Terrified by having a VP Shunt

[codewarrior_777]

Thank you Sammy. I appreciate it. 

 

I will try my best with the doctors appointment.

[Winb143]

Paul alias Code,

 

Write down what you want to say to him/her as when I go to Doctors I forget, once I wrote down what was worrying me and saw it under

his desk and waited a month for appointment !! lol

 

Good luck

 

Win xx xx

[codewarrior_777]

Yes Win, I have written down questions in my phone. I have a lot of questions.

 

 

I don't know if it affects us after having a SAH, but I'm mostly worried that I would pass out and wouldn't be able to make it to the hospital. I know that it does happen to some people with hydrocephalus.

Edited August 18, 2015 by Skippy
Quote removed - direct answer

[Daffodil]

Hi Paul. Hope your doctor appointment goes well and they answer those questions for you and it brings so,e reassurance.

I used to worry about my shunt equipment a lot too but much less now, I hardly give it much thought unless weather pressure means my head is a bit more swimmy. I think I have learnt to be at ease with it in the three years I have had it but that takes time and gaining confidence that this bit of brain kit is getting on and doing its job.

I did have worry it might fail too but I had to just let that go, what can I do? It is what it is and I just trust that it will continue to work for my lifetime but if I need to have it revised for any reason then I will have to deal with that as best I can but hopefully I won't have to and hopefully neither will you.

The thing that bugged me was I just couldnt get how it was really working , did it drain all the time or only when it hit a peak setting, mine also has a gravitational valve and no one could actually explain the science of what triggered release of pressure properly to me which really annoyed me. So much so I even wrote to the manufacturers....they didn't write back. So I worked it out myself. I know now what it feels like, what its effects are and life is different but my shunt is part of me, who i am. You'll find that with time.

My shunt team though are amazing and always told me that I will know better than anyone if something is amiss so it's highly unlikely that you would not have time to seek help unless you completely ignored things and went off to bed but to be honest you would be having pain so think this is unlikely and also when you are high pressure the last thing you want is to lie down.

 

Trust in your amazing brain kit and if ever in doubt or worried ask and seek help. It's always ok to get checked , they prefer it, that's what I have been told and have done...many times ....

[codewarrior_777]

Daffodil, Thanks for your wonderful comment!

 

It's a strange feeling because on one hand I feel guilty that I survived the SAH so well. I don't have any physical or cognitive problems (I did in the first couple of months but recovered pretty well. I'm 3 months in). At least, not that I'm aware of. On the other hand, I feel so unlucky to end up with a shunt and hydrocephalus. Supposedly this is for a lifetime. 

 

Also, I've seen videos of people who pass out suddenly (maybe the ignored their symptoms?), but it's still scary. The whole unknown part that maybe it could fail. Honestly, I don't think the doctors even know when they put a shunt in a patient how that road is going to be for them. 

 

I want to be strong about it, but right now that is hard for me. I hope the doctors can clear some things up for me. 

 

Thanks for the support.

Edited August 19, 2015 by Tina
Quote removed - direct answer

[Daffodil]

Hey it's not about strength it's about rebuilding your confidence which will have been knocked and maybe letting go of that control that you can stop stuff going wrong. No doctor can promise it will be ok or know the future but you can all hope it does the job it's supposed to do for as long if it's needed. Your ventricles may be Working partially, they may not, but who knows?

 

Either way it's the shunt that's keeping you alive and allowing your brain that recovery so My advice. Understand how it works , arm yourself with the right knowledge and not videos and it may make more sense to you and you will trust it more. But don't beat yourself up, I think it's pretty natural to be fearful considering the SAH and changes in life as you knew it.

Look after youself Paul

[Winb143]

Where did I read that a woman had a shunt in and was 92 when she passed on, was it on here ??

 

My Dad was that age and he never had a shunt or any worries apart from 10 kids,  oh and he outlived 2  wives so he had his worries.

 

Lets hope Doc can put your mind at ease a little.

 

Remember no stress xx but you will !!

 

Good luck

 

Winb143   xx xx

[codewarrior_777]

Hey it's not about strength it's about rebuilding your confidence which will have been knocked and maybe letting go of that control that you can stop stuff going wrong. No doctor can promise it will be ok or know the future but you can all hope it does the job it's supposed to do for as long if it's needed. Your ventricles may be Working partially, they may not, but who knows?

