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| Hydrocephalus: Keynote Speakers, CNS Shunts Workshops, ICP Monitoring & Testing By: Dolle Communications, Newport Beach, California By: Stephen Dolle, Neuroscientist & Shunt User Updated: May 31, 2009 New (Dec. 2008): CT and MRI brain images below reveal a successful shunt revision after 16 years. This Shunt Selection Model paper details how it was made possible. I authored this method for finding the best setting in Codman programmable shunts, and host ICP monitoring forms and graphs for paper DiaCeph monitoring. I also host a download of the healing song "Evening Solstace." Donations are accepted. A 16 year & 7 Shunt Revision NPH (hydrocephalus) Mis-Diagnosis: I am Now Aging in Reverse. 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 seem to be aging in reverse (based on broader health changes, including, my new calorie restriction diet). I will be chronicling some of my experiences in a memoir as the DiaCeph Story. DiaCeph could be coded and run as an application for a mobile phone today. Write me with your interest here.
July 1992 pre-shunt Dec 2003 OSV-1 Nov 2007 Codman Medos SG Oct 2008 OSV-2 My View on Hydrocephalus: from the Trenches in the War on Hydrocephalus
As you can see from my above CT images, my revision to the OSV-2 was a big success - though it took 16 years - and 11 years after I drafted the DiaCeph Test. I always believed that if the DiaCeph Test were finished and widely available, that it would forever change the role of the patient and family in the care and treatment of hydrocephalus - and our comes would improve accordingly. Many people have suggested it is a story waiting to be written. At least now with my present success with the OSV-2 after 16 years, there is a clear and good ending. To see the DiaCeph Test become widely available, well, that would be icing on the cake. For those who are interested in using the DiaCeph Test to evaluate your present shunt and status, or help match you with your next shunt, I refer you to this Shunt Selection Model paper. One last note here on diagnostic developments in shunting. Over the last eight years, I have observed where the mind/body test method "applied kinesiology" or "AK," that utilizes memory in the body's meridians and nervous system and widely used in alternative medicine, seems to be able to identify failure in specific aspects of a CNS shunt, and non-invasively pick up evidence of increased ICP. I'll write more on this at a later date. I am starting to receive a lot of inquiries
from patients and families. I welcome your questions on hydrocephalus
and the DiaCeph Test. You can
write to me via this contact information.
But - I may not be able to timely answer each and every request. There are
support organizations more able to meet such everyday requests. I will accept "donations"
in exchange for lengthy consults, as this takes me away from my regular work.
If you're interested in the DiaCeph Test,
write to me and let me know. DiaCeph is not yet available, but it could be in
2009 as a download for a mobile smart phone, especially if a lot of patients and
families passionately requested it. You should also discuss this with your
neurosurgeon. You could help DiaCeph become available
by contacting your shunt's manufacturer, your treatment facility,
area university, and Pat McAllister, Ph.D. at Wayne State University in Detroit.
Dr. McAllister was ready to begin work on DiaCeph in 2002. If you get real
brave, contact one of the television programs like the Oprah Winfrey Show. If I
were on a show, I'd also demonstrate what I do with Afro Cuban drums to help my
mobility and coordination. Back to the "TERMINATOR" character at right, I always believed the Terminator illustrated the significance of advances in implants and diagnostics that we need brought to CNS shunts and hydrocephalus. Despite the Terminator character being fictional, it does depict what bioengineering and excellence in science might accomplish for those seeking both super and normal body functions. In the "Terminator" series, implant diagnostics and maintenance were pivotal in the movies. CBS 60 Minutes also featured a segment on a real life gifted young man with autism, termed "Brain Man." CNS (central nervous system) shunts raise many of the same issues that were raised in the "Terminator" movies: independence, special abilities, self-diagnostics and repair, and vulnerabilities. CNS shunt implants have been used to treat the medical condition, hydrocephalus, for the last 50 years. Just as was true with the Terminator's implant, CNS shunt function and performance determines the shunt user's capabilities. The "Terminator" movie illustrated the public's willingness to accept a fictional character with a bioimplant, but in the real world a person living with a brain implant still faces some skepticism and the "taboo" that continues to follow neurological disorders in the U.S. Many in the hydrocephalus community wonder why this taboo or disparity still exists in public perception. But - I believe it has more to do with longstanding Western beliefs and myths about the brain, and continues today because there hasn't been enough positive advocacy and education to dispel the myth and its stereotypes. Then - you have missed opportunities by the medical community to further treatment because of the inadequacy of funding and