V P Shunt

[liz2]

Hi Everyone

I have just found this site and think it might be very helpful to me. I had a SAH in January and was fitted with a V P shunt to drain away excess fluid. Has anyone else had one of these? I can't find much information about them, i.e living with the after effects, any problems, abdomen pains etc. I saw my consultant yesterday who said I was doing well and to expect it to take about 6 months for things to improve.

I have been improving every day until the last week or so when I feel I've reached a plateau so am a bit disappointed and I suppose frustrated. Because I feel generally alright in myself, I think I should be like I was before it happened and I can resume all my usual activities, but I can't yet. I suppose it's going to take longer to recover than I thought.

Regards

Liz

[Daffodil]

Hi Liz and welcome.

Thee are a few members of the shunt club on here I had mine placed last July after the hydrocephalus that i got with my SAH returned a few months on. I've had a few ups and downs with the shunt but I now appear to be at a good setting for me and life is a whole lot better.

It's taken a while and it's hard to know what's SAH recovery and what's shunt effects and recovery.

Happy for you to PM any questions.

Daff x

[Louise]

Hi Liz, I've said welcome somewhere else here, anyway I have a shunt & a tube in my brain.

my shunt isnt on a setting or anything its just there in my head.

I had lots of plateaus but kept improving even when I didnt think I was improving there was improvements that I couldnt see.

[liz2]

Hi Louise

Have you ever had stomach cramps or stich like pains from the shunt? I've been getting them occasionally ever since I came out of hospital but the consultants I saw yesterday didn't think there was a connection, but surely a tube floating around inside the body must have some effect, or perhaps it is when the fluid is draining away?

I find this website very good for information but a bit confusing knowing where to post things. I saw somewhere to introduce yourself but I can't find it now!

Liz

[Super Mario]

I have a shunt that drains into my abdomen just under the skin. I have had no problems at all with it.

You can find information about them on this charities website.

http://www.shinecharity.org.uk/hydrocephalus

They will also supply shunt alert cards x 2 free of charge, received mine today.

Oh and it is free to join.

Hope this helps.

[Winb143]

Hi Liz,

I got wind and was feeling tight around tummy (gassy also shh).

It took me a while to get used to tubes in neck but I hardly think of it now. I kept feeling them and lump in head.

Before shunt was fitted I was in cuckooland and only remember small bits but directly I had shunt fitted I was the old

chatty me much to my hubby's dismay. j/k.

It takes a while but you will get used to it and welcome to BTG.

Look back in 3 weeks and see how you have improved. Now come out fighting xx

Drink boiled water see if it helps. My Mums remedy to tummy upsets lol

Good luck

WinB143 xx

[Daffodil]

Hi Liz, just to add I did get pain as the scar on my stomach healed and oddly enough I get nasty pain in my shoulder when i get a stomach which my team think is the piping aggravating the phrenic nerve occasionally , this is the nerve that is shared with your shoulder and neck and so that makes sense to me.

My shunt is adjustable in settings with a magnetic valve to control it ! Is your adjustable?

Shine are a good charity, I'm hoping to go to a session in London with them soon to learn about hydrocephalus a bit more, promised I'll post the results on here.

[liz2]

Hi Everyone in the Shunt Club!

Thanks for those replies, my shunt was put in because I wasn't responding to the lumbar drain they did, but I don't know if it's working all the time now and no one has said I've got hydrocephalus. I can't lie on my right side in bed (it's behind my right ear), touching it used to make me feel dizzy but that's better now. I think one of the doctors said it could be adjusted with a magnet if need be.

Liz

[Louise]

Hi Liz

I get something similar from the tube not shunt the tubegoes from my brain down my neck and into my stomach when it clogs up I getsomething similar.

Just read your last post your shunt is different to mine, mines cant be addjusted.

The tube wont float around after a bit it will become onewith everything else if that makes sense.

Introduce Yourself is: Forum, then one underneath Subarachnoid Haemorrhage/stroke discussion its General Discussion. Hope that helps.

[johntaras]

Hi Liz,

I had a shunt put in in December 2009 six weeks after my SAH because I was "away with the fairies", my system no longer absorbed cerebral fluid and my condition would not stabilise. I have had no problems to date with the shunt. It is fixed and not the adjustable type. What I have noticed is that I get headaches if I do not drink enough fluid. My logic is that as the shunt is fixed flow it is always removing fluid and I balance that by my fluid intake. It works for me.

Good luck with yours.

Kind regards

John

[Winb143]

Does anyone in the shunt club, when stressed, feel their shunt is working overtime ?

I get to the point where I have to massage the lump behind my ear when I get upset.

It doesn't help me much but makes me feel calmer and makes me remember No Stress ever and how well we

have come on, as before shunt I was in cuckoo land.

