The DiaCeph Test was created in 1997 to evaluate CNS shunt performance in patients with the disorder, hydrocephalus. It is a mathematical formula and algorithm born out of my experiences as a patient and patient advocate, and from 18 years of experience in diagnostic nuclear medicine, including, with hydrocephalus and software.
DiaCeph’s algorithm uses a weighted probability of a patient user’s clinical complaints, or complaint markers, to the most likely of (17) types of malfunctions that can occur with a CNS shunt. The results are displayed and ranked in order of probability. In addition, the markers are plotted on time vs complaint level graphs, where they are compared to the patient’s baseline markers and earlier shunt outcomes. The impetus for creating the DiaCeph Test came from my poor post surgical outcomes and frustrating diagnostic experiences as a patient user for hydrocephalus following a 1992 auto accident. I’ve used my DiaCeph methodology (paper forms) to track the shunt outcomes, make shunt valve pressure predictions, and diagnose shunt malfunctions for my last (8) shunt revisions. Still in 2016, there is no reliable diagnostic means to determine how well a CNS shunt is working. The DiaCeph Test could readily be made into a mobile app, providing the necessary funding, administrative, and FDA regulatory requirements can be satisfied.
The DiaCeph paper methodology could easily be produced as a mobile data app.
DiaCeph Test born out of FDA Petition/Unmet Need in Hydrocephalus
Hydrocephalus is the leading neurosurgical disorder in children, often resulting as developmental changes in utero, shortly after delivery, or by brain cysts early in life. It occurs in seniors in the form called NPH, or normal pressure hydrocephalus, and in the past NPH was often confused with dementia and/or Parkinson’s Disease. It can also occur following trauma and tumors in the brain. It is most often treated by surgical insertion of a “CNS shunt,” which the patient will live with the remainder of their life, and which are very problematic technology often requiring surgical replacement.
My DiaCeph data app slide above is from my original (1997) design of the DiaCeph Test. This came out of my research in authoring an important 1996 FDA petition on anti-siphon shunts. I was familiar with hydrocephalus and CNS shunts from my many years of diagnostic work in nuclear medicine, where I worked with software and regularly wrote procedures, and occasionally basic software code.
Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition that was then used to direct this 1998 shunt surgery
I had been a patient user of CNS Delta valve shuntsfor hydrocephalus since 1992, and had experienced unexplained poor outcomes from three surgeries over a period of four years. In 1996, I learned of a new critical study published in the Journal of Neurosurgery by a well known Japanese neurosurgery group, that cited specific safety & performance issues with Medtronic PS Medical Delta Shunts & Anti-siphon devicesthat seemed remarkably similar to complaints I was experiencing. Sadly, neither my treating physicians, shunt manufacturers, or the Food & Drug Administration were able to help me.
In November of 1996, I petitioned the U.S. Food & Drug Administration (FDA) Center for Devices and Radiological Health with this important FDA petition on CNS anti-siphon shunts, concerning problematic CNS shunt technology which I had been implanted for 4 years, and was experiencing unexplained poor outcomes. It was in 1996 that a critical study was published in the Journal of Neurosurgery regarding the risks of using anti-siphon devices. The petition took me almost a year to prepare, and required that I obtain supporting FDA records on microfiche, obtain and learn the federal government’s applicable CFRs to CNS shunts, pay a librarian consultant for many of the (52) cited studies, and carry on correspondence with Ralph Nader’s group Public Citizen.
What I learned, was that between 1976-1996, many thousands of patients had been implanted with MedtronicDelta valves & Heyer-Schulte anti-siphon shunts and that about one-third of these were experiencing the kinds of poor outcomes as cited in the Higashi et. al. J. of Neurosurgery study. Higashi and his team described these shunt performance issues as “functional obstructions” of the CNS shunt system, most of which occured in the upright posture. However, some were reported with sleeping and other external pressure over the body of the shunt valve. What made the problem particularly challenging, was that there was no available (in-vivo) diagnostic test to identify and quantify the issue in patients. Available CT/MRI and shunt patency testing was usually “negative” for shunt malfunction, which is termed a “false negative.” Higashi and his team then cited the need for a new type of diagnostic test to identify these shunt outcomes issues in affected patients. Once I authored my petition, my next challenge was in creating a new type of test to evaluate these shunt performance issues.
I sought out a method to chart & analyze non-invasive clinical markers in hydrocephalus in different postures, and during different times of the day. This was 1997, and the same year researchers at the U. of Pittsburgh and Henry Ford Institute, were quietly doing this to monitor sports concussion. It took me more than a year, during which I also consulted aerospace scientists on possible math formulas. Once it passed the first proof of design phase, I expanded my test to evaluate any type of problem with any type of CNS shunt. And then I aptly named it the DiaCeph Test. Dia– meaning to diagnose. And Ceph– meaning of the brain. The design and proof of concept were completed in Sept. of 1997. And then I began using it to evaluate my Delta shunt for corrective revision.
Initially, I was going to “give my method away” to one of the shunt manufacturers. But it was a friend from little league baseball who convinced me to try and PATENT it. Which I did via the law firm Knobbe Martens Olson & Bear. The photo above was taken just days after my Feb. 1998 shunt revision where I used the DiaCeph Test to help determine which type of shunt would fit my CSF outflow needs.
My experience in nuclear medicineand working with hydrocephalus and diagnostic software proved invaluable in the creation of the DiaCeph Test. Over my 18 years of nuclear medicine (beginning in 1975), I had authored hundreds of diagnostic procedures, set up hospital imaging procedures, started and run an imaging company, and provided diagnostics for a wide range of medical conditions. Two of those tests for hydrocephalus were cisternograms and shuntograms.
In 1997, my DiaCeph Test was so new, it didn’t have a category name. But today, these type of applications are widely termed, “mHealth.” As such, my DiaCeph Test design was one of the earliest mHealth tests, and remains state of the art still in 2016. But, designing it was no simple task. I had to contend with frequent cognitive or memory difficulties, shunt malfunctions, terrible headaches, and lack of funding.
In 1998, I filed my full patent on the DiaCeph Test and formed the start-up, DiaCeph, Inc. DiaCeph was to be a dedicated PDA app, like the Palm Pilot that had just become available. The Internet at that time was just mature enough then to allow patient data and results to be sync’d with a PC either at the patient’s home, or at the physician’s office. I proposed how a server could allow uploading & sharing of patient results.
DiaCeph can analyze non-invasive user data and render a diagnosis of the type of shunt malfunction. I created a series of clinical markers (as can is seen in the slide above), and by establishing a patient’s baseline normal values, incident results could be compared and produce a diagnosis based on the change from normal. Where there was no comparitive data, the program still aggregated resulting data and compared it with the most likely data known by the program for the different types of shunt malfunction. I was advised that patients not be given access to the results by FDA and others involved in the project. Today we know its best to give patients this information. Below, is earlier web site information on the DiaCeph Test. Below that, an Orange County Business Journal‘s 1999 story about the DiaCeph Test entitled, “The Accidental Inventor.”
Stephen Dolle, Dr. Eldon Foltz, and Stephen Natawpski of Knobbe Martens are interviewed by the Orange County Business Journal regarding the invention of the DiaCeph Test, and Stephen’s FDA efforts in Washington, D.C.Stephen Dolle interviewed in the Orange County Business Journal for his FDA efforts and DiaCeph Test invention Page 2
DiaCeph underwent initial evaluation and development at the University of California Irvine (UCI). My lead physician was the long time neurosurgeon and professor, Dr. Eldon Foltz, who was excited about the DiaCeph Test and offered to mentor me. He shared he had been trying to develop a similar test since 1980. Dr. Foltz helped me form a board of medical advisers at UCI, and introduced me as an mHealth pioneer.
After the FDA granted my shunt petition in Sept. 1998, I was invited to attend the FDA’s STAMP Technology Conference in Bethesda, MD, which was to address shunt safety issues as cited in my petition. However, the conference never did! Nor were these CNS anti-siphon shunt challenges discussed, nor DiaCeph mHealth concept. And neither was I was not invited to appear on the conference panel, despite being the person who helped create the conference. As a result, my DiaCeph Test and similar solutions never received the exposure they deserved. It no doubt hurt prospects for the DiaCeph Test at a time it was badly needed, and amid my limited resources as a patient developer.
As time went on, I looked for new novel ways to utilize the DiaCeph methodology. Below, are SlideShare.net slides of new (July 2016) DiaCeph Test NPH Instructions, a NPH 6-Marker Form, and a new Chronological Outcomes Form or “flow chart” for creating a patient record of many years with various shunts, opening pressure settings, and hydrocephalus outcomes (complaints/status) in a patient. There are instructions on how to complete the historical flow chart in the back of the NPH instructions.
These materials are FREE to use. But if you have questions or would like my assistance with monitoring or related hydrocephalus and shunt issues, please contact me directly. My consulting rates are $125 per hour.
Diaceph 5 day 7 marker NPH hydrocephalus shunt monitoring form
DiaCeph Test MONITORING INSTRUCTIONS
DiaCeph Test MONITORING FORM
DiaCeph Test FLOW CHART
DiaCeph, Inc. as a Brain Software Company
By 1999, I was exploring other brain apps & software and making plans for this as part of DiaCeph, Inc., to be an innovator in this space. This was prior to the advent of Google apps, social networking, and mobile tech leaders like Samsung and Apple. At that time, the only two mHealth apps under consideration were by Aetna’s health division for CHF and asthma. I was also in communication with Hewlett Packard, Microsoft, the Coleman Institute, and other institutions involved in assistive cognitive technologies. I presented DiaCeph to a number of university centers and medical device companies. But I could not get any committments to partner or fund it. Apparently, no one saw my vision.
By 2003, I had begun to move on to other neuroscience interests. My brain also remained significantly swollen due to unresolved and mis-understood hydrocephalus, and kept me on disability, working only part time. I could not get a neurosurgeon to undertake additional surgery without diagnostic documentation. It was a Catch 22! I believe if the DiaCeph Test were available then, it would have answered these diagnostic questions.
In the end, the DiaCeph Test was never made into a PDA app due to lack of funding, FDA regulatory barriers (costs), and lack of support from medical device companies in the field of neurosurgery. However, DiaCeph could still be produced today as a mobile data app. I wrote up a “creative brief” in 2014. The challenge now lies mainly in the FDA regulatory costs of mHealth apps, where estimates have said to be in excess of $1M. It is doubtful this cost could ever be recouped in sales of the app. So I prepared wider prospects for other neurological apps in my expanded Creative Brief.
Hydrocephalus today still faces considerable mis-diagnoses due to unavailability of imaging and mHealth solutions. Radiologists regularly mis-interpret CT and MRI brain scans, which leads to undiagnosed shunt malfunction and incorrect settings of programmable shunts. This in turn has resulted in significant quality of life issues and costs for patients living with hydrocephalus.
Below, is a screen shotof a CT/MRI mHealth Display method I’ve been using since about 2002. This helps to organize CT and MRI scans into useful formats for review by your physicians, especially when there are many scans over a period of years. At present, the link is to a blog I authored on LinkedIn. I hope to sometime elaborate further on this in a new company blog. I also consult on preparing these at my same $125 per hour rate.
Innovative Dolle mHealth method allows CTs & MRIs to be chronologically oarranged and compared.
You should obtain CDs of all your CT/MRI brain scans. The method allows for review of 1000s of CT & MRI images by placing the most critical images in a chronoligcal sequence for comparison. These displays can also reduce interpretation medical errors.
To create these, I first create folders on my PC for each CT or MRI series. Then I export the images as JPEGs into the respective folders using the media software included in the radiology CD disc. Next, I review, select, and label the relevant images and copy them to special forlders where I arrange them in chronological order for better viewing. This format makes interpretation much more scientific, and it minimizes any human (visual) error during interpretation.
This method is particularly important in hydrocephalus care – where it is common to have dozens of studies and 1000s of CT and MRI images for review. This mHealth display method would benefit radiologists, neurologists, and neurosurgeons involved in hydrocephalus care and other care involving CT and MRI studies.
This method allows for more detailed evaluation of shunt settings, shunt performance, and shunt malfunction. I put these mHealth methods to good use in my hydrocephalus consults and shunt monitoring services.
Once you have assembled the critical MRI/CT Images Folders, they can be easily sync’d and copied to folders on your mobile phone and tablet device. Then when you see your physician, you’ve got all your CT and MRI images neatly organized for review.
Below, is a diagram of my current shunt valve, the Codman Certas valve, which was implanted in Nov. 2012. However, in May 2013, it was recalled due to stability issues during MRI exams.
Illustration of the Codman certas valve, an externally adjustable programmable CNS shunt valve with 7 pressure settings, and is used in the treatment of hydrocephalus.
The DiaCeph App today could be made as a mobile data app and text app (for use in developing countries). It would enable 24/7 monitoring of hydrocephalus and could be coupled with a variety of neurological, EEG wave, and other apps now available.
I’ve been providing NPH/Hydrocephalus Monitoring Services & Patient Consults with DiaCeph paper forms/instructions since 2009. I also host FREE monitoring forms and information on hydrocephalus. My experience with hydrocephalus now spans 18 years of diagnostic work in nuclear medicine, and 21 years in FDA regulator affairs, CNS shunt reviews, mHealth design, cognition and assistive technology, drumming & music therapy, and global patient consults for affected individuals/families around the world.