commitment. In terms of progress in shunt technology, in the mid-1990s the Codman company (J&J parent) introduced the first programmable shunt. Though it has helped, CNS shunts still face sizable technological and diagnostic hurdles as a result of their neglect over the last 30 years, compared to other medical devices with greater numbers. The reasons for such are a whole other in-depth discussion. At present, I and some others are waiting for the next advance: "programmable siphon control devices," which will enable much more finer control of upright CNS shunt flow. My hydrocephalus web section also hosts information on key FDA decisions that impacted shunts and hydrocephalus in recent years, downloadable patient monitoring forms, information on alternative therapies, and strategies with artificial intelligence and mobile phone assistive technology for people with affects to their cognitive skills. Whenever possible, I hyperlink discussion points to other pages within this web site, and to sources on the Internet. My information is hosted by and paid for by me. I had also been placed on permanent disability in 1992 as a result of my status and confusion in my care, and I have been working very hard ever since to change this status. In another section of this web, I present the patented DiaCeph Test for home monitoring of hydrocephalus. I submitted DiaCeph in 2007 to the Southern California AeA Awards Contest (American Electronics Association) 2007 High Tech Awards, but did not rise in their categories. I share some of my personal experiences that led to the DiaCeph Test in this DiaCeph Story - that surely now needs to be updated. Here is my abnormal Patient Graph that illustrates hand recorded DiaCeph monitoring in tandem with an ICP tap. I wrote my paper in tandem with this Shunt Technology Perspectives presentation and other works by Dr. Aschoff from the University of Heidelberg, who I met in Washington in 1999. I also feature other relevant neuroscience content, including, artificial intelligence devices, music, art, and drum rhythm therapy. I have included several key Food & Drug Administration developments as they impacted hydrocephalus, CNS shunts, and my efforts at progress. My most informative shunt paper is this Shunt Selection Model, which discusses the testing of CNS shunts, covers many shunts in use today, and compares their specifications, courtesy in part to Dr. Aschoff et. al.. Hydrocephalus Defined
Hydrocephalus is best explained by examination of normal CSF flow in the brain. The brain produces about 20 ml of CSF per hour from the choroid plexus matter located within the lateral ventricles, and circulates this CSF through the third and fourth ventricles and around the surface of the brain. CSF acts to form a hydraulic support system for the brain and spinal chord, and helps move hormones and nutrients throughout the brain. It's more vital function, though, is in the regulation of venous blood pressure in the brain, and consequently ICP (intracranial pressure). This complex regulation impacts the function of higher order cognitive processes. Once circulated through the brain and spinal canal, CSF is reabsorbed via a complex network of tiny vessels called arachnoid villi. When CSF fluid is not reabsorbed at the same rate at which it is produced, due to a blockage (obstructive hydrocephalus) or insufficient absorption (communicating hydrocephalus) - swelling of the ventricles will ensue and exert increased pressure on the vital functions of the brain. The web site, YourSurgery.com, is a "pay per view" site from the family of Dr. Harold Portnoy, and features illustrations of shunt and other surgical procedures. MSN features a free interactive illustration of the human brain. At the bottom of this page, we include an MRI image of normal sized ventricles. During all of your care and treatment, it is critically important to have a close friend or relative you can count on - as I'm seen pictured eating with a long time friend above. The age related form of hydrocephalus termed, normal pressure hydrocephalus, or NPH, occurs mostly in seniors (though can occur as young as 35 years of age). There has been a dramatic rise in NPH over the last several decades as people live longer, and it parallels the rise in dementia, Alzheimer's Disease, and brain atrophy ( seen on brain imaging). This has led to increased difficulties in diagnosing true NPH - known to respond favorably to CNS shunting. Because of its non-specific appearance on brain imaging, and in that NPH symptoms often mimic those of dementia and brain atrophy, NPH has been hard to detect. But it has been receiving more media attention and publicity more recently. CBS's 60 Minutes II aired a news story "Saved From Senility" in late 2004 that detailed some startling statistics for NPH. The story estimated NPH may affect as many as 1 in every 10 persons with dementia or Alzheimer's Disease, or about 375,000 Americans. In response to this dilemma, Codman & Shurtleff, a neurosurgical division of Johnson & Johnson and maker of CNS shunts, has been airing new TV ads informing seniors of the prevalence of NPH. More recently, spinal tap (pulse wave measurement) and other diagnostic tests are enabling a more accurate diagnosis. My patented Diaceph Test can also aid in the evaluation of NPH, seen in my paper, Shunt Selection Model. Later in this discussion, I identify