Daffodil Posted September 5, 2015 Share Posted September 5, 2015 Hey Paul, think you've had some super replies from fellow shunt club members and hopefully this will help you as you continue your healing. Do it at your own pace, it's the only thing that will work and you will find it. Sharing also my thread from earlier in my recovery tracking my thoughts on dealing with the hydro and the bleed effects http://web.behindthegray.net/index.php?/topic/2501-tracking-sah-recovery-with-aquired-hydrocephalus-my-thoughts/?hl=hydrocephalus Take care. Baby steps. 1 Quote Link to comment Share on other sites More sharing options...
Gemma B-B Posted September 5, 2015 Share Posted September 5, 2015 As far as I am aware you can use scans to diagnose or check on hydrocephalus. I believe you check the size of the ventricles in the brain. Maybe check with your doctor? I know you are in the USA but the NHS website says this: http://www.nhs.uk/conditions/Hydrocephalus/pages/diagnosis.aspx 2 Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted September 5, 2015 Author Share Posted September 5, 2015 Thanks for the link Gemma. So they scanned you after you had the shunt put in to check on your hydrocephalus? If that's so, then I tell my doctors know about it. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted September 5, 2015 Author Share Posted September 5, 2015 I read your thread Daff. How are you feeling these days? Are you still sensitive to pressure? And you can feel the CSF drain? I've heard that before from some people. I noticed though in the past few days, when I bend over I feel my shunt area. A sort of pressure on it or sharp pain. Quote Link to comment Share on other sites More sharing options...
Gemma B-B Posted September 5, 2015 Share Posted September 5, 2015 It is ok I checked with my husband (I don't remember any of my stay in the hospital but the very end) and he says they scanned me before I had the shunt when I had the EVD drain and also once afterwards as well. I also went for my 6 month follow up MRI in July as well where they checked the amount of blood remaining, the shunt and my aneurysm (although I had a NASAH I also have an un-ruptured aneurysm in my brain - never simple!). Perhaps have a chat with your doctors and see if an MRI is an option at all. Good luck! Quote Link to comment Share on other sites More sharing options...
Sammy Anne Posted October 12, 2015 Share Posted October 12, 2015 Hey Paul, How're you doing? Just checking Hope you're feeling better. Drop us a line so we know how you are. Sammy Anne xx Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted October 12, 2015 Author Share Posted October 12, 2015 Thanks for your concern Sammy. To be honest, these past few months for me have been so hard emotionally. I'm having a really hard time accepting the shunt and so scared about the future and what that means for me. In the hydrocephalus support groups online there are so many people having issues with their shunts and I'm just afraid of when that will be me. I feel bad because, honestly, I'm not going through what a lot of you are going through (no headaches, fatigue, memory loss). I don't feel I'm in a place where I can complain. If I didn't have the shunt, I would say that I'm back to where I was before the bleed physically. I had an NASAH so I'm not sure if that's why. What's even more frustrating, is that there isn't a method (non-invasive) to test for hydrocephalus once the shunt is in. The only way is to wait until the shunt fails and I get symptoms. How will my body react when that happens? Will I be someone where the symptoms come on slowly, or will I need to be rushed to the ER like others? With hydrocephalus, you just don't know. It's a very finicky condition. I thought that the fact that I don't get headaches/pressure changes (since most with hydrocephalus do), that maybe my hydro was gone or maybe not as bad. As it turns out, some people with hydro don't get headaches. Most do though. I know most of you here are going to disagree with me, but having the shunt is worse than death. I really wish the brain bleed would've taken me, because I would've been at peace at least. Now, I'm having to live with this looming shadow of a shunt failure. It just isn't a way to live. I'm not at peace. I really don't like that I have to be facing my mortality at my age (37). I think if I was older, I could handle it better. My primary doctor has tried to put me on anti-depressants (2 different ones- Zoloft and another one), but I can't take them. They are like rocket fuel for me and make me feel very uncomfortable. Also, at night they keep me awake, so I just can't take them. Maybe he will try something else. I don't have an appointment till November. