The new HydroPowered.org web site has been updated to enable open source sharing of art & designs for persons & families impacted by hydrocephalus. Together with its HydroPowered.org Facebook group, followers will be able to upload and share their art & designs in an “open source” type setting. http://www.hydropowered.org/
“Art can be posted or downloaded from the Facebook site, placed on clothing, or made into stand-alone pieces of art,” says Stephen Dolle, HydroPowered.org’s creator. “Technology can be designs of anything from shunt devices to mobile apps, and there’s no requirement it be related to hydrocephalus, only, the person/family submitting must be impacted by hydrocephalus.”
The second goal or mission, Dolle says, is to raise $100M for new “open source” technology solutions in the care and treatment of hydrocephalus. He says hydrocephalus today remains 25 years behind in comparative technological advances, and he believes this open source concept is the best way to move forward with innovation. Hydrocephalus is also the leading neurosurgical condition in children. The current status of surgical outcomes with hydrocephalus today with CNS shunts is entirely unacceptable! With these funds and new open source initiatives, we believe we can forever change the care and treatment of hydrocephalus.
Welcome to my NPH and Hydrocephalus Shunt Monitoring Services
My name is Stephen Dolle and I am a neuroscience researcherand medical (shunt) device consultantfor the disorder, hydrocephalus. While my Test Test is yet to be made into a mobile app (few apps for chronic disorders are available today), I provide FREE forms & instructions that patients and families can use. Or, you can pay me to guide you thru the monitoring process, where I can also write up diagnostic reports for your doctors. My fees for this are $125/hour. More information is also available on my web site regarding consulting and monitoring at hydrocephalus treatment & forms. These forms are a great way to keep track of your hydrocephalus history of complaints. Below, I discuss what the monitoring forms and user instructions do, and share some of my patient’s monitoring reports.
I became scientifically involved in CNS shuntsand shunt monitoringin 1994, several years after a brain injury and onset of hydrocephalus. I had performed shuntograms and cisternograms for hydrocephalus as a nuclear medicine technologistfrom 1976-1992 before succumbing to the condition myself. So I was quite familiar with hydrocephalus. But it was two years after my own onset of hydrocephalus with a slew of all too common complications, that I became scientifically involved first as an FDA patient advocate, and eventually, as inventor of the DiaCeph Test– an mHealth app that was to run on a PDA and monitor hydrocephalus as early as 1999.
From 1999-2003, I worked with my start-up company, DiaCeph, Inc., developing the concept and trying to raise funds for development. I continued some FDA patient advocacy thru 2007, but eventually moved on into other interests in the neurosciences, most notably, putting on drumming events and drumming for the brain workshops. I continued to stay abreast of CNS shunt technology. And in 2009, I began providing NPH hydrocephalus shunt monitoring and patient consults. Information about these services can be found via the link below.
My drumming workshops became very successful. In Sept. 2015, I put on two drumming workshops and proposed a “Drum-Off for Hydrocephalus” at the National Hydrocephalus Foundation’s PATIENT POWER Conferencein Anaheim, California. Feel free to speak to Debbi Fields as to the success of these drum circles.
Below are my July 2016 updated DiaCeph NPH & hydrocephalus monitoring forms and instructions. They are also pictured below as images. New to this series, is a historical flow chart (2nd below) for retrospectively plotting hydrocephalus complaint levels vs shunt opening pressures for any period from a few months up to 10 or 15 years. The instructions for how to do this are included in the back of my July 2016 DiaCeph NPH Hydrocephalus Monitoring Instructions. You are free to download and use these forms. These are also available on my SlideShare.net – SEE further below. Or, you may download from my web site (once I’ve updated it there) hydrocephalus treatment & forms.This is a good way to keep track of your hydrocephalus history of complaints.
DiaCeph Test MONITORING INSTRUCTIONS
DiaCeph Test MONITORING FORM
DiaCeph Test FLOW CHART
Below are two sample patient reports from hydrocephalus consults I’ve done over the last 7 years. I have permission to host & share these two patient reports so that others affected by hydrocephalus can learn of these new methods in hydrocephalus monitoring.
In the first report, the patient collected 2 weeks of monitoring datavia a journal I provided him, and then returned the completed journal via Fed-Ex. From this data, I created ICP graphs using the Microsoft Excelprogram. And I then interpreted the graphsand wrote up a 15 page reportfor he and his doctors.
In the second report, I reviewed an NPH patient’s CT and MRI brain scansand medical history for signs of shunt malfunction, aging, and brain atrophy. I then wrote up a reportfor the patient, and a second reportfor his physician.
I provide these consults as a medical (shunt) device consultant, mHealth designer, and former imaging consultant. These two reports are as follows:
NPH DiaCeph Monitoring Report #1 on SlideShare.net