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dln
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50 years old and my mother is living with it right now father just died this week of this and congestive heart failure anyone ever heard of this or gone through this experience?
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Carol Bradley Bursack
Feb 7, 2010
You doctor is likely thinking of a shunt. This is generally successful, though all surgery has risks. I'd seek a second opinion just to feel more comfortable, but since your mother has dementia, this may be a clue. Still, a second opinion is often a good idea.Carol
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NancyH
dln - Are you the one with too much spinal fluid? How would anyone know that? I have never heard of such a thing before, but then... But I agree, a second opinion is definitely in order.
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I had neverheard of this either. My husband kept telling me something was wrong and then other people would make comments but I have been under a lot of stress lately. The neurologist did an MRI which showed the ventricles enlarged thus pressing against parts effecting memory coordination forgetfulness etc. I really got scared especially surgery on the brain. It is strange to wonder if you have done something and then forgot. I am now having headaches. Anybody else heard of this please let me know. Thanks for those who have already responded
tashababii26
May 7, 2010
I have this to and my eye doctor found it i went threw puberty and it went dorment 2 days before my surgery all i had before that was spinal taps and its coming back slowly but i get really bad headachs and i try and throw up my pupils are dilated and i sleep they put me on meds but they are killing my kidneys i wish they have a cure for thiss. p.s im only 13 i had it when i was 10-11
linda09
May 8, 2010
TASHA BABII26 /there that explains why you cant sleep and havin bad dreams . go see ur doctor right away , sound slike you have fluid in ur brain . plz let us know and keep in touch . we care and youre only 13 . you need to talk to a grown up and ask about getting you into the dr soon as possible .
Delcait75
Jan 18, 2011
I have been diagnosed just recently with what is called a pseudo tumor. Basically my brain thinks there is a tumor, although there is not. My spinal fluid is very high, which is causing the pressure in my head. I have been struggling for years with severe headaches. After years of getting nowhere with my neurologist, I switched to another neurologist, who orderered a spinal tap. That is where they found my pressure to be way to high, and likely the cause of my headaches. I've been put on the non-name brand of Diamox which is supposed to help. So far we've had to up my dose twice, and I'm still waiting to see if it works. I'm keeping my fingers crossed as I am not looking forward to having a shunt put in. I hope some of this infomation was helpful.
amyleann
Apr 4, 2011
i have the same the same thing and been put on diamox but it doesnt seem to be working. does anyone know of any other meds that work?
I just went in for another spinal tap last week. My fluid level has gone from a 29 down to 21, which is good, but that's also on the generic Diamox. I do have the side effects from the meds, the tingling and numbing of the hands and feet, slurred speech, blurry vision at times, lack of concentration, and severe exhaustion. The good news is I've lost some weight. The bad news, now that we got the pressure down, and I am still having daily headaches, we still need to figure out what's causing the pressure on my optical nerve and what's causing these nasty headaches. Amyleann, from what I've read and been told so far, the next step is having a possible shunt put in to help reduce your fluid level. That's a big step. That's the step I was just at and ready to do. Until they did this other spinal tap and where as my pressure is now under 25 there no way a neurosurgeon will put a shunt in. For me, that's fine, I just want to have days where I am not in pain, and where I can have the energy to do stuff with my kids and their friends, instead of always being so exhausted. Good luck to you. Keep us informed.
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