I also host two consult reports on the top blog above (Hydrocephalus NPH Monitoring by Stephen Dolle). The first report was completed by a legally blind man. I provide each patient a custom set of forms and instructions. If an mHealth app were available, it would direct patients or users in the collection of this data, and then offer physicians the data in a finished format for earlier diagnoses, intervention, and surgery.
The Terminator is the ultimate super-hero for adults and children affected by hydrocephalus.
Early on, after I was implanted with a VP shunt for hydrocephalus, I began to seek creative comfort in stories about Super Heroes. As an inventor, I also began to equate living with a CNS shunt implant to the Terminator character in the movie of the same name. Eventually in 2013, I created a fun web site and Facebook page for hydrocephalus – where I began to write about “super-heroes” for hydrocephalus. Here I am today pictured below in a current photo following a speaking engagement. My rates are very reasonable, and I have a list of topics I speak on. Contact me for more information of this.
I have undergone 12 brain operations, or shunt revisions as they are termed, since my initial diagnosis in 1992. I became a shunt device, hydrocephalus “expert,” and early inventor of an mHealth mobile app, the DiaCeph Test. It was my 1996 petition to the Food & Drug Administration as a CNS shunt patient that led to my designing the DiaCeph Test. My efforts then helped bring about the 1999 International STAMP Conference in Washington D.C. At that time, many in industry felt the conference and FDA upholding my petition were heavy handed actions designed to hinder innovation in industry. But in the years since, it has been shown to be just the opposite, that without mHealth tools and patient engagement, there will be less innovation, more challenges for physicians, higher costs & disability rates for patients, and a lower quality of life for those affected. It is time for industry, FDA, and Congress to stand in our shoes! In 2015, I also published my current health challenges with hydrocephalus and a related neuromuscular disorder on my blog in this case study.
Many of the CNS shunts in use today are programmable shunts, where pressure and flow rate can be externally adjusted for each patient. But, many of these devices have been susceptible to inadvertent reprogramming from household appliances and technology magnetic fields. At present, FDA does not allow patients to own the reader or programming tool to help manage these unforeseen events. I would love to develop a mobile app or accessory tool to allow patients to check the setting of their shunts.
Other Brain Apps
I use other brain apps on the Android Play Store to help with the management of hydrocephalus, including, a Decibel Meter, EMF Detector by Smart Tools, and a Weather & Barometric Pressure app by Elecont Software. The more recent availability of EEG readers has further elevated the prospects of brain apps in neurological care, and in meditation and mindfulness – SEE my other blogs for information on these.
I advise and write about brain apps, often helpful in hydrocephalus and other neurological disorders. In this blog, I share tips on design & using apps:
The slide image below is the barometric pressure reading from my Elecont weather app.
The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.
DiaCeph Development Costs and Other Barriers
Estimates to develop a hydrocephalus mHealth app are as high as $1M. Requirements by FDA are driving these high costs. In developing countries, FDA guidance does not come into play. And for those regions, a “text app” version of the mobile data software could be created to do monitoring on a standard mobile phone, and text the results to a regional hospital or clinic. My DiaCeph Creative Brief is currently 16 pages. I understand this is too large for most reviews. So I am preparing a “short” and “long” version.
I understand there are organizations who could help develop or fund my mHealth app project. My wish would be to work with a mHealth software group and provide the guidance and expertise to develop the DiaCeph app, and then advise on other applications.
Currently, development of mHealth apps for disease management have become a political ball game between patient advocates, the Food & Drug Administration or FDA (backed by big corporations), and Congress. Earlier this year, a bill was introduced in Congress by Senators Deb Fischer (R-Neb.) and Angus King (I-Maine), identified as the PROTECT Act(Preventing Regulatory Overreach To Enhance Care Technology). The bill has garnered the support of IBM, athenahealth, the Software & Information Industry Association, and Newborn Coalition and McKesson.
Shortly after introducing the act, the legislators penned an editorial in USA Today calling FDA’s regulatory process burdensome and a hindrance to innovation. One organization, with connections to big pharma lobyists, calling itself the mHealth Regulatory Coalition (MRC), has come out and opposed it. But I suspect they don’t live with a medical condition like hydrocephalus, that would benefit from these mHealth app innovations.
Many individuals with hydrocephalus have had 100 and 200 surgeries, and live a very poor quality of life. Quality of live, and unnecessary brain surgeries, would no doubt be improved with the availability of mHealth app diagnostics.
If you are interested in development of the DiaCeph Test, obtaining a hydrocephalus consult, mHealth consulting, or my speaking at an event, please contact via the information below.
I need my DiaCeph Test to be made available as an mHealth app for people w/ hydrocephalus.
NOTE: This blog was just put back online on Aug. 29, 2021
In March of 2015 I posted the following “health information” on my blog as a “case study” on a complex autoimmune health problem I’ve been battling since 2009. I am hoping by sharing it here, that might lead to answers and a sort of “open source medical cure.” By 2018, without any answers and an HMO plan which was restricting my getting those answers, I took it “off-line” because I felt it might lead to biases in work and personal/social activities. Then on Aug. 29, 2021, with the world still in the grips of the Covid19 pandemic, with restrictions & delays in many everyday medical services, I decided to put this back “online” as I think I am getting close to receiving a “diagnosis.” There is also a parallel between my autoimmune case study, and the Covid19 pandemic, in that both are centered around autoimmunity, and each of us must be healthy enough to produce “antibodies” from either natural immunity after a Covid19 infection, or after vaccination by one of three available Covid19 vaccines. As I earlier worked with “infectious diseases” (AIDs, TB, staff, hepatitis) in earlier nuclear (owned & operated Certified Nuclear Imaging” from 1982 – 1992), have accrued a great deal of expertise in public health from my public health work with CNS shunts, and have spent the last 10 years learning “auto-immunity” trying to solve my own autoimmune disorder – I really feel like I have some expertise or insights to offer in Covid19.
The photo at top is me pictured two days after my 5th brain shunt surgery (Feb. 1998) for hydrocephalus. My own CNS shunt complications led to me becoming a patient advocate, neuroscientist, and inventor of the DiaCeph mHealth Test for hydrocephalus that I’ve used to co-direct my last 8 brain shunt surgeries, and provide consults and related patient care information around the world. I also became involved in music therapy, and eventually “drumming,” or drum circles, and then a drum circle facilitator.
In 2009, I began to experience muscle cramping which began to cause blood in the urine, and partial kidney failure, after the rigorous exercise of some of my drumming events. Two years later, I was diagnosed with Hashimoto’s Thyroiditis, fatigue and worsening muscle complaints, dry eye, rashes, anemia, eosinophilia, bone pain, and in 2015 “meningeal enhancement” on my MRI brain scan with Gadolinium. The MRI finding was eventually diagnosed as “pachymeningitis,” which is non-infectious inflammation of the meninges, or the lining covering the brain and spine, and I was placed on corticosteroids (primarily prednisone). I also live with a VP shunt for hydrocephalus since 1992. The actual cause or diagnosis of my pachymeningitis has yet to be identified. Further below is my 2015 CSF lab report, and MRI brain scans that evidence dura enhancement and pachymeningitis. I now have NEW 2021 MRI imaging results and lab work after being off prednisone for 18 mo, plus upcoming appointments with specialists that I think will put me closer to a diagnosis. MRIs of my brain, cervical, and thoracic spine with Gadolinium show diffuse “meningeal enhancement” down into my thoracic spine. This is thought to be from “chronic intracranial hypotension” from overdrainage of my CNS shunt for hydrocephalus. But I am skeptical of this as the diagnosis as I’ve experienced overdrainage in the past, and know how to identify and manage it with a programmable shunt. The biggest challenge I think, is diagnosing an underlying autoimmune disorder and noninfectious meningitis in the presence of hydrocephalus. I will share more in the coming weeks.
I need an immediate convening of scientists and FDA regulatory staff to sort thru the current roadblocks to progress & safety of CNS shunts for hydrocephalus.
My hydrocephalus history spans 1992 to present with a total of (12) CNS shunt operations, or revisions. The shunt complications, poor outcomes, and confusion in my care during those first few years led to my doing field research, activities as a patient advocate, and then authoring of this important 1996 Food & Drug Administration petition on anti-siphon shunt devices that led to the 1999 FDA STAMP Conference in Bethesda, Maryland. In the interim two year period that FDA reviewed my petition, I researched and designed my DiaCeph mHealth Test shunt monitoring system, and was bestowed the title of “scientist” for my efforts without attending school again for a masters or PhD degree.
As for my medical patient experiences, along with 12 surgeries and hundreds of shunt malfunctions, accidental reprogramming of my shunts, and numerous embarrassing and personal challenges, I’ve also undergone about 70 brain scans, half or more of those being CT scans with the associated radiation exposure. I’ve also underwent 4 or 5 procedures where foreign substances (dye & radio-tracers) were injected into my shunt system that can lead to infection and CNS complications.
Unfortunately, I could never get the requisite funding or support for my DiaCeph Test and DiaCeph Inc. startup, which would have enabled early reporting and sharing of data on shunt devices. My company plans were to also pursue “brain apps” which I had been researching, and minimally available on PDAs at that time. Without availability of my DiaCeph Test, it took some of the best neurosurgeons 16 years (2008) and 6 revisions to get the swelling on my brain returned to normal. In 1998, I shared my DiaCeph Test to Dr. Eldon Foltz, chair of the Dept. of Neurosurgery at the University of California at Irvine. From 1998 on, I used the DiaCeph Test’spaper forms & instructions for pre & post surgical diagnostics and status assessment. Since 2009, I have been providing shunt monitoring consults to patients and families around the world. Today also health and safety failures with CNS shunts continues to be a considerable problem.
My primary health issue today surrounds a yet to be diagnosed autoimmune disorder and chronic meningitis. It may have been “triggered” by numerous invasive procedures and stresses of my shunt revisions. Or it may be a worsening of a childhood disorder tentatively diagnosed as a peripheral neuropathy in 1980. Without good health insurance, solving this riddle has been elusive. Since 2009, my complaints have worsened and become more systemic without any diagnosis or effective treatment or pain management. My present insurance is a United Healthcare managed care plan, and they have put up barriers to care, causing me to file (4) “grievances” between 2012-2015, and I have also put my privacy at risk in this case study.
Feb. 7, 2017 UPDATE:
In this most recent update, I share a new Rx order for a more detailed CSF (cerebrospinal fluid) lab test. I was given this order in early Dec. 2016, but am yet to undergo the labs due to uncertainty over discontinuing Adaptogens and Nootropics supplements which have brought some relief in my complaints in recent months. In late 2015, I authored this Blog on Nootropics from my research. My initial goal was to replicate the cognitive benefits I experienced in 2015 from the Exelon Patch drug. And secondly, to see whether Adaptogen herbs might bring relief to my pain and fatigue. And both did to some degree.
My recent improvement in late Dec. 2016 led to raising the pressure setting on my Certas hydrocephalus shunt valve – from a setting of “3” to “4.” This change is important as my shunt setting had earlier been down to “2” for 3-4 years due to low intracranial pressure (ICP) from the dura (brain) inflammation. I am yet to update my Nootropics blog with my latest findings, but I expect to over the next month. Below, are three images of my current supplements. The 2nd image also denotes via text: Modafinil, Prednisone, and Synthroid – which are drugs that produce “systemic” changes in the body. More recently, I’ve also added Alpha GPC to my daily Nootropics.
Primary Daily MultivitaminsPrimary Adaptogens and Nootropics SupplementsPrimary Smoothie Ingredients
As much as the above supplements provided some relief in my complaints, I am uncertain which ones provided the benefit. I have also just learned that several of the Adaptogens, specifically Panax Ginseng and Ashwaghanda, also boost immune function, and this in turn diminishes the effect of my Prednisone. I could not get a definitive answer on Maca Root. I had noticed intermittent relief & worsening pain over the last 3 months. This new information by Natural Medicines then explains it. And I need to learn which of the above supplements I need to discontinue prior to this next round of CSF labs, and for how many weeks. And after this test, I need to decide what combination of Prednisone and supplements would be best. Should there be a definitive diagnosis, that will be very helpful.
Below, is the order slip for this next round of CSF labs. As I stated, it is unclear which supplements & prescription drugs I should be off, and for how long (Q1). This likely includes Prednisone, Panax Ginseng, and Ashwaghanda, and perhaps others. I have delayed this test due to these outstanding questions, and in transitioning off, and back on, these supplements. Perhaps I shouldn’t even be on them? I’d also like to know if there are additional CSF tests to add to this Rx list (Q2)? A CSF sample can be readily accessed thru my shunt reservoir under my scalp with relatively low risk.
CSF Lab Order Dec 2016 to r/o autoimmune disorder spec attn pachy meningitis
This concludes my Feb. 7, 2017 status update. I am encouraged. The biggest abnormality in my CSF cell count (2015) is a low WBC count (lymphocytopenia). My protein level was also elevated. And I have had an elevated blood absolute eosinophils count and low “RBC” levels for much of the last 5 years. But my Oct. 2016 blood labs were in the normal range – after 10-12 months of supplements. I have also obtained and reviewed new autoimmune studies relating to dura inflammation and CSF testing which are applicable to my case history. Earlier in 2016, both my muscle biopsy & genetic tests (UCLA) were negative.
