Terrified by having a VP Shunt

[codewarrior_777]

Super Mario

Yes, I'm severely depressed most days. The anti-anxiety meds help a little with the depression, but lately just making me sleep more.

I'm like you that I don't have any memory. Not three months though, more like 3 weeks lost. 

 

Yes, you're right. I am afraid of death. Ultimately, that's what I'm afraid of. What has your doc said about your shunt failing? What to look out for? I suppose I could feel better about the situation if I know that a shunt failure won't equal dying. I think I could deal with another surgery if needed. 

 

I know I need to be thankful that I'm here and alive. And I am, or was at least. I don't think I can just forget about the shunt though. I feel I need to be aware if anything goes wrong. 

[codewarrior_777]

Louise

Yes, I know. I'm trying, but right now it's winning. 

So you were worried about your shunt too? Yes, it is eating at me so bad. The fact that nothing can really be done until the shunt fails is just awful to me. I really hope that my brain has healed or is healing. I wish I could know one way or another. 

 

Yes, I have a lot of questions to ask this time and WILL ask them and not freeze up. 

[jess]

Hi there please go and see a counsellor as this shunt business is really getting to you xxx

I don't have a shunt but I did have a temporary one in hospital I was really fascinated by it, anyway you can spend the next 20yrs worrying about your shunt and not living life and feeling miserable (and regretting the wasted years) or you can be grateful and happy to be here and live each day and enjoy life and forget about the shunt xxx

I know easier said than done but only you can get through it and live your life we can only offer comforting words xxx

Good luck hope things improve for you soon xxx

[Super Mario]

Codewarrier, please seek counselling for your fear.

You said that you have had it before for an unrelated matter and it was no good. This will possibly be a different type of counselling and not the same counsellor. You can't judge until you try.

You have this irrational fear that has taken over your life and you really need the help to come to terms with it.

 

Please request it and give it a go.

[Macca]

Hi Paul,

 

You mentioned earlier that you thought the shunt was like a replacement part in a car.  So think logically.  If you expand that and think of your body as a car - it came with a lot of parts, heart, lungs, liver, kidneys, eyes, ears and so on.

 

Over time some of those things fail - ie your eyes get worse with age - so you get glasses, your hearing gets worse so you get a hearing aid,  even heart, lungs, liver they can replace these days, you have a SAH, you get a shunt! It's more likely that another part will go wrong before the shunt does, so it doesn't really make sense to just focus on that.

 

In all these cases, the car is repairable and is not a write off. Neither are you!

 

Now with your shunt you will be able to do pretty much what you did before, in some cases better or differently.  You are a young man - yes you've had a jolt, life has made you think about things differently than you did before and probably before you wanted to - but you know what - you've now got something many others don't have and that's experience and knowledge that you can use to help better your own life and those of others who don't have your experience. Some people go a lifetime and never get that!

 

So turn what you see as a negative into a positive - lots of people on this site have shunts and they're still going strong - so will you. Life is full of opportunities - if only you look for them.

 

You are an intelligent guy and sometimes that makes you think too deeply and that can make you dwell on things.  If you start to get out there and make yourself active, that will distract you from thinking about shunts, improve your confidence and over time your belief in yourself will come back.  Your brain is working Paul, just look back at your posts - they are thoughtful and rational and detailed.

 

All they lack is a little positivity and that's natural after a SAH.  It takes some time, though, as all recoveries do and if you read some of the threads in this forum you will realise that.  You're just on a 'time-out' right now.  So don't be hard on yourself, don't beat yourself up, if you fall off your horse you get up again and get right back on it, don't you?

 

You are a survivor Paul, you have youth and strength on your side - that's something some of us don't have.  So use it wisely and embellish your life with the love and support of those around you to a level where you reward them for their unconditional support for you by becoming well again. Remember that saying - it's not what my country can do for me - but what I can do for my country!  if you substitute the word family for country, you'll get where I'm coming from!

 

You're doing wonderfully well Paul.  I mentioned a quote by Winston Churchill (Our World War Two Prime Minister)  on another thread the other day.

 

He said "When you're going through Hell, keep going!"

