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.

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. 

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.

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. 

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?

Hello Tracie,

I know how you feel and had a lot of questions when I realized all that happened ( I don't remember being in the hospital for 2.5 weeks). 

I would highly suggest writing down all your questions for when you see your doctor as others have suggested.

You are still early in your recovery. I feel the same, mine was at the end of April this year.

- Paul

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?

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.

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.

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.

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.

Thank you Sammy. I appreciate it. 

I will try my best with the doctors appointment.

Thanks Win!

It does make me feel a little bit better that no one here has had issues.

I've only read stories about people that have and it's a bit scary.

And I'm seeing a doctor next week and will speak to him about my worries.

Me neither. If it's blocked, I would assume that there's a problem and a doctor would have to fix it.

I don't have memory of being in the hospital, even though I was conscious  and speaking, but I think I did have an EVD. I have a small dent on my skull, but it is also close to where my shunt goes into my brain so I'm not sure if the dent is from the shunt surgery.

Sorry Paul, I don't think anyone can tell you here what it's like if it fails but things to watch out I was told for are increased drowsiness, loss of cognitive function and change in sensations. Shine has good information on that and others things.

Because I went a couple of months before having to have the shunt I got to experience what low pressure CSF and high pressure are like for me with lumber pictures to drain off moving me between states but everyone is different. Main thing is if you are worried ever go get checked. I did lots of number of times in the first year, they checked it wasn't blocked and I also had my setting changed to suit me better.It was a while though before I trusted in it. That takes time.

Shunts can block, yes they can fail , you can get infection but all that is unusual and normally shows very quickly so don't let this rule your thoughts. Get better informed from the doctors and then just be vigilant to any change and start to get better and find your new normal.

An EVD ?, my mistake. Is a extra ventricular drain surgeons place for some people post bleed. A pipe basically draining off fluid to stop pressure build up. Usually it restarts the ventricles , it sort of did for mine for a while but not enough to work properly so hello shunt.

Thanks for your info. 

I read on the Shine site that a shunt blockage must be dealt with within 4 hours. I'm not sure what that means, but sounds like an emergency.

Oh, I think I had an EVD too. I know they had to drain the blood. 

I was told that shunts in children are more likely to block than those in adults but please ask your doctor about it.

I have had mine for nearly 12 years now and never had a problem.

Good to know!

I'll ask my doctor next week.

Louise,What I mean is that do you think that you CSF started working properly again? That you don't have hydrocephalus anymore. I asked because the Doctors said that it's possible.

I'm not sure if I have to clean mine out. My shunt is not programmable. 

Hi Paul

 

I have a shunt it'll be 16years at start of November I understand your concerns but don't think there's anything to worry about.

 

It's part of who I am now and life...

Whoa, 16 years! Glad it's lasted so long for you. 

Do you ever wonder if your brain started working again?

I have a shunt and apart from it waking me up after a year and not being able to hold myself upright. to me it was a lifesaver.

Good Luck

WinB143 xx xx

I was told that sleepiness can be a symptom. As well as headaches and nausea.

I was hoping I could speak with someone who has had theirs fail, and what it feels like.

Thanks for your response.

Hey code warrior. Cool name by the way. Welcome to the shunt club and yes I can understand your concerns.

I had to have my shunt placed a number of months on from my lengthy stay in hospital for the SAH when it was apparent that my ventricles weren't healing as they had hoped after the EVD .....

Good luck. Baby steps.

What is an EVD?

Yeah, I'm just worried about what happens or how it feels if the shunt malfunctions. I know I need to stay positive, but I feel like I need to know. I'm going to visit the doctor next week, so I will ask him some questions. The thing is I'd rather know what it feels like for a shunt to fail from someone who has a shunt than from a doctor.

I don't know. I'm just worried about it. I know I need it though (although the Docs told my parents that it's possible that my brain can restore itself).

If it really starts bothering you though you need to have it checked. This will ease you fear. By the way...I was so worried about the line that goes to my abdomen that I nagged the doc until they ex-rayed and proved to me that it wasn't pinched anywhere and that it was working fine. Don't feel bad about asking questions. Glad you came here - it's a very nice place to be if you have questions or even if you want to join Green Room conversation. It helps.

Best of luck to you

Carolyn H

Yes, I'm still in the stage where it bugs me. I guess my question is I'd like to know from someone whose had problems with their shunt how it feels when it stops working. It does creep me out.

Hi Paul,

 

Welcome to BTG.  A lot of us seem to be able to remember the events leading up to the SAH, but not immediately after and we all seem to rely on what others tell us we did.

 

In my own case, I said some really stupid things.   In hospital, they asked me if I knew where I was and I said "Matalan" (That's a clothing store), they also asked me if I knew who was our Prime Minister and I said "Diane", I don't even know anyone by that name.  Really, that's not important, unless it persists, but thankfully it didn't and I made a good recovery.  I suppose it's only natural that when your brain goes through such a trauma, that it will take time to recover.  The big question is 'to what extent will it recover?

 

All of us it seems will have a different answer to that question but we owe it to ourselves, those that care for us and those that saved us to make the best of what we've got.

 

So try to draw a line under the event and move forwards from it as best you can and enjoy your 'second chance' at life.

 

It's not always easy, but over time I'm sure you'll get better to one degree or another and bad memories won't be erased but they'll fade over time.

 

Good luck, and let us know how you get on!

 

Macca

Thanks for the encouragement Macca!

Thanks everyone for the warm welcome!

I look forward to the wealth of information on this site. 

Karen,

Thank you for starting this great community and although I'm new here, I still want to say thanks.

- Paul

3 months ago I was at the gym when I had my SAH. I don't remember much being in the hospital for 2 1/2 weeks, but I remember having the SAH. I didn't have an aneurysm though. It just bled, as I was told by my doctor, from the base of my brain.

My recovery has been pretty good, but unfortunately I did have to have a shunt put in. To be honest, this pretty much terrifies me if the shunt malfunctions. Maybe I'm overreacting, but what happens to one when the shunt malfunctions? Will I have enough time to get to the hospital?

I've looked into getting a Endoscopic Third Ventriculostomy. I'm going to an appointment next week and going to ask the doctor if I'm a candidate for that surgery. 

Anyway, does having a shunt terrify anyone else here other than me?

Paul.