a simple home screening technique for NPH. Irrespective of the cause of hydrocephalus, it is treated by either surgical placement of a CNS shunt or by an ETV procedure (endoscopic third ventriculostomy). CNS shunts divert excess CSF fluid typically to the abdomen (VP shunt), where it is reabsorbed. ETV uses an endoscope to create a permanent new opening in the 3rd ventricle that serves as an alternate pathway for CSF clearance. Treatment by ETV requires that the patient be adequately screened for obstructive hydrocephalus. For illustrative and other information on these surgical procedures, visit the New York Hyman-Newman Institute, the National Hydrocephalus Foundation, the Hydrocephalus Association, or do an Internet search. Both treatments carry risks. If performed successfully, an ETV can last a lifetime - freeing the patient from living with a CNS shunt. CNS shunts typically last about five years on average, and are usually associated with complaints and complex QA issues that affect quality of life. Symptoms of hydrocephalus and that of a malfunctioning shunt include headache, cognitive changes, nausea, vomiting, changes in vision, poor balance or dizziness, malaise, neck pain, precocious puberty and/or stunted growth in children, changes in respiration and heart rate, and coma. Due to the complexities of shunted hydrocephalus, this section is devoted primarily to shunt issues and related complaints. I have also written some discussions on Internet forums. These can be found by a search on Google or Yahoo, typing in "diaceph" in the search window. Hydrocephalus Treatment with CNS Shunts: A Historical Perspective
The person most credited with advancing the treatment of hydrocephalus in the 20th Century was Mr. John Holter, a machinist who in the mid-1950s had a young son who was dying from hydrocephalus, and without any available treatment. Mr. Holter turned his kitchen into a laboratory and produced the 1st silicone shunt designs - all prior to the 1976 regulatory involvement of the U.S. Food and Drug Administration. From the 1960s to the mid-1990s, various shunts have been introduced by U.S. and Western European interests. Europe today seems to play a larger role in the introduction of new shunts. Recent advances in shunts have included externally programmable shunts, auto-regulating shunts, and siphon control devices. When crediting the
advances that furthered the treatment of hydrocephalus, one needs to
recognize the special contributions of non-field
individuals. The first being Mr. John Holter above. Next, is (musical group)
The Beatles' EMI records and engineer Godfrey Housefield. After that, I The first implantable diagnostic device to monitor CNS shunt function was introduced in the late 1980s by Radionics, Inc., now a division of Integra Life Sciences, and termed the "telesensor." The device lent some in-office capability to shunt assessment (provided the patient was implanted with the special device, and the physician purchased the costly reading device). Yet, it faced significant problems with reliability, and could not measure negative intracranial pressure (ICP). Other monitoring attempts include the use of ultrasound to measure CSF flow through shunt catheters, and Cine MRI, a software (pulse wave measurement) addition to an MRI exam. None of the above found broad acceptance in the evaluation of shunt malfunction and performance. Standard testing today continues to be CT and MRI imaging, neurological exam, shunt tap measurements of ICP and shunt patency, isotope clearance imaging, in-hospital ICP monitoring, and coupled ICP/CSF pulse wave monitoring.
It is understood that no shunt is problem free, nor do any designs yet replicate the brain's elaborate physiological ICP auto-regulation mechanism. But, as patient users, we should demand that the field tap into all available resources and work to obtain the best possible availability and adoption of new shunts, and priorities in shunting outcomes. FDA Petition Leads to New Shunt Test: The DiaCeph Test The photo above is of me taken one day after my 1998 full revision at LA Children's Hospital, and a few months after I had completed the design for my DiaCeph Test that was used to direct my successful revision. Shunted unsuccessfully after an auto accident in 1992, within several years I came to learn that my complaints could be due to not well understood site placement issues with Medtronic PS Medical's Delta shunt. This Delta shunt incorporates an SCD (siphon control device), whereas Heyer-Schulte's equivalent and sister shunt incorporates an ASD (anti-siphon device). What led to my getting really involved in CNS shunt devices, was my poor outcome after four shunt revisions (all Delta shunts). Plus, I had 17 years of medical imaging experience with CNS shunts. None of 8 different neurosurgeons could explain my ongoing complaints. In 1995, I came across a series of studies in the literature (Rekate, Higashi, Drake) that ascribed my complaints to little known issues with anti-siphon shunts, and in time I was becoming quite knowledgeable on these topics. With previous research experience in the biosciences and in technology, and having been an accomplished nuclear medicine imaging specialist and business owner, I had the background to possibly become an expert in this area, notwithstanding the challenges that having hydrocephalus was posing to me.
