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pseudotumor cerebri / intercranial hypertension entry 12
Nov 03, 2009 11:01PM
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Its been several more weeks since my last update. Unfortuantely we are still having ongoing dramas.
Not long after my last entry, my wife suddendly had a significant increase in pain and a low pressure headache again - accompanied by swelling around the shunt/valve site.
Unbelievably, she'd had a 'mechanical' failure and things had become disconnected! so a third surgery had to be performed to reconnect things.
More time in hospital, more time at home recovering.
Then - after about 3 weeks she was ready to attempt work again part time... when the swelling in back resumed (not as bad as with the totally disconnection) and low pressure headaches again!! Fearing the worst, back down to the hospital again.
tests and x-rays are done - no disconnection could be seen. We argue that maybe its a slow leak? The neurosurgeons aren't interested in that. They increase the pressure in her valve a couple of times over a couple of days - little to no benefit. The swelling in her back comes and goes fairly quickly - often too quickly to be seen by a doctor or when we finally had an ultrasound done.
Much frustration.
Eventually get to talk to our neurologist again and he suggestions injecting a radioactive isotope into her spine so that they can see any slow leak. Great - neurosurgeons are asked to perform this on a monday, but monday comes and goes and no doctors... finally on tuesday the neurosurgical consultant comes in and refuses to do the test stating "we don't do neurosurgical procedures to test for things, only to fix them'. #$%^!^&!!!!
so she get discharged the next day - feeling slightly better, but not much.
At this point, we decide to go to a different hospital. Our intitial thought was to travel to Auckland, but we have no family there and some friends who we met on our honeymoon, but didn't feel like we could impose ourselves on for too long.
My wife is Australian, so we opted to head to Brisbane in the hope we could get her admitted to Princess Alexander hospital (which we'd heard had a good reputation for things neurosurgical)
the flight was very scary, but i'd read that cabin pressure is lower than normal, so she should be ok. Landing would be difficult (and it was) as the cabin pressure increased - her back balloon with fluid and the pain and nausea was intense.
nb - changing the journal names to intercranial hypertension as thats more accurate according to the folks at www.ihrfoundation.org
Not long after my last entry, my wife suddendly had a significant increase in pain and a low pressure headache again - accompanied by swelling around the shunt/valve site.
Unbelievably, she'd had a 'mechanical' failure and things had become disconnected! so a third surgery had to be performed to reconnect things.
More time in hospital, more time at home recovering.
Then - after about 3 weeks she was ready to attempt work again part time... when the swelling in back resumed (not as bad as with the totally disconnection) and low pressure headaches again!! Fearing the worst, back down to the hospital again.
tests and x-rays are done - no disconnection could be seen. We argue that maybe its a slow leak? The neurosurgeons aren't interested in that. They increase the pressure in her valve a couple of times over a couple of days - little to no benefit. The swelling in her back comes and goes fairly quickly - often too quickly to be seen by a doctor or when we finally had an ultrasound done.
Much frustration.
Eventually get to talk to our neurologist again and he suggestions injecting a radioactive isotope into her spine so that they can see any slow leak. Great - neurosurgeons are asked to perform this on a monday, but monday comes and goes and no doctors... finally on tuesday the neurosurgical consultant comes in and refuses to do the test stating "we don't do neurosurgical procedures to test for things, only to fix them'. #$%^!^&!!!!
so she get discharged the next day - feeling slightly better, but not much.
At this point, we decide to go to a different hospital. Our intitial thought was to travel to Auckland, but we have no family there and some friends who we met on our honeymoon, but didn't feel like we could impose ourselves on for too long.
My wife is Australian, so we opted to head to Brisbane in the hope we could get her admitted to Princess Alexander hospital (which we'd heard had a good reputation for things neurosurgical)
the flight was very scary, but i'd read that cabin pressure is lower than normal, so she should be ok. Landing would be difficult (and it was) as the cabin pressure increased - her back balloon with fluid and the pain and nausea was intense.
nb - changing the journal names to intercranial hypertension as thats more accurate according to the folks at www.ihrfoundation.org
