NEED A SHUNT? GOT A SHUNT THAT JUST DOESN’T SEEM TO BE WORKING?
WATCH THIS VIDEO
I got my first shunt in March 2017. It was miserable, not because there was a problem with the shunt itself, but because I had CSF leakage around the proximal catheter under my scalp. This absolutely wrecked the ability of the shunt to regulate my ICP. I transitioned rapidly to unstable Intracranial HYPOtension, which I found to be as equally miserable as Intracranial Hypotension in its own special ways.
Finally, after tests and experiments, Dr. Kenneth Liu figured out I was leaking CSF around my shunt catheter. The technical term is “external communicating hydrocephalus”; I just called it “Juice Box Head” after the way juice leaks around the straw of those drink boxes and pouches if you squeeze them too hard.
The following video is very tongue in cheek. It’s meant to be. I needed short, sweet, not uber-technical, which I can do all too well. Disclaimers: the scale of the burr hole and “catheter” (IV tubing) are larger than the actual items. The “Bone Plaster” I used is plumber’s putty. The “thin titanium plate” is a piece of galvanized flashing. This video was shot in on my dining room table where I was both “surgeon” and “camera operator” (hence, the shaky sections). That said, it is an accurate representation of how Dr. Liu solved my leak.
Why am I showing this? Because the difference between leak and no leak was immediately noticeable, and the magnitude of improvement was nothing short of miraculous (yes, I used the “M” word). It has made all the difference in the world for me to have a shunt that actual controls my ICP without an unwanted leak that renders the shunt all but useless. Big Statement: I am fairly certain it is an issue for other shunt patients, or may become an issue for those who need a shunt. I cannot emphasize the importance of attention to this simple process, nor the risk being taken by ignoring it. I know of whence I speak on many levels…
Without further ado, the masterpiece. Let it load, hit the full screen icon in the lower left hand corner, & turn it up – the audio worked out supernaturally well with this bit:
I received a question from Yvette on ShuntWhisperer:
“Does moving to a sunnier, dry climate at higher elevation help? Or maybe to the coast to help alleviate the barometric pressure? Or is there no escape?”
Short answer: Yes. Heck yes, there is escape. I started doing something similar last summer, moving to higher altitudes/lower barometric pressures to escape the oppressive heat/humidity of Central Virginia, conditions that were robbing of my ability to function. I continue to do so as needed, finding that driving to and staying in an areas a mere 1000 ft higher with a barometric pressure 40 or more millibars lower changed my condition like flipping a switch. It was uncanny.
Let me elaborate on why certain areas might be beneficial for ICPDD sufferers. Most of us are puppets to changes in barometric pressure that accompany normal weather changes. Any neurosurgeon/neurologist that tells you that barometric pressure cannot possibly affect ICP is ignorant in a a dangerous fashion, IMHO. Barometric pressure changes are very significant; as an example, here in Virginia, the barometer changes 20-30 mb (millibars) every 7-10 days as weather fronts pass through. Looking at the significance of that change, we find that ONE millibar is the equivalent of TEN mm of water; thus, a change of 30 millibars exerts an increase on tissues exposed to air pressure of 300 mm H20. Now, look at the area of tissues exposed to this pressure: skin and the lining of the lungs are the chief areas. The average person has a surface are of skin of 15-20 square feet. The lungs, however, have a huge surface area of tissue, 80-100 square YARDS, translating to 720-900 square feet; add in the surface area of the skin, and we can safely assume an affected body surface area of up to 1000 square feet. That barometric pressure change of 300mm water per square inch from a mere weather phenomenon converts to a “mere” 0.428 lb/square inch, or 61.6 lb/square foot (!). Apply that to the area of the skin and lungs, and this change in weather causes a change in pressure on skin and lungs of…1000 square feet of tissue filled with blood vessels being pressed against the body with a force of 0.428 lb/square inch, 61.6 total lbs/square foot, and:
61,600 lbs of total pressure exerted on the 3000 square feet of skin and lungs. At the high end. Variable of skin area to body volume enter, but this is significant. It raises intra-abdominal and intra-thoracic pressures, condition known to decrease vascular drainiage from the skull; ICP increases and Starling Resistor functions become factors…all of it bad for ICPDD patients.
Ultimately, I believe these changes affect the dynamics of blood sequestration inside long bones and the skull. Blood and other fluids are pushed from the vessel in the skin and lungs and end up trapped in areas where atmospheric pressure doesn’t reach. Teeth as well, if you want to be technically accurate. Is this the mechanism that affects our symptoms? Not certain, but it is a good argument, because almost every ICPDD patient relates that their ICP varies directly with changes in barometric pressure. Shunted patients have a different sent of symptoms than non-shunted patients; increases in barometric pressure cause increased CSF flow out of my shunt.