I eventually authored this major Petition to the FDA on Anti-Siphon Shunts to resolve these issues with anti-siphon devices. In an Addendum to my petition, I informed FDA (page 5 and 6) of my new diagnostic test to specifically address SCD and ASD malfunctions. I continued to maintain ongoing communications with Janine Morris, Dr. Anita Kedas, and other key FDA staff on issues relating to CNS shunts, and continued to obtain FOI documents so I could make specific recommendations to FDA. After reading numerous patient posts by shunt users and families on the University of Toronto's HYCEPH-L listserv regarding the unavailability of useful shunt malfunction testing, I broadened my research to encompass "all" shunt concerns, and I determined that 24/7 home shunt monitoring must be a priority. I also learned that without available and adequate diagnostic tests, many patients in Canada and the U.S. were being denied corrective surgery, and some were even being referred for psychiatric evaluations after their physician could not identify the cause of their complaints. This was/is a sad commentary on the status of hydrocephalus. DiaCeph Test goes to Washington, D.C. for STAMP Conference
On September 18, 1998, the FDA granted my FDA Petition on Anti-Siphon Shunts. In their "Ruling," FDA stated they would hold a special conference to address the issues cited in the Petition and Ruling. This conference was subsequently termed the International STAMP Conference, and was held January 1999 in Washington, D.C.. STAMP was the first of its kind FDA effort to try to address quality assurance ( QA) issues and patient outcomes in technology regulated by the FDA, and they said they chose CNS shunts because of my efforts. I also notified FDA with this Petition Ruling Correction, and Notice of Completed Design on DiaCeph Test.
STAMP was supposed to feature presentations on technology, such as ICP
telesensors, new technology prospects, and discuss any anticipated new
technology,
test systems (i.e. DiaCeph Test), research, and proposals for the care of hydrocephalus. It was
to draft recommendations on
research
priorities, better FDA oversight, and prepare first time device literature for
patients. It seemed logical in view of patient literature
provided for prescription drugs, and literature widely provided on electronic devices, appliances, and automobiles. As of
January 2008, no such patient-user literature has ever been made available on CNS
shunts. In preparation for STAMP, I authored a Paper of Recommendations, where I did not reference my Petition or FDA ruling. I made (50) copies of the paper available at STAMP on a conference table. My efforts were acknowledged by several doctoral members of the STAMP Committee. The FDA's conference leadership made an unprecedented decision to not permit my research or presentation of the DiaCeph Test at STAMP. Instead, Emily Fudge, of the Hydrocephalus Association, spoke and presented a patient survey. STAMP Conference and CDRH division head, Larry Kessler, Ph.D., would later deny my request to have my Paper of Recommendations be included in the New Technology Section or Executive Summary of the STAMP Conference. The following document is Dolle's STAMP Request to Larry Kessler, Ph.D., and the next document is Larry Kessler's Written Response to Dolle's Request. I also provided insightful Follow-up Recommendations to Janine Morris, STAMP Chair as a roadmap so that FDA might remain committed to improvements in the care of hydrocephalus, CNS shunts, prospective drugs, and new technology. In 2002, I learned of new "Post Market Surveillance" (PS) being considered by the Food and Drug Administration, on a product by product basis, and studied the FDA's language released in this Code of Federal Regulations. I felt this new PS would be helpful in the routine use and outcomes with CNS shunts, and wrote the following Letter to the FDA for PS Consideration of CNS Shunts. In light of the more extensive filing requirements, clinical studies, and PS required of prescription drugs, shunt technology undergoes very limited scrutiny as to its outcomes in patients. In the case of a prescription drug, the patient can simply "stop taking' the medication, and can end or minimize any potential adverse effects. But in the case of a CNS shunt, an "intervention" to resolve the shunt issue more often requires major surgery in the form of a shunt revision to remedy the problem. In some cases, a shunt's opening pressure can be non-invasively changed (programmable shunt). As you can read from the FDA's Response to New PS on CNS Shunts, they viewed it differently, and denied my request. Today, perhaps one of the most problematic issues with CNS shunts is in the unavailability of real-time diagnostics on its status, and where possible, a deployment of certain simple interventions by patient/family can help re-establish shunt function. This had been one of my original intents of the DiaCeph design in 1997. Until CNS shunts are improved, we must learn to better use the interventional means available today. These past FDA failures are raised in light of the NIH's special one-day conference last September 2005, entitled, "Hydrocephalus: Myths, New Facts, and Clear Directions," held in Bethesda, MD. According to NIH stipulations, only "non-profit" organizations were supposed to attend. However, I later learned there were corporations and shunt manufacturers in attendance. The NIH conference took place at the identical building, and was remarkably similar to the STAMP Conference. NIH gives DiaCeph Two Thumbs Up