 

Either way it's the shunt that's keeping you alive and allowing your brain that recovery so My advice. Understand how it works , arm yourself with the right knowledge and not videos and it may make more sense to you and you will trust it more. But don't beat yourself up, I think it's pretty natural to be fearful considering the SAH and changes in life as you knew it.

Look after youself Paul

I guess you're right that it could be helping me heal. From what I know, my ventricles are producing CSF but my brain (or veins) isn't absorbing back into my bloodstream.

I think I understand how the shunt works, but they have such a high failure rate is what scares me. I actually can't believe people here are so calm. I'm trying to not worry and I'm taking anti-anxiety meds also and seems to keep me calm while I'm on them.

I appreciate everyone here trying to put my mind at ease.

[codewarrior_777]

Where did I read that a woman had a shunt in and was 92 when she passed on, was it on here ??

 

My Dad was that age and he never had a shunt or any worries apart from 10 kids,  oh and he outlived 2  wives so he had his worries.

 

Lets hope Doc can put your mind at ease a little.

 

Remember no stress xx but you will !!

 

Good luck

 

Winb143   xx xx

Thanks Win for trying to put my mind at ease.

[codewarrior_777]

So, I saw the Doc last week. He basically told me that the shunt was put in because my hydrocephalus wasn't getting better and they didn't want to risk infection. He told me not to worry about the shunt and just live my life, but that's easy for him to say! I really hope to God that he is right, but what if he isn't? My other Doc said that the only way to know is if they opened me up, clamped the shunt and then would see how it would affect me.

 

I feel bad because I didn't ask all the questions I wanted to ask. So, I'm trying to set up another appointment. I'm extremely depressed and have been in bed all week. I don't know why this bothers me so much.

 

I think it's because I know that it's possible that one can pass out from hydrocephalus. From what I've read, you can die too. Am I wrong here? What's the worst that can happen from a shunt malfunction?

[Winb143]

I had hydrocephalus and I was so out of it, and also had ventriculitis  and I was really seriously ill with it.

 

I remember nothing until I had a shunt put in and my daughter said welcome back Mum.

 

Don't be afraid of it as it's helping your brain, not hurting it.

 

I wish you and your shunt well xx and please try not to stress over it. 

 

Before I had a shunt put in I was sleeping and couldn't hold myself upright but slowly now I am getting there.

 

If my shunt packs up which I hope it doesn't I will cross that bridge when it happens xx

 

Now try and smile just a little one and No Stress xx  All will be okay,  less worry less the shunt has to work. 

Take care

Win xx

[codewarrior_777]

I so really don't want to be afraid Win.

So you don't remember anything before they put the shunt in? Do you remember having headaches? I ask because I don't remember them doing the clamp test on me (or being in the hospital for that matter), but my mom said that I got headaches.

You aren't worried if your shunt stops up? I've heard that you can pass out. I'm not sure if that's just some people, but it does happen. It kinda terrifies me.

Anyway, I have 2 doctors appointment this week. This time I want to ask all my questions, as last time I think I kinda froze up. The thing is that the docs have different outlooks on the situation.

 

Also, what is ventriculitis?

And what do you mean seriously ill Win? How so?

[Winb143]

Well Code (I'll call you Code) is that okay?  This is a pretty long post for me !! here goes ..

 

I had ventriculitus, and Sepsis, I got germs which poisoned my blood.  I got over this as I am strong lol.

 

Seriously my family never left me alone as they wanted to make sure I was well looked after, this was over 1 year. 

 

I asked the Surgeon why I got so many germs and he replied "When the brain is open more germs get in and you are prone to anything that is about" ..My words not his.  I can explain it better in my words lol.

 

When the shunt was about to be put in, 1 year later.   my hubby rang the male nurse who's telephone number  he had been given, he said to the Nurse" I am thinking of cancelling the shunt"  and the nurse got onto the Surgeon who rang us back straight away and said "If it was my wife I'd  let her have a shunt put in".  So we went ahead and now I can remember things instead of being in a dream world seeing Family who had passed on. 

 

The year I was ill I remember nothing (thank goodness)  just bits and what I was told.  But a shunt woke me up the next day I was singing to a nurse.  So don't be scared of shunt it's helping your brain to get better xx  

 

Good luck Code

 

Your shunt pal Win xx

[Super Mario]

Codewarrior, forgive me if this seems harsh but where would you be without the shunt? In a dreadful situation. The shunt keeps the fluid pressure at normal levels.

