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Author Topic: Question for everyone with a programmable VP shunt  (Read 9108 times)
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pink lady
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« on: February 19, 2008, 09:21:23 PM »

I have a question for all those with a programmable VP shunt.  I am on my first one, it was fitted approx 3 months ago and it isn't working, I don't think it ever has!  I had a LP 3 weeks ago and my pressure was 35, despite also being on 1500mg of diamox a day.  I haven't had my "6 week" follow up yet and had to virtually telephone stalk the hospital to get my LP.  It's a bit of a long story, but I didn't see my surgeon before the op to ask the necessary last minute questions I had, or see him afterwards, so I am a bit lacking in technical knowledge, so apologise up front for that.

What I have been wondering is whether anyone has noticed one of their "lumps" getting bigger at different times of the day?  I know that one of mine is generally bigger anyway and I'm not sure if it is the reservoir or not, but it is the one closest to the entry point in my skull.  The smaller one is further back towards my ear (there's only about 1 inch between them) and the tubing runs from this smaller one down my neck etc.

I have noticed that as the day goes on, my larger lump gets bigger and bigger, it goes from being flatter to really dome shaped and I almost feel as though it is going to burst out through the skin as it feels so tight.  I am having to use my imagination here, due to said lack of technical knowledge, but is this the reservoir which is filling up with fluid and does this mean that my shunt may be working afterall but possibly not enough to bring my pressure down?

I know I should be asking my Surgeon this, but seeing as my "6 week" follow up is not until April (5 months post surgery) I am at a loss as to what it is.  I have been told by the Registrar who did my LP that they won't adjust the setting of my shunt, as it has been set correctly during the surgery??  I thought the whole point of a variable valve was so it could be adjusted?  Anyway, I have been told that I need more surgery to check the shunt and tubing out and to more than likely have a revision.  It just seems extreme to go straight to a revision without trying to adjust it first.

Sorry for firing loads of questions there, but I am at my wits end with the hospital.  I've had my follow up appointment cancelled 5 times and can't get any info out of my Surgeons secretary, so God knows when I'll get any further.  The sad thing is when I saw my surgeon for the first (and only) time in September I really liked him and thought he was fantastic, but this whole pallarva has really upset me.

I would be really grateful if anyone can help to educate me on what this changing "lump" in my head is and what it might mean from their experience.

Thanks x
« Last Edit: February 19, 2008, 09:23:00 PM by pink lady » Logged
Nolly
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« Reply #1 on: February 19, 2008, 09:29:49 PM »

I dont have a shunt but i wanted to give you this   hug

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pink lady
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« Reply #2 on: February 19, 2008, 09:33:37 PM »

Thanks hun, one back at ya  hug
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Missy
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« Reply #3 on: February 19, 2008, 09:52:16 PM »

I'm not sure but it may be the reservoir and when it is full you can press to pump the fluid out or something like that  rolling on the floor laughing
Head is so not working tonight will try and explain better tomorrow

 hug
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Celestia
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« Reply #4 on: February 19, 2008, 10:28:01 PM »

Sounds like it's probably the reservoir Lisa, and from your description it sounds like my set-up (hardly surprising as we have the same surgeon!  laughing). My VP shunt doesn't work now but it's still in there (although the catheter bit of it's inexplicably moved over the past couple of years, and the tip of it's somewhere near the front of my brain now). When it's slightly flatter, does it feel sort of slightly squishy if you press it?

My first VP shunt I did have adjusted a couple of times, but it made no difference. Like you, I had an LP some time after my shunt and my pressure was in the 30's, so they knew something was wrong with it (I was under the impression that if the pressure's that raised it's more than likely either moved or blocked and that adjusting the pressure setting won't do much), and I had a revision about a year later. When they checked it out, the top bit was blocked, so I had that replaced. Same thing happened with my second one and my pressure was very raised again, even with Diamox, but that time rather than going for another VP I opted for the LP shunt. They didn't even bother checking out the VP one, as it was obvious something was wrong with it (probably blocked like the first one did).
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Emma.x
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« Reply #5 on: February 19, 2008, 10:38:17 PM »

I'm with you on the changing size! Mine does throughout the day - it takes some getting used to. Mine can also be sore to touch at times when it's really big. I often grab my other half and ask him is it's got bigger or is it just me.