In 2005-06, there were several joint efforts by NIH and the Hydrocephalus Association said on behalf of those of us with hydrocephalus. !n 1999, I had seen similar efforts from the Food and Drug Administration and STAMP Conference fall to the wayside. There is also often too much emphasis on big business and organizations. In 2003, the Los Angeles Times reported on an undercover investigation of wide-scale abuses of non-profit organizations, and the exorbitant fees paid for celebrity appearances and endorsements. I responded with a "Letter to the Editor." Following the STAMP Conference in 1999, I was featured in an Orange County Business Journal story for my efforts with the STAMP Conference and DiaCeph Test. A patent application had been filed and later issued, and the project was helped along with support from the late W .L. Dolle, Jr.. Patent representation was provided by the prestigious West Coast firm of Knobbe Martens Olsen & Bear. Below, I provide free downloadable forms for monitoring of hydrocephalus and CNS shunt performance. Those interested can print or download these DiaCeph Monitoring Form and Hydrocephalus Day Graph. The paper forms make up key data collection methods of the DiaCeph Test. It is suggested that monitoring be coordinated with any instructions from the treating physician. The forms can be used in tandem with Diamox for screening of NPH, in-office ICP taps, and other diagnostic tests. Diamox is used both as a diagnostic intervention, and therapeutically to reduce CSF production and ICP. A typical use of these forms would entail one to three weeks of baseline monitoring (when malfunction is NOT suspected), followed by a few days to weeks of suspected malfunction monitoring. A prescribed dose of Diamox and simultaneous monitoring may also be incorporated. An improvement following Diamox is suggestive of a diagnosis of hydrocephalus, but this method assumes that cerebral blood flow (CBF) is within normal limits. Often in many seniors suspected of NPH, there will be some compromise in CBF that renders the Diamox test unreliable as a false negative. Programming Technique: Codman Medos & Strata Programmable Shunts Of interest to Codman Medos (Hakim), Strata, and Sophysa programmable shunt users is this new programming method I authored after my experiences with the Medos shunt. Typically in surgery, the neurosurgeon will set the valve to a setting somewhere between 100 and 140, a mid to upper range setting, to avoid any problems with severe overdrainage and subdural hematoma. Later in the office, the setting is then lowered or raised, mostly from a brief neurologic exam and feedback from the patient. If that first adjustment doesn't help, it typically will be dialed in the opposite direction. Codman claims that neurosurgeons are able to find the best setting for most patients within two attempts after surgery. However, I don't see how they can find the most physiologic setting of 18 settings with this method. I believe you dial in the lowest setting possible, then raise it from there until overdrainage is minimized, and you're OK while sleeping at night. Click on the above link to read the full description. DiaCeph Test up for Consideration at Wayne State University In 2001, the DiaCeph Test attracted the interest of the preeminent hydrocephalus researcher, Pat McAllister, Ph.D., at Wayne State University in Detroit. Dr. McAllister spent many months arranging development, clinical trials, and funding through a package of private, university, and state grants - only to have it halted when the private foundation, The Brain Child Foundation, pulled its private grant offering from the three-part grants plan proposed by Dr. McAllister, after it insisted that it own the entire DiaCeph project, though they were only offering a 1/3 funding grant. Presentations have been made to all U.S. shunt manufactures. A shunt manufacturer or medical supply company could bring the DiaCeph Test to market in six months. I am currently working on a proposal where DiaCeph might be able to run on mobile smart phones, and simply be available as an inexpensive download. A shout from the patient community would certainly help move DiaCeph along. Medtronic Strata and Codman Medos Programmable Shunts Earlier in 2005, I authored the paper, Shunt Selection Model, that evaluated specifications of many leading shunts, and proposed solutions to improve their use. As part of this paper, I wrote to Medtronic PS Medical and asked if they would provide a new "pre-surgical placement protocol" for their Strata and Delta shunts to help neurosurgeons better place them at the correct "anti-siphon" position. Medtronic acknowledged the critical surgical site issue, yet one month later denied this and misled my neurosurgeon into believing he could disregard the Strata's critical surgical implantation instructions, which led to my cancelling the revision. This Strata issue has no doubt affected thousands of patients. The Delta and Strata Technical Bulletin provides a graph of flow rate vs. zero point for achieving correct site placement. But, as I have learned, few neurosurgeons make any site consideration for how/where the Delta/Strata are placed. They merely place it immediately adjacent to the ventricular catheter, and in many instances, the location ends up contraindicated by Medtronic's own labeling and warnings, with substantial numbers taken back to surgery. Medtronic refused my request for a "placement protocol" to assure proper use of their Strata. In March of 2007, I contacted the Food & Drug Administration (FDA) and notified them that Medtronic/PS Medical had been misleading neurosurgeons as to the proper placement and use of its Strata shunt. Its site placement graph and minimally worded precaution in its labeling appears to present some confusion for user neurosurgeons. I am concerned with the broader impact it is having on hydrocephalus and shunt use, that it might complicate the adoption of newer and improved shunt technologies. After being implanted with the programmable Codman Medos shunt in 2007, and observing that it was loosing its setting on eight or so occasions in a few month period, I telephoned my neurosurgeon's office and was told to