Now let’s throw in another wrinkle: atmospheric infrasound. Severe weather systems produce very low frequency pressure waves that can travel hundreds of miles at hundreds of miles an hour. Infrasound is known to be deleterious to physical and mental human physiology. Last summer, after I got my shunt, I had just begun to make the connection between barometric pressure and my symptoms, but I also noticed something else: there were times when I would feel badly when there was a severe storm approaching two to three days out. This was well before any changes in the barometer associated with these fronts occurred. I remarked to Trina there was something about these storms, especially those with severe thunderstorms and tornadoes that was beating me down, and it wasn’t barometric pressure or heat or anything I could put finger on. It was worse after my shunt for some reason. Then I happened across and article on Atmospheric Infrasound and Associated Effects on Human Physiology. The study set up elaborate devices to measure “sound” too low in frequency to hear, but recognized to affect blood flow, cognition, heart rhythm – pretty much everything in the human body to one degree or another. Effects were chiefly psychologic, creating feelings of despair, depression, hallucinations, and more. Changes in heart rhythm were notedFurther, athletic and cognitive performance fell off dramatically as this infrasound became stronger. I believed this was the source of my peculiar response to storms two days away.
Often, there was always a storm two days away. But it was the bad ones carrying thunderstorms and tornadic activity that beat me down the worst.
Recently I moved to a location in the isolation of the mountains. Paradise, to be sure, but at the elevation and location, a lot of winds. Stronger winds tended to make me feel poorly. Then, in mid-April, the strangest, strongest confluence of weather factors came together to leave me so sick and weak I couldn’t get out of the chair I was sitting in. I remember strapping on my CPAP mask and turning on my oxygen generator at 5:30 pm. I woke up at 7 am. The storm system had dumped 6 inches of rain in our area and I’m told brought epic lighting. I don’t remember a bit of it, and I love a good lightning show. My house has a metal roof, and I don’t remember any sound of rain on the tin roof. The storm spawned several tornadoes to the south. I was essentially passed out in my chair with an oxygen mask on. I managed to screenshot the system before I passed out:
Back to Yvette’s question about moving to an area that might be more suitable to persons susceptible to mere changes in the weather. The answer is a definite yes, and IMHO probably and worthy of taking a couple of weeks vacation to such a place. Such areas in the United States are going to be confined to areas west of what is known as the “tornado line”, where cool dry air moving east from the Rocky Mountains collides with warm moist air being pushed up out of the Gulf of Mexico, spawning thunderstorms of epic proportions and of course, tornados. I had researched where the most stable weather areas in the states were, and the southwest fit the bill perfectly, most especially Arizona with its Medical Marijuana program. I lost Trina before we ever had the chance to go to Concho for a few weeks to see if improvements in our symptoms would make the move and change in lifestyle worthwhile. New Mexico and Nevada also seem to be areas of opportunity, with changes in barometric pressure a mere 5-10 mb every two weeks as opposed to the average 20-30 every 7-10 day cycle we were seeing here in Virginia. As far as coastal areas are concerned, I’d say it depends on whether a person can tolerate the higher barometric pressures seen at sea level, and if the coastal area is in a stable area with regards to weather. In short, ICPDD patients all have different phsyiologies; shunts/stents further complicate the picture. As far as I’m concerned, I’m ready to go live anyplace that works, even if it means being a migrant nomad, sleeping on a cot in the back of machine shop, pushing a broom and emptying trash in exchange for a degree of improved physical comfort.
My ICPDD has taken everything from me except for my life. Some days I sincerely wonder if that is the day that something pops/kinks/blocks/clusterforks and I’m off to maybe see my sweetheart again. Until then, I’ll continue putting my experience and research here. Right now I’m extremely interested in infrasound, and a quirk in its properties that would allow merely wearing headphones with music to cancel it out. Not sure yet, but right now a mix of Jack White/Lynyrd Skynyrd/Gangstagrass beat in my tinnitus ridden ears, and I feel as good as I usually feel.
I’m going to head to Eastern AZ later this summer once I work out the AirBnB and how to get there on the cheap. Maybe FedEx myself in a large box. At any rate, Yvette, Yes, moving to a different climate, probably dryer, cooler, higher in elevation, with boring weather patterns, does seem to help ICPDD patients. Dr. Kenneth Liu at Penn State Neurologic Services in Hershey, PA, told me at an appointment earlier this week that some of his patients have relocated to AZ for its climate, with satisfactory result.
More will come. The more I research the topic of infrasound, the more convinced I become of it’s significance to ICPDD patients. I told another contact I was at a point where I need to start a MindMap, as I believe I may have found another piece to the puzzle of ICPDDs vs. Weather, a piece called density altitude. All this is little more that intuition and gut feeling trying it interpret what I’m personally experiencing. In the meantime, I’d like to ask for prayers as I leave the house where Trina and I lived for a different place, picking through the pieces of our life together cut short by her ICPDD. Prayers and comfort to all, and prayers to our doctors for insight, compassion, and vision as they seek to treat a condition that seems completely elusive and not as rare as it represented to be.
In service to God, in memory of Trina; may these words help others.
You’re always in my heart, sweetheart. I miss you every moment.