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted October 13, 2015 Share Posted October 13, 2015 CW, forums can be of so much help but don't forget that folk often go to forums and only post the negative. The number of people posting on that forum will only be a small minority among the thousands, possibly millions who live with shunts, although it may seem that here are many on there. 2 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted October 13, 2015 Share Posted October 13, 2015 Hi Paul. I agree with SUper Mario the shunt community Can be a scary story. Like you after I had the shunt placed I went in search of groups that might help and to be honest they didn't, it just fuelled a worry that this bit of brain kit I now had for life might fail anytime and that's a scary thought. So I stepped out of those and educated myself ! I know my signs and now I just ask here or my Neuro team for advice. I did find a local network but again it was mainly directed at people born with spina bifida who often have hydrocephalus and these conditions exagerate each other so just be cautious in taking everything you read and thinking that is how it will play out for you. You haven't had problems so far so no reason to think you will. Here's what I have learnt in my short time living with a shunt, I hope it may help you a little to begin to accept and adapt to life that's different. Shunts aren't perfect but the technology and advances in surgery and equipment mean that you should have many years together; worrying about it failing won't change a thing, you can't control what you can't control. You are worried it might be you, well it might not. The odds are that if something is wrong with the shunt you will know about it and you will have time to seek help. But again we don't have gurantees in life, our mortality is fragile and that's something you maybe need a little help to accept. I have accepted that based on my age it is a possibility I may have to have a revision in my lifetime but I'll take that over the alternative any day. If you eat well, look after yourself and take things steady there is NO reason at all why you shouldn't have a great life. Yes it's different to what you had planned , yes it's ok to be angry and sad but at some point you need to look up and forward and the shunt is actually the reason you can look forward, it's your everyday lifesaver, I am actually more than a little greatful for mine, it's the reason I get to kiss my daughters good night each night. Whether a shunt is working or not can be determined by scans which is why you must always go and get checked if you have worries. Sudden dizziness, high temps, vomiting....go get it checked. The scans, be it MRI or CAT shows up the the ventricle size and if this changes it can be a sign that the system is not working or blocked. My shunt was placed some months after my bleed if You recall and it was scans that determined that my ventricles still weren't draining properly. It is the shrinking and changing of pressure in these that causes the real pain with hydro and I went from high to low pressure may times so I am speaking from experience here. The risk if left unchecked is the collapse of ventricles which is why you must be kind to yourself and also know what's right and wrong for you. I had lots of scans initially post placement as they thought my shunt might not be working properly and when this happens they also do an X-ray series of the abdomen to check for pipe blockages. Please trust me when I say you would know something was wrong and they can check. You describe the 'looming shadow of shunt failure ', have a try changing your thinking to the ' the gift that my shunt is there'. It is invisibly working away each and every day for you. That's amazing really when you think about it. Think about people who live with inoperable cancer, those who await a transplant, they sieze the opportunity in each day , health permitting , and that's what your shunt is giving you the chance to do also, don't waste it in bitterness Paul. Try to stop looking back and scaring yourself with accounts that may not be relevant to your circumstances. We didn't choose this Paul, none of us did, but by building trust each day that your shunt is working for you and will be ok will help you move on. Just hope for the best and you will deal with it If that ever isn't the case. Thats all you can do here. It's all any of us can do. 7 Quote Link to comment Share on other sites More sharing options...