come in and have it reprogrammed. It was DiaCeph monitoring that initially picked up that my Medos may have jumped to a higher setting. I looked into this accidental reprogramming and found a number of published studies on the topic - that were mostly inconclusive, however, yet raised the substantive possibility of a broader vulnerability problem from household magnets and fields. According to one study, the Sophysa Polaris shunt was the least affected and unlikely to be tripped by household magnets, whereas, both the Strata and Medos could be tripped by appliances around the home. With my shunt repeatedly loosing its setting, and prior to my revision to the OSV-2, I wrote to Codman and proposed a solution in the form of an instructional video and sports compass, where shunt users could watch a video and use a standardized $12 compass to screen their home and routine for threshold magnetic fields that might reset their shunt. Codman chose not to respond. If we in the hydrocephalus community, neurosurgeons, patients, family members, and scientists collectively speak up against what we learn to be "adverse and avoidable compromises" in our care, we will see the kind of progress and infusion of new technology that will take your breath away. Shunt Manufacturer Web Sites: Vygon Neuro (formerly Phoenix Biomedical)
Living with Hydrocephalus
In consideration, my tandem application of the DiaCeph Test with an in-office ICP shunt tap provided promising results. In this protocol, the neurosurgeon compares DiaCeph Test monitoring to ICP shunt tap findings, recording observations of the patient's status and manometer readings in the supine and upright postures. The neurosurgeon can then reference the information obtained to specifications of various CNS shunts, and comparison bench tests findings in a study by Aschoff, et. al and Colleagues at the University of Heidelberg. The protocol provides some similar information to that of 48 hour in-hospital ICP monitoring, with much less cost and risks. Proper shunt matching and performance is the primary determinant of qualify of life after shunting. Non-medicinal therapies and techniques presented on our site can aid in managing non-surgical complaints associated with hydrocephalus and many other neurological disorders. There is no reliable database today in the U.S., on CNS shunting outcomes, for the estimated 300,000 to 600,000 persons living with shunted hydrocephalus. Limited patient surveys by the National Hydrocephalus Foundation, the Hydrocephalus Association, and other groups report substantial unresolved quality of life issues. One survey will paint an optimistic picture, then the same organization in another survey will get much less favorable results on nearly identical questions. The Hydrocephalus Association's 1999 patient survey carried out a survey (included on pages 8-11) to present at the STAMP Conference. In cases where hydrocephalus develops in childhood, disability data is often not accurate without employment or residence outside of the home/caregiver setting. In the U.S., it doesn't appear that either PET or fMRI imaging, which could be helpful in understanding chronic changes associated with hydrocephalus, will be widely used due to poor insurance reimbursement. I am unaware of any worldwide epidemiology data on hydrocephalus, made difficult by the unavailability of reporting in underdeveloped countries. I also present new information in this study Neuro-Compensatory Mechanisms in managing chronic neurological complaints common to hydrocephalus and many other neurological disorders, including, post traumatic stress disorder. This study focused attention on the hippocampus, neuro-hypersensitivities, and learning. My findings, as well as other content on this topic, corresponds with CNN's March 27, 2005 "Memory" Series and complaints raised by neuro-overstimulation and dysfunction of the hippocampus. You can read CNN's Full March 27th Program Transcript here. Our section on Music & Art Therapy provides some valuable techniques in the use music, art, and other methods of biofeedback for compensation of neurological complaints and improving well being. We are authoring a new section on the use of "Drum Circles" for health & wellness, education, and team communication. And, the following brain web link combines music and brain research. Within the sphere of neurosciences research, balance, and cognitive disorders, we published a sensory overload and balance study that identified techniques to help individuals who suffer from these neurological complaints from hydrocephalus, multiple sclerosis, Parkinson's disease, stroke, TBI, migraine, and similar disorders. These disorders tend to share common complaints in memory and concentration, headache, balance, and neuro hypersensitivity. We found new benefits of audible rhythm and drumming in improving patient outcomes. Below is a general information Group Drumming slide show I have prepared entitled, "Team Building & Communications thru Group Drumming: Engaging the Rhythms of your Brain." View in Microsoft Power Point versions 1997-2007: Team Building & Communications in Group Drumming Faster Load Power Point (must have 2007 v. installed): Team Building & Communications in Group Drumming View Slide Show in Adobe Acrobat Reader: Team Building & Communications in Group Drumming (Adobe Acrobat) The above Power Point shows may take up to 15 seconds to load depending on your Internet connection speed. The presentation may or may not play automatically. If it does NOT play, select in the top left corner "From the Beginning." To view options during play, right-click your mouse anywhere on your screen and make your selection to go back, forward, or exit. Here's also a "flier" on a new Rhythm Balance & Mobility Workshop I am getting a lot of interest in. Here's a "flier" on how Modern Drumming and Drum Circles are used today.