Good luck All

WinB143 xx

Edited May 10, 2013 by Winb143

[liz2]

Hi John and Win

I seem to be able to 'feel' my shunt more when I get tired. I still can't lie on the side it's on, if I press on it too much I start feeling dizzy again, is that to be expected?

Has anyone ever had one removed if it's not needed any more?

Liz

[Super Mario]

Can't answer about the dizziness, I don't get it by laying on it. In the early years the area was tender but that has settled down and now I can lay on it.

I have often wondered about whether mine is still needed but thinking about it the only way to check is to go into hospital and have it 'switched off' whilst being monitered. I think it is much easier to leave it in place and let it do its work if neccessary. If it is not needed it will not work.

[Daffodil]

If I press hard on my shunt valve then it actually empties , it's designed that way so I'm not sure pressing hard is a good thing in the early days. After the area has healed a bit like Penny says then sure that's fine.

Dizziness is pretty common early on but if it's very bad then get back to your team as they may need to adjust the setting if it's an adjustable shunt. Mine was adjusted a few times before I got to the comfort level of where I am now.

Win, if I get upset and cry then I find afterwards I feel very low pressure symptoms like it has over drained. I put this down to maybe we create more CSF when we're stressed and then of course our lovely contraptions drain it off. My top tip for that is to have a glass of coke, the caffeine whilst not great for other stuff , seems to help lift. I then lie down. That helps too.

[johntaras]

Hi Lyn,

I do not expect to have mine removed as I believe it to be a necessary addition since my SAH when one of the outcomes was the absorption of fluid in the brain stopped thus raising the inter cranial pressure and sending me into a state of non recognition and any ability to do anything. For the weeks prior to its insertion I was in a state of not recognizing being in hospital or the nurses, however I did know family members.

I just have got used to it now and its part of me. I do carry a Card in my wallet that I got free from Shine with my details on and what to do if anybody finds me in a disorganized state due to a blockage in the pipe.

Hope this helps.

Kind regards

John

[Louise]

Win when I'm stressed, tired my shunt/tube works overtime, so at the moment its annoying all the time for me which makes me so tired a lot...

[Winb143]

Liz,

I thought I'd never get used to it but John has said it all.

Leave well alone (my words) but after a while it does get easier to live with, as I can now put a cushion/pillow

under it and I lay on shunt side (my right side). We are living proof that it works xx

Before shunt I was like John away with the fairies, seeing my parents who had passed on etc. etc.

I remember saying to Daff the worst bit was feeling the tube it was strange at first but now it is a part of me.

As Louise says when stressed it does annoy you xx Tube is going like the clappers, (my words)

Love to All xx

WinB143

[liz2]

Hi All,

Thanks for those thoughts. I'm having my 6 months check MRI in June and the question form the hospital sent asks if I have a programmable shunt, I remember the doctor saying it could be adjusted with magnets from the outside, does that mean it's programmable does anyone know?

[Winb143]

I don't know Liz ???

Guess its just our posh Daff who has a convertable version lol

Daff can answer your question xx.

WinB143 xx

[goldfish.girl]

Hi Liz,

Sorry I don't know if that means your shunt is adjustable or not?? My son's shunt isn't adjustable, just drains continuously. I've only just read this thread but thought I'd comment that he did have stomach pains for quite some time after his shunt was fitted but that doesn't happen now. Hopefully it will also be something that settles over time for you too.

Thank you for the link about 'shunt cards' Penny. I clicked on the link to see about ordering one for my son, should he become unwell when I am not with him. Unfortunately they are only available to people in England, N. Ireland or Wales - not in Scotland for some bizarre reason

Michelle x

[Super Mario]

If your shunt is set by magnets it is adjustable. MRI can alter the setting so you will need a skull xray before and after the scan. If the setting has altered it will have to be reset. A quick and easy thing to do. Nothing to worry about.

[Daffodil]

Hi.

If yours is adjustable by magnets then prior to a MRI they can check the setting which they do with a special item of adjusting equipment unique for your model. Mine for instance is like a large pen. It presses quite hard against the shunt valve, uncomfortable but doesn't hurt, then reads the setting you are on. They then check this again after MRI.

They can also read the setting on the valve through a CAT scan or X-ray like Penny says.

That said there should be a record of what setting they put your shunt in at. Different shunts have different settings so worth knowing this for future reference and you can keep a record on your shunt card that SHINE send you.

I've also had a medical keyring made up which is on my front door keys as figure that's a good way of alerting people to the fact I have a shunt if required. Hopefully it won't be

[liz2]

Thanks Penny and Daffodil, it does sound a bit scary but I suppose it will be alright. I phoned the hospital to ask them what type of shunt I've got but they haven't got back to me yet, so as always this site has come up trumps. I think all the advice and information is brilliant.

Liz