 

In other words, when times are tough, if you keep going, better times will return - that's you Paul - you'll be just fine!

 

Good luck Paul - stay in touch! I wish you well!

 

Macca

[Louise]

No wasn't worried its my shunt that keeps me alive without it I'm not here, so once I got used to that fact now it just seems silly so I've come a long way..

 

And NO you cant judge until you try, so go on give it a try start putting your fears to rest and getting on with life - gee If I can do it anyone can believe me...

[codewarrior_777]

Thanks Macca.

 

This post really hit the nail on the head. You're right about so many things and on so many levels as well.

 

You're so right that this experience really made me think of things a lot earlier than I wanted to. I struggle with that. I struggle with the fact that I'm now limited as I used to travel. Now, I can only travel to places where I know there is a good neuro hospital nearby if my shunt malfunctions. I'm just not the same person anymore and it's hard realizing that.

 

You know, I probably have thought too deeply about it. That's maybe a weakness, but then maybe also a strength. I want to know everything about the shunt that way if it does fail I will be prepared to survive it. Thats why I'm asking so many questions. Unfortunately, that info is hard to find. Also, the aftercare for SAH patients at my hospital is kinda ###### if I'm honest. 

 

Anyway, you are probably right that I should be happy that I survived and to keep marching on. I'm gonna try.

[codewarrior_777]

Hi Carolyn, 

 

Thanks for writing. Yeah, still down about the shunt. I really wish I didn't have it, so now just trying to cope. 

 

Maybe this week my docs can ease my worries a bit. I guess I just want to know everything about it. 

 

So you're docs say that you would get a headache if somethings wrong with the shunt? What else did they say? To me, I feel like I should be more prepared than that or that the docs could give more info because they tell me the same thing that I would get a headache.

 

If the shunt does fail, then that's a pretty serious problem and I'd like to be more prepared or be given more detailed advice about what to look out for. I don't know, but I feel like I need more. I've been trying to get in touch with people who've gone through a shunt failure and the people I have, it was more than just a headache. They had to be rushed to the ER. 

 

I hope that doesn't happen to any of us here, but I want to be prepared for the worst because I'd like to survive it.

 

Anyway, I'm seeing two docs this week so we'll see how it goes.

[Super Mario]

Codewarrier, , you say you only travel to where you know there is a neuro hospital.

I too, love travelling, I go on my own abroad, several times a year, often to tiny islands where there is only one clinic, no neuro back up, and to get you off the island it is by ambulance boat.

I never give shunt failure a second thought. My attitude is "what will be, will be". We can't alter what life holds for us so you really ought to try and live your life to the full the best you can.

 

I was left disabled by the SAH as well as having the shunt, but that doesn't stop me enjoying life to the best of my ability.

In fact, I grasp every opportunity that comes my way and take full advantage of it.

 

We survived, make the most of it and don't waste energy on worry.

[Macca]

Paul,

 

Print these posts off and show them to your doctors.  They will explain better than you will on the day what your fears really are and they will be better able to help you.

 

You said above "That's maybe a weakness, but then maybe also a strength."  That's your first positive - maybe you are turning the corner now after all!

 

Five years ago today I had a SAH.  I survived - so will you!

 

I'll give you another Winston Churchill quote, and one which should resonate with you.  He said "It is not the beginning of the end, but it is, perhaps, the end of the beginning."

 

Your new phase of life is to accept the shunt , let it do its job whilst you get on with yours - enjoying and making the most of your life. 

 

Best wishes

 

Macca

[Louise]

Well said Macca...

 

Onward and forward move on with life don't let it consume you move on...

[Sammy Anne]

Hi Paul,

 

Believe me, once you start really feeling better physically you will be pulled (without even realising it) back into your life as it was and you'll realise there are moments, increasingly long ones, where you forget what's happened, you forget your fears, you start taking the future for granted again.... and this despite any ongoing pain and discomfort.

 

Really really. It's all about survival, one has to believe in it to go on, survival is all consuming, normality will return, living won't have to feel like a struggle (unless one tries something crazy like bunjee jumping !!), one day all this will be a vague memory, time really does heal. I'm a great believer in positive mental attitude as a major part of recovery.

