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About codewarrior_777

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  1. 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.
  2. 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.
  3. 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.
  4. Hey Daff, Although I can't empathize with your physical limitations since the 'bleed', I can with the with the sadness and yearning for life 'pre-bleed'. It isn't greedy to want your life back. I know if I was in your position, I would too. Do you feel pressure in your head in the morning? It could be an over/underdraining issue with the shunt? I'm so sorry that you don't feel you can reach your full capacity. It's only human to want to. Have you tried acupuncture? Maybe it can help you with this. If you can get over the needle thing, it can really help with physical stamina. The Chinese believe the body is ruled by Chi energy and when this becomes imbalanced, your body is not running at it's optimum. Obviously, something like a brain bleed there may be more of a struggle to come back to normal. I just wanted to put that out there as it's helped me tremendously in the past.
  5. 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.
  6. Yes in the States, your license is not automatically revoked. I asked a neuro doctor about this and he said I would be the best judge of when I can drive again. I probably could've driven at 2 months, but I think I first drove around the 3 month mark.
  7. When I was released from the hospital I was on codeine. Also on sodium pills, because it was low. I was on that for about a month after hospital. Now, I'm on Clonazapam (anti-anxiety) and very recently Zoloft ( anti depressant). I have to so say that so far I don't like the Zoloft because it makes me uneasy and uncomfortable. I have to take Clonazapam with it to take the edge off of the Zoloft. Before I was only taking the Clonazapam as needed. Now I take it twice a day. Can't wait to get off the Zoloft. My doc says 6 months.
  8. As for me: 1) Do you get headaches from the shunt? ​ No. Although in the first few months I did. I couldn't make fast movements. I still get some sharp pain and my head feels full when I bend over. I'm not sure if it's still healing. 2) Any pressure like high or low? I would have to say no at this point. 3) Or do you not feel anything at all? Most of the time nothing, except maybe the scars healing. We'll see as time goes on.
  9. Yeah, I have to say I agree with you. That sounds the most logical. I just think it's odd that I don't feel anything and I've only had it for four months.
  10. What does it feel like when the shunt drains? I ask because I don't experience this.
  11. I did at first when I was recovering. It's mostly stopped, but still get sensations around the shunt area sometimes. Sometime I think the feelings in my head are stress related, but not sure.
  12. 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.
  13. 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.
  14. 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?
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