History Continued:
The history of my current neuromuscular complaints (beyond my earlier controlled peripheral neuropathy) arose in 2009 with hematuria (myoglobinuria) and subsequent kidney failure following a 4-hour drumming event, initially diagnosed as rhabdomyolisis. At that time, I had little neuromuscular cramping or pain other than in my back and lower legs that were well controlled with exercise. After this 2009 hospitalization, my cramping and extremity pain turned and global fatigue and affected the use of my hands and physical activities, with episodes of myoglobinuria and cramping occurring at lower thresholds of activity.
In late 2011 I was diagnosed with Hashimoto’s thyroiditis, thought secondary to an autoimmune disorder. And since 2012, my complaints have escalated to considerable global pain and cramping, fatigue, cranial nerve palsies, low intracranial pressure (ICP), and cognitive challenges beyond that of hydrocephalus. In late 2015, the dura inflammation was diagnosed as pachymeningitis (UCLA) esp after my positive response to Prednisone (SEE MRI below where ventricles collapsed after Prednisone). In my Oct. 13, 2016 update, I added photos and discussion regarding my childhood health issue, where drooping on the left side of my face/mouth can be seen as early as age 11.
I take a low dose Prednisone (2.5mg ea other day) that slightly helps with pain and cramping. Due to effect of Prednisone on my ventricle size (hydrocephalus), this has to be closely monitored with my DiaCeph Test & MRI brain scans, with adjustments in the pressure setting of my programmable Certas shunt, which has also been recalled and not yet revised. I need a mHealth app to sort this all out.
In January 2016, I hospitalized for a sepsis infection felt due to Methotrexate and Azithioprine I had been on for a few months. It did resolve much of the dura inflammation on MRI brain scan with Gadolinium, lending support to the pachymeningitis diagnosis. And in May 2016, I underwent a muscle biopsy with consideration of a mitochondrial disorder. However, the muscle biopsy was negative. There was some question if I was off Prednisone long enough.
In Oct. 2016, a brain tissue biopsy was proposed. But my neurosurgeon has advised against it. In my research, I focused on my abnormal CSF cell count, particularly my very low lymphocyte count seen in the image below. My other WBC counts are moderately elevated. Many CNS disorders today are identified in CSF counts. Please comment at bottom if you have familiarity with disorders that might cause this type of CSF count.
CSF cell count obtained via CNS shunt reservoir demonstrates elevated WBCs with a surprisingly low lymphocyte level.
Here’s what I need as of Feb. 7, 2017:
In Aug. 2016 I was referred to an immunologist at UCI Medical Center. But my United Healthcare plan denied it, instead referring me a rheumatologist with Great Newport Physicians, who ordered a brain tissue biopsy and this new CSF lab tests. At this time I need: a) A list of medications & supplements to be OFF, and for how long for the CSF lab test. b) Recommendations of any additional tests that might help identify my disorder.
I would like access to medications like the Exelon Patch (memory drug) & pain medications that support quality of life. Trash-men, freeway workers, and government union workers can get these medications. Denying these medications to others in need is a form of inequality & discrimination.
I would like scientists and FDA to convene & expedite development of new safer CNS shunts, an ICP sensor and/or mobile app like my DiaCeph Test to monitor 24/7 CNS shunt function in hydrocephalus, and put an end to health and safety dis-information with CNS shunt technology.
I would like NIH to convene scientists and address the epidemic of PTSD (post traumatic stress disorder) and SPD (sensory processing disorder) – and make recommendations for testing, treatment, and accommodations in public places, and help mitigate the practice of loud audio media (TV/radio) in commercials – that affects 10-20 percent of Americans.
I need samples of the Novartis Exelon Patch to help me with memory challenges as a result of complications with my hydrocephalus and chronic meningitis. My plan does not cover the patch.
Exelon Patch memory drug by Novartis
Use of the Exelon Memory Patch really is an accessibility issue in the presence of neurological disorder or brain injury. I doubt any health plan would deny an accommodating aid to a blind person or individual confined to a wheelchair. But, brain disability, it has no voice!
As for my United Healthcare health plan, between 2012 and 2014, I had to file five (5) appeals & grievances in order to receive treatment, that led to unnecessary delays. I have also suffered a number of medical errors, the most significant recent one was misdiagnosis of dura inflammation on my Feb. 2012 MRI brain scan with gadolinium. The inflammation wasn’t discovered until February 2015. Then it took another six months for Prednisone to surprisingly collapse my ventricles. And then a ton of research and advocacy on my part for my UCLA neurologist to make the diagnosis of pachy meningitis. And it is only a partial diagnosis.
Pachy meningitis is inflammation of the brain usually secondary to another disorder, which, in most cases, is an autoimmune or neuromuscular disorder. It was my innovative mHealth efforts after the collapse of my ventricles (hydrocephalus, treated w/ CNS shunt) in June 2015 while on Prednisone, that led to the pachymeningitis diagnosis. I am hoping my case study blog can also become a teaching experience on mHealth.
March 21, 2016 Status Update
Currently, I am awaiting scheduling of a muscle biopsy for evaluation of myositis and mitochondrial disorder. However, it is being complicated by delays by my United Healthcare HMO plan who is issuing the authorization. This likely would have been done back in 2012. I am taking a low dose of Prednisone which helps with cramping and pain. But, I will have to be off this for 4-6 weeks before the muscle biopsy.
It was on Dec. 28, 2015, that I learned dura inflammation was present back on my Feb. 2012 brain scan – but was missed by the radiologist. It was serendipity and my innovative MRI mHealth method of brain scan images I exported to my Nook tablet, that helped make these discoveries possible.
Innovative Dolle mHealth method allows CTs & MRIs to be chronologically oarranged and compared.
My MRI/CT mHealth Method: Since 1999, I’ve gotten CDs of my CT/MRI brain scans. Prior to that, I obtained copies on film and would photograph them. As of 2016, I’d undergone about 60-70 brain scans, along with 12 brain shunt surgeries. It was about 2002 that I created this mHealth display method to feature my own brain scans in my Shunt Selection Study on my web site for hydrocephalus. This method allows for review of 1000s of CT & MRI images by placing critical images in a chronoligcal sequence for review. Use of these displays would also reduce interpretation medical errors.
I first create folders on my PC for each interested CT or MRI series. Then I export the images as JPEGs into the respective folders using the media software program included in the radiology CD disc. Next, I review, select, and label the relevant images and copy them into another folder, where they can be arranged in chronological series and be viewed side by side. This format makes interpretation more scientific, and minimizes the possibility of human (visual) error from misinterpretation.
This method is particularly important in hydrocephalus care – where it is common to have dozens of studies and 1000s of images to be reviewed. This mHealth display method benefit radiologists, neurologists, and neurosurgeons involved in hydrocephalus care. This method also allows for more detailed evaluation of shunt settings, shunt performance, and shunt malfunction. I have also put these mHealth advances to good use in my hydrocephalus consults and shunt monitoring services linked below:
Once I have assembled the critical MRI/CT Images Folders, I can easily sync and copy the folders onto my phone and tablet. Then when I see my neurosurgeon or neurologist, I’ve got all of my brain images neatly organized for review and discussion.
It was during my Dec. 28, 2015 visits to discuss my post Methotrexate & Prednisone MRIs, that each (serendipitiously) observed pachy meningitis was present on two Feb. 2012 MRI images w/ Gadolinium I had in the display. I included them when I published this blog in April 2015, but didn’t think the images were comparible as they were from different series. These specialists see these studies every day and picked up on the abnormalities right away. I’m just the mHealth inventor! But I regularly get asked to demo these displays.
I’ve really been deteriorating since 2012, haven’t been able to keep up with drumming and other responsibilities because of widespread cramping, pain, and fatigue. On many days, I did not get out of bed until 11 a.m. or noon, and other days I’d return to bed by early afternoon. I wasn’t able to share this for fear of losing the little work I was doing.
Drumming helps seniors engage and raise spirits for better health
My neuromuscular challenges are in addition to challenges I’ve faced with my CNS shunts, where manufacturers were aware of safety issues, but failed tonotify FDA. I know this because I became a patient advocate in 1995 and keep abreast of shunt issues. Failing to report shunt safety issues has been the rule, which I discuss later in this blog.
Currently I am awaiting scheduling of a muscle biopsy for the progression of complaints that seem related to a neuro-muscular disorder for which a biopsy was done in 1980. I also seek answers in these Healing Arts (blog) and Alternative Medicine (blog). UCLA Medical Center has two healing arts centers: The Norman Cousins Center for PsychoNeuroImmunology and the Mindful Awareness Research Center.
My 1992 Auto Accident – Diagnosis of Hydrocephalus
Brain Diagram of Ventricles often Enlarged in Hydrocephalus
The MRI brain scan below was taken one month post trauma and reveals very large ventricles suggestive of longstanding ventriculomegaly – which likely worsened with the accident and concussion. It’s speculated that I may have had a very small subdural bleed on my right side causing further ventricular enlargement because my right ear drum was “red” on exam one day following the accident. No brain scan was performed. It wasn’t until 4 weeks later, when I developed severe headaches and marked confusion (didn’t know what side of the street to drive on), that a brain scan was done (1992 below). This accident was caused by a 17 year who ran a red light, prior to mobile phones. I was returning home from volunteer duties at the 1992 Great American Raceawards banquet, where I had been on a chamber arts committee to raise money for Costa Mesa arts. As they say, “No good deed goes unpunished!”
In support of hydrocephalus, and my yet diagnosed neuromuscular disorder, I would like to share my Hydrocephalus Blog for Rare Diseases Day. Seems one’s duties never end!
MRI Brain reveals hydrocephalus 1 month after an auto accident & concussion.
Earlier in 1980, I had been diagnosed with an unspecified neuromuscular disorderthat had been causing me considerable pain and weakness in my legs and back, that I had been battling since my early teens. With a poor prognosis not offering much hope, I delved into the healing arts which proved to provide a great deal of relief. It even led to skills as a medical intuitive, corroborated in my clinical imaging work. This Healing Arts Blogdocuments these unusual 1981 healing experiences. I had a remarkable remission of this neuro-muscular disorder and managed it quite well until about 2009, when I began to develop unexplained hematuria/kidney failure with urine pictured below when I undertook rigorous exercise and hand drumming.
Photo of very dark urine containing blood & proteins following hand drumming.
By 2012 these bouts had significantly worsened and were occuring at lesser levels of exercise and drumming. I would load up (hydrate) with water and Gatorade before, during, and after drumming and physical activities. But as you can see in the photo, sometimes I couldn’t overcome the effects of this disorder with hydration. On two occassions, I was hospitalized. On perhaps 12 or 15 others, I self treated at home with fluids, urine measurements, and photos like you see above for my records. Today, these complaints are thought connected to my pachy meningitis and Hashimoto’s thyroiditis via an anto-immune or metabolic disorder.
Dura Enhancement = Pachy Meningitis
In February 2015, a CSF culture was done and revealed marked abnormalities in WBCs suggestive of inflammation, but not for infection (SEE JPEG report further below).My neurosurgeon felt it represented chronic shunt overdrainage and intracranial hypotension. But neither my clinical history, nor above-sized ventricles on my brain scans, coincided with chronic overdrainage as reported in the medical literature.
My case study then seemingly began to surround these findings of diffuse dura enhancement – suggestive of either chronic non-infectious meningitis or chronic overdrainage syndrome. I began to do considerable online research to explain the dura inflammation and increasing pain, cramping, and fatigue.
Then in June 2015, a one month planned trial of Prednisone serendipitously helped to shape an explanation for the dura inflammation. This 13-day trial (10mg/day week 1; 5mg/day week 2), led to my ventricles draining out with my Certas CNS shunt valve set at “2,” where it had been for the past 3 years. The “2” setting is the 2nd lowest of 7 settings. I immediately discontinued the Prednisone, and my Certas valve was raised up to “3,” where previously it had caused me headaches and cognitive difficulty. Since about 2012, my ICP had also become lower. In Feb. 2015, it was measured to be “1” cm H2O.
In October 2015, the dura inflammation was formally diagnosed as pachy meningitis. Methotrexate and Azithioprine were then separately given, but led to a hospital admission in January 2016 of sepsis and atrial fib associated with my kidneys. This led to an order for a muscle biopsy, and I was instructed to stay off Prednisone and similar drugs until after the biopsy. However, my only substantive relief so far has been Prednisone. And I went back on a low dose in the interim until the biopsy is scheduled.
Where’s the mHealth?
On February 12, 2016 – my health plan added to the confusion when they issued an authorization for my muscle biopsy with a 14 day window. But I have to be off Prednisone for 4-6 weeks. And I’m concerned about the recovery time from a deep cut into my right thigh while having balance difficulties and muscle cramping. Where’s the mHealth? Here’s one on my blogs on Design & Best Use of mHealth Apps.
In light of my considerable efforts since 1992, many have suggested I write a book. More recently, others suggested I become a TED Speaker. I’ve also been very innovative with drums and rhythms for health and brain enhancement. In fact, it was drumming that helped me overcome many of my challenges with hydrocephalus.
Since about 1998, I have been providing global online information on hydrocephalus and CNS shunt devices, initially as an FDA patient advocate, then as an mHealth inventer turned medical device consultant. In 1997, I designed & patented an mHealth app for hydrocephalus, the DiaCeph Test, that would run on a PDA. But I could never get funding or get past costly FDA regulatory hurdles to bring it to market. Prior to my 1992 auto accident, I spent 17 years as a nuclear medicine technologist where I owned my own company, Certified Nuclear Imaging, from 1982 to 1992. I had also provided instrument feasibility and regulatory affairs consulting.