Isn't it preferable to have the shunt and accept it so that it keeps the pressure normal.

 

The internet is a wonderful thing but too much research can give out loads of negative information, so stop searching about blocked shunts. It is like reviews, some folk often only tend to do them if there is something negative to report, therefore you only hear the bad, rather than the good.

Shunts are more likely to block in children rather than adults and this is probably the age group you are reading about.

 

I can understand your worry as I think all us shunt folk have worried  and thought "what if" when we initially had one fitted, but we have all learned to accept it and get on with life forgetting it is there. None of us on this site, past and present members, to my knowledge, have ever had a problem with a blockage. 

 

Please do not take this the wrong way, but you seem to have a fixation about your shunt failing. You have spoken to the medics who have reassured you but you still can't accept that you will be alright. Maybe the time has come to ask for some sort of counselling to help you come to terms with the fact you have a shunt and that it is very unlikely to fail.

 

I am sorry that this may sound to you very harsh, if you find it upsets you then please accept my apologies.

[Macca]

Paul,

 

Don't worry, my daughter in law has a shunt and has had it since she was little.  She's 32 now and hasn't had a problem.  The only thing she had to undergo was a replacement procedure because she had out grown the small one they fitted as a child, as she turned into an adult and she needed a larger one.

 

Yes ask your doctor questions, but don't let it rule your life.  It is in place to help you get on with life not to hinder it.  Get out there and enjoy things.

 

Good luck,

 

Macca

[Daffodil]

Hi. I'm glad you are seeing your doctors again, speak to them , tell them your worries and listen to their reassurance. As Super Mario said I'm sure everyone who relies on mechanics like we do to stay alive worries about the reliability of it but you have to start somewhere and each day you will build up your trust in this amazing device. I know I have.

All I can tell you is that as someone who needed to have a shunt put in some months on from my initial lengthy stay and the Extra ventricular drain that was placed post SAH is that I had time to seek treatment when I knew something was wrong and I knew it. my concentration and recovery nosedived, my balance was off and I had dizziness and nausea and increased pain.

 

I had time to go to my GP who agreed that I probably was seeing a repccurance of hydrocephalus , I got a scan locally, got an ambulance transfer to my neuro hospital and despite having very high pressure. as shown by my scans even then It was deemed I was able to wait another 24 hr before I had my first of a few lumber punctures

Each time after an LP we waited ( uncomfortably and painfully I'm not going to lie) to see whether my ventricles would work more efficiently . They didn't ( apparently the procedure can sometimes kickstart it ) so I had a shunt put in. It wasn't an easy decision , I had to make it, not my family, me, but I would choose it again in a heartbeat.

No one can tell me if my ventricles will recover but I am reassured that my shunt is there, keeping me balanced , keeping my brain well and it will allow you to recover from your bleed and go on and find your new normal. It won't be the same but you have a fabulous opportunity, don't waste it worrying over something which you have no control over. Talk to someone about your worries, counselling will help.

Trust me the discomfort from going high pressure is something you would know about but Bottom line is if you ever think the shunt isn't working as it should for you based on your feelings then GO GET CHECKED OUT. They will not mind in the least.

[codewarrior_777]

Win

 

Wow, that sounds pretty bad Win. So you go an infection when they opened your head for surgery? 

 

 

I know what you mean about not remembering. I wish I could remember when they were doing the clamp test that way I would know how it feels when the pressure was high. I don't remember a thing though. My mom said I got headaches, that's all I know.

 

I know the shunt is helping me now, but I'm afraid of when it will fail and what I will do then. It's the not knowing that drives me crazy. Not knowing if my brain is working again. Not knowing if the shunt is going to fail. I wish I could know one way or another instead of just waiting until it fails. 

 

From what I've gathered, the consensus is that shunts fail eventually. They are not a cure. It's a device. A part like in a car. 

[codewarrior_777]

Super Mario

 

Yes, I am having a hard time accepting it. I know the shunt is helping me now. I do know that, but I'm afraid for the future. I'm 37 now. I just think that it is really unlikely that this shunt will last all my life. 

 

 

I understand what you are saying, and believe me I've considered it all. I'm not really looking for stories on blocked shunts, but unfortunately it's what I'm finding. It's not all I'm finding, by the way, but I'm finding a lot of those stories. I know children do have more problems with shunts because of their growth, but plenty of adults still have shunt problems.

