I would have to agree with my fellow hydrocephalus warrior Skye Waters when she says the medical community has it backwards when it comes to diagnosing potential problems with shunt or Endoscopic third ventriculostomy failure. They want to rule out the “mundane” problems first such as: a cold, gastrointestinal issues, or, my personal favorite, a migraine headache. In all fairness, I will say, however, that constipation can mimic a shunt failure due to pressure on the distal catheter.
Let’s look at potential problems with an ETV:
Sudden pathway closure occurs when the pathway burred in the floor of the third ventricle closes. It occurs in an estimated 20% – 50% of patients within five years with the majority occurring within six months of the procedure being completed.
Infection with an ETV and/or ETV/CPC statistically has been shown to occur in less than one percent (1%) of patients treated with an ETV.
Fever and bleeding from an ETV or ETV/CPC are possible even though advances in technology have significantly decreased this risk. According to the Hydrocephalus Association this is the result of thinning the floor of the third ventricle (see image above). Perforation of the basilar artery located beneath the floor of the third ventricle.
The Hydrocephalus Association says that, as warriors, must realize that an ETV is not a permanent cure for hydrocephalus. While I agree with this statement, I think it’s equally important for the medical community to understand we are intimately familiar with our bodies and when something just isn’t right. They need to become better at listening to us as opposed to making “one size fit all”.