Feb. 13, 2016 UPDATE
This update includes an Oct. 2015 diagnosis of pachy meningitis by my neurologist based on diffuse dura inflammation in my Feb. 2015 MRI with Gadolinium, my dramatic response to prednisone in June 2015, my CSF culture, and cranial nerve palsies.
My progress in global pain, cramping, fatigue, and cranial nerve palsies continued into October 2015. In November, my neurologist suggested I take methotrexate. Prednisone was doubled to 5 mg 3x per week. I soon suspected I has having intracranial hypertension per increasing headache. This was reported with methotrexate in the literature.
A repeat brain scan with Gadolinium was done Dec. 23, 2015 and revealed the dura inflammationto be improved and only remaining in spots. But there was evidence of increased ventriculomegaly beyond my Feb. 2015 baseline brain scan. The increase was thought possibly due to methotrexate and Certas valveat the higher “3” setting since June 2015. I was somehow tolerating the larger ventricles perhaps due to the immune suppressent meds. There was also quite a dramatic difference in ventricle size between the Dec. 2015 and June 2015 scans.
In further review of my brain scans on Dec. 28, 2015, dura inflammation can be seen on an earlier Feb. 2012 MRI with gadolinium, but was never reported. At that time, my only confirmed test results for an autoimmune disorder were for Hashimotos Thyroiditis. There had also not been any detailed CSF culture. Knowing of the dura inflammation then would have dramatically altered the course of my testing and treatment.
With evidence of new ventriculomegaly in my above Dec. 23, 2015 scan, methotrexate was discontinued and I was placed on azithioprine (50/100/150 mg). But in week 3, I began to experience chills and night sweats and presented myself to the emergency room, where it was discovered I had a sepsis coming from my kidneys. I spent two days in the hospital where my immuno suppressant drugs were discontinued. In follow up visits, my neurologist discussed the possibility of a mitochondrial disorder, and that it too would produce a dramatic CNS response with prednisone. So a muscle biopsy was proposed and is now being scheduled.
I frustrated and concerned with the number of mistakes in my care. I am told I need to be off all immuno suppresant drugs (i.e. prednisone) for at least 4-6 weeks before the muscle biopsy. But with so much pain and fatigue, I went back on low dose prednisone until a firm muscle biopsy date is set. I would also like to explore relief thru alternative medicine as I had excellent result in past years. I’ve written these blogs on Complimentary Medicine & Addiction and Nootropic Vitamins for the Brain.
Sept. 9, 2015 UPDATE
Without support from a rheumatologist or my neurosurgeon, I contacted a neurologist in India who published a paper on chronic overdrainage syndrome, and a neurologist in Philadelphia who authored a paper on chronic meningitis. Neither would comment.<
The medical literature on dura inflammation and chronic meningitis recommended oral corticosteroids, which included prednisone. I spoke again to the prednisone manufacturer who reiterated my dramatic response to prednisone was likely an anti-inflammatory mechanism. With that in hand, I discussed with my internist about trying a low dose of prednisone in an effort to try and manage my pain and fatigue levels. We agreed on 2.5 mg every other day and I started on it on Aug. 7th, 2015.
After 6 weeks on this regimen, I saw a 10-25% reduction in muscle pain & fatigue, cognitive challenges, and cranial nerve palsies (esp. swallowing difficulties). My Certas valve remained at a setting of 3, where 6 months earlier it produced cognitive difficulty. With the prednisone, I overall appeared to be doing better. One of my best gauges for optimal shunt setting is how I feel the instant I awake in the a.m.. I also factor in my daytime cognitive and productivity levels, which after 6 weeks on prednisone, were improving. I kept some notes of this in my phone.
Discussion of Dura Enhancement in my Feb. 18, 2015 Brain Scan
Dura enhancement was identified in my Feb. 18, 2015 MRI w/ contrast study. It can represent infection, inflammation, CSF leak or shunt overdrainage, malignancy, or meningitis. And meningitis covers a broad spectrum of disorders, from infectious meningitis, to non infectious or aseptic meningitis, that includes Lyme disease and autoimmune disorders. Further below, I include links to web sites of medical documentation on this.
Shunt infection was ruled out in February 2015 via CSF culture. As I have a CNS shunt for hydrocephalus, dura enhancement can also represent shunt overdrainage or intracranial hypotension (ICH). But in these cases (referenced further below), the ventricles become “collapsed.” By contrast, my ventricles have been above normal size since 2011, except for the 13-day prednisone trial and collapse of my ventricles in June 2015 – which was after the dura inflammation was discovered. The June 2015 MRI finding would indicate either an inflammatory process or non-infectious or chronic meningitis. Chronic meningitis could also cause my ICP to become low. In Feb. 2015, it was determined to be “1 cm” or 10 mm. My Certas valve has been at the “2” setting since March 2013, while my ventricles have been gradually enlarging. There is no evidence of shunt obstruction.
A number of non-infectious or aseptic menigitis disorders can cause low ICP and dura inflammation. I have also undergone 12 revisions, and in Feb. 2012 developed an abdominal rash or fungal infection following endoscopy for that complete revision. My February 2015 CSF culture also reveals an abnormal WBC count. SEE these slides below.
A one month trial of Prednisone was initiated on June 11, 2015, for pain management and stopped early due to headache and abnormal MRI: 10mg/day week 1; 5mg /day week. In terms of pain reduction, prednisone provided a lot of relief. But, I developed low pressure headaches on day 13, and an urgent MRI brain scan revealed that my ventricles had drained out and nearly collapsed. While trying to ascertain this dramatic effect on my CNS system, I spoke to the manufacturer twice, discussed it with physicians, and undertook a considerable amount of online research.
It does not appear that Prednisone measurably alters CSF production or clearance to the degree to collapse my ventricles in 13 days. The more plausable explanation is that prednisone is an excellent anti-inflammatory agent, and my inflammed dura was a ripe target. This vastly improved my CSF clearance which resulted in my ventricles draining out with my Certas valve set at “2.” An alternate theory is that a metabolic disorder is causing the dura inflammation with a similar response to the Prednisone. Now I’m faced with the challenge of selecting the right setting for my Certas valve, not knowing how long, or significant, the effects of the Prednisone might last. My Certas valve was raised from a setting of “2” up to “3” for now. Additional information on Prednisone can be found below.
July 9, 2015 UPDATE:
The decrease in the size of my ventricles on my 6.24.15 MRI brain after just 13 days of Prednisone (10 mg first 7 days, 5 mg next 6 days) was dramatic. What is unclear, however, are the factors which contributed to this dramatic reduction, and the identification of a possible systemic inflammatory process. Below, my two MRIs reveal a dramatic change in size after only 13 days of prednisone. SEE more MRI images further below.
Seeking user data on the Effects of Prednisone on CSF Production & Clearance in Shunted Hydrocephalus
Cadista’s labeling states prednisone can raise intracranial pressure (ICP). But would it cause more CSF outflow and reduce the size of my ventricles? After speaking to them twice now, it appears this mechanical action on CSF is minimal. If it were more an issue, I think we’d see more published on this in the hydrocephalus population.
My reduction in ventricular size could have been furthered by an inadvertent change in the setting of my Codman Certas valve. However, I have no cause to think it did. It was learned on June 25, 2015, the day after my MRI, that my Certas valve was at the lowest “1” setting, from a “2” setting on February 26, 2015. The setting was not checked before my June 25th MRI. So, it is possible the inadvertent change occurred in the interim months and contributed to the reduction in ventricular size. But I have no data to suspect it!
I think the more likely explanation is reduction of inflammation in “aseptic meningitis,” that can include fungal infections & auto-immune disorders, and may be related to my Dec. 2011 onset of Hashimoto’s thyroiditis, and more recent cranial nerve complaints. But there are many types of aseptic or chronic meningitis.
The next two links are manufacturer required labeling and warnings information. It is vague as to any effect in raising ICP. Prednisone has been in use since about 1950, and falls under the earlier limited regulatory framework.
There has to be “hundreds” of patients with hydrocephalus who have taken prednisone over the years. Where is this data? This is what mHealth and data sharing can solve.
13 Day Trial/Event with Prednisone: (3) Preventable Failures
I offer the following critique since I have encountered so many failures in my care of the last 23 years. This is about preventable failures.
First, there should be more user information on prednisone with respect to CSF clearance in hydrocephalus. Apparently, it falls under older FDA guidance. Still manufacturers must act responsibly to provide information on the “health science of the times.”
Second, Codman released its Certas valve as MRI-safe. But from its subsequent recall and discovery of 0.6 percent suffering unintended reprogrammaing, it renders the Certas valve as “mislabeled.” And had I known this in 2012, I never would have selected for my Nov. 2012 revision. I would have selected the Miethke Gav valve. The Certas valve also “could” have contributed to the collapse of my ventricles in this Prednisone trial, if the setting were tripped earlier by some unknown magnetic field. In consideration, I would advocate suspect Certas valves be checked both BEFORE and AFTER an MRI – to rule out other interference sources of unintended reprogramming.
Third, Congress, the FDA, and the medical devices industry must act in good faith on the health sciences information of the times and modernize mHealth policy to allow for innovations in technology to help avert adverse prednisone and CNS shunt events. It seems quite clear that my experiences and poor outcomes would have been helped by better innovation, better data sharing, and more responsive FDA oversight.
I shared my user experience with the manufacturer of the prednisone, Prosar Corporation. I believe the addition of new mHealth information would greatly improve the efficacy and safety of this powerful, yet effective drug. The slide below lists some of its common adverse effects.
Prednisone Adverse Effects
One additional step that may have been helpful in assessing the anti-inflammatory effects of prednisone, would have been to obtain an MRI with contrast – to compare to the earlier February 2015 MRI with contrast scan. From research and discussions with the manufacturer, I am learning my ventricular reduction was the prednisone retarding action on CNS dura inflammation, rather than any normal mechanical action on CSF. Next, I would like to rule out chronic overdrainage as a cause of my dura inflammation, and pose this Question:
Would there not be a different anti-inflammatory response of prednisone on inflammed dura in rapidly reducing ventricular size on MRI – in aseptic meningitis versus chronic intracranial hypotension or ICH? Wouldn’t there be a distinction? Which one also has more associated cranial nerve palsies? Which syndrome would you expect a more dramatic reduction on MRI? Answering these questions will help determine its etiology! Below, I provide two new studies on Intracranial Hypotension or ICH, and I offer additional studies in the section Medical Reference Studies on Dura Enhancement later in this blog. I do not feel (as my nsg does) that I have ICH. I feel my increasing global pain, muscle spasms, cranial nerve palsies, and low ICP are due to an aseptic meningitis.
I can only speculate on how long the effect of the prednisone will last in retarding CNS inflammation, and in the best setting for my Certas valve. An mHealth or telesensor app for hydrocephalus would be helpful for logging this data. And a more definitive diagnosis would be helpful too. I used my earlier DiaCeph mhealth methods in determining that my ventricles had drained out, as documentation for ordering an urgent MRI.
Certas Valve Illustration
My Certas valve was raised to “3” to counter any lasting effects of the prednisone. There has been discussion of raising it to “4.” But my experiences at these higher settings have proven to cause ventriculomegaly and cognitive difficulties. My neurosurgeon suggested I could revise my Certas valve to a more stable valve. But, I feel these other questions must be answerred first. I continue to search for answers, for more details on my case study, and complaints. Knowledge should be a good thing!
May 26, 2015 UPDATE
I have enclosed my February 2015 CSF fluid culture report below which reveals changes in my white cell count. These findings might indicate a non-infectious or aseptic meningitis. But there are quite a few aseptic and auto immune disorders matching my CSF culture & dura enhancement results. I’ve undergone 12 shunt revisions. But in my February 2012 complete revision, I developed an odd abdominal rash or possible fungal infection from the endoscopy portion of the abdominal fenestrations. This is seen in the photo below.
Image showing abdominal fungal infection following endoscopy for complete VP shunt revision
Could above Feb. 2012 rash have migrated onto the peritoneal catheter and into my CNS system – causing the dura inflammtion and low ICP?
At this juncture, my neurologist was split between a diagnosis of chronic overdrainage syndromeand aseptic meningitis. But my neurosurgeon it was chronic overdrainage. I felt it is aseptic meningitis. So my primary care doctor has ordered TB and Lyme disease tests, which were negative, and placed me on a trial of prednisone, which caused the CSF to overdrain thru my shunt and nearly collapse my ventricles – indicative of an inflammatory syndrome. Given all of the possibilities, I feel it critical to rule out chronic overdrainage and fungal infection from the prednisone trial results discussed above.
Abnormal CSF Culture in Patient with Hydrocephalus and AutoImmune Myositis Complaints
I had been taking the prescription medication patch Exelon for nearly 8 weeks, and showed obvious improvement in cognitive function. But my health plan does not cover off-label use. Exelon was FDA approved only for memory problems related to Alzheimers Disease and Parkinsons Disease. So it’s use in hydrocephalus is “off-label.” Today 20% of all prescriptions are off-label. Below, is a photo of my last Exelon patch, which I think exemplifies our country’s senseless rationing of medicine and innovation.
Exelon Patch is FDA approved for memory impairment in Alzheimer’s and Parkinson’s Disease, but not for Hydrocephalus
April 20, 2015 UPDATE
Exome Sequence (genetic) testing came back negative for neuromuscular disorder. But the results did not include incidental findings – and might possibly miss a related disorder if their keywords are not inclusive enough. The focus has shifted back to rheumatology and the significance of the “dura enhancement” on my Feb. 18, 2015 scan below, where I’ve learned it can represent several types of aseptic or chronic meningitis.
