the shunt was still required. In my case I still need it. Have the appropriate test, then have an appropriate conversation with your surgeon. They will be able to give you an appropriate answer.
Hope it helps
Merl1n