I encourage visitors to read the updated "Shunt Selection Model." The paper provides neurosurgeons, shunt manufacturers, researchers, families, and patients with insights on our tandem protocol of DiaCeph monitoring with a single in-office ICP assessment - to aid in shunt selection, in finding the best programmable shunt pressure setting, shunt pre-implantation and NPH work-ups, and post discharge monitoring of shunt and ETV procedures. This paper includes discussion, analysis, links, and information on many commonly used shunts, and incorporates comparative test data on common shunts from Dr. Aschoff, et. al. at the University of Heidelberg's hydrocephalus research center. Patients implanted with VP shunts should be advised that the presence of a CNS shunt and attached catheters can lead to compromised or weakened meridians, the lines of the energy fields that align the body vertically. Symptoms can be related to a poorly functioning shunt, but no necessarily so. It could be part of your body's normal response to "reject" a foreign body. Typical complaints are back and abdomen pains, headaches and shunt site tenderness, irritability, and fatigue. This problem is actually readily correctable with an assessment and adjustment by a practitioner familiar with meridian alignment, though it could require a series of adjustments. I appreciate donations to help cover my costs of advocacy, research, and maintaining this web site. I will also provide " consults" in hydrocephalus and other neurological disorders in lieu of a donation. Call or write me per instructions on the Contact page. |
I host this section on hydrocephalus
treatment with CNS shunts to
give a first-hand of account of some of the key developments
going on in the treatment of hydrocephalus. The "trenches" caption
above I had earlier used in 1995-97 when I was active on Hyceph-L list serve,
and I was experience shunt malfunction for several years.
Hydrocephalus
is defined as excess cerebral spinal fluid (CSF) accumulation
within any of the four compartments, or ventricles, of the brain. It occurs most
commonly as a congenital condition at birth,
but is also associated
with brain tumors, cysts, trauma, meningitis, adolescent changes, and older age
(NPH). There are about 40,000 new
cases of hydrocephalus diagnosed each year in the United States, with about 70% occurring in young children and newborns.
Eighty percent or more of all new cases are treated with a shunt. Hydrocephalus
remains the leading neurosurgical condition
affecting children today, and can occur at any age, idiopathicly, or without
any specific reason. It also occurs in persons
with Parkinson's Disease, Alzheimer's Disease, dementia,
and/or brain atrophy, and hydrocephalus such as NPH (normal pressure
hydrocephalus), are often the most difficult to detect
as they can be masked by other more obvious disorders.
Historical attempts to treat hydrocephalus date back more than 500 years, and
were usually only short term solutions, often ending in death. Some infant
cases did survive without treatment, but the children grew up with very large
heads, and were often marked with developmental disabilities. Over the last few hundred
years, cartoonists and comics have made humor of the image of an abnormally large human
head as you can see from the photo at right.
In
July of 2001, Fox
Sports Net launched a national ad campaign to promote their
sports broadcasts and used this graphic adulteration of a person with a very
large head as an advertising gimmick. Such historical
negative depictions like this ad have served to fan the many misconceptions about
hydrocephalus. I took offense to the ads and initiated correspondence with Fox
and its media carriers to pull the ads, explaining how they were degrading to persons
with hydrocephalus. I turned it over to the 
Though CNS
shunt designs appear on their surface to be simple technology, manufacture and
selecting the most physiological shunt for each patient continues to pose
significant challenges to the medical device industry and the field of
neurosurgery. The U.S.'s failure to modernize CNS shunt technology speaks volumes
about U.S. medical innovation and its over-reliance on Wall Street
and for-profit prerogatives in health care, notwithstanding the
adverse impact of outdated and burdensome
U.S. Food and Drug Administration (FDA) policies. 
have
been recognized for my contributions after receiving a shunt following a 1992 auto accident. All brought new vision and
their own niche to advances
in care and treatment. John Holter pioneered
the first "silicone shunts," and created several popular shunt designs. EMI Records
funded the
invention of the EMI or 1st CT brain scanner that made the diagnosis of hydrocephalus
and many other disorders then possible. I undertook extensive FDA efforts, introduced the first home monitoring
test for CNS shunts, the DiaCeph Test, and have authored papers on shunts,
assistive technologies, and alternative therapies for the brain.