My Feb. 23, 2015, CSF culture also identified several abnormal WBC levels that may coincide with dura inflammation. I obtained the full report by going online at the new mHealth platform of Quest Diagnostics, but was only able to obtain my most recent lab report without having to pay a $9 fee for earlier reports.
Dura enhancement on MRI can signal infection, inflammation, CSF leak, shunt overdrainage in hydrocephalus, malignancy, or autoimmune disorder.
My muscle cramping and fatigue complaints had been reported to my primary care doctor since 2009. And in 2015 I still have no answers. Clearly, new mHealth apps and changes in FDA regulations are needed in further today’s diagnostics and treatments. Below, I share more details on my experiences as a patient, patient advocate, and mHealth inventor.
Displaying some staples for those who like piercings.
Medical History
Since 1992, I’ve undergone 12 brain shunt revisions and numerous shunt malfunctions for hydrocephalus (1992 auto accident). That had been my primary health challenge until about 2012, when my shunt failed again, where I really felt fatigued and out of sorts, and was also diagnosed with Hashimoto’s thyroiditis. During that time, I began returning to bed in the middle of the day. My neuromuscular complaints of 35 years had been mild and managed well until 2011. And by Jan. 2012, I began to deteriorate and suffer more debilitating cramping, stiffness, and muscle pain, and bouts of hematuria, all of which then began occurring at lower thresholds of physical activity.
As Salvatore Iaconesidid in 2011, I put my case study online hoping for an open source medical cure. I prepared my brain scan images and case information as I have so often in my hydrocephalus consults(I provide global information on hydrocephalus). Prior to my 1992 injury, I spent 17 years as a nuclear medicine technologist, 10 of those years with my own company. Below, I also share details of my patient advocacyand public policy efforts, and my 17 year struggle to bring mHealth solutionsto the care and treatment of hydrocephalus. I also put on drumming and drum circleevents. I feel the availability of mHealth applications, such as my earlier DiaCeph Test for Hydrocephalus, would make a significant contribution to medical care and outcomes. Below, are my February 2015 brain scan images.
MRI brain scan shows significant dura enhancement with mild ventricular enlargement in this patient with hydrocephalusMRI brain scan shows significant dura enhancement in this patient with hydrocephalus
My Feb. 2015 MRI brain scan with contrast identifies “increased dura enhancement” diffusely spread over my brain and ventricular capsule. Dura enhancement can be caused by infection, inflammation, shunt overdrainage or CSF leak, aseptic meningitis, or auto immune disorder. In the past month, I’ve been undergoing further testing to try and determine the cause. A CSF culture was done to rule out infection, though it showed an abnormal white cell count. I presented myself to the emergency room hoping for new testing, and for radiology to review the above MRI scan and amend their report with additional findings. The dura enhancement MRI finding stands as “indeterminate.”
In my present case study, I seek expert input from neurologists, neurosurgeons, and neuro-radiologists that may lead to a diagnosis and treatment of my complaints. I was inspired by the story of the Italian artist and TEDx speaker, Salvatore Iaconesi, who put his medical case online, and it led to an open source cureof his cancer!
DiaCeph Test monitoring helps find the correct pressure setting for the Codman Certas valve in this hydrocephalus case study
Experiences with the Codman Certas CNS Shunt Valve
My Nov. 2012 shunt revision to the Codman Certas valvewas eventually optimized when the valve was set at 2, where it took 6 months of trial and error at different settings. My 2012 brain image above with still large ventricles was one month after surgery. My ventricular size and complaint reduction was achieved in part through monitoring with my DiaCeph Test paper forms and charts, and in email conversations and office visits with my neurosurgeon. This process would be much easier and more reliable (and cost effective) if there were an mHealth mobile phone or text app. It could be used worldwide.
History of Neuromuscular Disorder
This photo display depicts a several year gradual onset of drooping of the left side of the face.
On Oct. 13, 2016 I added the above 4-image childhood photo display showing drooping of the left side of my mouth, and perhaps left eye by age 16. My mouth drooping to the left has been pointed out repeated in recent years. So I sorted thru childhood photos to document when this began. According to the above photos, it was a “gradual onset” of facial palsy between ages 8-12. During those years, I was knocked unconscious for 5-10 minutes, suffered 2 different mouse bites, and a minor neck injury from sled-riding into a tree that I recall. I recall slowly developing physical limitations where I went from being the fastest and one of the toughest kids my age, to having a lot of difficulty running and playing sports.
At age 16, I suffered fainting episodes and was found to be very anemic, had onset of IBF (irritable bowel), and onset of sciatica in both legs. Visits to my family doctor during those years were unproductive. At age 20, I was advised to undergo reconstruction surgery of both knees by Dr. Noise, who was the Cincinnati Bengals head orthopedic surgeon and head of the Cincinnati General Hospital knee clinic. I never got the surgery. And later in California in 1980 at age 25, I was informed I had a peripheral neuropathy – per results of a muscle & nerve biopsy, and advised to get a desk job and discontinue sports.
In 1980, my neuromuscular complaints were primarily confined to my back and lower legs, which I learned to manage with exercise, nutrition, healing arts, and meditation, despite a bleak picture from my neurologist at that time. It is a long story, but eventually my personal health practices allowed me to overcome this ailment, and in 1981 led to overcoming most all of the disabling complaints and new healing and medical intuitive abilities detailed in this healing blog. For the next 11 years, I continued my health regimens up until my 1992 accident and onset of hydrocephalus. And after a couple years, was able to re-establish some level of routine to keep these complaints under control. In the photo below, I am age 34 and playing in a coach’s softball game with my son’s little league baseball. As you can see, I had become quite fit and muscularly developed despite the earlier 1981 diagnose – a surprise to all of my doctors. However, I faced continued episodes of IBF, anemia, and occasional bouts of (bilateral) sciatica.
In 1996, I learned some of my back pain was due to misaligned cranial faults per a very astute chiropractor. It was usually my left parietal cranial fault causing the back pain. In the years that followed, I learned to diagnose and adjust my cranial faults myself. In late 2012, cranial testing showed my entire head abnormal! I learned in 2015 I had pachymeningitis. To this day (Oct. 2016), it seems my global pain and cramping are related to my head, as I seem to get a little relief after adjusting my cranial bones.
Stephen Dolle serves it up at the plate in this coach’s softball game with Tustin Western Little League
It is unclear whether my present neuromuscular complaintsare due to this earlier neuropathy, or to a new disorder. But it would seem related to neuromuscular complaints that date back to childhood. The global cramping, pain, and stiffness has worsened to the point that it compromises my daily activities. And cramping and post exercise hematuria now occurs at a lower threshold of exercise than 3-5 years ago. Since 2009, on at least two occasions, I have gone into kidney failure. And, on 15 or so other ocassions, I developed hematuria after hand drumming and treated myself at home with forced hydration.
Rhabdomyolysis vs. Metabolic vs. AutoImmune Disorder
I was initially diagnosed as suffering from rhabdomyolysis following 3-4 hours of heavy hand drumming on a hot evening that led to 25% renal function and hospitalization in Sept. 2009. I’ve had to scale back my drumming and other physicial activities since. And the cramping, pain, and stiffneess has become more problematic, that I simply am not able to do the level of physical activities I had done for many years. I also have new vestibular complaints thought due to right middle ear dysfunction, which can be auto-immune or cranial nerve. I feel this is related to the dura enhancement, hydrocephalus, and aseptic meningitis. The WBC findings in my Feb. 23, 2015, CSF culture would seem to support this as well.
Below is a published study on rust colored urine and hematuria following prolonged periods of hand drumming. However, this is reported during drumming over a period of many hours and days. Here’s the link:
As I have been helping others around the world with specialized information on hydrocephalus and CNS shunts, I am hopeful there is a scientist or physician out there who can explain my medical findings. The Power of the Internet: an open source cure!
Normal sized ventricles after shunting with the Codman Certas valve optimized by DiaCeph Test monitoring in this case studyMRI with Contrast reveals slight ventricular enlargement in this patient shunted for Hydrocephalus
Analysis of CT & MRI Brain Images
This Feb. 18, 2015, MRI brain scan image above reveals slightly enlarged ventricles when compared to the Aug. 2014 and Aug. 2013 scans. But, there is no comparison MRI with contrast to compare to the Feb. 2015 “dura enhancement.” MRI with contrast is not normally done in the routine follow-up of hydrocephalus. There is a limited MRI with contrast done on Feb. 12, 2012, during that month’s hospitalization and shunt revision. But the images are T1 images, and the 2015 study is the standard T2 Flair images of the dura. So it’s unclear whether the 2012 study is appropriate for comparison. Regretably, I could not get the radiologist to review, compare, and comment further on these studies. I’ve inserted these 2012 MRI with contrast images below.
Selecting the correct CNS shunt valve and pressure setting in hydrocephalus requires detailed analysisSelecting the correct CNS shunt valve and pressure setting in hydrocephalus requires careful monitoring
My June, 11, 2010, brain scan image below was after revision to the brand new Low Pro Orbis Sigma II valve in Feb. 2010, which apparently had a specification problem. This Low Pro valve then drained my ventricles out in 4 months. And 2 weeks later, my shunt system obstructed and I began vomiting, and was again admitted to the hospital. Having experienced overdrainage, low intracranial pressure (ICP), and tiny ventricles several times before, I know what it feels like. I do not suspect overdrainage as the cause of my current MRI dura enhancement and complaints. But, I’d appreciate your feedback.
The ventricles nearly collapsed after the Miethke Pro Gav was lowered down to 1 in this 2011 patient.
Medical Reference Studies on Dura Enhancement
Medical studies report that “increased dura enhancement” is associated with a number of medical sequel, including, low intracranial pressure, infection, aseptic meningitis due to the side effects of certain drugs, and auto immune syndromes and brain metastases.
Below, is a very comprehensive 2007 study of dura enhancement:
Patterns of Contrast Enhancement in the Brain and Meninges
This next study on Medscape offers a concise overview of dura enhancement and its causes, but you must have a Medscape member login. It entifies MRIs of low intracranial pressure, and the (5) criteria typically seen to support the diagnosis:
With respect to infection as a possible cause of my dura enhancement, a CSF culture was obtained and this was ruled out. However, during the shunt tap, my neurosurgeon commented that my ICP was low, about “1” in the supine posture, and lower than in past years. It gave him pause to consider raising the setting on my Certas programmable valve. But in my opposition to this, I shared how my headaches, cognitive complaints, and balance were “worse” when the setting was higher and my ventricles larger. It took quite a bit of trial and error shunt monitoring and trial settings with the Certas valve over 2 and 1/2 years to find that a setting of “2” was most optimal for me. In addition, it is perplexing how my ventricles have become larger in the past 2 years with the same Certas valve setting of “2,” and no evidence of shunt obstruction. This finding would also be present during infection or inflammatory processes. But what?
My Aug. 1, 2013, MRI reveals my smallest ventricles since the Nov. 2012 revision to the Certas valve. I agree there is some extracranial CSF outside the brain, but it also occurred in my 2008 scan when I felt great, and in my 2010 and 2011 scans when the shunts overdrained to tiny ventricles, though I didn’t feel horible as I do now. Unfortunately, we don’t have MRIs with contrast studies from those studies. So there’s no way comparing dura enhancement. But, the Feb. 2012 MRI study is post contrast, and could be used for comparison. But the radiologist did not review it for comparison.
Aug. 2013 is also the smallest ventricles I have had since my 2012 revision, and earlier Miethke Pro Gav valve in 2011 where my ventricles became tiny when the valve was turned down to 1 (similar to the 2010 Orbis Sigma valve image). During instances of overdraining, I usually knew it from my complaints. I was also able to verify it with monitoring from my DiaCeph Test. I did not find evidence of overdrainage with my present Certas valve setting of 2, either by my complaints, or DiaCeph monitoring.
About a year after my Aug. 2013 brain scan, I began to experience increased pressure complaints, and a visit to my neurosurgeon’s office revealed that my Certas valve had lost its setting and changed from 2 up to 3, most likely from a Nov. 2014 MRI brain scan (I did not have the setting checked after this MRI). Even though the valve was set back to 2, my ventricles today are incrementally larger than 2013, and my last scan in Nov. 2014, which I feel suggests an aseptic CSF space syndrome or inflammation. And now the Feb. 23, 2015, CSF culture seems to confirm this. But specifically what syndrome?
My brain scan image below reveals very large ventricles one month after an auto accident and initial diagnosis of hydrocephalus in 1992. I was 37 at the time.
Initial 1992 MRI Brain Scan for Hydrocephalus and Ventricular Enlargement
My Global Outreach, Patient Advocacy, and mHealth for Hydrocephalus
As I shared earlier, I’ve been providing online information and support for the disorder, hydrocephalus, since about 1995. In 1996, as an affected user and patient advocate, I petitioned the U.S. Food and Drug Administration on unreported problems with Medtronic and Heyer-Schulte anti-siphon CNS shunts that dated back more than 10 years at that time. The following year, I designed and patented the DiaCeph mHealth monitoring method for monitoring of shunt malfunction in hydrocephalus. For DiaCeph, I created a weighted scoring method of clinical (complaint) markers that were specific to hydrocephalus and shunt performance.
