What is Psuedotumor-Cerebri
Idiopathic intracranial hypertension (IIH), sometimes called benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC) is a neurological disorder that is characterized by...
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HELP!! :( Keyman 26's wife
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Hi All - I'm Keyman26's wife and since you were all so helpful for his i might try my luck for advice. Do approx 3 wks ago now my shunt broke again though this this time it seems to partially break. I was getting moderate swelling where the shunt and valve are in my back and also very occasionally i still felt the tube drain into my tummy. So i knew something was very wrnt as i was getting the start of severe low pain pressure like last time (not being able to stand at all).
So we though we would we proactive and went to the hospital and showed that everything. Who promptly said no way there could possible be a problem because 3 weeks prior to this when Keyman told you it broke they reckon they tripple tied everything. They weren't concerned about the sudden swellin and sent me home. 2 days later we got a plane to Australia knowing full well th e medical system here while having itd fault was we a huge stpe up for wellington hospital NZ. This proved to be true the nurses/food/staff etc are VERY plesant OK To the problem we are now having. Suddenly they are holding off on the surgery to prove that i will actually get high pressure again and that i need a shunt and valve put back in. I feel quite angry becuarse theyre essenitally making me worse in order for me to prve the pressed id high. Thought originally when i was diagnosed i had pressre 35+ and hardly any swelling around eyes - papillodema At the moment both my pupils are blown out - it statuette with just the right one. I can barly see/type hence speelilng mistae ive preb writtn. So i have a bad feeling yjeu will srny me off we it cised It has beem so full om mum thinks they will semd me home here soon Any suggestion on neurosrgeons in Australia woul d be greatly appreciated or simpy advice on what to do went req Many Thanks giggles23 Posted on 11/07/09, 11:11 am |
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I'd get a second opinion... Demand something be done now...Instead of waiting for something bad to happen ...Id rather be safe than sorry. 
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im with talitha demand i am in Western australia and ok we have great food nurses and staff but we don't have the smartest nurosurgens i am 4 weeks into my high pressure headache i need a shunt and i have to wait for them to have time to do it, be demanding is the only way i have the kids at home alone otherwise i would be sitting in er and not leaving till i was sorted for pain atleast. hell the more i reaserch what happens to a brain under constant high pressure the more i am concerend about what is happening to mine
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I agree with the others be demanding, Has soon has my vision started showing it was comprimised my neuro said I needed a shunt now, and took 16 days for me to see a neuro who got it in, I have a pit bull neuro who gets things done, Push them ur future depends on it
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They agreed that my vision was blurry but they think that theres no papillodema therefor no need for a shunt.
theye leaving the broken on in there and not fixing it or taking it out. Theyve told me they dont know whats wrong with me so i could be in hospital for weeks/months until thy can make sense of why my pupils dilated and fixed. Meanwhile my husbands in another country unable to be here -my mum has to flly home to Darwin on Sunday and my dad who lives 2 hours drive away is no support at all. Im really not in a good place mentally right now. I thinki am am going to discharge without the Dr's permission and fly home to be with my hubby. That or jump off the top of the building. im very broken. :o(
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life'sbetter
I have the same problem. My eyes bother me but I have no palpilledma. It's crazy. I had a regular opthamologist tell me I had dilated pupils, my NO has never mentioned it. My vision is off (blurry) in one eye but it has been this entire time, ever since I was diagnosed. I may have some permanent damage. Oddly I see 15/20 out of both eyes, even with it being a little blurry. A good way to see if it is your pupils verses your optic nerves is- if you can see better with sunglasses on. If your optic nerves are swollen sunglasses won't help. So this is a test for you to see if they are making sense or not.
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Hi - sunglasses help my head from not hurting when people turn on bright lights but they do nothing to hlp my vision........is that what ou mean?
The Dr's here are now saying that i dont have BIH and that the doctors in wellington should never have put the shunt or valve in in the first place. But they cant tell me whats wrong they have no medical explanation for my high pressure headache (i cant lie flat and my ears are whooshing sort of) and no explanation for my fixed non reative fully blown pupil. Theyve even taken me off the diamox now. We've asked for a second opionion but they are all in agreement so it has to be an opinion from a different hospital - not sure how thats going to play out yet because im in the 'best hospital' this is the catchment area hospital for all QLD and northern NSW which is huge. I dont know what to do. i jst cant believe its hapened. Its sucha mess and im so worried about my husband hes home alone and feeling quite flat and down bacise he's worried and he cant be here with me. Unless we won the lotto we couldnt make it happen because of our mortgage and selling isnt an option right now or id be doing it. Its the not knowing what the problem is thats the scariest i still maintain that is BIH - i didnt get papilodeema first time but i still had pressure sky high - but thaty dont believe it. its like banging your head against a brick wall..... more waiting. Thank you everyone for your prayers support and advice i really appreciate it!! x
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