The most challenging
issue facing the use of CNS shunts continues to be in determining if and where a shunt may
not be working properly, termed a shunt malfunction. The next issue is in determining the best matched shunt system for
a particular patient prior to
surgical placement or revision, and determining the best opening pressure
in patients with programmable shunts.
Thirdly, chronic neurological changes in the brain due to long term hydrocephalus, such as inflammation of the
hippocampus, can manifest and mask as shunt malfunction or pressure
mismatch, misleading the neurosurgeon to mistakenly revise or reprogram a
shunt. Chronic neurological changes such as this must be evaluated separately
using PET (positron emission tomography), fMRI (functional MRI), and/or neuropsychological testing.
I reviewed 30 years of published
studies and "Freedom of Information" (FOI) documents, and eventually became
intrigued with an April 1996 Journal of
Neurosurgery study by Higashi, et. al. out of Japan. This
Japanese neurosurgery center demonstrated how state-of-the-art engineering and
laboratory studies could advance the understanding of CNS shunts. In addition, Higashi
cited the "need" for a new type of shunt test that
could identify the mysterious malfunctions that were occurring in anti-siphon
shunts (ASDs and SCDs). The fact that I was not able to receive proper corrective
surgery over a period of 5 years due to limitations in diagnostic testing and understanding
of shunts, inspired me to pioneer a test of my own. The critical issue raised by
Higashi et. al.
with the anti-siphon devices was what they termed, "functional
obstructions," where a shunt malfunction occurs due to the device's own internal design,
which in this instance, also occurred mostly undetected through
"false negative" findings on numerous standardized tests for shunt
malfunction. There was be no way of knowing without exploratory surgery, whether
the anti-siphon shunt or other component was the source of the patient's ills, and
whether shunt revision would resolve the
problem. In their
study, Higashi and colleagues cited the need for a new specialized test to evaluate these
complex
malfunctions.
In
late 1997, I finalized my design and algorithms
for the 
In 1998, the DiaCeph Test attracted the interests of
a
long time neurosurgeon, Eldon Foltz, M.D., at the University of California at Irvine
(UCI). Dr. Foltz helped me set up an advisory board, and brought in several field
consultants. With a little financial backing and guidance, a corporation was formed and the project
was moving forward. The DiaCeph Test was reviewed by staff of the National
Institutes of Health (NIH) as part of a University of California technology
conference. NIH was excited to fund this project on patient information technology,
and cautioned me to secure an accredited scientist to write
the NIH grant applications for development costs at the University of California.
The University of California had a policy prohibiting
university staff from writing such grant applications where the research and technology
was not conceived by the university.
True shunt matching
requires
an evaluation of each patient's individual CSF outflow needs, degree of shunt
dependency, height, weight, and approximate assessment of
ventricular (ICP) and
abdominal cavity pressures, and consideration of anticipated growth ( in
children).
The best known method capable of providing an accurate
scientific measurement of each patient's CSF outflow needs and degree
of shunt dependency is "pulse wave measurement," which is costly
and requires
the insertion of one or more needles into the CSF spinal pathway. This technique
had been explored by Eldon Foltz, M.D., at the University of California at
Irvine
in the 1980s. More recently, it was modified and is used commonly
by physicians such as Mike Williams, M.D., at John's Hopkins Medical Center, in
the
evaluation of NPH. Though this procedure has been helpful in confirming NPH and
other forms of hydrocephalus, for the full consideration of shunt
matching, the physician must still factor in patient height,
weight, and approximate abdominal cavity pressures when selecting a specific
shunt system. 
I believe new AI devices like "smart" mobile phones,
digital audio recorders, PDAs, digital cameras,
and various organizational devices and applications greatly aid the outlook and independence
of individuals affected by hydrocephalus. Smart phones like the Blackberry Bold
at left (which I have) offer a lot of features and inexpensive apps thru their
App World Store. I earlier discussed assistive aids in