Hi there
To briefly introduce myself, I am a 36 year old woman living in New Zealand. I was diagnosed with aqueductal stenosis at six months of age. My shunt was last revised following a blockage around 18 years ago and until October 2009 I lived a normal life.
Back in October I was diagnosed with a blocked shunt following increasingly severe migraines and nausea. The neurosurgeon didn't want to touch my old VA shunt. I didn't want to go with his first suggestion, a new VP shunt on the other side of my head, because my sister (who also has AS) had a lot of trouble with infections and breakages after having the same procedure. Instead we went with an Endoscopic Third Ventriculostomy.
I felt ok'ish after the procedure, but have felt progressively worse since. I had an MRI, CAT scan and lumbar puncture at the start of December, all of which were 'normal'. After the lumbar puncture I had a severe LP headache which lasted around four days. My eyesight, which had been 'off' beforehand, suddenly got a lot worse, as did the sense of unsteadiness I had been experiencing. I started to feel as though I was constantly moving.
Just before Christmas I was diagnosed with a vertical diplopia. A month later, with my eyesight worsening, I was also diagnosed with a horiztonal diplopia. On top of that I have a constant issue with a kind of vertigo. My body feels like it is being wrenched to the right. When I lie down I suffer from a pulsile vertigo. My right ear is, according to my family doctor, inflamed and has fluid behind the drum.
I am now looking at having to leave work. I rely on sleeping pills to get any rest and am unable to function on a daily life. After the tests in December the neurosurgeons claimed there was nothing wrong and referred me to a neurologist. Three neurologists later, none have been able to suggest any cause or solution for my issues. I have been in and out of hospital but am having difficulty getting to see another neurosurgeon. I have finally secured an appointment but it is over a week away and, in the meantime, I continue to get worse.
The only suggestion I have been able to obtain from anyone so far is that my brain may be taking a while to adjust to the new method of cerebrospinal drainage. I feel, however, that there must be something wrong, particularly given the balance and ear issues. For a few days after the surgery I experienced a sound like air escaping under high pressure from behind my nose/sinus area when I lowered my head.
Has anyone had any experience of issues following an ETV? Can anyone offer any suggestions as to a way forward?