 

I'm trying to research more about people with shunts who've had a brain bleed, instead of congenital hydrocephalus. Maybe there is a difference? But I'm finding the information hard to come by, except this site. So far the info on this site is good and gives me hope as no one here seems to be having problems, but it's still such a small sample of people. 

 

For me, I don't remember them putting the shunt in. I don't remember being in the hospital at all. All I know is that I was home and my memory came back and found out about the bleed and the shunt. I think I just recovered for the first few months, but now I'm realizing more about the shunt now. 

 

I've spoken to two doctors and both had a different take on it. The first doctor I asked him point blank if my shunt could fail and he said yes. He was more matter of fact. The second doctor basically told me to forget about the shunt and live my life. He also said that he thinks that my brain needed some extra time to heal and could be fine now, but they had to close me up because of infection.

 

But unfortunately there is no way to know. And this is what drives me crazy. I can't get a definite answer about my brain health. Both doctors just say if I get a headache to come back, but I think a shunt failure is more than just a headache?

 

The thing is is that most shunts do fail. I think that's just a fact. Even doctors will tell you that. My main concern is that what will happen then? Maybe it won't be as bad as I think it will be, but on the other hand I know that hydrocephalus is potentially fatal. It's this not knowing and it really scares me. 

 

Don't worry, I don't think you are being harsh. I need to hear it. I'm seeing two doctors this week, so I'll see then.

[codewarrior_777]

Macca 

Thanks for the encouragement. I'm trying to not let it rule my life, but right now it's winning. Maybe I just need more time. 

[codewarrior_777]

Daffodil

Yes, I have two appointments this week. One with my GP and one Neuro. The last few weeks I've just been super depressed and my parents think I need something other than anti-anxiety meds. Probably anti-depressives, which I've never taken and not too keen on taking. I've mostly just been in bed and that's not something I've ever done before.

 

 

Maybe my GP can recommend counselling too, but the counseling at my hospital is awful. I've had it before a couple of years ago for something unrelated and was not good or helpful. The hospital is one of the best for trauma, if not the best, but not so much for counselling. 

 

That's kind of reassuring knowing that you had time react. From all these shunt malfunction stories, they sound so dramatic. I know that high pressure is bad for the brain though. Do you have memory issues? Headaches still?

 

Honestly, I think that my main worry is that my shunt will fail and I will die. 

 

I know it's helping me now, but for how long? I'm 37 now. I just don't think it's really feasible that it will last until the end of my lifetime. I'm not even sure if it's good if it stays in my body for that long. Doesn't it start to break down?

 

I'm trying to find my new normal, but just having a hard time with this. I appreciate your sweet comment. I really hope you are right when you say that I'll have time. This is a good question for my doctor in fact.

[Super Mario]

Codewarrier, depression can be experienced in the aftermath of a SAH, possibly that is what you have and your parents are right.

Depression could be the cause of you looking on the black side regarding the shunt.

 

I lost about 3 months of my life, no memories whatsoever and only vague memories for months after discharge. I didn't even know about the shunt until months after, although I kept asking what the lump at the back of my head was. Can't remember having it inserted.

The only information I gleaned was what my hubby told me.

 

As to the shunt breaking down, see what Macca said about his DIL, changed as a child because of her growing, but the last one is still functioning after goodness knows how many years.

 

You need to ask the medics about that for reassurance.

 

It comes over to me that you are afraid of death, many people are, only natural for lots. Me, I couldn't care less, it comes to us all eventually, young or old. I live with the fact I won't have a lengthy life due to other problems but I enjoy my life to the full whilst I am here. There is no point of worrying about the inevitable. At the end of the day you could go out and be run over by a bus, do you worry about that? I guess not. Nobody can forecast what their lifespan will be.

 

You are only 37, you are still here and many after a SAH aren't. You are one of the lucky ones, you survived. You have a life so please try to put the SAH and the fact you have a shunt behind you and live your life as you would have done before the SAH to the best of your ability.

[Louise]

I'm afraid I'm with Super there where would you be without the Shunt, and yes your just getting yourself into a state I think you should just accept what has happened and yes its harsh when they say get on with living your life (my consultant said that and I know others on here have said that also)...

 

And again Super is quite correct sometimes the Internet is 'not' your friend sometimes having too much information isn't a good thing..

 

Yep worried for a long time about it, but it begins to eat at you and hey after what you've been through life is too short...