When properly analyzed, DiaCeph data can give an accurate assessment of shunt performance and shunt malfunction. DiaCeph was also created in response to the false negative test findings associated with malpositioned (malfunctioning) Delta valves and anti-siphon devices. But eighteen years later, DiaCeph still remains on the shelf while the treatment of hydrocephalus and the lives of some two million Americans rests with 25 year old technology solutions. FDA and Congress have failed to allow new social networking and mHealth advances to go through, which would allow earlier reporting and intervention on problem medical devices.
My Original DiaCeph Test Markers (Parameters)
This slide shows the DiaCeph Test app’s weighted clinical markers for shunt malfunctions and performance.
The diagnostic difficulties and false negative findings with anti-siphon shunts were also at the center of my 1996 petition to the U.S. Food and Drug Administration (FDA).
I suspected my poor outcome was being caused by my Delta anti-siphon shunt, and I spent more than a year researching and writing the FDA petition, and another year on the DiaCeph mHealth solution – all in an effort to get corrective medical care and proper outcome. But, I was denied this for nearly 5 years.
The unusual shunt malfunctions identified in my petition were termed “functional obstructions” by Dr. Higashi et. al. who published the critical scientific paper on the topic in 1996. Higashi described how it occured with Medtronic and Heyer Schulte anti-siphon shunt systems. I had two Medtronic Delta anti-siphon shunts between 1992 and 1998, and eventually I was able to show my DiaCeph Test that my Delta valve was operating as a higher pressure valve than its specifications stated. I also referenced hidden manufacturer pressure flow charts on the devices.
In the 3-year period it took to author the FDA petition, design the DiaCeph Test, and advocate for the 1999 STAMP Conference, I became thoroughly familiar with anti-siphon shunts, shunt malfunctions and diagnostics, FDA codes & regulations, mHealth technology that didn’t yet exist, and hydrocephalus advocacy – where I had to learn where my efforts were being opposed, and who was behind it. Even the FDA!
Studies indicated anti-siphon shunt problems were affecting about 2 out out of every 5 users. In examining how many of the shunts were sold between the mid-1980s and as late as 2007, I estimated the device failures affected 5,000-10,000 patients per year, or well over 100,000 patients over this period. These oversights and subsequent FDA failures, in my view, then paved the way for more device failures with programmable shunts, and at least two other CNS shunt devices. And there were specific individuals and organizations particularly involved in hiding these failures. My FDA petition (23 pages total) link below is to a PDF file on my web site, and also as a window on Slideshare.net.
Why do I bring these experiences up? Because I feel neither the medical field, nor FDA, or any other group, properly addressed the issues that led to the earlier anti-siphon device failures. It took some 10 years for the FDA’s 1998 Ruling on my anti-siphon devices petition to become accepted science in the field. I believe the same poor QA (quality assurance) and FDA oversight that allowed these anti-siphon device problems to continue, led to problems with programmable shunts, an overall lack of progress with CNS shunts, and new chronic health problems in the hydrocephalus population today.
Hydrocephalus Care in U.S. compromised by Politics
1) Widespread failures with CNS shunts leading to a high incidence of surgical revisions, overuse of CT x-rays, and too many unexplained complications, physicians have come to accept poor outcomes in the treatment of hydrocephalus. As a patient advocate and inventor, I argue the problems are not in the patients, and not really with the shunt valves, rather, shunt valves with problems mfrs cover up! It leads to a lot of unnecessary confusion in care, and political views of poor outcomes rather than medical results; and
2) My managed care plan encourages physicians and facilities to cut and block care, and such practices are accepted as a part of the political practice of medicine. Similarly, in cases of widespread shunt device failures, physicians are discouraged in reporting these to FDA. And I believe if either I worked for the U.S. government, or an organization on the Obamacare exempt list, I would have a better plan and I might have a diagnosis and some treatment by now.
I have not included SS#, DOB, and other priviledged information – as are so often included and breached on medical sites today. I’ve just my health care!
I want readers to understand what I’ve been through in 23 years: 45 CT brain scans (and radiation exposure) and another 20 MRI scans, 12 shunt revisions (many of these surgeries were preventable), and the ill-effects of 75-100 shunt malfunctions.
Still – my story is nothing out of the ordinary. Some patients have had as many as 100 to 200 shunt revisions – and many CT scans, related radiation, and long term health problems due to device failures and poor FDA oversight.
Here are some of my more recent efforts to address problems in the care of hydrocephalus. In 2002, FDA had introduced new Post Market Surveillance for problem medical devices. I wrote to them with the required supporting guidance and asked them to apply this new guidance to CNS shunts. But, FDA denied my request as can be read in their letter below. Since then, there’s been a widespread increase in CNS shunt failures, which I believe is a direct result of FDA’s poor post market surveillance:
Stephen Dolle’s 2002 Request to FDA to include CNS shunts in New Post Market Surveillance
My experiences in living with hydrocephalus, have often left me helpless and feeling more like a “prisoner” than a patient.
All this helped me to put my medical case study online. I also host two (2) case hydrocephalus studies from my global efforts on hydrocephalus. Two high profile neurosurgeons with close ties to the Hydrocephalus Association oddly took issue with my involvement and reports, and refused to read them, all while they routinely allow manufacturer’s representatives in surgery with their patients to advise on CNS shunt implantation. Plus, I take issue with neurosurgeons, who become aware of problems with CNS shunts, but do NOT report to FDA!
I have complained about manufacturers not reporting problems with CNS shunt devices to FDA, and the presence of reps in patient surgeries, then provides additional opportunities to “mislead” user surgeons on issues with their devices.
My involvement, monitoring, and reports, then helps offset any mis-information and confusion by device manufacturers, and provides important diagnostic data on CNS shunt performance and shunt malfunctions. I think the patient and family should decide whether my role is needed. And if so, their physician had better read my reports.
In the first report, I created an algorithm to analyze the patient’s brain scans for signs of brain atrophy vs likely responsiveness to shunting. In the second report, I had the patient fill out paper forms with instructions that provided non invasive data on his condition and shunt performance. An mHealth app, if it were available, would accrue and direct the collection of this data, and help physicians in earlier and more accurate diagnosis, and earlier intervention and better outcomes in care.
Consult Report on Analysis of Brain Atrophy vs Responsiveness to Shunting in NPH
Today, there are no doubt thousands of hydrocephalus case studies similar to mine. It is estimated there are almost 2 million people in the U.S. today with hydrocephalus. And many more around the world. The advent of mHealth apps and social platform solutions would aid shunt monitoring and sharing of data on CNS shunt devices, greatly improving shunt outcomes. I would finish my Creative Brief on the DiaCeph Test App if I felt it might be produced and put into use. Let’s turn this around. Support mHealth!
The DiaCeph App Creative Brief details its design and unique features in monitoring of the disorder hydrocephalus
Poor reporting of problems with CNS shunts has led to an epidemic of poor care and outcomes in hydrocephalus, which has emerged as barriers to care and treatment – as I have shared. My launch and outreach with HydroPowered.org is but one way to combat this. In other instances, I feel we need not to be so tolerant.
In 2001, Fox Sports thought they’d use an ad campaign to exploit hydrocephalus, seemingly involving the Los Angeles Lakers and the Los Angeles Times.
The actor in the ad sported a Laker shirt while having a graphicly and grossly altered large head and caption that read, “It’s a lot to Absorb.” This was a full page ad in the Los Angeles Times.
I telephoned the LA Times, and then Fox Sports, and followed this up with letters. I felt their poor taste reflected a public disconnect with hydrocephalus, and lack of public awareness in poor outcomes. It was a low point for hydrocephalus.
In the months that followed, I shared my correspondence with Emily Fudge, then director of the Hydrocephalus Association. She promised to keep me in the loop. But months later, I realized I was misled and learned there was not going to be any outreach or appologies from Fox Sports. I suspect her organization received some money, however. This is the way it’s been. And this is why people like me need to speak out!
This 2001 Fox Sports campaign showed how its broadcast was a lot to absorb depicting a Laker fan with a hydrocephalic head.
Further below, I am pictured in Washington D.C. for the 1999 STAMP Conference on Hydrocephalus, which I helped to bring about. Somehow, my DiaCeph Testwas left out of the program – and I think that error contributed greatly to DiaCeph never being developed. After all, DiaCeph was conceived in response to false negative findings cited in my FDA petition, which FDA upheld. It is counter-intuitive for FDA not to support a solution to these shunt problems. And it was counter-intuitive not to invite the person to speak on the conference panel (me), who helped bring STAMP about, especially with all of my knowledge about hydrocephalus, my related petition research, innovations in shunt monitoring, and authoring of this important FDA petition.
It was FDA staff, Janine Morris, who I knew from numerous telephone calls concerning my efforts, and her boss, Larry Kessler, who then decided to withhold the FDA’s Sept. 1998 Ruling from the Federal Register – guaranteeing there’d be no news coverage of it – a move most unheard of, unless you’re Medtronic undergoing a major merger and $5B stock issue that month. That merger helped propel Medtronic and Sofamar Danek, and sealed the fate of 2 million Americans with hydrocephalus – assuring we’d face many more years of failed shunt devices.
Stephen Dolle in Wash DC attending the FDA STAMP Conference on Hydrocephalus
1999 Article in the Orange County Business Journal
Stephen Dolle is interviewed by the Orange County Business Journal for his FDA efforts and DiaCeph Test invention Page 1
Article Page 2
Stephen Dolle is interviewed by the Orange County Business Journal for his FDA efforts and DiaCeph Test invention Page 2
Today, the treatment of hydrocephalus with CNS shunt devices, regulated by the U.S. Food and Drug Administration, is in shambles. There are other areas too, where FDA oversight is in need of immediate attention and modernization, such as the user information and data on older drugs like Prednisone, and the availability of mHealth devices and social network platforms, all of which will aid in the resolution of problems with drugs and medical device safety.
But unusually high incidence of CNS shunt device failures and related (failed) FDA oversight should draw scrutiny – and be investigated for misconduct. These failures date back to before my 1996 Petition in the FDA’s failure to act on significant problems with CNS anti-siphon shunts.
Since the FDA’s 1998 ruling on my petition and related 1999 STAMP Conference, there has been a significant increase in unreported problems with CNS shunts, many requiring shunt revision. The most notable of these has been with programmable shunts. My current Certas shunt is in this class, and was recalled in 2013 less than a year after it was approved. It is only the second of many shunts with problems to be recalled.
FDA Conference Agenda – 1999 STAMP Conference on CNS Shunts for Hydrocephalus
I found the Hydrocephalus Assocation (now in Washington, D.C.) to be working with shunt manufacturers to avoid taking action on shunt problems, and to be working with FDA to not take any action, and that this relationship existed from 1996 to as late as 2013, and to some degree, still today.
The high incidence of CNS shunt failures led to poor progress in the care and treatment of hydrocephalus, and contributed to new health issues now being discovered from over-use of CT scanners, and new long term effects from an unusually high number of shunt revisions. I had discussed some of this with the renowned field inventor, John Holter, before his death. He and I were 100% in agreement.
No amount of money spent on research can fix these kinds of problems. As a patient and scientist, I am outraged. I’ve felt like a prisoner.
Below, I include information on Salvatore Iaconesi, who earlier placed his medical case online for open source care, and for his efforts and presentation at a TED Global event.
Salvatore Iaconesi’s 2012 TED Global Speech on Open Source Cure for Cancer
There needs to be a convening of scientists and government agencies to address the epidemic of sensory processing disorder (SPD) and lack of cognitive accessibility from harmful sounds for the estimated 20 percent of affected Americans.
And for those of you who enjoy outreach with hydrocephalus, I have a fun site for hydrocephalus at http://www.HydroPowered.org that I hope you find uplifting. One of my main characters and hydrocephalus super-heroes is none other than the Terminator, who comes complete with a self-correcting brain implant.
Check out my super-hero stories and other content atHydroPowered.org
The Terminator is the ultimate super-hero for adults and children affected by hydrocephalus.
If you would like me to speak or consult on mHealth applications, innovation and product development in hydrocephalus, or share any of my experiences, please contact me thru DolleCommunications.comor StephenDolle.com.
If you have experience with hydrocephalus or non-infectious (aseptic meningitis), or neuromuscular disorders, I’d appreciate your feedback on my case study. As I share, I have been providing global informaiton on hydrocephalus since about 1995. I prefer science and innovation over politics and the status quo.
I also post my case study here in support of 2015 Brain Awareness Week at http://www.dana.org/BAW
I look forward to hearing from you.
Thank you.
Stephen Dolle
Contact[at] DolleCommunications [dot] com
Tel. (949) 642-4592
Contact Stephen DolleStephen Dolle in Knots of Love beannie
This blog discusses mHealth mobile phone apps and accommodations for living with hydrocephalus.