Louise Posted October 13, 2015 Share Posted October 13, 2015 Here, here Daff me too I'll take that over the alternative any day, without my shunt I wouldn't be here it keeps me alive and for that I am SO greatful... No don't waste your life with the bitterness live it you have been given a rare chance denied my many.. I've had mine 15years now, & I don't know of anyone that has had any problems so go on PLEASE put this behind you and start living your life... 3 Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted October 14, 2015 Author Share Posted October 14, 2015 Yes Super, I've definitely thought about that. Although the groups I'm on are really varied. People who have had their shunt for 20, even 30 years (these people usually acknowledge that they are lucky). To people who are in the hospital now for a revision or have been recently. Some people have had many surgeries just this year. It seems to me that only time will tell what it will mean for me. No one here, or any doctor for that matter can determine how my shunt will affect me or how long it will last. I hope that you are right though Super. Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted October 14, 2015 Author Share Posted October 14, 2015 Daff, Yeah, I know that the groups can be scary, but I've also learned a lot on what to look for and how to deal with it because I'm talking with real hydrocephalus patients. I want to know the truth. The aftercare at my hospital is so awful. There are so many questions that I have about my hydro (and my bleed) and I'm not really getting any answers. It seems to me that most people here have more info about their bleed and hydro. My family wasn't even told that I had hydrocephalus as a complication. They didn't explain what all that means for me now and that it's a life long condition. I'm kinda disappointed by that and consequently my parents don't really accept that I do have it. I wish I knew what my signs would be. I don't remember a thing about being in the hospital, but my mother said when they clamped the external shunt I would get headaches. My brother said that I wasn't able to speak correctly (scary). Of course, this was only a week to 10 days after the bleed. I think there was still blood in the CSF. I'm glad that you know what to look for. Maybe that would make me feel better if I knew what to look out for. It's the unknown that really scares me. I wish I could find a local hydro support group as well. I've tried looking, but nothing in my town. I know what you are saying about the shunt. Trust me, I see all that, but my brain just has a hard time processing and accepting it. I don't know why. All of you seem so strong, and I feel so weak. I know I should be more grateful. I just wish I wasn't reliant on the shunt. I want the old, normal me back. The scans, either CT or MRI, are what is usually done first to check your ventricle size, however what I've learned from the hydro support groups is that people with shunt issues don't always show up with a larger ventricle size on the scans. This can be really frustrating for the patient because they know something is wrong, but the tests don't show anything. This means that they get sent home and then returning to the ER again. Some hospitals will dig deeper with a shuntogram and a shunt series. I'm not sure if I had scans post placement or not. That's something I need to ask my neuros. I should have. I have an appointment Friday, so I'll do so then. I need to ask for my baseline CT scans as well so I can keep on my phone. Sounds like you were really taken care of at your hospital and have great aftercare as well. Trying to get any info out of my neuros is like pulling teeth! I've been told the same about people that don't have any treatment at all for their circumstance and that I should be more grateful. I'm trying. I really am. This brain of mine just doesn't want to do it. To be honest, I'm just scared. To be hit with all of this at this point in my life just scares me. The only way I can seem to find a way is to accept my mortality and come to terms with it ultimately. It's just taking some time. 1 Quote Link to comment Share on other sites More sharing options...
jess Posted October 14, 2015 Share Posted October 14, 2015 Paul you have answered yourself 20 or 30 years that's how long people have had them so my guess is they last a long time, try not to worry xxx Quote Link to comment Share on other sites More sharing options...
codewarrior_777 Posted October 14, 2015 Author Share Posted October 14, 2015 Jess, Unfortunately, this is an exception and not a typical case. I wish there was more data on people who've had shunts after a brain bleed. Although a lot of babies do acquire it from a brain bleed after they are born. Usually preemies. What kind of bleed? Probably not a SAH. Quote Link to comment Share on other sites More sharing options...
Tina Posted October 14, 2015 Share Posted October 14, 2015 Paul, it is early days for you and you have had a huge shock & trauma. It is very scary, but you will come to terms with it all in time and start to live your life again. Some great posts here to help you.Take care, you are stronger than you know 1 Quote Link to comment Share on other sites More sharing options...
Macca Posted October 14, 2015 Share Posted October 14, 2015 Hi Paul, Please try and stop worrying about it so much. Go out and live your life, make your own luck. You are not weak, look at what has been thrown at you and you have dealt with it all. All you seem to be lacking is self belief and a 'go get it' attitude. Go and do things that make you think and test your abilities, be active and that will distract you from dwelling on the negative. Easy for me to say Paul, I know, but I've been where you are with my way of thinking in the early days but there is a way forward. However, it won't just come to you, you have to go out and grab it - with both hands, it's there for the taking if only you want it. Good luck - I wish you well. Macca 2 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 20, 2015 Share Posted October 20, 2015 Paul, I went to hospital or so I am told on Thursday for Friday op and was out on Saturday as I awoke and started singing to the nurse. None of us can reassure you, but I've had mine for 5 years as I had ventriculitis followed by sepsis. Already told you this lol. I am so pleased I had a shunt put in as I can live my life again, I look on it as a 2nd chance and I am so happy to get that. You are worried it shows in your posts but that will not help you as stress is bad for you and all of us xx So I reckon You Carolyn should make an appointment and come in the green room where we can sing and laugh ..Yes I said laugh about our worries, so get your pen out and make a date for green room instead of listening to horror stories on the net. Good luck Matey lol write a few good songs down and jokes if you know any xx xx Hope to see you in Green Room one day !! 2 Quote Link to comment Share on other sites More sharing options...
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