codewarrior_777 Posted August 12, 2015 Share Posted August 12, 2015 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. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 12, 2015 Share Posted August 12, 2015 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. My family were told if shunt gets blocked I'd revert back to how I was and sleep all the time, or it might have done it's job and is now a part of me It gave me a chance of living normally again, after the SAH.(I've never been normal lol) Don't be scared look upon it as part of you and it's there to help you recover. When I first felt mine I was "arghh what's this behind my ear" but you do become used to it, and I notice when stressed it gets bigger. Good Luck WinB143 xx xx 4 Quote Link to comment Share on other sites More sharing options...
Skippy Posted August 12, 2015 Share Posted August 12, 2015 Hi Paul and welcome. I don't have a shunt, but as Win says, try not to get to stressed. I know that its easier said than done, but try to relax as much as possible and drink plenty of water. Take care 2 Quote Link to comment Share on other sites More sharing options...
Louise Posted August 12, 2015 Share Posted August 12, 2015 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... 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 12, 2015 Share Posted August 12, 2015 Yes Paul my surgeon also said No Stress!! So relax and when stressed out try singing (Yes I know it sounds daft) it helps me, but only happy songs. Good Luck Winb143.. Again !! Quote Link to comment Share on other sites More sharing options...
Carolynusa Posted August 12, 2015 Share Posted August 12, 2015 hello Code warrior - my name is Carolyn. My sah was in July of last year. I was in coma for a month so had no idea what the heck they did to me or even what an sah was. I had some coils, some clips and then they discovered that I was losing too much fluid so would have to have a shunt. I don't remember them doing that either - thank Goodness! The shunt really bugged me for months and I am aware of it still but I think I am still early in healing. Like Win (the singer) I also notice it more when I am stressed. Try to keep your mind on other things and you'll think of it less. When you feel it don't worry as it is normal for that. 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 4 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted August 12, 2015 Share Posted August 12, 2015 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 and in fact the hydrocephalus was returning so I guess I can reassure you a little bit that it's not something where you won't have time to seek help and If it's not working you will know , you will feel different but it is important when you do have a shunt to be aware of the sensations that accompany it and get used to and familiar to it. I kept a diary to help. There's lots of scary story's about revisions and malfunctions. Step away from these. Yes it could malfunction but then so can we anyway, hey our brains bled! so build up your trust in it, have hope and if there is a problem you will know and be able to seek help. I wrote in a previous post and shared how I feel high pressure or low for that matter; do you know how it feels for you? For me High is a tight finger like pressure and becoming more absent and forgetful and very very clumsy. But main thing is If you have any symptom that could be shunt related and that worsens always seek medical advice help. I got a lot of non medical information about living with a shunt from a UK organisation called Shine. I recommend it for non scary reading and it helped me to understand how it works but like Win and Louise say from experience it takes time to make friends with this apparatus but you will. It's three years this July since James (as I have named him after a racing driver call Hunt the Shunt) took up function in my brain and it's honestly better living with it than the effects from the hydro or having numerous lumber punctures, all of which I recall vividly. That said recivery with a shunt and post bleed is hard as Carolyn, win , louise and others will attest to but The sensations and soreness will go with time but maybe try sleeping more upright for a while and never just jump up from lying in the first few months anyway. Good luck. Baby steps. 1 Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 12, 2015 Author Share Posted August 12, 2015 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 Thanks for your response. 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. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 12, 2015 Author Share Posted August 12, 2015 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. Hi Daffodil, 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). Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 12, 2015 Author Share Posted August 12, 2015 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 Wow, so you lived without one for a year after your SAH. 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. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 12, 2015 Author Share Posted August 12, 2015 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? Quote Link to comment Share on other sites More sharing options...
Super Mario Posted August 13, 2015 Share Posted August 13, 2015 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. 1 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted August 13, 2015 Share Posted August 13, 2015 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. 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 13, 2015 Share Posted August 13, 2015 Code, When you get worries or stressed does the shunt feel bigger? Mine does, see we have the same thing and I had mine put in 2010 but my SAH was 2009 but had Ventriculitis and Sepsis so couldn't have one in while ill., Cheer up and remember it is helping you, as all I did was sleep before it was put in, I was as I call it in cuckoo land. The thing I remember is being scared and told nurse if I didn't make it tell my hubby and daughter I love them, she said she would stay with me all through op, next morning I woke up and sang to her so I was told xx poor nurse lol Good luck and don't worry xx you'll be fine, No Stress !! xx Love Win xx 2 Quote Link to comment Share on other sites More sharing options...
Louise Posted August 13, 2015 Share Posted August 13, 2015 Whoa, 16 years! Glad it's lasted so long for you. Do you ever wonder if your brain started working again? Not quite sure what you mean there - sorry... And I'm glad its lasted too but of course its lasted why wouldn't it... Do you have to clean your one out? or do you have to get it adjusted from time to time? Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 13, 2015 Author Share Posted August 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 13, 2015 Author Share Posted August 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 13, 2015 Author Share Posted August 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted August 13, 2015 Share Posted August 13, 2015 I have never heard of anyone having to clean a shunt out. In any case you can't get to it as it is under the skin. You will know if you had an EVD as you will have a small dent in your skull where it was fitted. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 13, 2015 Author Share Posted August 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 13, 2015 Share Posted August 13, 2015 You can now join the Shunt club along with the rest of us...Good luck Code and try not to worry too much. I feel you will be okay but any worries come on here and give vent to what's bothering you or see your Doctor. I wish you Good Luck and a Good life xx Winb143 xx Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted August 13, 2015 Author Share Posted August 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 14, 2015 Share Posted August 14, 2015 Good for you Code and No Stress in the meantime xx If Louise has lived with hers for 16 years then you'll be okay xx Please try not to worry, Easier said than done !! This site is so good for putting our worries at ease as the saying goes .. A problem shared is a problem halved" Hey take your half of problem back, lol just kidding you. xx Keep Well Win xx 2 Quote Link to comment Share on other sites More sharing options...
Louise Posted August 14, 2015 Share Posted August 14, 2015 I also have a tube in my brain so the fluid is always going to be there basically the shunt keeps me alive... sorry if I confused matters I'm sure I heard about people who had to flush theirs out (because their on the outside) maybe got that wrong doh! anyway I'm sure it will be fine but if in doubt ask the professionals... Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted August 15, 2015 Share Posted August 15, 2015 Hi Paul, I just wanted to say that I'm thinking of you and sending you prayers and positive energy and thoughts for the weekend and for your appointment next week (though they'll probably be redundant and you'll be just fine, you sound very strong and resolute). I have just a couple of things to say as my NASAH seems pretty insignificant compared to much of what has been suffered by people on this site, except to say look after yourself in every way. Don't hesitate to get professional second opinions on whatever is possible if you have doubts. Once one has good communications with one's specialist / doctor, the main thing is to try to trust in them even if you have questions to ask. Take care Paul, keep in touch. I think most of us will be in that room with you in spirit at your appointment next week ... .. hope you're ok with crowds!! Sammy Anne 1 Quote Link to comment Share on other sites More sharing options...
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