I initially wrote this in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” But then following several large updates of content, on April 18, 2016, I changed the title to “Mobile Apps and Accommodations for Living with Hydrocephalus,” which I feel more aply represents its content now. I discuss many of the everyday challenges faced by persons living with hydrocephalus, and discuss my experiences with specific mHealth mobile appsand accommodations-solutions needed for everyday living. Hydrocephalus is a neurological disorder where CSF (cerebral spinal fluid) is not sufficiently cleared from within and around the surface of the brain – from a variety of etiologies. The fluid then abnormally collects in the brain’s ventricle compartment thereby exerting abnormal and often dangerous pressures on critical structures of the brain. It is normal to have CSF in the brain, as it is produced in the choroid plexus at a rate of about 20cc per hour. It’s primary purpose is in regulatiion of blood pressure (BP) and intracranial pressure (ICP). It also circulates up & down the spine and helps to circulate needed nutrients throughout the brain. Hydrocephalus then develops when the brain is not able to clear CSF fluid at the same rate it is produced, more often resulting in swelling of the ventricles – except in NPH, or normal pressure hydrocephalus, where there may be limited or no swelling, and normal amounts of pressure. Hydrocephalus occurs in utero and shortly after birth in 1 of every 1000 births. It also occurs in children from cysts and tumors, and somewhat also in adults. It occurs post trauma through subarachnoid bleeding, and idiopathicly, or naturally, from anatomical malformations of the brain and brain-stem, and from aging. Its overall prevalence in the U.S. is estimated at about 40,000 to 50,000 new cases each year. But due to its broad spectrum of causes or etiologies, hydrocephalus has been accepted into the rare diseases database. Many scientists continue to refer to hydrocephalus as a rare disease because of its association with genetic birth defects. The illustration below identifies where CSF is produced and circulated within the brain.
Brain Diagram of Ventricles often Enlarged in Hydrocephalus
DolleCommunications is my neurosciences blog I launched in 2010 after becoming affected by hydrocephalus following a 1992 auto accident and concussion. The photo of me below was taken in 1998 after one of the shunt surgeries where I had used my newly developed DiaCeph Test mHealth method to help direct replacement of the needed medical device components on my CNS shunt system.
Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition, which was then used to direct this 1998 shunt surgery
A CNS (central nervous system) shunt is the most common form of treatment for hydrocephalus. It is a two or three piece catheter with a one-way pressure valve that more often drains into the abdomen, or peritoneum, where it is termed a VP shunt. Alternately, it can drain into the heart (VA shunt), or draw fluid off the spinal canal into the abdomen (LP shunt). Over the last 20 years, a newer surgical procedure, a 3rd ventriculostomy, has been developed where a small opening is made in one of the ventricles (usually the 3rd), which if successful, allows for proper circulation and clearance around a an aqueduct blockage and can negate dependance on a CNS shunt. Only 10-15 percent of those with hydrocephalus will benefit from this procedure.
Great pic NHF members affected by hydrocephalus at a 2015 Orange County fundraiser.
It is common knowledge today that shunt technology is in need of modernization. Present day treatment outcomes (esp. with CNS shunts) often leave individuals with significant quality of life challenges with no shunt diagnostics to provide early warning shunt malfunction or accidental reprogramming, which is all to common and can result in brain damage and/or blindness. Since my onset in 1992, I’ve undergone 12 shunt revisions. Living with hydrocephalus and especially a CNS shunt presents a number of key challenges, most notably, shunt malfunctions and corrective surgery, but also frequent headaches, cognitive and memory difficulties, challenges with balance and hand/eye coordination, and difficulty adapting to a noisy and complex world where the necessary accommodations are widely unavailable today. I discuss some of the challenges and much needed accommodaitons for hydrocephalus further below.
Shunt Illustration for Hydrocephalus
I became involved as an FDA patient advocate and inventor in hydrocephalus several years after my onset of hydrocephalus. As a patient advocate, I authored a critical 1996 citizen’s petition to the Food and Drug Administration (FDA), plus made recommendations at the 1999 STAMP Conference in Bethesda MD. I’ve also written FDA position papers and recommendations for the oversight of shunt technology, and spoke at the 1999 STAMP Conference in Bethesda, Maryland.
Stephen Dolle in Washington, D.C. for the FDA’s Hydrocephalus STAMP Conference in 1999.
After writing my FDA petition on CNS anti-siphon shunts in 1996, my research led me to design and patent a non-invasive monitoring system for hydrocephalus, I named the DiaCeph Test. It initially was to run on a PDA. But I could not raise the necessary funding to make it. The DiaCeph Test today could be made into a mobile phone data and text app. Most of the development costs today is still from burdensome FDA guidance on mHealth apps. If it were available, it would revolutionize the care of hydrocephalus.
The DiaCeph App Creative Brief details its design and unique features in monitoring of the disorder hydrocephalus
In 2009, after many years of patient advocacy and answering inquiriesfrom affected patients, I began offering patient consults for a fee. Most of my patients have been those affected by complex hydrocephalus, and with unresolved challenges. Unresolved complaints and unsatisfactory outcomes are common in hydrocephalus – as high as 70 percent of all patients with hydrocephalus.
I am also very involved with weather apps and barometric pressure monitoring. A link to my primary blog on this is listed further below.
My biggest new discovery in this space comes from a study I undertook in 2017 with the MigraineX ear plugs used in the management of headache, but also in sound suppression. I found that insertion of MigraineX ear plugs before, and even after a harmful sound exposure has occurred, can lessen the associated headache, irritability, cognitive, and SPD complaints by 50% or more. So I carry my MigraineX ear plugs with me all the time to manage sound exposure & associated SPD complaints. They are particularly helpful amid noise from construction, machinery, malls, restaurants, theatre halls, and more. They sell for about $12 on Amazon and at many drug stores.
I have also been undertaking barometric pressure monitoring now with my Samsung phone’s built in barometric pressure sensor. The built in sensor can display sharp short term changes in pressure that weather sites & apps do not display. Most newer high end smart phones have this sensor built in. But you need an app to get the display. For this, I currently use uBarometer Pro. I have been able to correlate these short pressure changes as triggers of pain and headache.
The web link (web page) below describes how to obtain a consult for hydrocephalus, shunt monitoring, and mHealth monitoring with custom apps, and DiaCeph forms and user instructions.
In 2004, I became involved in drum circlesafter earlier playing piano, vocal work, and some stage & film. I initially used piano as a form of therapy for my challenges, then later guitar, then in 2004 percussion. I immediately realized a call to become more involved in drumming, and I began to take classes, and eventually help put on drum circle events. Today, I am very involved in drum circles and drumming for the brain & wellness and for disorders like hydrocephalus.
On Sept. 24th, 2015, I held two drumming workshops at the 2015 NHF Patient Power Conference in Anaheim, CA. My methods help with others with balance, coordination, cognition, and communications challenges. SEE info in the flyer below.
Seniors came alive in this 2010 drum circle for wellness and movement.
Drumming workshop for balance and movement challenges in living with hydrocephalus
One of the more problematic challenges with hydrocephalus, and most neurological disorders, is with cognitive accessibilityand it’s related sensory processing disorder, or SPD. These challenges are often disabiling and occur in hydrocephalus and neurological and learning disorders such as autism, ADHD, PTSD, Parkinson’s, stroke, post tumor, addiction, and even migraine. I have written about both fairly extensively. And own the domain CognitiveAccessibility.org– which I am yet to host a web site. I currently have it pointing to a supporting temporary page on my main web site.
COGNITIVE ACCESSIBILITY describes the array of accommodations and protections needed today by affected individuals. Without these protections, cognitive dysfunction and often one’s mental health state are easily exacerbated (made worse) by exposure and stress of unhealthful cognitive triggers. In fact, today there is a large lawsuit brought by families with autism against Disney World for failing to offer cognitive disability access to park rides. The science is real. I’ve experienced thousands of first hand accounts.
Common cognitive triggers include loud TV & radio commercials, loud helter skelter music, noisy construction equipment and machinery, bright lights, and powerful odors. When these triggers are present and not managed properly in public places, they restrict access by persons susceptable to it. Today we know that mental health and physical brain changes go hand in hand, meaning, one affects the other. This next blog describes many of the key sensory challenges in sensory processing disorder (SPD) and sensory challenges in hydrocephalus, and related disorders. Below, is also a recent diagram on the brain’s mechanisms involved in sensory processing disorder.
Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF
The protections cited are for public facilities where the triggers can often prevent an affected individual from safe and healthful use. It is said be a part of current disability law (i.e. autism v. Disney lawsuit). But rarely is enforced. Most people are unaware of the science and cause and effect of the triggers to behavioral melt-downs. In addittion to sensory protections, there needs to be better understanding of directions on UIs of web sites, signage, directions, product labels, etc. Today, I find you’re more likely to see a foreign language accommodation, than a cognitive disability one.
This blog features updated information on TSA Meet and Assist services for passengers with disabilities, and safety information on airport scanners for safe use by persons with programmable shunts for hydrocephalus. I also cover use of TSA Meet and Assist services for persons with cognitive disabilities, and information on the Air Carrier Access Act.
Airport scanners had earlier worried me as I live with a programmable CNS shunt for hydrocephalus, and I have been over-exposed to radiation from CT brain scans. With my Codman Certas CNS shunt valve, I do not go thru the metal detectors at airports or anywhere (even though some state magnetic field is safe for my shunt). I recommend that if you have any type of programmable CNS shunt, that you do not go thru metal detectors.
I’ve since updated this blog with newer information on the safe use of airport scanners.
The next two blogs list helpful information on mobile appsfor sensory processing disorder, as well as apps I use and recommend for living with hydrocephalus.
This next blog is a discussion of how to best select and design medical and mHealth apps. It comes from my many years of experience in mHealth & diagnostic medicine.
Perhaps my most creative public outreach is the fun HydroPowered.orgweb site for hydrocephalus. I created this in 2013 as a fun platform to share art, technology, and super-hero stories among those affected by hydrocephalus.
HydroPowered.org Share the Passion for Hydrocephalus
If I’ve left out any my blogs or apps, please let me know. If I may help you with hydrocephalus mobile apps, hydrocephalus consults, or drumming therapy for hydrocephalus, or if you are interested in furthering the development of the DiaCeph Test or other mobile apps for hydrocephalus, let me know. Contact me via my info below. Feel free to CLICK and SAVE my contact JPEG card.
Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner
In 2013, I obtained the HydroPowered.orgdomain and created a basic web site for sharing of fun, art, and culture on a technology platform for individuals and families affected by hydrocephalus. The image at top was created from one of my MRI brain scans, with editing from the Pic Say Pro app. I then added a tribute to Godfrey Houndsfield for his engineering vision, and EMI Labs(a division of EMI Records), for funding his project that led to the invention of the CT scanner– arguably the greatest medical invention we have to date.
I do all of this on a shoe-string budget. Still, I feel I could offer those affected by hydrocephalus a new and fun way to connect on art and fun topics.
I acquired the HydroPowered.orgweb site by researching domains that were available with the word “hydro,” short for hydrocephalus, which means water on the brain.
HydroPowered.org Share the Passion for Hydrocephalus
I created the above “blue swirl” image as my first logo from one of my MRI brain scans using the Pic Say Pro mobile app. Then, on my web site and Facebook group, I added additional art with the water or “hydro” theme, including, the Schick Hydro razor. The links below go to my web site and Facebook pages of “hydro” art.
I am hoping to create fun and cool art for hydrocephalus, separate from the disabiling realities of the condition. This came together one evening in May 2013, though my original idea started back at a hydrocephalus conference in the year 2000. Since 2013, I’ve added HydroPowered art and super-hero stories, and am looking to add more stories and characters.
Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org
I want to expand on the “super-hero” theme. I’ve written a few tie-in super hero stories on HydroPowered.org. I actually envision a series of HydroPowered super hero characters. I’ve also created a Facebook Fan Page so other “hydros” (that’s a term we often call each other) can post/share their art and stories.
I continue to brain storm ideas to get this out to the masses without having to spend a lot of money or time. I have made custom T-shirts and polo shirts at Vistaprint online. I’d even be willing to try a “daring PR stunt” if that would bring awareness to this cause.
Drumming workshop for balance and movement challenges in living with hydrocephalus
On Thursday Sept. 24, 2015, I along with HydroPowered.org will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.
In addition, I am trying to put together a “Drum-off for Hydrocephalus” to help raise awareness and funding for hydrocephalus.
Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.
In July 2015, I put together a photo collage with my NFL lookalike, JJ Watt, of the Houston Texans. Check out the similarities below of JJ to my photos at his age.
Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans
I am hoping this look-alike photo collage might create some social network interest in this cause. It was two years ago that I realized JJ & I look alike like. And he seems a lot like me too, with both of us growing up in the Mid-West. So, for Throwback Thursday, I put together this photo collage, and put it on several of the social platforms, hoping to bring attention to hydrocephalus and my efforts with HydroPowered.
Since 1985, I’ve provided quite a bit of outreach & CSR to Orange County area organizations. During the 1980s, my outreach and fundraising efforts were in little baseball, AYSO soccer, the Costa Mesa Chamber of Commerce, Hoag Memorial Hospital, community theatre, and arts in Costa Mesa and Laguna Beach. But since the late 1990s, my focus has shifted to hydrocephalus, and a variety of community causes I’ve undertaken with drumming, or drum circles. I also headed up the drumming Meetup, Orange County Drum Circle.
Stephen Dolle in Washington, D.C. for 1999 STAMP Conference
Since 1995, I’ve been a patient advocate for hydrocephalus, and have been answering patient, medical, CNS shunt, and FDA guidan questions on hydrocephalus. In 2009, I began offering consults in monitoring, since my DiaCeph Test for monitoring never became available. For several years, I was also a board member for the National Hydrocephalus Foundation, and helped with PR and fundraising.