 

PMA will be one of your greatest allies as soon as you start feeling physically well again ... you are not completely out of your SAH terrors probably because there is some pain lingering and the fear of the shunt failing, but once the pain has subsided or gone and the shunt is performing as it should, you'll forget it's there and you'll start living again without fear.

 

Never forget, you're the boss and your body is listening!!

 

Take care,

 

Sam

[subzero]

Hello Paul

 

A belated welcome to BTG- I am a Carer-my wife had a SAH May 2011.

 

You have already had so much great guidance from BTG members about how to approach your fear of your shunt malfunctioning-

 

I have met some amazing friends on this site who are not only coping with their own battles with SAH but are incredibly finding time to help others like your self who are looking for help- I am amazed that Karen managed to get this site off the ground while at the very early stages of her own recovery-  When I joined this site eight months ago - a struggling Carer- knowing there are others around shares the load.

 

What I am saying is- hopefully as you read different threads within BTG you will begin to realise that you are not alone and that there are many who are struggling everyday with different recovery issues. Not only that-they have partners-husbands-relatives who are undergoing serious health issues too- and as you get to know them you will find that your own circumstances while still serious- will be put into some perspective and perhaps this will begin to give you some solace re your own situation.

 

The main thing is- keep on going and believe things will improve for you

 

Hope you do look into the Green Room now and again- 

 

Subs

[Colleen]

Hello CW

 

I have been reading your posts since you came to this site and truly hope you are finding some solace and encouragement from the responses of these folks. Collectively, we have experienced the full range of emotions. While I do not have a shunt and cannot know what that feels like, I can tell you the SAH alone commonly invokes a terror of death every time something feels a bit weird.

 

I was told by my interventional radiologist at the time that PTSD was not uncommon. I have also learned that the part of your brain that was affected by the bleed can also cause heightened fear response. I don't know where you are in Texas, but I can tell you there is excellent neuro care available in this state.

 

I did have a co-worker who had a shunt implanted by a neurosurgeon here and it did take some time for the adjustment. She has gone on to have two babies. Prior to the shunt, she was passing out from the fluid imbalance and would not have much of a life without the correction.

 

I sincerely pray that you can find the help you need to come to terms with the changes the SAH has wrought. It does take time. Eventually you will be able to move about more confidently. In the meantime, we are here.

[Gemma B-B]

Hello Paul,

 

I am 28 and I had my NASAH in January this year. Like you I developed hydrocephalus afterwards and had a shunt fitted in February. I have no real memory of any of that time and it wasn't until round March that I started to form memories and think about the implications of everything that had happened.

 

I also had questions about what would happen in my shunt failed - I live in a rural part of the UK and am around 35mins from the nearest hospital and 50mins from one with a neuro-centre so wanted to know what I should do if it failed.

 

I went back to see my neuro-surgeon at the start of June and they were very reassuring. They said that if the shunt started to fail I would start to get symptoms such as the confusion/balance issues etc that I had in the hospital. They described it as being quite a gradual process as it would take a while for the fluid to build up again. They also said that I would be the first to notice that something was off. I would then need to go to the nearest hospital and then be transferred to one with a neuro-centre to have it repaired or replaced.

 

I know you are also concerned that you would collapse and therefore not get to a hospital. I also have a heart condition and wear a medical ID bracelet that has this and the fact I have a shunt on it. I also have a medical alert card with the information on. You could consider getting those sorts of things too in case of an emergency.

 

As others on here have said I would definitely recommend speaking to your doctors about your concerns. They should monitor the shunt anyway and check everything is in order. Seeking counselling or something similar may also help with the anxiety.

 

I know there are a lot of stories out there about shunts failing and I understand that it may not last a life-time, however as others have said on here I think it is a matter of making sure you seek treatment if you are concerned about it in any way.

 

I hope your meetings with your doctors goes well.

 

Gemma

[codewarrior_777]

Thank you Sammy Anne. I suppose you're right. Survival may just take over. I'm not there yet, but I'm trying. 

 

Some people want me to get there faster, but I think I can only get there when I can. I know I have to have a positive mental attitude. It's just been so hard lately. 

 

I appreciate your comment.