 

Yes maybe its time to look at councelling to get professional help in coming to terms with what's happened to you, as I have said I did find it hard in the beginning with 'what if' but been 15.5 years now as time goes by it lessons.

 

As for you appointments write your questions down you want  to ask.

There are others out there who haven't survived you are indeed one of the lucky ones..  Enjoy life...

[Winb143]

Code,

 

You will get used to the shunt and you will say to yourself ..'Come on you get your act together I am here and alive'  and then you'll hear me singing and go ' Can I join in Win with you and Carolyn'  So get some good songs you like and Carolyn will help us sing them.!!

 

You think the shunt is bad, wait until we start singing and you have to join in with us, now be of good cheer and if I have had mine in

5 years and Louise 16 was it?  and a woman of 92 had hers still working etc. etc.

 

Now live a long happy and healthy life and remember the smile xx

 

Good luck

 

Win xx xx See you in Green room later when you feel like a song xx  No rush, just when you feel like it

[Louise]

I was only 3years older than you when I got mine put in.  No it doesn't start to break down I think you should stop reading stuff about it we're now in the 21st century science has come on

 

Win it'll be 16 start of November.

 

I haven't given it a thought for years but this is just showing me how far I have come to terms with it, if it weren't for the shunt I wouldn't be here doing this.

[Carolynusa]

Hey Code!  You and I are a couple of the only USA people here. (Illinois) We've got it going on!  We're cool.  We're far out!  So....you have to stick around and prop me up in here.  Especially with that Win woman...she keeps stealing my chocs.  Oh...by the way, you might want to show Win a little about roping...I don't think it's working out for her very well.  

 

So...I read your posts and I can instantly feel how frightened and depressed you are about your shunt.  You break my heart that you so strongly feel those things.  Probably told you before but not much stops me from repeating myself.  Lol.  I'm a little over a year into my SAH.  Just popped up on me early one morning.  I missed it, thank God!  Guess I missed it for at least a month afterwards and am pretty glad for that.

 

 I had a bleed and they found 3 more aneurysms (I know yours was different but bear with me).  They ran a coil up through my femur and stopped the bleeding.  Then they decided to "clip" the other 3 so had to open up my head to do that.  Then they put a jar on the floor and my husband was appalled to find out they were checking to see how much fluid was draining.  They didn't really like looking at that!  lol

 

So...in went the shunt.  About 5 weeks later I woke up and eventually was allowed to see myself in mirror.  Head shaved.  Giant scar where they sawed my head open (by the way...none of these last few things has anything to do with shunt...I'm getting there) and a weird hump on top of my head.  I looked GREAT! jk  I had no idea what any of this stuff was about until maybe 3 weeks later.  The shunt mystified me the most.  How odd to have some kind of hardware popped into my head.  oops...forgot...I also have a couple of metal plates up there somewhere.  I think I was more fascinated by my haircut than finding out about the other things.

 

So.....come home I did.  (Yoda speak) The shunt bothered me for a while as it was sore.  I had a little trouble with my pillow pressing on it.  It's SO much better now!  If I poke around on it I will feel it there so have learned not to poke around - lol.  But...it really is so much better.  Most all of what I went through in hospital is much better.   

 

I don't really worry about my shunt anymore.  It's up there draining you-know-what out of my head.  I trust my surgeon and doctors who followed when they tell me not to worry.  I DID worry for a while though.  I believe several doctors and my surgeon told me I would know if something was going on with the shunt as I would probably get a headache or maybe dizzy.  

 

I would be SO happy if you could just bring the fixation/terror down a notch at a time.  See that you will most likely feel better and better every day.  There will come a day when you will realize you have almost forgotten you have a shunt.  You seem so smart and like a very neat guy.  You're young (to me..and especially to Win - lol).  I hate to know that you are out there in the tumbleweeds waiting for the shunt to fail.  

 

I agree with others when they say it's not always great to research the h... out of the internet.  It can often be so gloomy.  People always love to share their gloom.  Don't buy into it.  Think as positive as you can.  Talk here and see how other Shunter's feel.  Please don't panic.  You are a great guy and are smart enough to work through this.

 

Keep it up Code.  Step by step.  If you are worried or scared see a doctor.  Keep asking your questions until you feel you are understood.  Next time I talk to you I would like to hear you singing "Amarillo by Morning" and feeling better about your health, etc. 

 

Much love and concern for you - inch by inch Code

Caroyn