In drum circle facilitation, I own enough instruments to put on drum circles for groups as large as 100 people. And I have facilitated groups as large as 250 drummers. I’ve been organizing and facilitating these drum circles over the last 7-8 years in spite of my own health challenges with hydrocephalus and CNS shunt brain surgeries from a 1992 auto accident, which now total 12 surgeries. But, it hasn’t stopped me from giving back, from being involved in CSR and being a pivitol part of Orange County area outreach. Come Sept. 2015, I’ll be putting on two drum circles at the National Hydrocephalus Foundation conference in Anaheim, CA.
Hydrocephalus Awareness Month 2014Stephen Dolle receives award at Costa Mesa Chamber event.
Back in the 1980s for several years, I served as an independent consultant and helped in sponsorship of a number of area sporting and community events, including, the 1992 Great American Race. 1998 was my first big fundraising endeavor after my injury, where I headed up field sponsorship for the Foothill High School baseball program. Still today, I feel I understand cause marketing, though I always appreciate others’ feedback. If I had not gotten in an auto accident in 1992 and developed hydrocephalus, my plan was to leave health care completely and transition into sports & entertainment agent services.
Drumming for Wellness at the UCI Women’s Wellness Day
There comes a time when even the best of us become recipients of outreach. Since 2012, I’ve been overwhelmed by complications with my hydrocephalus. In March 2015, this led me to I put my own case study and complications up on my blog, knowing all too well I could face scrutiny for it. I felt like I had no choice. I was between a rock and a hard spot, struggling with my health, and struggling to work and take care of myself. You can find it under March 2015 topics.
Pain management and mindfulness in Shunt Revision
I’d like HydroPowered.org to be a different take on hydrocephalus outreach, more about fun, cool, a mix of art, technology, and culture – with a super-hero theme too. I felt the platform might be helpful in fundraisers too much as the 2014 Summer ALS ICE Bucket Challenge that became a mainstream hit.
Since 2013, I have been brain storming and scouring the web for HydroPowered art and photos. It now includes hydropowered racing boats, monster waves, hydropowered damns, the Schick Hydro razor, and basketball. I’m an avid shooter and have even written a special blog on my insights into basketball.
Your Basketball Spirit Guide may help more than you know during Shooting
The plight of hydrocephalus, the stories, the data, and outcomes remain troubling today. It is the leading neurosurgical procedure in children, and affects individuals from in utero to very late in life. CNS shunts, which first came into use as its primary means of treatment in the 1950s, are still standard treatment today. Outcomes are often followed by disability, many numerous shunt malfunctions, and corrective surgeries. The average life of a shunt today is still about 5 years. Several leading programmable shunts in recent years have also been plagued with bizarre programming failures that added to the chaos. In fact, my own shunt implanted less than two years ago, has already been recalled. So hydrocephalus really needs a make-over!
As for famous individuals with hydrocephalus, the Reverand Billy Graham lived with NPH, a form of hydrocephalus, and a shunt for the last 8-10 years of his life. Rock & Roll guitarist, Dick Wagner of Alice Cooper, who passed away this past July, lived with hydrocephalus for several years. And former San Francisco 49ers player, George Visger, developed hydrocephalus after a series of concussions from football.
Incredible Hulk Inspires Kids and others with HydrocephalusAndroid DiaCeph App for Hydrocephalus would improve hydrocephalus care worldwide
As a neuroscientist who provides hydrocephalus monitoring and consults to families in this space, I am adament that CNS shunt technology, and all of its FDA regulations, are in need of an overhaul. We need to change the dynamics and philosophy of the medical field in hydrocephalus care, from “can’t do” to “yes, we will do!” Today, hydrocephalus care & CNS shunt technology remains dominated by a handful of old guard philosophy medical companies and physicians who have resisted the kind of progress we need for many years. Today we need more free-thinkers, more doers! More of an Apple or Google mindset. The same place, same thing, is not producing the kind of advances we need.
I also realize hydrocephalus research is in need of funding, and I believe the HydroPowered platform can play a pivitol role in this going forward. I can compare our plight a bit similar to that of spinal cord injury (SPI) at thetime actor Christopher Reeves became paralyzed. In his case, he almost single-handedly changed the dynamics & funding of SCI. In his brilliant campaign, he initially “called out” the old guard of SCI work that was holding back progress, and then went on to raise money & create progress in SCI treatment that’s not really been seen in any other disorder outside of AIDs.
For several years back in the 1990s, Christopher Reeves had been one of the highest paid speakers in the world, with both political parties vying for him to appear at their conventions. Those were “wow” moments in PR and cause marketing! Today, football players living with SCI, owe vastly improved outcomes to the dynamic efforts of Christopher Reeves.
Below, is my HydroPowered web site & Facebook links. Take a moment to read over it.
Drumming workshop for balance and movement challenges in living with hydrocephalus
OK. This Thursday Sept. 24, 2015 I will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.
Notre Dame Drumline Friday Afternoon Drummers Circle
I am offering to organize a “DRUM OFF FOR HYDROCEPHALUS” and have it VIDEOTAPED and posted on YouTube. Then, I’d be looking for others around the world affected by hydrocephalus, or interested in helping the cause, to organize their own drum circle with instruments of their culture and region, and post a video of their DRUM-OFF on YouTube – so we may have an international conversation on hydrocephalus. I’ve enclosed the video of the Notre Dame drum off for breast cancer as an example.
I had hoped to do this at the 2015 NHF Conference on Sept. 24th or 25th in Anaheim, CA. But I’m informed the schedule cannot fit it in. We have hydrocephalus groups around the world, and in remote places like Nigeria. I’d love to involve our global “hydro brothers & sisters” in a global “drum off for hydrocephalus.” I envision it as a bit like “Playing for Change” too. And if someone wanted to edit some of the drum segments and create one master song, I’d be very excited for that.
Along with the Drum-off for Hydrocephalus, I’d like to also feature the web site HydroPowered.org – which I created two years ago to further hydrocephalus awareness, and to allow those affected by hydrocephalus to come together to share art, technology, super hero stories, and fun stuff separate from their medical stories.
I have personally been living with the disorder hydrocephalus since 1992, and I would be participating in this as organizer, drummer, facilitator, and affected patient. As a patient advocate, I’ve been involved in advocacy, public policy, and the development of mHealth technology hydrocephalus. Still today it remains complicated by a lack of medical research and innovation in new treatments, CNS shunt and diagnostic technology, and awareness.
HydroPowered.org Share the Passion for Hydrocephalus
So I need an alternative 2015 venue to hold the Drum-off for Hydrocephalus if I want it done this year. I have enough instruments for 75-100 people, though we ideally only need 30-50 playing. And I will invite 10 or so experienced drummers to help in supporting the drumming. I need to have someone be responsible for videotaping the performance, and perhaps some interviews. I and others I know have video cameras, or even a phone camera might do. But editing the video takes some skill. I can only do basic editing for posting on YouTube. I will also need to have a banner made (VistaPrint) saying “Hydrocephalus Drum-Off, Orange County, CA.” And this can be displayed with the video on YouTube. Once I have a date and location selected, I can post updates here and on http://www.HydroPowered.org site and Facebook group.
I will still be offering two drumming workshops at the National Hydrocephalus Foundation PATIENT POWER conference on Sept. 24th 2015. This would allow individuals and families affected by hydrocephalus to come together and experience the POWER of the drum, and the POWER of connectedness for hydrocephalus.
Below, is a video from a drum circle I put on in 2012 for Young Onset Parkinson’s Disease, and it was part of the 2012 Young Onset Parkinson’s Conference in Orange County, CA.
OC Conference 2012 030.MOV
Drumming for wellness helps seniors and those facing chronic illnessDrum Circles make for great Children’s Activity as young as age 3.
Hydrocephalus effects about 1 in 1000 infants & young children, and occurs in seniors as the disorder NPH (normal pressure hydrocephalus), and it also occurs to others following head trauma, hemorage, tumor, cyst, and often occurs secondary to spina bifida, Dandy-Walker, Arnold-Chiari, and meningitis. In children, it is the most commonly performed neurosurgical procedure. It poses numerous diagnostic challenges to physicians, families, and those living with it. Hydrocephalus is treated the same around the world, mostly by implanting a CNS shunt. So, a mHealth mobile or software app would help individuals in the U.S. as well as developing countries like Africa & S. America.
Seniors came alive to play and dance during this 2010 drum circle at the Costa Mesa senior center.Drumming is a great tool in teambuilding and in engaging those around you
In developing countries, hydrocephalus is even more tragic and fatal. Doctors without borders and other organizations, often travel to developing countries to perform initial surgeries. But since shunt failure is a common occurance, follow up diagnostics and availability to corrective surgery presents additional challenges. The availability of a mobile software app to collect and document developing patient status information would help save lives and minimize shunt complications. A diagnostic mobile app could offer early critical diagnostic information on device function and patient status.
Stephen Dolle in Washington, D.C. for 1999 STAMP Conference
The purpose of the “Hydrocephalus Drum-Off” is to raise awareness of hydrocephalus, and to help with fundraising and funding of hydrocephalus research in the U.S. and worldwide.
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.
Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache
Migraine and weather related headaches affect some 15% or more of the population. In more recent years, much has been written about the connection between weather patterns and headache, where falling barometric pressure and rising humidity can often trigger migraine headaches, which are “low pressure” headaches characterized by dilated blood vessels in the brain. The most popular over the counter migraine medicine, Excedrin, then combines aspirin or Tylenol with caffeine (as a vasoconstrictor) to combat this medical sequel of dilated blood vessels. But, it is helpful to know during initial onset of a headache, if it in fact is barometric pressure induced so that you choose the right medicine and treatment.
I personally live with the medical condition hydrocephalus, and as a neuroscientist, I provide patient consults, neurological monitoring, advise on the role of technology, and provide drum circle workshops for health & wellness. Still, for me and so many other Americans, migraine headache and weather related triggers, pose regular challenges. So I turn to technology for a solution.
Over the last several years, I have come to use two separate weather sources for obtaining the much needed correlating weather data. They are:
Elecont is a high tech mobile phone weather app It’s $4.99 on Android and $3.99 on Apple stores. I have FREE access codes to download the Android version.
The barometric pressure data that these sites and apps offer is then extraordinarily useful in monitoring and pain management of migraine headaches, especially in hydrocephalus. I’ve inserted 3 weather data photos here, if they load correctly. They include a jpeg image of barometric pressure up thru 6pm on March 23, 2014, showing a rapid rise in pressure between 8am and 11am, which can trigger a high pressure headache, which would be more unique I think for persons with hydrocephalus. At 11am, I felt it likely was the trigger of that headache on that morning. Also, a 2nd bit of data that was helpful was the rising humidity at 11am, known to also act as a trigger for headache.
I didn’t save the inserted until about 6pm that day, which shows the pressure leveling off by 12 noon. This leveling also corresponded to a leveling off of my headache, though it took 2-3 hours, or around 3pm. I had been noticing over the last several months that I was suffering from headaches often as the barometric pressure was rising. So when I saw the big spike by 11am, I knew I was in for a rough headache day, and adjusted my medication & activity schedule accordingly. I was happy that the pressure leveled off and stayed level for the afternoon, as it allowed my headache to dissipate by 3pm.
More often, migraine will be triggered by “falling” barometric pressure. There is specific diagnostic significance for those who might experience headache during a rising barometric pressure. I can’t advise you here without any supporting medical history. So I recommend you speak to your neurologist or neurosurgeon as to the significance of your pressure correlation.
In hydrocephalus, a headache from rising pressure would indicate either an increased sensitivity to pressure changes from hydrocephalus that is not well arrested after shunting or ETV, and/or during periods of increased intracranial pressure, or ICP. It is conceivable that a headache response from a high pressure weather front might also indicate “shunt malfunction” in hydrocephalus, should you not normally get a headache from rising pressure. what was also significant in my case on this day, is that as soon as the pressure leveled off, so did my headache, though by about two hours. The dissipation with leveling pressure also served to confirm the weather correlation. As I’ve been using this weather data for 3-4 years now, the correlation then served as biofeedback in management experience.
I am working on developing a mobile app for hydrocephalus monitoring, called the DiaCeph Test, which will incorporate weather data in the interface and during monitoring, to correlate and help in management of headache from barometric pressure weather changes. I first applied for patent for my DiaCeph Test way back in 1997, and was considered a visionary for this, and apps did not yet exist. It was going to run as a stand-alone PDA. So, I was one of the earliest pioneers of mobile apps, before they were even possible. Also around that time, scientists at the University of Pittsburgh and Henry Ford Center in Detroit, introduced a software method of monitoring sports concussion, called the Impact Test.
Please contact me if you are interested in helping to develop these neurological apps.
May you ride out your headaches like a surfer thru a wave!
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.
The DiaCeph paper methodology could easily be produced as a mobile data app.
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.
Knowledge is Power
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.
Brain Diagram of Ventricles often Enlarged in Hydrocephalus
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.
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
Below, are the same (2) DiaCeph Monitoring reportsfrom above, but on my web site as a web page (Report #1), and as PDF files (Reports #1 & #2) for download:
I write about mHealth mobile apps for managing neurological disorders and hydrocephalus. Below is a popular blog on managing migraine with weather apps.
The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.
This next blog also contains links to many of the mobile appsI have used or recommend for hydrocephalus and related neurological disorders. You will find the links at the bottom of the blog.
Below is a tandem DiaCeph Test – Single ICP Tap studyI published in 2003, where my DiaCeph Test monitoringI undertook accurately corroborated ICP readingsdone by my neurosurgeon.
DolleCommunications Blog 