[codewarrior_777]

Yes, SubZero. Honestly, I do feel somewhat bad reaching out about my issue knowing that there are others struggling more than I. However, I felt the need to because I just didn't want to remain quiet and ignore it either. I'm a bit torn about it. Hopefully, I can gain some perspective from this site.

 

I definitely appreciate everyone who has reached out and it's helped. I'm just the kind of person that needs to know everything I suppose. I want to know other's experience so I can compare to mine, cause really coming home from the hospital I felt so alone with my questions.

[codewarrior_777]

Hello Colleen, fellow Texan, 

 

I'm from San Antonio. 

 

Yes, a SAH does invoke fear. Especially in the beginning for me. I was really self conscious about it, but now I think it's subsided. 

 

I'm trying to find solace in what others are saying and happy that people here reached out. I felt like I was so alone with this. 

 

I'm not sure I have PTSD, but definitely depression. I'm trying really hard to overcome it. Unfortunately, the medication my doctor prescribed is really too strong for me. I'm going to give it another try tomorrow, but if not I'll just have to stick to the anti-anxiety meds. And time. 

 

Yes, I know the neuro care I got was really good, or so I was told, because I don't remember a thing. The aftercare is something to be desired though. I feel so left in the dark in the aftermath. 

 

So your co-worker friend was passing out prior to her shunt being place? Was it serious? This is actually what scares me about the whole shunt thing. Passing out and not being able to make it to the hospital. I'm glad you're friend is doing better now.

 

Thanks so much for your comment.

[codewarrior_777]

HI Gemma,

 

I too had an NASAH in April this year. 

 

I know what you mean about finally realizing all the implications of what happened. At first, I was just recovering and that took a couple of months, but after that I realized about the shunt and all. 

 

Your doctors sound good. That's reassuring to me that you say that it would take some time for the fluid to build up. Although I have heard stories of people passing out.

 

You're right, maybe I should get a bracelet. I've heard about them before. I should look into it.

 

Unfortunately, my doctors appointment didn't go so well today. He didn't want to hear about my shunt issues and cut the meeting short. I guess because he said he's not the person to ask. But he did have an opinion! My primary doctor yesterday said he didn't think I had hydrocephalus anymore because I don't have headaches. I want to believe him, but my neurosurgeon said the only way to know would be by a surgery of clamping my shunt and seeing if the hydrocephalus returns. That's what kills me about this whole thing. That I can't know.

 

I think they should be monitoring my shunt as well, but mine is not programmable, so it's really only a waiting game. Basically, my doctors say to come back if I have a headache. That's it. 

 

You're right. All in all, I just want to educate myself about this device so I can be prepared to seek treatment. I want to know everything that can possibly go wrong.

[subzero]

Hello Paul

 

Thanks for taking the time to reply to everyone-

 

Your journey of recovery is unique to you - as many have said-everyone is different-

 

You have made a good decision to share your thoughts and fears on BTG- and you can tell from the interest shown in your posts, that people genuinely care for your situation and want to help in some way. You are not alone. Also it could well be the case that others visiting BTG may have similar thoughts to your own and they have/will be helped by all that has been posted on your thread.

 

You mentioned earlier that you enjoyed travel. What other interests do you have?

 

Hope you do have a good day today and in the days to come-

 

Subs

[Winb143]

To be honest Code,

 

When I found out what happened to me I was so scared and thought I must be near the end of my life and I wasn't as scared but I was always thinking about it, it's a natural thing to do.

 

But to be honest coming on here and discussing my fears then having a joke with some others, it made me feel happy again and it isn't the end of the world what happened to us. 

 

I look upon it as a 2nd chance to say to loved ones how much I love them etc and be overly sloppy lol .   So tell your Mum and Family how lucky you feel about being alive and give them a hug, It wasn't our time so we should live each moment as it comes.

 

I wish you peace and Love

 

Now go out there and live or else I'll sing a song and ruin your Day lol  xx

 

Winb143 xx alias Win  xxx

 

Good luck on recovery xx

[Louise]

We all cope deal with this in our own way what's right for us, I think you've had some great responses and you seem to take them onboard, sorry if we're wanting you to get there faster apologies if I'm one of them for me I was so consumed by the fact my shunt would move it ate at me (same as what I'm thinking your doing) its not a good place to be take that from someone who's been there done that...