I asked about this, and was told it's the reservoir filling up to maximam capacity. Be wary about pressing it though, as I know with my particular one, you are recommend not to do so.

I really don't see why they cant adjust it - I've had mine adjusted 3 times now in 7 months. It may be worth giving it a mention. Is there a Neuro Nurse Practitioner you can contact as that who generally adjusts mine.
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Celestia
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« Reply #6 on: February 19, 2008, 10:46:19 PM »

I asked about this, and was told it's the reservoir filling up to maximam capacity. Be wary about pressing it though, as I know with my particular one, you are recommend not to do so.

Emma's right - I should have qualified my comment. I actually meant just sort of feeling it lightly rather than pressing it hard or anything. I'm not sure if mine's always been like that (can't say it was something I noticed before, when it was working) or if it's just since it's not been working, but mine feels kind of squishy to the touch.
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"No matter how hard you try, You're still in prison, If ya born with wings and you never fly."
pink lady
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« Reply #7 on: February 19, 2008, 10:59:05 PM »

When it's slightly flatter, does it feel sort of slightly squishy if you press it?

When it is flatter it is not straining my skin as much do doesn't feel as solid in general.  I haven't really prodded it too much as don't want to do something I shouldn't.  I just gently feel it.  When the Registrar checked it he almost caved my head in he was pushing that hard and it hurt lots!  He said that there was no resistance in it, which he said was indicative of high pressure, (this was the week before I had my LP). I tried to ask him about flushing it as I had read on here that you could do that, but he told me not to mess with it and didn't expand on that really.

The strange thing is that it isn't that big on a morning, when I would have thought my pressure would be higher, as I've been flat, but it gets bigger as the day goes on and feels like an egg stuck on my head now (slight exaggeration, not the size of a chicken egg obviously).


When you had the revision, did they remove everything from the first shunt and replace it with the new one in the same place?  Or did they leave the first one in and do another one?  Just wondering whether I am going to have more "lumps" in the future, it's already weird having these two.

My first VP shunt I did have adjusted a couple of times, but it made no difference. Like you, I had an LP some time after my shunt and my pressure was in the 30's, so they knew something was wrong with it (I was under the impression that if the pressure's that raised it's more than likely either moved or blocked and that adjusting the pressure setting won't do much)

I had a load of x-rays taken and everything looks to be in the right place, so I assume it is blocked.  I just wondered why it kept filling up with fluid if it was blocked, or maybe it is the tube down to my stomach that is blocked?  I don't know, clutching at straws.

Sounds like it's probably the reservoir Lisa, and from your description it sounds like my set-up (hardly surprising as we have the same surgeon!  laughing)

At least he is consistent  laughing, is yours all at the side of your head?  Mine is on my right hand side with me being right handed, but it has taken me ages to adjust to because I used to sleep on that side, so have had to switch to the other side, which doesn't work that well for me  down  Can't imagine what it would be like with multiple "lumps" on your head  thinking
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pink lady
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« Reply #8 on: February 19, 2008, 11:15:57 PM »

I often grab my other half and ask him is it's got bigger or is it just me.

I was doing this too when I first noticed it changing.  I am sure that Missy (AKA Bob) will have a field day with that statement though Emma  rolling on the floor laughing

I really don't see why they cant adjust it - I've had mine adjusted 3 times now in 7 months. It may be worth giving it a mention. Is there a Neuro Nurse Practitioner you can contact as that who generally adjusts mine.

I haven't a clue who would do it, I was sent home with no directions on what to do if I had any problems and have been banging my head against the wall ever since, trying to get seen/get info etc.  bang head.  When I had my LP I was given a booklet about my shunt that I should have been given when I had my surgery!  That filled in some of the blanks for me, but I have loads of questions that I have not had the opportunity to ask.
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pussycat
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« Reply #9 on: February 20, 2008, 03:54:05 PM »

My lumps can change size too, but I was explicitly told never to press on either of the lumps!! yes Evidently it can interfere with the working of the shunt. 

