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Thread: I feel like its getting worse.....

  1. #1
    New Community Member
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    Feb 2009
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    Default I feel like its getting worse.....

    I've been on here for quite some time and have posted a few times, but right now, I feel really odd.
    Im not sure where exactly the CSF buildup is on my spinal cord/brain but my neck has been hurting for about a week now.
    Im unable to move it certain ways and I feel really out of it. It made me worry today because with my hydrocephalus, I see very distorted or vivid.
    Im just wondering if maybe the buildup is at the base of my neck where my spinal cord starts....
    People dont know what to do when I talk to them about it because they're not in my shoes.
    Im sick of not knowing how to describe this to others.
    Pretty sure though, if I go into the ER and they do brain scans, nothing is going to change. It never does.
    I just want relief. I've been lethargic all day, and my dreams are more real than my waking life.
    Im scared.
    What do I do now? They cant put a shunt it, because last time they checked, it was too risky.
    Maybe thats changed or something.
    I just needed to vent.
    Everyone I've talked to today tells me its my anxiety and to stop freaking out. :(

  2. #2

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    I am sorry that you are having such a struggle with getting the care you seem to need right now. I don't fully understand, because all of our hydro problems are different, but I do also feel like I am being shuffled off from one doctor to another at the moment. I do what I am told, but it is obvious now that no one really knows what to say and is just passing me off because then it is not their problem to deal with. Wanting relief and feeling like no one hears what you are telling them is frustrating. You said that you have a hard time describing your symptoms. Perhaps looking up symptoms of shunt failure might help you find the words to describe how you feel. I would recommend writing down how you are feeling physically and taking that to a doctor. The prompts could help in the discussion. I hope you find relief soon.

  3. #3
    Community Member dagaz's Avatar
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    Oct 2006
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    Alberta Canada, with a Beatiful view of the Rockies
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    I think you need to get to your NS asap.. it sounds like high pressure to me... I have hydro and a leak so I get both... low and high... obviously at different times. We should remember that this is NOTHING to play with or wait out... and we all know to well the results of "waiting it out". Take care of this at least make sure someone looks at your pressures/shunt.... etc... Good luck... Connie( Dagaz)
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  4. #4

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    After my blood patch, I was experiencing high pressure headaches. I'm not sure if it's the same sensation you described but my neck felt extraordinary stiff weeks after the blood patch. When I turned my head, the pressure seemed to build. I understand it being hard to describe...when I explained it to my husband, I compared it to like twisting the knot on an inflated balloon and the balloon gets more and more pressure until it pops...I felt like turning my neck was the knot in that balloon. It may sound silly, but that was the best way I could describe it. It was like I was cutting off the circulation of the CSF fluid or something and trapping it around my brain.

    My sensation went away with time and being on Diamox. I'm a little late to posting this, so I hope you've found relief or at least are close to it!

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