 

Sorry to read that the doctors appointment didn't go too well, again personally finding out if you still have hydrocephalus v's a shunt well has to be the latter I'm afraid, when you go for your check-up though you'll find out how things are going well that's what seems to happen with everyone scans or angios whatever..

 

As I said earlier mines not programmable either, they work and thank god they do, I'm guessing that if god forbid something happened you'd know it is just a case of as time passes by you get to know and understand what is and isn't right and old saying time is a healer and through life I stongly believe that...

 

Subs: for  me the posts have proven to me just how far I have come time has healed any hang ups I had in those early days...

[Gemma B-B]

Hi Paul,

 

I am sorry to hear your doctors appointment did not go well. It is very frustrating when things like that happen so you have my sympathy.

 

It is difficult when you don't know if you have the hydrocephalus or not any more. I have had my 6-month follow up MRI and was told that I do still have hydrocephalus, however I do not get headaches a lot of the time. I think this is because the shunt is working correctly. I tend to only get them if I have overdone it or if their is a lot of pressure in the atmosphere (which is very odd!). I know it is difficult when you don't know but you can be reassured that if you do still have it that your shunt is working at compensating for it.  

 

I agree with you on educating yourself about the SAH and hydrocephalus - I personally always think it is better to be informed and then you can make decisions based upon that. I have been very fortunate to have undertaken rehab in two places - first in the hospital where I was treated in London, which was a support group for people who have had SAH that ran for 6 weeks, and secondly I attend a brain injury charity locally where I have individual physiotherapy and occupational therapy (I had quiet a severe bleed and have been left with some movement and cognitive issues). They have helped me understand what has happened and what signs to look out for.  

 

I also definitely recommend getting a medical alert bracelet or shunt-alert card. It gives you that extra reassurance in case you aren't able to communicate what is wrong with you.

 

Take care

Gemma

[codewarrior_777]

It is difficult when you don't know if you have the hydrocephalus or not any more. I have had my 6-month follow up MRI and was told that I do still have hydrocephalus, however I do not get headaches a lot of the time. I think this is because the shunt is working correctly. I tend to only get them if I have overdone it or if their is a lot of pressure in the atmosphere (which is very odd!). I know it is difficult when you don't know but you can be reassured that if you do still have it that your shunt is working at compensating for it.  

 

I didn't know that an MRI can diagnose hydrocephalus? 

 

I was told by my doc that the way to check was to do a surgery and clamp my shunt. Similar to when they had an EVD in me when I was in ICU. 

 

Has anyone else heard of this or any other methods for checking for hydro?

[Colleen]

Hey Paul,

I am outside of Houston and was blessed to be Life-flighted there when I had the SAH. There were lots of angels that day and my husband was counseled to send me to one of the best neuro teams ever, imo. So the Drs I have had are associated with the Mischer Institute and Memorial Hermann. I still go for a yearly CT scan that my neurosurgeon reviews, but I haven't actually seen him for a couple years. I now see a medical neurologist every six months; he helps keep me sane LOL (anti anxiety meds).

So you are only like 5-6 months past the bleed. I am going on 7 years. My neurosurgeon is highly gifted and extremely compassionate, but has been known to quote the stats ( like only 4 percent of people who have a ruptured aneurysm come thru this well) and then say "now go live your life", because for him once the aneurysm is fixed, it's fixed! (BTW this surgeon also placed the shunt for my ex co worker and treated Gabby Gifford when she came to Houston). However, once I really made it clear that I had lingering issues, he did send me to the other dr who explained that we don't get off free, even if we can still walk and chew gum at the same time.

It takes a lot of time to get past this assault. Two weeks ago I told my neurologist I had been feeling better than I had in years. This week I am extremely fatigued, my memory is horrible and I am barely functioning. Thank God Blue Bell is back! Seriously you will get better, but there will be ups and downs. For me though, if a dr doesn't have compassion or even attempt to help you cope with these changes, it is time for another dr. But I have been spoiled by the best........