Here's a  hug hug for you and I hope you feel better soon.
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Lyn
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« Reply #10 on: February 20, 2008, 05:16:27 PM »

I had my VP shunt fitted in Oct.
I'm not very technical but here goes. On the top of my head I have 2 lumps, the smaller one is round and I believe the magnetic control, just along from this is what I think is the reservoir which is longer in length than the other, and is quite hard, it never changes but of the two does stick up the most and is the one that often throbs so much I take painkillers for it.
When I had my shunt fitted I was set at 1.5 which my surgeon said was the average setting and what we are all initially put at. Within a few weeks I could feel the pressure was high, I went back and the setting was now 2, I did a bit of research to see if anything could have changed it (I posted another thread at the time with info I got from asbah on possible culprits) however my surgeon checked with the manufacturers and they think that perhaps it just wasn't firmly on 1.5 at the time of the op and moved itself. Since then I have been back and had my setting changed to 1 as at 1.5 I still felt the pressure was too high.
Whenever I have had mine changed I have just gone onto the ward and the surgeon did it with his little hand held device - both times my GP rang him and arranged but but after the last time, he said if I ever feel it is too high to ring the ward with a message and he'll ring me back & arrange a time to go in and be changed. I think I'm lucky to have such a lovely surgeon, he even rearrange my post op check to make sure it was on a day he was there so he could check the setting hadn't moved again.
Is it possible your GP can contact the hospital for you to go in to check the setting.

Lyn
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pink lady
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« Reply #11 on: February 20, 2008, 09:57:02 PM »

Thanks Pussycat and Lyn.

Is it possible your GP can contact the hospital for you to go in to check the setting.

I'll have to speak to her and see what she thinks.  When I was struggling to get anywhere in January, she wrote to my surgeon but we didn't hear anything back.  When I chased the hospital again 2 weeks later, I found out my Surgeon's secretary had been away ill for a while, so I don't think that helped.

It's all been a bit farcical really, unfortunately my surgeon covers in another hospital and has been there a lot and I found out from calling his secretary on Friday that he is there for most of March too, so he is not going to be around until April.  It's not a very good situation at all really, although I know it's probably not his fault, it's just hard to live with this high pressure and be fighting to get an appointment!

Poor Celestia is in a similar situation waiting for an op date too and it is the waiting that is the hardest, not knowing when things will progress and your life being on hold in the meantime.

Although I didn't feel up to it at all, I went back to work this week, just to try and get some normality back in my life.  I am also hoping that a change of scenery might help me feel a bit better in myself too, as I was getting a bit stir crazy stuck at home.  I'm pretty shattered though and so fed up with feeling like this  cry

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Missy
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« Reply #12 on: February 20, 2008, 10:06:00 PM »

God i hate waiting!  cross

Big wet sloppy kiss coming your way Mmmmmmmmmmmmwwwwwwwwwaaaaaaaaahhhhhhhhh!
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pink lady
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« Reply #13 on: February 20, 2008, 10:12:58 PM »

Thanks Missy  wink
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Celestia
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« Reply #14 on: February 20, 2008, 10:50:00 PM »

When you had the revision, did they remove everything from the first shunt and replace it with the new one in the same place?  Or did they leave the first one in and do another one?  Just wondering whether I am going to have more "lumps" in the future, it's already weird having these two.

Nope, they took the ventricular catheter/reservoir/valve out and put another one in it's place, and left the existing peritoneal end of the tubing, so it's still just the one "lump". 

Quote
At least he is consistent  laughing, is yours all at the side of your head?  Mine is on my right hand side with me being right handed, but it has taken me ages to adjust to because I used to sleep on that side, so have had to switch to the other side, which doesn't work that well for me

Yep, he seems to do everyone's from the same approach - at least everyone I've met when I've been in that's had a VP shunt, unless there's a specific clinical reason for using a different approach. At one point I had a large collection of fluid at the front of my head and he did think he might need to use a slightly different set-up, but fortunately once I'd got a shunt in that was working, the fluid disappeared.

Quote
Poor Celestia is in a similar situation waiting for an op date too and it is the waiting that is the hardest, not knowing when things will progress and your life being on hold in the meantime.

Tell me about it! You can't plan anything, and it just affects your whole life on top of feeling generally  censored anyway. I've been in a weird mood for weeks now - I always get this way when I'm waiting for ops, but at the moment I can't concentrate on anything (even more so than usual) and I've just lost all motivation to do anything, and even though I've got tons of stuff I should be doing, I'm spending hours reading just to get away from it all and escape into another world. The rest of the time I spend PMing Lisa to compare notes on our latest attempts to get any useful information from the hospital.

*sigh* 
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"No matter how hard you try, You're still in prison, If ya born with wings and you never fly."
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