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By: Stephen Dolle        Updated: May 12, 2009

Hydrocephalus Advocacy

     I host this section to give balanced view of hydrocephalus treatment and CNS shunt use. In May 2008, I underwent a shunt revision to the Orbis Sigma-II, or OSV-II, (mfr Integra) and am pretty happy with its performance. In fact, my CT brain scan is normal for the first time in 16 years. Using my DiaCeph Test method (with forms and blank graphs that are available), I created an in-vivo comparison chart of my last three shunts. My shunt comparison graph details the OSV-II's improvement in daytime overdrainage control (esp. in early a.m.), and its improved performance during sleep at night where the earlier OSV-I did not respond well to ICP surges, and where I often awoke at night and in the early a.m. with a headache. In July 2007, I had been revised with the Codman Medos programmable shunt w/ siphon guard, and while it offered a method for non-invasively selecting from various opening pressure settings, the Medos could not keep its setting, I could not identify what was causing the reprogramming, and it had to be revised. I found its siphon guard overdrainage control just "OK." And when my nsg and I finally picked (six tries) a lower setting that enabled good sleep at night, this nighttime optimized setting allowed a bit too much overdrainage in the first couple hours of the a.m.. I found Codman's responsiveness to my Medos shunt inquiries and proposal to help provide a home test for magnetic fields to be disappointing. It would appear they do not adequately understand CNS shunts, nor what it is to live with hydrocephalus.

    There are newer shunts and components on the horizon that seem to be slow in gaining acceptance in the U.S., not because of health insurance or FDA approval hurdles, but because of the influences of corporate greed and profits. One area of CNS shunt use I found problematic was with Medtronic's anti-siphon system found in both its Delta and Strata shunt devices. A second area is that of " accidental reprogramming" of Codman Medos and Medtronic Strata programmable shunts. At the very least, there should be some type of home magnetic field level measurement to screen home electronic devices and appliances for "electro-magnetic field" levels or EMFs sufficient to trigger the settings in these shunts that have been set by the treating neurosurgeon.. Something as simple as a "standardized compass" or "simple EMF meter" and an instructional video, where users can screen and pre-screen their home prior to implantation of a programmable shunt, would have a significant impact in this safety and performance issue with these devices. We will continue to update this section on these developments.

    In February of 2009, as inventor of the DiaCeph Test and a shunt user, I finally heard the words I have been wanting to hear from my treating neurosurgeons for the past 16 years, "You do not have NPH." Last month, I finally heard those words from my neurosurgeon during my 6 month follow-up CT (at right) to my May 2008 revision (Orbis Sigma by Integra). In fact, I think I am aging in reverse (based on broader health changes, including, the calorie restriction diet I have undertaken). U.S. shunt manufacturers have contributed to many shunt users having to undergo many confusing corrective revisions - on some pretty routine cases of hydrocephalus. Today, DiaCeph is more needed than ever. It must be coded and ideally as an application for a mobile phone. Please write me with your level of interest here.

    For more information on programmable and other shunts, see our main section on hydrocephalus.